Despite Lupus

Lupus doctor appointments - three months and counting. Jinx no more!

2012-02-10T08:00:00.000-05:00

About a year ago, I announced the fact that for the firsttime in my lupus tenure, I was able to go a full 3 months between appointments. It was a personal best, and I was thrilled to havereached the new benchmark. (That big break only lasted once, but it was still exciting.) The 3-month prospect had happened a few years before that, but a few days after I posted the blog about going 3 months between appointments, mydoctor called, and revoked the 3 month hiatus. Bum deal! Turned out at that time, my proteinlevels, etc. were up, and so he ordered a 24-hour urine test, and asked me to comeback after my test results came in. The three month gap was not meant to be –and I contently settled back into my 2 months-between-appointments routine.

Until now.

Just last week, my doctor suggested that once again, we givethe 3-month gap a try. And I’m up for it! I knowto call if something comes up, but for now, I think seeing him in three monthstime will be a real treat. Of course, when I was making my appointment with thereceptionist at the end of the appointment, I said, “Okay, three months – thatmust be like June or July, right?” Not quite. It only gets me to May. Butthat’s still an extra month off.

And if my doctor calls in three days to say that my bloodwork, UA sample, or the like are abnormal and need retesting, well, so be it.I’ll enjoy the gap while I can, and not worry about the power of the jinx.

At least I’ll try not to!

Lupus: Down and out and caring for the kids – an objective perspective.

2012-02-08T08:00:00.000-05:00

Johnny’s bout of the flu bug is finally coming to an end.He’s still not 100%, but as he declared, the true benchmark of his wellness isthat he can do voices while reading books to the girls. And his funny little voicesare back…so life is slowly returning to normal.

But having watched him struggle so, I realized once againhow hard it would be to take care of the girls if I were sick. I’ve neverunderestimated how difficult it must be for those moms and dads out there whose diseases are flaring…I know how lucky I’ve been to have kept those flaresat bay since the girls have been around. But knowing how hard Johnny was trying to manage the "fun, upbeat Dad" routine, despite his illness, I realize that it would be my own expectations as a supermom that I would have to have deal with.

I was away for a couple of days while he was sick, and I encouraged him to find ways to conservehis energy…so that he would somehow find a way of get up the next morning and do it all over again. He figured out a few things for himself, of course, but I think he appreciated the suggestions. Things like letting the girls play by themselves as long asthey were within ear shot (and safe, of course), watching as many movies asthey could, or recruiting the neighbor girls to come and help seemed like themost obvious, practical options for a sick parent to employ. And yet – if Iwere in his shoes, I know how hard it would be to make those things happenwithout feeling guilty – without feeling like I was shirking my responsibility– without feeling as if I was letting mygirls down.

But should the time come to pass, I’ll just think of Johnny.I’ll remember how simple it was to dole out that advice, and how sensible it seemed for him to do whatever he could to rest and take it easy. He did pretty well –and most importantly he made it through – but from an objective perspective, Iknow he could have done more (or is that less?) to give himself abreak.

Most importantly, however, I know I could have done more.I’d toyed with the idea of scheduling Paola, our au pair, to work on theweekend while I was away, but when I asked him if he wanted her to work, hesaid no. He was sure he’d feel better by the time the weekend came. But as acaretaker, and as someone who’s been there, I should have known. I should have ignored his positivity and hopefulness (that I so often have exuded), andlined up the babysitter so that the option was already in place. It wouldn’t have been on him to decide that he was really too sick - the decision would have already been made for him. So that when he woke up feeling absolutely awful, he wasn’t forced into putting on a happy face when he was feeling anything but. (And how many times have we lupites done that?)

So caretakers, take note: while you must tread carefullywhen it comes to inserting yourself into the life of your loved ones (which is another post...), I dobelieve that trying to anticipate their needs and having contingency plansin place are essential. You can't force your plans, of course, but having assistance ready and pre-arranged is going to be awfully hard for your sickly lovedone to refuse.

At least it would be for me!

Another false alarm - this time, my gut doesn't lie!

2012-02-06T08:00:00.000-05:00

A few weeks ago, I blogged about a series of false alarms I had experienced - one with some fatigue, another with my website - both of which resolved themselves fairly quickly. I had another one to add to the list, but I didn't want to mention it until the resolution was confirmed. So here's the latest (and hopefully last) false alarm for the season!

First - let me ask you - where's the easiest place for you to take your pulse? Your wrist? Perhaps your neck? Those work for me, too - but the absolute easiest, i.e. strongest pulse point for me is in my stomach. That's right - I can actually press two fingers lightly into my stomach right above my belly button, and presto! I feel the strongest heartbeat you can imagine. It's my aorta, of course, and I've been able to feel my pulse there for years. Even as a kid I could do it. Of course, my body structure has evolved over time - having made room for two bambinos, subsequent weight gain and weight loss - but that easily-accessible heartbeat hasn't budged. In fact, that pulse point's only gotten stronger since giving birth to Bernadette. And at one of my last appointments, I decided to ask about it.

And ask, I did. My rheumatologist did a physical exam, and found the heartbeat to be quite strong - much stronger than he expected. So much so, that he thought something was amiss. He confirmed that it's irregular for the aorta to be that close to the surface of the stomach - and suspected an enlargement - indicating an aneurysm. Not exactly what you want to hear, right?

He ordered an ultrasound, of course...but I still wasn't too worried. After all, this wasn't something new. But knowing my unpredictable body as well as I do, I decided not to write it off completely until the results of the test were in.

But I didn't panic. Although I was 90% sure my aorta was fine, I figured if there was something wrong - better to figure it out now, rather than let that aneurysm do unnecessary damage. I admit that it helped to have the sonographer hint that she'd tested for this kind of thing in people built like me before, most often with negative (meaning good) results. But I still give myself a pat on the back for remaining cool, calm and collected. A honed skill from years of waiting for test results past, I'm sure. But her hint was a nice tide-me-over until I got the word from my doctor directly - no aneurysm in sight - just an inordinately close-to-the-surface aorta. Good for pulses, bad for knife fights, I suppose. I'll be sure to make a note.

So that's that. Another false alarm under my belt - and just another opportunity to learn not to panic!

The fingernails don't lie

2012-02-03T08:00:00.000-05:00

With 11 years of lupus under my belt, and a chronic control spread sheet to go along with it, I tend to have a pretty good handle on when I'm in "good health" and when I'm not. Thankfully, I've had many more healthy trends than not - so I haven't had much to track in the old spreadsheet as of late. But one thing I was keeping my eye on was my weight. When I get sick - I tend to lose my appetite. And with no appetite, comes weight loss. And last fall, I was losing weight. Not a ton - more than 5 pounds, less than 15 - but it was significant enough that I noticed. And my pants noticed. And most importantly, my parents noticed. And when they notice, I have to sit up and listen.

So I did. I mentioned it to my doctor, and we watched it carefully. We kept my appointments close together so that he could monitor things frequently. And I kept an eye on my symptoms, which, thankfully, were non-existent. There was no joint pain, no swelling, no increased protein at all. There was absolutely no sign that lupus was a foot. Just the weight loss.

And the nails.

Turns out, my fingernails weren't growing either. It wasn't that they were growing and peeling, or breaking, or chipping...it's just that they weren't growing. At all. And this coincidence has happened before - in fact a handful of times. If my body's not well, my nails tend not to grow. And when my body is well - my nails grow steadily.

So now - mid-winter, there's good news across the board: my appetite has returned, my weight is making its way back to normal, and my nails are going strong. Not sure if I could ever prove the connection - but I'm not so sure I need to. I think running with a hunch is just fine for now.

Of course, if my nails have earned a line item on the spreadsheet...well, then...I guess they've "arrived", haven't they?

Here's wikipedia's take on nail growth, and thoughts from WebMD, and Care2.com. Nothing particularly conclusive, although the mention of nutrition sure seems to make sense. Guess it's just a little food for thought!

Benlysta 101 - questions and answers

2012-02-01T08:00:00.000-05:00

Kudos to Human Genome Sciences and GlaxoSmithKline for their efforts to educate the lupus community on Benlysta, their new lupus drug that got FDA approval last year. Since the drug became available, they've published a ton of patient-friendly information on the drug, some of which I'd like to share with you here. This came to me in an email, via a program they call "Benlysta Connect". I call it kind of a 'Benlysta 101" - more questions and answers like those listed below can be found here!

BENLYSTA 101:

Why is the drug given as an infusion?

Your doctors may have explained to you that BENLYSTA is an intravenous infusion (also known as an IV). You may be wondering why BENLYSTA can’t be taken as a pill. It’s because BENLYSTA is a type of drug called a monoclonal antibody. This type of drug would be broken down in the stomach and lose its effectiveness.

How does the infusion process work?

Here’s a look at the infusion process:

•	Before the infusion: When you arrive for treatment, a nurse may ask questions about how you are feeling and take your vital signs (temperature, pulse rate, blood pressure). In some cases, you may receive medications prior to the BENLYSTA infusion, such as an antihistamine, to help reduce your chance of having an allergic reaction. It is not known if these medications will help reduce the chance of an allergic reaction to BENLYSTA.
•	During the infusion: When the IV line is inserted, you may feel some pain or discomfort.
•	After the infusion: You may feel some discomfort where the IV line was inserted. That should go away within a few hours. If you took an antihistamine, you may feel drowsy. It's important that you have someone drive you home, especially if you are drowsy. Depending on how you feel, you may be able to return to your usual activities. Contact your healthcare professional if you don’t feel well or have soreness or tenderness at the infusion site that does not go away.

Where do you get the infusion?

There are several locations for infusion treatments, including a doctor’s office, an infusion center, and infusion clinics within hospitals. An infusion location may have one or more rooms with comfortable chairs in a common infusion area, and even private rooms with beds. Not everyone at an infusion site will be receiving treatment for lupus. People may be getting infusions of other medicines for other health conditions.
If your doctor prescribes BENLYSTA, ask your doctor or nurse to describe the site where you’ll be receiving your infusions. You may even want to visit the site before your first infusion and meet the medical staff. This way you’ll know how long it will take to get there and what to expect once you arrive, which can make you feel more comfortable.

How often do you get the infusion?

After receiving the first infusion of BENLYSTA, the recommended dosing schedule is to receive the second infusion at 2 weeks and the third infusion at 4 weeks. After this, it is recommended to receive BENLYSTA once every 4 weeks. You may wonder why it is recommended to receive three BENLYSTA infusions in the first 4 weeks—called a "loading dose." This is consistent with what was done in the clinical trials evaluating the safety and efficacy of BENLYSTA.

What are some typical reactions to infusion?

Serious reactions may happen on the day of treatment or the day after receiving BENLYSTA. The most common symptoms of a reaction can include:



		Itching
		Swelling of the face, lips, mouth, tongue, or throat
		Trouble breathing
		Anxiousness
		Low blood pressure
		Dizziness or fainting
		Headache
		Nausea
		Skin rash, redness, or swelling

Tell your healthcare professional or get emergency medical help right away if you have any of these symptoms.

Role Reversal - As a caretaker, I need some practice.

2012-01-30T08:00:00.000-05:00

I mentioned in an earlier post that the coldand flu bug had made an unwelcomed stop at our house this winter. Turns out hewasn’t quite finished with the Gormans, as of my last posting on the subject.Turns out Johnny had a very up close and personal visit with Mr. Flu Bug – andman, did he suffer. Johnny was down and out for almost a week. He had a feverand was achy and fluish for at least 5 days, confined to the bed for most ofthat time. By the 6^th day, he still wasn’t himself, but there washope. And for those of you wondering, no, he did not get a flu shot this pastfall. But ask him his plans for next year – I think his feelings on the subject have sincechanged.

What did this mean for me? It meant that I hada crash course in Caretaker 101. Now – for the record – Johnny’s a goodpatient. He doesn’t ask for much – and when he does, he tries to ask foreverything (i.e. toast, a cup of coffee, a glass of orange juice, some water, anew Kleenex box and a medicine refill) all at once, rather than calling me inevery fifteen minutes for something new. And he’s a discreet sickie – nocomplaints, heavy sighs, or excessive moaning and groaning. He just lies there andtakes it like a grown up. But, the fact that he was sick still required a skillset that I haven’t exercised in a long time, if ever.

Sure, I take care of my girls…but that’sdifferent. They’re…my girls. They don’t know enough to ask me to get somemedication from the drugstore, or to call the doctor, or bring them morefluids. I initiate all of the caretaking in the case of Deirdre and Bernie, andit’s very different from catering to a sick and homebound adult.

So I had to brush up on a few things, primarily the virtues of patience, consideration,and kindness. I learned how to put someone else’s needs above my own personalagenda, and hopefully, not make it seem like I was doing so. I was reminded ofthe value of conversation (because Johnny was in no condition to chit-chat),the benefits of running a household with the help of someone else, and sharingthe responsibility of child-rearing. As I retrieved extra blankets, waterbottles, and cough drops, I was reminded how many times Johnny had taken care ofme. How many days on end he’d tucked me into bed, sat with me while I took mytemperature, brought me warmer pajamas, or filled up my water glass. I rememberJohnny doing everything he could to make me as comfortable as possible – andnever making me feel like I was asking too much. And most importantly, doingthat day after day after day.

A bout of flu typically lasts a week, and bothJohnny and I are ready for this flu bug to get on its way for good. And yet, alupus flare doesn’t have the luxury of being confined to a week. A flare can lastfor weeks, if not longer. That’s why I’m committed to keeping those flares atbay. I certainly won’t hesitate to put Johnny in the role of caretaker if needbe, but if I can do anything to prevent it, I’m certainly going to try!

Good news for Biologics - no increased risk of infection

2012-01-27T08:00:00.000-05:00

Medscape News featured another article that might be of interest to those of you currently on or considering treatment with a biologic.

From the article, it appears that the focus groups consisted of patients with RA (Rheumatoid Arthritis), IBD (Irritable Bowel Disease), and psoriasis, psoriatic arthritis, or ankylosing spondylitis (psoriasis and spondyloarthropathies). No lupus was present among the patients, but the drugs discussed in the article are definitely within the lupus cocktail of medications, keeping lupus in the mix for possible future treatment with biologics. Of course, Benlysta was a major breakthrough this past year - which I imagine serves as the best example of a biologic treatment for lupus, to date. Here's a snippet from the article:

"We think there is a lot of controversy about whether these drugs [biologics] increase the risk of infection," said lead author Carlos G. Grijalva, MD, MPH, from Vanderbilt University in Nashville, Tennessee. "Data from clinical trials suggest that they can increase the risk, compared with placebo, but you know that these patients have other alternatives and can receive other nonbiologics." The real question, he pointed out, should be whether the biologics increase the risk for infection relative to nonbiologic options. "That is exactly the question we tried to answer."

The study results "should be reassuring for patients and providers," said Dr. Grijalva, "because we observed that the use of these medications is not associated with an increased risk of infection — except for infliximab in the RA population."

"The takeaway is that while the biologics are not without risk, it is further reassurance that what risk there is is reasonable and appropriate, given the benefit of the drugs," he explained.

You can view the entire article here.

Changing what we can - nothing more, nothing less.

2012-01-25T08:00:00.000-05:00

In gearing up for my speech this weekend, I came across a selection in my book that I haven't thought about in awhile. But oh, how true it is. I think my post last week reminded me that our lives with lupus are bound to change over time - we evolve, our disease evolves - and the best we can do is attempt to make positive changes when and where we can. And while it's important not to spend time or energy struggling with issues that we can't change - I like to focus on the proactive side of the equation. That is, the fact that we must take ownership and responsibility for those issues where we can affect change - like our sleeping habits, allowing ourselves sufficient downtime, and accepting help when we need it:

"Whileyou can’t shed your disease, you can accept the challenge of living with it,

andembrace the life you have. You were smart, successful, happy, and independent

beforelupus. The difference now is that you’re having a hard time believing

youstill are. The secret to restoring faith in yourself is to focus on areas ofyour

lifewhere you can still make an impact. Don’t waste time on aspects of life that

cannotbe altered, like the fact that you have lupus. Instead, concentrate on areas

whereyou can affect change. Doing so will bring you the satisfaction, feeling of

influence, and inner strength you’ve beencraving." ---Despite Lupus: How to Live Well with a Chronic Illness.

Here's to taking these words to heart, and believing that we can still contribute, we can still affect change, despite our illness!

And if you need an extra little kick - you can read (and recite) the Serenity Prayer a couple of times. That usually does the trick for me!

Join me in Reston, VA on Wed., Feb 1st - Author tells all!

2012-01-23T08:00:00.000-05:00

Despite Lupus is on the move again. Following my upcoming weekend in Fort Wayne at the Lupus Foundation's Indiana Chapter Symposium, I'll be back in Virginia speaking locally at one of the Foundation's support groups in Reston.

I'd love to see you - and look forward to sharing more thoughts and strategies for living well, despite lupus. Here are the event details - and you can register for the event here. (FYI - Just like all of the D.C./Maryland/Virginia events, the event is free of charge.)

WHEN: Wednesday, February 1, 2012 at 6:30 PM (ET)

WHERE: Reston Community Center 2310 Colts Neck Road Reston, VA 20191

And if you have any questions that you'd like to pose beforehand, or topics that you know you'd like me to touch on, feel free to shoot me an email. I'll look forward to hearing from you!

New blood test for lupus. Could it be?

2012-01-20T08:00:00.000-05:00

Word in Pittsburgh, PA is that there's a new blood test that can help to more accurately diagnose lupus. You can read the entire article here, but here are the highlights:
***

A new blood test that researchers in Pittsburgh developed to help doctors better diagnose lupus now is available for everyday use.

Drs. Joseph Ahearn and Susan Manzi of West Penn Allegheny Health System began working on the test about a decade ago at the University of Pittsburgh, said Jennifer Davis, a system spokeswoman.

"...Up until now, there really was no specific blood test for lupus, which led to it being grossly misdiagnosed," Ahearn said. "This test is far superior and will result in more accurate diagnosis." The test is now available for use to patients and doctors nationwide.

***

Three cheers for the new blood test. Yippee!!!

With lupus, change never goes unnoticed

2012-01-18T08:00:00.000-05:00

If the fatigue I mentioned on Monday wasn't enough of a false alarm - my most recent malware alert sure was! You know I've had my fair share of issues with my website and malware - but thankfully, all has been clean and clear since I made a clean sweep of my site. (Thank you, Kevin!)

But just last week, I made a minor change to my website which I expected would be seamless, but was anything but. I switched hosting companies so that I could have my new saragorman.com site alongside my despitelupus.com site, but my malware scanning service didn't like the change. In fact, they saw the interim site that went up while the change took place as a glitch, tagged it as malware, and alerted me that my site was infected. Eek! But I remained calm (or relatively calm, since this malware has eaten up enough of my time and energy to launch a million websites), and alerted the professionals. They got on it, and indeed, confirmed that the scanner was confused - all was well - and I could keep on keeping on.

But seriously. I didn't need that fire drill.

Well, maybe I did.

Maybe it's a good reminder that change, at least as far as lupus is concerned, doesn't often go unnoticed. Sometimes I try and trick myself into thinking that I can push the envelope when it comes to changing up the routine. Like my nap routine - or my medication routine - or my easy-does-it-on the errands routine. And now with this Raynaud's, even a change in temperature doesn't slip by me. I need to bundle up like everyone else in the world when it's chilly. No more little fashion plate numbers that I try to pass off as coats when it's below freezing. And even if my gloves don't match - they need to be worn. Without fail.

I think the biggest change in routine that I try to convince myself will go unnoticed is my compulsion to multi-task. No matter how hard I try - when I attempt to juggle 27+ things - it just takes its toll. I wish it didn't. I wish it could be like the old days before lupus, when my plate was piled high with demands and deadlines, and I could make every single one of them happen. In fact, I thrived off of the pressure to do so. Now - when my plate gets overloaded...I just get tired. And frustrated because I'm tired. And then I get tired of being frustrated.

But it's okay. I've found that there's power in knowing your limitations, and finding creative ways to work within those constraints. Change is what it is - and in most instances, it's a good thing. I'm a mom now...and I wasn't before. I'm now an author with a blog and a book...and I wasn't before. I'm now an entrepreneur launching a line of toiletry bags...and I wasn't before. It's exciting, challenging, and fun...and an opportunity to learn how to balance all that while living well with lupus. Guess I have my work cut out for me, eh?

The flu and cold bug camps out - lupus fatigue crisis averted!

2012-01-16T08:00:00.000-05:00

To say that the winter cold and flu bug made a pit stop at our house this Christmas is a bit of an understatement. He more or less camped out at the Gorman household for the past 4 weeks, causing at least someone in the house much pain and sickness every night of his stay. I estimate we've been through more than 30 boxes of Kleenex since the week before Christmas. With five family members all fighting off coughs and colds, we definitely had our own little pharmacy going here. I'm finishing up my antibiotic now, and the girls are finally finishing up those runny noses. I won't say we're completely in the clear just yet...but there is light at the end of the tunnel.

That said, two weekends back, the tunnel was looking pretty dark. I'd been fighting off my cold for about two weeks, but had been recovering nicely. You know how it is - the itchy nose and scratchy throat begin, then the cold comes on, and there are a couple of days where you're just really down and out...and then the tide turns and you know the cold will be ending within a few more days. Well - that's just what happened, and I was coming out of it just fine. And then, one Sunday midday- my old friend fatigue hit, and I thought I'd taken a turn for the worse. A lupus turn, in fact.

I started feeling the fatigue that morning during Mass, and quickly realized I was running out of gas, and fast. It was just Deirdre and me, as we'd left Johnny and Bernadette home to nurse her runny nose, so we headed home immediately. By the time we arrived home, I knew I needed to deal with the fatigue immediately.

I laid down on the couch, and Johnny immediately took over. The girls were playing all around me, but I fell asleep within minutes. It was just like my old lupus days - where I could fall asleep anywhere and at the drop of a hat. Good news, is that when I woke up over an hour later, I felt rested...which gave me hope. We put the girls down for their naps, and then I laid down again, and caught another 2 1/2 hours of sleep. And after that - I was good as new. I took it a little slow that evening, making sure that my perfectly rested body wasn't playing tricks on me, but that fatigue was gone, and with it, my concerns of a lupus flare. Guess I just needed to do a little catching up from the cold. So crisis averted...and I've never been so relieved.

Between my naps, my mind definitely went into hibernation mode. I made a mental list of all of the things I was going to have to offload - knowing that if a lupus flare was upon me, all those things that just "had" to get done weren't even going to make it onto a to-do list. It was a good reminder that all of those "shoulds" aren't as pressing as I make them out to be. And it reminds me that should I be tempted to skimp on my nap, run myself ragged during the day, or stay up way too late at night - there are consequences to my actions. Nothing like a little fatigue fire drill to keep you honest and on the path to living well!

Lupus nephritis - biopsy for all?

2012-01-06T08:00:00.000-05:00

Here's another interesting article from Medscape News - reporting about the the first guidelines ever developed for the management of lupus nephritis. The recommendation is that physicians biopsy all patients who present with clinical evidence of active disease (lupus nephritis, that is), classify the disease stage according to the International Society of Nephrology/Renal Pathology Society classification system, and manage the disease on the basis of this classification.The guidelines were presented at the American College of Rheumatology (ACR) 2011 Annual Meeting.

You can view the whole article here, which also talks about managing the disease with plaquenil and the use of angiotensin-converting-enzyme inhibitor or an angiotensin-receptor blocker - commonly referred to as hypertension medications, if and when protein in the urine is at least 0.5 g/day.

Remember a few months back, when I was so shocked that my doctor prescribed Cozaar for the protein in my urine? Guess he knew what he was talking about! (Of course he DID. I'm just saying...)

And kudos to my girlfriend in Ottawa - who recommended I get a baseline biopsy back when I told her about my increased protein. She totally knew what she was talking about. Thanks, Karen!!

Shutting down...physically AND mentally

2012-01-04T08:00:00.000-05:00

As mentioned in Monday's post, I'm gearing up for my next speaking engagement on January 28th in Fort Wayne, IN. The details are set - flight, hotel, car - and my presentation is just about there. Over the past week, I was working like mad to finish it up - first, because I've learned that procrastination doesn't lend itself to stress-free, disease-free living, and two, because my au pair started her two-week vacation earlier this week, and my free time is, well, no longer free.

I did my best to pace myself, and I'm happy to say no sleep was sacrificed in the preparation of my presentation. I didn't pull any late nights, and I didn't get up at the crack of dawn to work on it. I set aside time during the day when Paola could help with the girls, starting when I intended and stopping when it was time. I even held myself to the stipulation that I'd work only 30 minutes after the girls went to bed for their naps. This continues to be the hardest thing for me to adhere to - but I'm proud to say that there wasn't a single day when I was still pounding away at my computer past 2:30pm, the official start of my nap.

So while I can proudly proclaim that my computer was off and I was in bed for the start of my nap, I can't say the same for my mind. I may have physically shut off access to my presentation, but mentally, the ideas were still flowing. It was practically impossible to stop my brain from organizing the thoughts in my head - mapping out slide after slide of how the presentation would go. Good news is that I realized after just a day or two that I simply can't work right up until my nap. I need to disengage and disconnect (literally) about 30 minutes before trying to rest. It's just the way it goes. I've blogged about this before - but it's been awhile since I've experienced it first-hand. The lupus lessons just keep coming, don't they?

Despite Lupus Road Show - Fort Wayne, IN, here we come!

2012-01-02T08:00:00.000-05:00

Despite Lupus is back on the road again - this time heading to Fort Wayne, Indiana at the end of January. I'll be speaking at the annual Lupus Foundation symposium, and looking forward to it. Here are the details of the event - let me know if you'll be there!

‘Living with Lupus’ Symposium
Saturday, January 28th, 2012, 9:30 - 1:30pm
Lutheran Health Network – DupontHospital
FunctionRooms 3 and 4
Fort Wayne, Indiana

For more information, feel free to check out the Indiana Chapter website. I'm finishing up the details of my presentation now - titled "Listen Up, Doc!" I'll discuss the strategies I've learned for dealing with doctors and making the most out of appointments. So many doctor visits, so little time, right?

Hope to see you there!

Lupus workarounds - the reason for the pigtails

2011-12-30T08:00:00.000-05:00

It was about this time last year that I talked of my latest (and hopefully last) round of hair loss. I'm happy to say that since that time, my hair has been growing strong - coming in curly - but still thick, dark locks. I've continued to keep my hair long, because it seems to give me more flexibility while I wait for my full head of hair to return. The locks that are growing back are about 50% of the way there - which is good for fullness, but bad for consistency. Leaving my hair to dry on its own usually produces a mess of curliness, and pulling my hair back doesn't really work, because half of the strands aren't long enough to make it. But, being the ingenious lupite that I am, I discovered that side pigtails are a great solution. All of the little strands are filed nicely away, and no one would ever know that something was amiss.

In fact, I've been putting my hair in pigtails for so long now (9 months +), that I even forgot why I was wearing pigtails in the first place. I went to a support group meeting last month, and one of my friends commented on my piggies, inquiring why I was sporting the cute new 'do. And you know what? I couldn't remember! I actually said something about putting Deirdre and Bernie in pigtails all the time, and that I must have been inspired. It wasn't until I was driving home that I was thinking, "Why AM I doing pigtails all the time now?" And then it dawned on me. It was actually an accommodation I'd come with. How about that!

I've shared a ton of tips on hair loss before, which you can read here. Let's hope that all of our workarounds can be as easily integrated into our daily routines as this one was for me!

Lupus and Pregnancy - Stability is key

2011-12-28T08:00:00.000-05:00

I thought this article from Medscape News was pretty interesting - seems like I'm a perfect example of how successful a lupus pregnancy (or two!) can be, if and when your disease activity is stable. There was a time when I was told I shouldn't get pregnant, then a time when I couldn't get pregnant. Later on, once I'd come to embrace the disease, rather than fight so hard against, I decided that I wouldn't get pregnant - for the sake of my own health, as well as the prospect of a little life inside of me. But then fast forward a few years, and the time was right. I was healthy, I was strong, and my lupus was stable - a perfect setup for two perfect pregnancies. I'm not saying it's a guarantee for smooth sailing...but it sure does help, as the article indicates.

Most importantly, I found that preparation was key. I worked far in advanced with all of my doctors to ensure that I had the best chance for healthy pregnancies. Consult your rheumatologist, and find a good high-risk obstetrician BEFORE you plan on becoming pregnant. Deirdre and Bernie would agree - it's the only way to go!

Here are the snippets I like from the article - but you can read the entire article here:

Women with stable lupus erythematosus have a far lower rate of serious complications during pregnancy than previously reported, even those with a history of lupus nephritis, according to data presented here at the American College of Rheumatology 2011 Annual Meeting.

The "extraordinary news," said first author and presenter Jill Buyon, MD, from New York University Medical Center, in New York City, is that just 15 patients (4%) had a severe flare during their pregnancy, and just 18% experienced a mild to moderate flare, most of which resolved without steroids.

Risk factors associated with poor outcome include slightly higher baseline disease activity (measured by clinical instruments and physician global assessment), the presence of lupus anticoagulant antibodies, slightly higher uric acid in the second and third trimesters, and a smaller complement increase as the pregnancy progresses.

"What the study says is that even patients with a history of lupus nephritis can do well during pregnancy," she said, assuming they become pregnant when their disease is stable and they are managed by maternal–fetal medicine specialists who specialize in high-risk pregnancies. "That's a really encouraging message to give these women."

associate professor of medicine at Emory University School of Medicine in Atlanta, Georgia, said most rheumatologists are "nervous" and "scared" about women with lupus becoming pregnant.

"I think this study is vitally needed," said [S. Sam Kim, MD] . "It gives us some more reassurance and direction. Any guidance we can have in terms of reproductive issues is extremely important in the field of lupus and the people we treat."

I do and I don't - contradictions in living with lupus

2011-12-23T08:00:00.000-05:00

Our annual Christmas card. I love putting it together. I love getting the girls all dressed up, I love taking the photos, I love picking the perfect card for our perfect photos, and I love sending it out to all of our friends and family, ensuring that at least once a year, I connect with the people we care about the most. It's simply one of the best things I do all year.

It's also, ahem, one of the worst things I do all year. The girls love getting dressed up, but they don't like posing for pictures. Dar is a sweet guy, but it can be tricky to get him to look directly into the camera. Sorting through the list of addresses is fun, but making sure they're updated isn't. Printing the labels and making the mad dash to the post office - really, it's not all that great.

But I wouldn't skip it for the world. I love the finished product, and even the photos that don't make the card are ones that we look back on year after year, making us laugh and remember how much fun (and how much bribery) was involved.

This love-hate relationship reminds me of some of my lupus contradictions - a couple of which I've been able to sort out over the years.

When I was first diagnosed, I wanted people to notice and understand how sick I was. But at the same time, I really didn't want them to notice or understand how sick I was. I wanted to appear strong and resilient, but I also wanted those around me to understand how badly the disease made me feel, emotionally and physically. I struggled to find ways to talk about my illness - either I felt like I was lying when I said I felt great, or I was complaining when I expounded on my woes. I grappled with this for years after my diagnosis, but thankfully, over time, I realized what I needed to do first. Come to terms with the disease myself, and only then could I start helping others come to terms with it - in ways that would help my healing process, rather than hinder it.

Another issue I struggled with was my doctor's intervention. I'd often go to my appointments, desperate for my doctor to do anything he could to alleviate my symptoms. But then when my doctor would really intervene, like drastically upping my medicine, or admitting me to the hospital - I didn't like the consequences that came with it. I wanted to get better, but on my terms, not his. Today, of course, I realize that my doctor's intervention is an integral part of my health and wellness. If it weren't for the checks and balances he offers - with his constant questioning, tweaking, and retooling of my treatment - I wouldn't be here today. Truth is, I offer my own sort of check and balance system right back at him, but that's another post!

So here's to letting those contradictions continue to resolve themselves. Let 2012 bring less upset and more insight. And we'll let these three shining, happy faces remind us of that all year long!

Adding Raynaud's to the list: a real lupus phenomenon

2011-12-21T08:00:00.000-05:00

I recently added another notch to the lupus bedpost. Afteralmost 11 years with lupus, I’ve developed a new symptom. My fingers now turn white and go numb in thecold. That’s right – I have myself a bonafide case of Raynaud’s phenomenon.

And I have to say – it can be painful! It’s a pretty common accompanimentto lupus – and up until October, I’ve always answered in the negative to mydoctor’s question, “Do your fingers turn colors in the cold?” But that is thecase, no longer. My fingers now turn ever-so white when I’m cold, going numbwithin seconds, with the burning and tingling following once the blood returnsto my fingers 10 or 15 minutes later. Gloves help – but I find that exercisingmy hands and fingers helps the most.

So what is Raynaud’s? It’s an issue with circulation – and manytimes, a baby aspirin can alleviate the issue. But, just like many lupuspatients, I’m already on a baby aspirin for clotting, so those 81mg are alreadyworking overtime elsewhere. Here’s the way my doctor explained it:

In the cold, our bodies constrict blood vessels in ourextremities to keep our core (internal organs and the trunk area) warm. Usually,this constriction isn’t noticeable, and once the body warms up, the bloodvessels open up again, and normal blood flow resumes - a process that should beseamless. However, in people with Raynaud’s, the blood vessels over-constrict,and blood flow is temporarily cut off from those extremities, causing fingersto go white. And if the blood vessels are over-constricted for an extendedperiod of time, the body pulls the oxygen from the blood vessels in those extremities,causing fingers to turn blue. Once the body finally warms back up, the vesselre-open, and the blood madly rushes back to those poor, fledgling fingers –causing them to burn, tingle, and turn bright red. Nice, huh?

So – I’ve officially been inducted into the Raynaud’s gang. Interestingbit is that my sister-in-law, who has no signs of lupus whatsoever, has hadRaynaud’s for quite some time. I’m in good company, it seems!

(And my doctor did mention that I could try mediction to help alleviate the issue...but I'm going to wait and see how annoying and painful this becomes first. If it's manageable without medicine, I think I'm just going to keep doing my finger exercises!)

All I want for Christmas...

2011-12-16T08:00:00.000-05:00

is a clean website!

Seriously - this malware issue is going to be the death of me! Fingers crossed that my troubles are over. I've uninstalled my shopping cart, which we believe was contributing to the problem. It wasn't the cause, but it certainly wasn't helping things. So I had to make a fresh start.

My new and improved shopping cart, featuring my pillbags as well as the book, should be up and running shortly after Christmas. Until then, feel free to email me directly should you need to purchase a signed copy of Despite Lupus, or if you want to get your hands on one of those snazzy pillbags. I'd be happy to help you!

For now, I'm just ready to get back to blogging. I wasn't able to access the site until the malware was gone, but now, I should be free and clear to write. I have so much to catch you up on - the girls, my health - all of which are good, but of course, ever-changing!

So - look for a return of Despite Lupus posts next week. And Johnny says not to worry - he thinks there could be widespread panic among my readers due to my lack of posts. Let me assure you - the reason I haven't been posting isn't because I'm sick - it's because my website was!!

And enjoy the last weekend before Christmas. I'm taking it slow and steady...as slow and steady, of course, as Bernie, Deirdre, my pillbag business, and the holiday scramble will allow.

Upgrading for the sake of lupus

2011-11-28T08:00:00.000-05:00

It's about time.

That's what my sister said when I told her I'd finally gotten a smartphone. And she was probably right. I'd been holding on to my handy dandy flip phone (that wasn't all that handy OR dandy) for all too long, and it was time for an upgrade. I was reluctant for a couple of reasons - the biggest one being that I simply didn't need to use my phone for anything other than calling people.Or so I thought.

Turns out, having a phone that can email, surf the web, take pictures, and run credit cards (for book signings and pillbag shows) is pretty darn handy. That final reason is the one that prompted me to switch, but what I didn't know was how helpful the phone would be in my life with lupus.

I didn't realize that being able to check email on the run would eliminate that frantic 20 -30 minutes I took to check email after I put the girls down for a nap, most often pushing my nap back later than necessary.

I didn't realize it would allow me to run errands faster and more efficiently - because instead of having to wake up early from a nap in order to search, find, and print a recipe before heading out to the grocery store, I could just look up the recipe on the phone once I was at the store. The ingredients I needed would be right at my fingertips.

I didn't realize that I could get a lot more pillbag business done on the fly, rather than set aside time early in the morning or late at night to tackle my manufacturing to-do list - times for me that were definitely best spent sleeping.

And lastly, I didn't realize how much extra time it took to enter in sales transactions from book events (and now, from pillbag shows) after the fact. Now, I no longer have to set aside time to manually enter in the information after the fact - I process the credit card right then and there, eliminating a ton of of extra work.

Wow. Aren't I glad I wised up?

And though I hadn't anticipated any of the great benefits of a smartphone, I had thought through one concern - and that was ease of use. Some smartphones out there simply weren't finger-friendly to me, one reason I'd held off for so long. It seems the angle that's required to type on the keyboard of, say, my husband's Blackberry, makes my fingers ache. Thus, I knew that when I got a phone, I wanted a touchphone. So a touchphone it was.

And it's perfect. My new phone and I are really getting to know one another - and there are no achy fingers, no frantic pre-nap emailing, no late-nights trying to catch up. The phone is a life-saver, and I can't believe I waited so long.

So, yes, big sister, you were dead right.

It was about time.

Managing your lupus expectations – yours and everyone else's.

2011-11-18T08:00:00.000-05:00

Now that I’m in the world of manufacturing (eek!), I’mlearning the lingo pretty quickly. And there’s a phrase that keeps popping up –mostly in regard to my suppliers:

Overpromise and underdeliver

Now don’t get me wrong – my suppliers have been fabulous. Mymaterials have, for the most part, all arrived when they said they would, andmost of them, thank goodness, have arrived in the manner in which they saidthey would. But with more than a dozen “parts” coming from more than a dozencompanies, it’s been a little tough to achieve that 100% perfect rating.

And the worst thing is to have a supplier overpromise, andthen underdeliver.

If a part is supposed to arrive on a certain day, and thenit arrives three days late, that’s underdelivering.

If a part is supposed to arrive in a batch of 500 (yards, units,what have you), and they arrive in a batch of half that amount, that’s underdelivering.

Of course, the best thing I can do to prevent that fromhappening is to check, double check, and then check again after the order isprocessed. But even that isn’t foolproof.

So I’ve realized I just have to manage my expectations.Which brings me back to how I find it best to work with lupus.

The worst thing for me – one of the things that frustratedme the most about lupus – was overpromising on what I could do, and then underdelivering on that promise. And it usually wasn’t with other people – it wasusually just a standard or expectation I’d set for myself. But the underdeliveringpart – ugh! That felt awful! I felt like a failure, and it made me hate thelimitations of lupus even more.

So now, I’ve realized that managing my expectations is thebest way to manage my disease. I know I have to take a nap everyday, I know Ican’t stay up until after midnight night after night. I know that I can onlyhandle so many tasks in one day before I just implode. So if I plan for thosethings – and give myself the leeway I need to stay healthy, mentally andphysically, I’m not going underdeliver…because I haven’t overpromised.

Now applying this to my manufacturing woes has been hard.After all – when you ask for something, you expect it to happen. And even the most diligent follow-up regimenhasn’t produced perfect results. But I guess if I learn to factor in time,money and energy to allow for the mistakes…then when those mistakes happen, I’llbe better prepared to deal with them. Thus, making me a happier, calmer, moreeasy going customer.

Hmmm. Wonder what my suppliers would say about that?

The Pillbags next appearance - this Saturday in Old Town!

2011-11-16T08:00:00.000-05:00

The PILLFOLD and PILLPOUCH made quite a splash at last weekend's Holiday Marketplace...what fun to design a product that makes you feel sassy about taking your meds!

This weekend is sure to offer more of the same, this time in Old Town, Alexandria. The PILLBAGS will be front and center at the St. Mary's Bazaar this Saturday, from 10-4pm. Details are as follows. You'll have to come by on Saturday to see all of the fabrics available. See you there!

Details:

Saint Mary's Christmas Bazaar
Saturday, November 19th, 10-4pm
400 Green St., Alexandria, Virginia 22314

THE PILLFOLD - Outside

THE PILLPOUCH - Outside

Tracking the triggers of lupus - basking in the benefits

2011-11-14T08:00:00.000-05:00

A couple of weeks ago, I wrote about my latest trials with Bernadette's eczema. We were drowning in lotions and creams, and tracking every possible food allergy we could. And while my little munchkin wasn't allowing her newly developed skin condition to upset her pleasant demeanor, her itchy skin was making it difficult for her to fall asleep at night.

Until her momma made a discovery. With the help of my trusty sidekick, Paola, we've discovered the primary culprit. And now I have just one word for you.

Wool.

Turns out, my sweet little baby girl is allergic to wool. But put her in long pants or tights and a long sleeve shirt, limit her time on the wool rugs we have in the house, and encourage her to walk instead of crawl, and voila! Her eczema improves ten fold.

We were closing in on our hunch that it was some sort of contact allergy - bath soap, detergent, maybe some new clothes she was wearing - when Johnny scooped her up one afternoon, and held her for about 20 minutes. And by the end, she was covered in red patches. And what was Johnny covered in? A cashmere sweater!

Interesting thing is that while he was holding her, he was talking to a business associate who had stopped by the house. He noticed little Bernie's skin turning red right before his eyes, and asked if she had eczema. We talked skin conditions for awhile, and he convinced us to take another look at her food allergies. His granddaughter's eczema had been transformed by cutting out a few things from her diet. And yet, lo and behold, the reason for Bernie's sudden outbreak was right there before our eyes!

So - Johnny ditched his cashmere sweater for the evening, I lathered Bernie up with cream, and her skin settled down within a few hours. Good news is that we are now armed with information, and we can take steps to limit her outbreaks.

Before we made the discovery, I'd logged a considerable amount of time trying to educate myself and uncover the triggers - tracking her diet in a food diary, taking note of what she came into contact with, and doing some research online. I was jotting everything down in a pad, kind of a mini-version of my chronic control spreadsheet. And it worked! Sure, I was coming up with a bunch of negatives - no dairy allergy, no egg allergy, etc. - but I was eliminating culprits by the handful. Most importantly, I felt like I was doing something to help Bernie's cause. I wasn't just sitting back, watching those red patches spread. How wonderful to be informed, enlightened, and engaged!

And that's the beauty of the chronic control spreadsheet. I devote an entire chapter to it in my book - and it's the chapter I hear about most from my readers. It seems that the idea of tracking symptoms, medications, and lifestyle factors really does help. It provides clarity, gives you a little something to focus on, and can provide a helpful discussion tool for you and your doctor. Of course, too much of anything isn't ever good - so just make sure you don't go overboard on tracking. If you find yourself inundated, just flip to the second half of the Chronic Control chapter, and you'll find a few suggestions on ways to disengage - even if just for a few minutes. Sometimes, a mental break from our chronic illness concerns is just what the doctor ordered!

So while we haven't found a cure-all for her condition, we are making serious headway. I still use lotion several times a day, and because I can't limit her exposure to wool completely, we still have a bit of patchiness here and there to contend with, but overall, life with eczema is good.

Well, let's not get too far ahead of ourselves. Why don't we just say, "pleasantly bearable?"

Can you say the same about lupus?

S.L.E. Foundation's event of the year in NYC - don't miss it!

2011-11-11T08:00:00.000-05:00

The S.L.E. Foundation of NYC has quite the event coming up this month. Check out the line up below - a great night for a great cause!

Here are the details - tickets are steep, but maybe your company or a big client is looking for a way to get involved with your oh-so-special cause. It never hurts to ask!

Monday, November 21, 2011
S.L.E. LUPUS FOUNDATION HOSTS
“Life Without Lupus Gala 2011: A Night at the Museum”
Honoring U.S. Senator Frank Lautenberg; Mrs. Bonnie Englebardt Lautenberg, and Daniel J. Wallace, MD, Founder, Lupus LA. Grammy Award winning singer, songwriter and activist Carole King to Perform

More than 600 members of New York City’s philanthropic, business and health care communities will join forces at the S.L.E. Lupus Foundation Life Without Lupus Gala 2011 on Monday, November 21, 2011 at The American Museum of Natural History. Aptly named “A Night at the Museum,” this year’s black tie gala, co-hosted by Willie Geist, Co-Host of MSNBC’s Morning Joe and Natalie Morales, News Anchor at NBC’s Today Show, will herald the quantum leap taking place in lupus research.

U.S. Senator Frank R. Lautenberg and Mrs. Bonnie Englebardt Lautenberg will be honored for their help in making lupus a national priority. Mrs. Lautenberg’s sister and S.L.E. Lupus Foundation Board member, Carol Weisman, was diagnosed with lupus at age 19. Daniel J. Wallace (MD, FACP, FACR), founder of Lupus LA, will be presented with the Foundation’s Medical Leadership Award.

Grammy Award winning singer, songwriter and activist Carole King will perform a tapestry of songs in honor of all women living with lupus. A live auction conducted by Jamie Niven, renowned auctioneer of Sotheby’s, will allow participants to support specific cutting-edge research at many world-renowned renowned institutions. Guests will enjoy a full program and sumptuous dinner served by Caterer Restaurant Associates, the official caterer for the Museum.

WHERE: American Museum of Natural History -- Central Park West at 79th Street, New York
WHEN: Monday, November 21, 2011 -- 6:30 p.m. to 10:00 p.m.

TICKETS: For information, visit www.lupusny.org or call Anita Cruso at 1-212-685.4118 x. 29 acruso@lupusny.org. Individual tickets start at: $1,000

About S.L.E. Lupus Foundation: The S.L.E. Lupus Foundation is the country’s preeminent organization delivering direct patient services, public education and novel research at a national level. Founded 40 years ago in New York City by lupus patients and their families as the first nonprofit to serve the lupus community, it remains the cornerstone of comprehensive care in all five boroughs in the continuous battle for a Life Without Lupus.

PILLBAGS unveiled - Friday, Nov 11th in Alexandria!

2011-11-09T08:00:00.001-05:00

When I was diagnosed with lupus almost 11 years ago, I realized three things very quickly:

One - whether I liked it or not, I had been initiated into the world of pharmaceuticals.
Two - I was going to be on a first-name basis with my pharmacist for a very, very long time.
Three - I needed to figure out a way to organize all of my medication, and it certainly wasn't going to be by using an ugly, plastic, sterile-looking pill box. (See exhibit A):

Nope - this young, energetic, fashionable gal wasn't going to succumb to "Big Blue". So I resisted, and resisted some more. But after missing a dose here and a dose there, struggling to renew my prescriptions on time, and flat out losing track of what pills I'd taken and when, I broke down and started using the box.

And I hated it. It made me feel old and decrepit, it never stayed closed, and it certainly didn't go with my bedroom decor. (And if they're not out where you can see them, forget about remembering to take them, right?)

So I decided to do something about it. Enter into the marketplace Sara Gorman's new line of PILLBAGS - fun, fashionable bags designed to carry medication. The bags are designed to bring a dose of style to your daily routine - featuring fresh, funky fabrics and cool, shiny hardware. Think sassy little handbag with a purpose. Like, a real purpose: making it easy and fun to take your medication so you stay healthy!

You'll no longer have to hide your pills when guests come over, and you won't struggle to figure out if you've taken your morning meds or not. The separate morning and evening clear compartments of the PILLFOLD make it easy to see your "pill" activity. Featuring 8 separate zippered compartments (7 days of the week, plus a "junk drawer" for extras), your daily medications will be right at your fingertips. And with easy to grip zipper pulls, a hook to hang the bag, and an easy magnetic closure, taking your pills will be a cinch. AND you'll look great doing it!

The second bag, the PILLPOUCH, makes traveling with your medicine bottles a breeze. Featuring 6 bands and a special-drawstring design, this cute little number is just the thing to keep your prescription bottles organized. Just throw it in your suitcase and go! No more pills spilling into the bottom of your purse, and no more little plastic baggies, as the PILLFOLD and PILLPOUCH are both safe, secure, and convenient. Goodbye plastic, hello style!

The PILLFOLD and PILLPOUCH will be available soon at www.saragorman.com. Look for a new website coming soon!

Can't wait for the website? Just have to check out the PILLBAGS now? If you're in the Washington D.C. metro area, stop by my first "show" - St. Aidan's Holiday Marketplace this Friday from 9-1pm, or again from 7-9pm. I'll be there with my book AND my bag samples. Hope to see you there!

Orders placed on Friday will be shipped before Christmas - order the perfect gift for that special someone now!

Details:
St. Aidan's Holiday Marketplace
8531 Riverside Dr.
Alexandria, VA 22308

Hours - 9am to 1pm, 7-9pm.
Cash, check, Visa, MasterCard, American Express accepted.

Lupus and malware - the festering champions of the world

2011-11-07T08:00:00.000-05:00

I promise I won't make a habit of these malware/lupus comparison posts, even though I could probably come up with a dozen more ways to compare the two evils. Having dealt with threats and alerts on my site practically every day for the last three or four weeks, I feel like I have a pretty good handle on how this malware stuff works. It's sneaky for one - and it festers, even when you don't think it's festering, it is. And the more time you wait to do something about it - the worse it gets. Like, exponentially worse. The site gets so overwrought with infection, that it's hard to get things under control. It's even hard to know where to start.

Sound a little familiar?

I realized that I fell prey to optimism once again. I just kept thinking that the malware issue would go away, that it wasn't as serious as it looked, and that I should just carry on as usual, and the problem would fall by the way side. I didn't actually ignore it - I just don't think I gave it the attention it deserved early on. I didn't bring in the big guns (the malware experts at sucuri.net) until it was almost too late. Sure, I was on top of my web guys to keep after it - making sure they followed up on every hint of stray code. But that wasn't really addressing the issue - that was just treating the symptom.

Again, sound familiar?

I think it's only natural that we try to just keep plugging along, even when the obstacles in our path threaten to side track us or drag us down. That's how we're able to get things done, right? Head down, full speed ahead. But sometimes, the issues that we're trying so hard to ignore point to a bigger problem that really does need to be addressed. And the longer we wait to address it, the worse it gets. It festers, and soon enough, we find ourselves (and our websites) debilitated from head to toe.

So the next time you say to yourself, "I should probably call the doctor about this", just do it. Don't wait for your instincts to just "push through" kick in, and don't let that optimism convince you that the problem will just go away. That increase in joint pain, the fever that won't go away, that pesky rash that keeps surfacing - don't just brush them aside. The sooner you make that appointment, the sooner you'll address the issue at hand, and the closer you will be to having a clean bill of health.

And oh, what a fabulous feeling that is!

My NEW least favorite things

2011-10-31T08:00:00.000-04:00

As many of my loyal readers may remember, I absolutely, positively despise poison ivy. Not that anyone actually likes poison ivy - but the old P.I. and I have a hate-hate relationship. It wreaks havoc on my skin, and, perhaps because I'm prone to all things systemic, once P.I. hits my system - my whole body is compromised. It takes weeks if not months to clear up - and only with the help of lotions and creams, prescriptions and special baths, ointments and scrubs. The time and energy I spend prepping, treating, and caring for my poison ivy-ridden skin is unbelievable...and for every ounce of energy and moment of time I spend, it makes me hate P.I. even more.

So it's hard to believe that P.I. actually has some competition now. Alas, there are two new things I've recently discovered that are quickly by-passing P.I. on my list of leasts, tied in the lead for the top spot. One is malware. The other is eczema.

Alright - so let's talk malware first. I cannot believe how much time and energy had to be spent to clean up my website. It was unbelievable! People shutting down "backdoors", extricating "redirects", and deleting lines of "stray code" just scratched the surface. I have email after email, and help desk response after help desk response, detailing the issues that kept cropping up. It wasn't until I hired a malware-deletion service, www.sucuri.net that the problem was (fingers crossed) solved. But that wasn't without weeks of wasted time and energy beforehand. I definitely compare it to P.I. - it would crop up anywhere, wouldn't go away no matter how hard we tried, and left a trail of pain and suffering in its path. Yup - that pretty much sums up P.I. And it sure sums up malware, too.

And now, to finish off the triptych of menaces, I can add Eczema to the list. Miss Bernadette seems to have a crummy case of it right about now. You want to talk lotions and creams, potions and antidotes? Baby B has been lathered up from head to toe at least 700 times by now - and not with a little dab of baby lotion here, and a little dab there. This is heavy duty, Aquaphor, full-body coverage, with a little hydrocortisone thrown in now and again to really get the job done. I'm so proud of my little lady though - her little skin condition hasn't changed her sunny disposition one ounce. And the fact that we spend 10 minutes in the morning, 10 minutes before nap, and 10 minutes after her bath, slathering her with lotion doesn't seem to faze her at all. She just smiles, and reads her book, and tries to stick her hand in the tub of Aquaphor. I think she kind of likes the Mommy-Daughter time...and truth is, I guess I kind of do to.

But the eczema, I could do without.

Bernadette reminds me, however, that all that time and energy pays off, because every morning when she wakes up, there's not a sign of eczema on her precious little baby skin. She's allowed that lotion to work all night, and she wakes up soft, silky, and smooth, without a red patch anywhere. It's those kinds of results that remind me that diligence in your pursuits and dedication to a routine really do work. Living well, despite lupus requires just that kind of diligence, and that exact sort of dedication. I'll just have to keep my eyes peeled for the benefits.

Oh - there's one now. :)

The cloud has been lifted...

2011-10-27T11:41:00.001-04:00

I'm officially declaring the month of October "Malware Month" on Despite Lupus.com. Seriously - that was the worst case of website infection ever!!!

My apologies for the disruption on my site - I had to abandon blogging for the last week or so due to the difficulties, and as you can see, I've stripped down my site, all in an effort to get rid of that nasty malware.

Fingers crossed - I'm in the clear now, thanks to the handy services of Sucuri.net. The team at Sucuri, along with the tireless efforts of my web guys, have left me with a site free of malware. Thanks to all of the emails and get-well cards - I really appreciated the tip-offs!

So - look for updates and new posts to come next week. I'll fill you in on what's been going on in the world of Despite Lupus. There's a new site in the works, with a fresh new look and a whole new line of products I've designed for people who are living well, despite their chronic illness. Stay tuned!!

ALR's SLEGEN Project - Don't particularly like the name, but love what they do!

2011-10-14T08:00:00.001-04:00

Alliance for Lupus Research (ALR) has been doing wonderful things over the past few years, and this SLEGEN project, short for Systemic Lupus Erythematosus Genentics Consortium, is one of them.

This project, founded in 2005, conducted a three year study that has uncovered specific genes linked to lupus. The study was supported and funded by ALR - a $2.25 billion endeavor.

Researchers studied DNA from more than 6,700 women, including lupus patients, their families and unrelated controls.

After scanning the entire genome and 317,000 single nucleotide polymorphisms (SNPs), scientists found:

◦A total of four genes with robust evidence of genetic linkage to lupus - gene ITGAM, KIAA1542 and PXK - and at SNP rs10798269, a DNA unit not found within any known gene.

◦Nine other genes with promising evidence of linkage to the disease

Cool, huh? But maybe you're asking, so what happens next?

Thankfully, ALR answers that:

"Now that these genes have been identified, other scientists can seize upon these findings to start developing new strategies for prevention and therapy. These results represent a significant step toward the ALR mission of preventing, treating and curing lupus. Moving forward, SLEGEN updates will show how this study is driving further advancement in lupus treatment. The SLEGEN project opens the door to future lupus research funding that will help build on these groundbreaking results."

Super cool, right?

Copies of Despite Lupus have served as auction items at various ALR events over the years. If the results keep flowing, the copies will keep coming!

For the entire article, click here.

Malware alert - sorry for the distraction!

2011-10-11T16:52:00.000-04:00

My apologies if you've been experiencing the nasty malware alert on my site. My webguys are on it - they've run scan after scan, without finding anything on my actual site, but there does seem to be an issue on Blogger's end. Thus, Google is black balling the blogspot. (Hint - if you go to www.despitelupus.com, you might be okay. It's www.despitelupus.blogspot.com that seems to be causing the trouble!)

That said, I'll continue posting, because from the comments and emails I've been getting, many of you are still reading. (I can post and view my site without a problem, interestingly enough.) Hopefully, the malware alert will be lifted soon - we've asked Google to run another site check, and my fingers are crossed that they'll find what my webguys are finding. Nothing!!

Thanks for sticking with me. DL will return to its former glory soon!

2011-10-10T08:00:00.008-04:00

Whew! We made it through the week of birthdays! Bernadette turned 1 on Thursday, and Deirdre turned 3 on Saturday - both girls enjoying their special days of cake, ice cream and celebration. Deirdre celebrated at school on Thursday, too - we took in cupcakes for the class, she got to wear a crown - she was in heaven.

She was milking her royalty status all week, in fact. We were talking to a friend of mine on Wednesday around noon, and she asked what kind of cupcakes Deirdre was going to take to school the next day. Deirdre responded, "I'm taking strawberry." And I said, "Well, now - that's news to the baker." I explained to Deirdre that we would be taking cookie cups this time, and she looked at me, looked back at my friend, and said, "We're taking strawberry."

Hmmm. Funny how the apple doesn't fall from the godfather tree.

I figured I'd let the whole subject alone - we'd take naps, I'd make the cookie cups, and that would be the end of it.

But where did I find myself later that evening? At the store, buying strawberry cake mix for Miss Priss' strawberry cupcakes. I just couldn't let my little lady down. I mean - it was her very first birthday party at school. And if she wanted strawberry...well then...she'd have strawberry.

Which drives home the point that I always try to make when people ask me about kids and lupus. I always say that you have to put yourself first - that you have to make a point of keeping yourself happy and healthy - all in an effort to keep your kids happy and healthy. And I can say this so definitively because as parents, and particularly as mothers, we're going to do everything we can to make sure our little ones are taken care of. We're going to bend over backwards time and time again, to make sure they've had enough to eat, ensure they get enough sleep, confirm that their greatest and smallest needs are being met. We just can't help ourselves. We're going to minimize their suffering, and in fact, eliminate it whenever possible. Instinctively, we're going to try and keep them as content as possible at all times - without even thinking about it. So what we do have to think about - is the idea of putting ourselves first. We actually have to make an effort to do so - an effort that is vital to our health and well-being. And truthfully, to the health and wellness of our children, too.

The healthier we are, the better care we can give to our little ones. The more rested I am, the better equipped I am to handle my gals. The less stressed and more relaxed I am, the easier it is for me to enjoy every moment with those munchkins.

So just think:

How many times have you said to someone, "My little one does so much better with an hour of down time or quiet time during the day." Yeah- well guess what? So do we.

And how many times have you turned the world upside down to make sure you little one gets in a nap?

You shush the dog, catch the mailman in the driveway, put off running the laundry, the dishwasher, or taking a shower - just so the house stays as quiet as possible because you know how important that nap is to your child. Well, guess what? Your nap is just as important, too.

Maybe you take one before the kids come home from school, or maybe you ask your husband to take over for 30 minutes after work, or maybe you enlist your neighbor's daughter to play with the kids while you rest. However you make it happen - make it happen. You know you'd do the same for your kids.

Deirdre was getting those strawberry cupcakes one way or another. There was no way I was going to let her down. I just have to remember that I can't let myself down either. It's not fair to me, and not fair to her either. I owe it to her and her sister to be healthy. And from the assertive way Deirdre carries herself, I don't think she'll let me off the hook for anything less!

The Us in Lupus - love the new site!

2011-10-05T08:00:00.001-04:00

It's hard to get too excited by anything you read in the doctor's office, but just yesterday, I found myself genuinely wowed over a pamphlet that is being distributed by Human Genome Sciences and Glaxo Smith Kline, the makers of Benlysta. They've launched a brand new lupus site and campaign, called the US in Lupus. It's a great site - and the information they provided in the brochure about collaborating with your doctor to ensure effective treatment was right up my alley. I won't say it was like reading a page right out of my book...but it was awfully close!

I'm so impressed with the professional look and feel of the whole thing - check it out here! You can join the community, as I did - but I haven't been a member long enough to tell you what's in store. I'll report back once the emails/tips/conversations/benefits start flowing!

STOP in the name of Bernie: lupus lessons learned along the way

2011-10-03T17:57:00.001-04:00

Bernadette, Deirdre and I went to the store the other day. It's about 4 miles away, but it took us about 20 minutes to get there. No, there wasn't any traffic, and no, we didn't have any car trouble. What we DID have was a 1-year old who is prone to motion sickness.

That's right - little baby Bernadette is a cookie-tosser. She's lost her lunch (or whatever meal she's just eaten) on almost every other trip we've taken...and when I say trip, I mean anything over 15 minutes. Her dad, the motion sickness king, tells me that turning her baby seat around in the car will help, and that while he doesn't remember getting sick at quite that young of an age, he has heard stories, and he was pretty much the same way. (Grandma Gorman - feel free to weigh in on this one. Suggestions are welcome!!)

Truth is, Deirdre's been prone to motion sickness, too, but never on such short trips. Her moments have come on winding, hilly roads - understandable to say the least. And of course, little Bernie's episodes are understandable, too - now that I know what's going on.

So I've been rethinking our routes, attempting to find the straightest path to the grocery store, the fewest number of stops to church, and the least jarring way to the dry cleaner. But no matter what the path, I go it slow. Like, really slow.

Which brings me to my lupus tie-ins: one, don't judge a book by its cover, or rather, a car by its speed, two, embrace the art of punctuality, and three, learn to slow down and relax.

One is obvious - since I've had lupus, I've become a much less judgemental person. Whether it's having experienced the rashes and bruises, the debilitating arthritis, or the significant hair loss, I've learned that you really never know what someone might be up against in their personal life. I'm sure, at various times in my lupus career, people have really wondered about my appearance. And I'm sure they've made judgements about why, when, and how. But thankfully, I no longer do that to others. And now, I'm going to have the chance to apply that methodology to those slow, Sunday drivers that used to drive me absolutely bonkers. From now on, they will no longer be getting the honk, honk, beep, beep from me. No - starting today, I'm going to be the one getting the honks. Maybe I'll have a "Motion Sick Baby on Board" sign made...or maybe not. Maybe I'll just start by blogging about it, so then maybe you'll think twice the next time the gal in front of you eases into a stop sign, and even more slowly eases back on to the gas. If it takes an extra 20 minutes, little Bernie, I've got twenty minutes. For you, anything.

Which brings me to #2 - which is the art of punctuality. If you recall, I'm a self-declared late person. I'm late for everything. I try not to be, but I just end up 15 minutes late to just about every event I go to. For some reason, doctor's appointments and Deirdre's school are above reproach (thankfully), but if it's church, a dinner date, or coffee with a friend, I just can't manage to get there on time. I'm getting better - but I'm far from punctual.

However, the fact that it now takes me an EXTRA 15 minutes to get anywhere has encouraged me to rethink my timing. And if, in fact, I have to build an extra 1/4 of an hour or more into my scheduling procedure, perhaps I'll just learn to factor in a full 1/2 an hour. Maybe, this is a blessing in disguise. Maybe I will become the most punctual person ever.

Okay, so maybe not. That was my optimism talking. But I do think improvement in the late department is possible. I might even say likely.

Now my third point is just proof that life really does come full circle. For years since I was diagnosed, I’ve been touting the importance of slowing down, relaxing, and taking your own sweet time. You have to when you have a chronic illness that inflicts pain and fatigue – being rushed, stressed, or on deadline really aren’t ideal for many lupites. So this slow down thing really isn’t a huge shock to me. It’s a bit unnatural, of course, but it’s an opportunity, right? After all, slow is slow, and sick is sick. If slow prevents sick, then I'm all for it. If rushing from one errand to another doesn't work for my baby girl, then rushing will no longer be. I've officially adopted the slow and steady method of driving - no quick movements - no herky jerky turns. Just relax and enjoy the ride.

…with a bib on, Bernie, if you don't mind.

Lupus in the top ten: recognition is the first step

2011-09-30T08:00:00.000-04:00

I came across an Article recently entitled "13 Most Difficult Disease to Diagnose". I scanned the list, and there was lupus, front and center. I know, I know - on one had, you wish lupus wasn't part of that list, but on the other hand, I guess we should be pretty pumped that the disease is being recognized for exactly what it is - an evasive, baffling disease that takes all too long to diagnose. Here's hoping lists like these will only help spread awareness, enlightening people along the way.

If even one extra person a day can say, "Lupus? Yeah, I know what that is", I think we may be headed for great things!!

Insurancequotes.org

Lupus fatigue: From "Not Tired" to "Tired" in Sixty Seconds

2011-09-28T08:00:00.009-04:00

I know I'm prone to fatigue, and I know it can come on fast - but sometimes I forget how fast.

Lately - I've been pretty good about starting my nap at a decent time every afternoon. It helps that the girls start their afternoon siestas around 1:00 or 1:30pm - I have no excuse but to find my way into bed at least by 2:30pm. I can lollygag for only so long - the quiet house, the still children - it really does make for a great napping environment.

That said, Deirdre and I decided to push the envelope one day this past weekend. Her sister went down around 1pm, but she and I were feeling good. Not a sleepy eye in sight - and we decided to capitalize on it. At about 1:30pm, I suggested we take a walk. She decided to ride her bike, and we took Darwin and set out for a leisurely stroll. I figured we'd return by 2pm, and I could have Deirdre down by 2:15pm. I could still make my 2:30pm goal without any trouble at all. In fact, my energy level when we walked out the door was so good, I even thought about what I would do when we returned - I figured I'd have a few minutes after I put Deirdre down to fit in just a quick to-do. Nothing fancy - I still knew I had a 2:30pm deadline to make.

But I didn't make it until 2:30pm. I didn't even make it until 2:15pm. At 2:05pm, it was like I just crashed. It was that wall of fatigue that we lupus patients talk about so often - that wave of complete exhaustion that washes over you in a way that almost debilitates and suffocates. It was and is an awful feeling - particularly with little Deirdre at my side - but thankfully, we were already home from our walk, and her Dad was able to step in and take over.

That fatigue just came on so fast -it was like instant deflation - like I'd suddenly taken my foot off the gas, and I just...stopped...moving...forward.

Of course - fatigue comes with the package. I know this. I take my nap because of it. But I didn't see this wave coming - and I didn't like being blindsided. But - I knew I was pushing the limit. I knew it was a risk taking a walk at 1:30pm. Deirdre and I could have just laid low, done a puzzle, flipped through some magazines, or read a book or two. We could have sauntered upstairs, and she could have been in bed by 2pm. I might or might not have have felt that fatigue come on - who knows? Maybe I would have hopped into bed, and never felt the wave of exhaustion, or maybe I would have felt it, but from beneath the covers, snuggled up in my bed with my eyes closed.

Either way - I won't forget the error of my ways. It's not a big deal - but I could have made it a lot less of a deal, had I just played it safe. It does remind why I take a nap in the first place. If I didn't, I would feel that wave of fatigue every single day. And it wouldn't just be once a day, it would be multiple times a day, which would eventually run together so much so that it would feel like I was fighting that debilitating fatigue every moment of every day. And who wants that? Who needs that? Who can function like that?

If there's something I can do to prevent myself from ever feeling that constant fatigue again - you better believe I'm going to try. Bring on the napping hour - I'm a believer!

Everything is NOT possible - even in the Big Apple.

2011-09-26T08:00:00.010-04:00

I'm headed up to NYC this week to speak about life, Despite Lupus, at the Hospital for Special Surgery on Thursday the 29th - it should be a great session! I'm working with a great group of people at HSS, and their annual series of SLE Workshops always seems to draw a crowd. We have a good number of people registered, and I'm really looking forward to the open forum after the formal part of my presentation.

I'll head up Wednesday, the day before the event, just to get settled in and give myself plenty of time to rest up for my talk. My original plan was to pull a SuperMom move - getting up at the crack of dawn on Thursday to catch an early train to New York. I could have arrived around 11am, shot over to the hospital in a quick cab, regrouped and refreshed for my talk from 12-2pm, shot back to the train station for an afternoon train and arrived home in time for dinner to see my girls. But as most of us know, pulling a SuperMom maneuver never really works the way you want it to. I would have risked my health - foolishly overbooking myself just to prove I could do it. I would have arrived home in a pretty sorry state - and what good would that have done? Would Deirdre and Bernadette have been oh-so-proud of me for pulling such a stunt? I don't think so!

No, it was only a matter of pride that I considered a same-day trip. (My brother-in-law lives in the city and is putting me up for the night - so I can't even claim that it was a financial decision!) Just a few weeks ago, a girlfriend of mine recounted her recent whirlwind business trip to New Jersey - up at 5:45pm, back in time for a parent-teacher conference that evening at 7pm - and I remember thinking "I wish I could do that." But then I realized, you know, I really don't wish I could do that. She was tired, and I was tired just thinking about what she had done that day.

With a chronic illness - you just have to be smart, and sometimes that means playing it safe. Even if all of the other moms on the block are doing it, I just can't feel bad about doing it my own way. Lupus is not a disease to be toyed with - and I don't plan on starting anytime soon!

So if you'll be in NYC on Thursday, come by and say hi. Just make sure you give Roberta at HSS (212.606.1033) a call first!

"Welcome to Holland" comes full circle

2011-09-23T08:00:00.039-04:00

Those of you who have read my book - including the very last page! - know that I finish up Despite Lupus with a story about a woman on her way to Italy. Where she ends up and how she deals with it provides the link between Italian vacations and life with lupus (if you were wondering), and the moment I heard the story, I knew it was going to play a part in my book.

After I'd written the entire book, including an adapted form of the Holland story, it came time to cite everything I used that didn't originate from this little brain of mine. That included the Holland story. But finding the origin wasn't as easy as I thought it would be. I searched for the story online, but to no avail. I asked for assistance from super sleuths in the family, and got a little closer, but still didn't have the concrete answers I needed. Eventually, I tracked down the person who had recounted the story to me in the first place, but he couldn't provide any additional information. What he could do, however, was refer me to the friend who had passed the story on to him. I met up with said friend for all of about a minute one morning after church, just long enough to exchange emails so that she could send the story (and its authorship) on to me. Later that day, I received the email, cited the story, and published my book. It was a missing link that had kept me searching for weeks, but finally, I had found the answer and could publish my book.

Fast forward more than two years later - and Deirdre arrives for her first day of preschool. She loves everything about it - her teacher is the best - and all is good. Within a day, I get a generic email from her teacher with a rundown of the days activities, and then shortly after that, I get a personal email with four adorable pictures of Deirdre's first day of school. So thoughtful, so thorough - I just loved it.
I noted her email address for future emails, and that was that.

Later that day, I was searching through some old emails from my book publishing days, and lo and behold, there was an email from Deirdre's teacher...who back then wasn't Deirdre's teacher...but is the same woman who had closed the loop on the Welcome to Holland story two years earlier. She was the friend of my friend...she was the one who helped me tie up the very last loose end of my book...she is the reason that story appears in my book today.

When I put two and two together - I was stunned. Of all the teachers in all the schools - what a connection! Deirdre's teacher now has a signed, dedicated copy of Despite Lupus in her possession, just a small token of my appreciation for her help several years back.

I guess our paths were meant to cross - two times over!

The lupus dilemma: what to do with three spare hours

2011-09-21T08:00:00.014-04:00

Deirdre started preschool last week. She goes two days a week, three hours each day, and she absolutely loves it. Here she is, "schooling" away:

Before school started, everyone told me not to get too excited about those three hours. "They go so quickly", my girlfriends said, or "you'll barely have time to get groceries and put them away before you have to pick her up." Well - I guess I'm still in the honeymoon phase, because those three hours seem like the most free consecutive hours I've had yet as a mom!

That said, in true overachiever/doer fashion, the week before school started, I was dreaming about what I was going to accomplish during that time. It wasn't just what I was going to do, it was what was I going to do first. I had those two mornings a week jam packed with stuff, my strategy planned out to the letter: I would drop off Deirdre in the morning, and take all of my "work" stuff with me so that I could just go from there to camp out somewhere with Internet access. Bernie would go down for a nap within about 30 minutes after I left, so I wouldn't feel bad about having Paola put her down. I wouldn't be missing much together time with little Bernadette because she'd be sawing logs, and what better time to get work done then when neither of my girls needed me? I'd work furiously, run errands, catch up on calls until the moment I had to pick up Deirdre, and I'd swing back on my way home to pick her up, and the Gorman girls would have spent their mornings just the way they wanted to.

But then reality set in. Or should I say, my husband got a hold of me. He caught wind of my plans for the whirlwind of activity, and he promptly intervened, reminding me what an opportune time those few hours would be to catch up on my sleep. (Bernadette's recently started getting up about an hour and a half earlier than she had been...sometimes even 2 hours, so I've been a pooped pup!) I told him that I didn't need a nap, that I was going to take one in the afternoon like always, and that I really needed to get my stuff done in the morning.

And then he looked at me, just as every husband of a driven, overachieving lupite should look at his wife, and I knew he was right. Of course I should capitalize on those few precious hours when I could catch some zzz's. That was the perfect opportunity to get back those extra few moments of sleep that Bernadette had snagged in the wee hours of the morning. A quiet house, 1 gal gone, the other off in dreamland for a good two hours - what better circumstances could I have?

I didn't need to sleep for the entire time, but I at least needed to work it into the mix. Even 30 minutes would be good. Anything to prevent that whirlwind of activity from taking over - anything to break me of my tendency to overdo.

So that's what I've been doing. It's only been three days, but I like where this is headed. I like the thrill of stealing a morning nap once Bernie goes down (and since I'm not rushing off to do book/blog stuff, I get to put her down for a nap myself. Bonus!) I'm sure as the holiday season approaches, and my list of to do's increases, I'll be tempted to skimp out on that morning siesta. And maybe I'll be able to at that point. Who knows? Right now, Darwin and I are enjoying our new morning ritual.

The bullet points of lupus

2011-09-16T08:00:00.002-04:00

I messed up.
This summer, a few weeks before my seminar in Cambridge, I contacted the Features Editor at the Cambridge News, the major paper in the city, to see if I could get a story done about the event. I'd done my homework, found out who the right person was to talk to, wrote a letter outlining who I was and why I was speaking, and sent it on its way.

But the implication that I sent an "outline" of sorts might not be too accurate. For some reason, when I typed up my little spiel, I was feeling particularly chatty. And verbose. And descriptive. My letter was more than a page long - and contained bits about lupus, bits about me, bits about my book, and bits about the lupus community in Cambridge. There were so many little bits - I'm sure the Editor didn't even know where to start. I'm not saying the information wasn't pertinent - it just wasn't presented in a succinct manner. And I'm sure my little dissertation wasn't ever read. I bet it wasn't even scanned for highlights. (Although for the record, I did BOLD a few important phrases.)

My hunch, however, is that a set of bullet points would have gotten a scan. Maybe even a second glance. Maybe even a call back. And maybe even an article.

Hard to say, but sometimes, I think people might be more receptive to a bullet point version of our lives with lupus, rather than taking in our whole life's story in one fellow swoop, know what I mean? (Again for the record, I don't normally bore people to tears with my saga, and I'm sure you don't either - but I do have the advantage of just referring them to my book. Who knows what I'd want to include if I wasn't published?!) But I definitely see the value in doing a shorter, to the point version in some (if not most) situations. If I had to present my case, my personal bullet points would look something like this:

*Diagnosed at 26 years old.
*Didn't adjust well - kept fighting the disease, rather than listening to my body.
*Got really sick. Struggled to put one foot in front of the other. Literally.
*Learned from my past mistakes of feeling invincible, and made some major lifestyle changes.
*Downshifted at work, tried new, heavy duty medication, slept more and did less. Like, a lot less.
*Saw the benefit of those changes almost immediately - and decided to tell other people about it.
*Wrote a book, started a blog, and continued to strive for health and wellness. Every day, all year long.
*Got well enough to have a baby, and then another. Never lost sight of the need to take care of myself.
*Continue to put my health first - asking for help, resting when I need it, and managing my life in an effort to be well enough to take care of munchkins #1 and 2.

The next time you think about telling your long, sordid lupus story, maybe try the bullet point approach. You might get some press, or at least more than a blank stare!

Hitting your lupus stride

2011-09-14T08:00:00.014-04:00

We had a great couple of vacations this summer - one of which was just at the beginning of August - our trip to England. It was great - the girls loved it, and we got in some really wonderful family time to boot. But did I do much exercising while I was there? Did I make time (or have time!) to run three times a week like I do at home? Nope. I missed almost two whole weeks - and when I came back, I paid for it.

The first time back on the treadmill wasn't awful...it was just hard. It was like all of the stamina I'd built up over the past few months had just withered away, and I found myself huffing and puffing around the half-way point. I was able to complete my workout as usual, but it didn't feel as good as it had. Until I hit the 2-week mark. After two weeks, once I'd run about 6 times, I hit my stride again. I felt better than ever - like I was at the top of my game - like I could have run for a couple of minutes more.

And that's the kind of stride we all want to hit with lupus. We all want to settle into our new life with lupus (including the compromises, limitations, and adjustments) quickly - wishing that our "new norm" didn't feel so "new." But it takes time - just like anything. We can't expect to instantly feel at home with the idea of slowing down, resting more, or passing on activities. It may not be natural to suddenly ask for help and then accept it, but the longer we put it off, the harder it will be once we start.

The more often we "live well", the easier it becomes to make the choices to do so. The more often we say "yes" to that helping hand, the more natural it will feel to ask for the assistance in the first place.

It only took me two weeks to get back on the treadmill track - imagine if you had just two short weeks of living well under your belt. Start today, and those choices will seem more natural than they did before. And you'll feel better, too!

Lupus goal setting: the art of working backwards

2011-09-12T08:00:00.008-04:00

Every mother knows - if you want to get your kids to bed at a certain time, you have to eat dinner at a certain time, in order to allow enough time to eat, wind down, and do the nightly routine.

And if you want to eat dinner at a certain time, you have to bring the kids in from playing outside at a certain time.

And if you want the kids to come in from playing at a certain time, you have to put the kids down for a nap at a certain time, so that they wake up in time to get in some good playing time before you call them inside.

And if you want your kids to go down for a nap at a certain time, you have to eat lunch at a certain time.

And if you want to eat lunch at a certain time, you should have your morning snack at a certain time, to ensure that lunchtime isn't spoiled.

But before that? From the time the kids wake up until about 10 o'clock in the morning? Sky's the limit! You're free and clear to do whatever whenever - no set plans at all. Not a one. Just relax and enjoy. That is, of course, as long as you fit in eating breakfast and getting dressed.

Okay - so that's not exactly how rigid our days are in the Gorman household. But there is a bit of truth to all that. When you have a goal in mind, as a mom, you know you have to work backwards. You have to allow enough time before said goal to get the kids positioned (dressed, fed, "played", "peed", or what have) to enable yourself to even shoot for said goal. You have to make choices along the way so that you set yourself up to succeed - choices that involve picking one activity over another, or cutting one activity short in order to fit in the next.

This summer offered a perfect example. About three times a week, we headed to the pool about 10 minutes from our house. I learned very quickly that we couldn't just "hop over to the pool for a quick dip." We had to prepare, and plan, and strategize. Turns out, it takes almost 35 minutes to get ourselves dressed, ready and to the pool. It just does. Yes, I had a pool bag ready to go at all times. And yes, the kids' suits and swim diapers were right by the door for a quick get-away, but I clocked it, and we just couldn't make it happen any faster. Not only that, but once we got to the pool, we only had so much time to swim in the baby pool, eat lunch, take a plunge in the big girl pool, shower, and be home before naps. I'm telling you - I had to start working backwards from about 9:30am, just to make sure our 2pm nap time happened!

Thankfully, I spent almost 8 years before having kids figuring out how to "work backwards." With lupus, that's just what you have to do - whether you're trying to fit in a nap, cut down on errands, or fit in a healthy exercise routine - you have to plan the day so that it fits in with life with a chronic illness. If you're going to enable yourself to live well, you have to set yourself up to live well, and make choices that allow you do to so. You may not be able to accomplish what you used to - or it may take you more time to accomplish them. Thus, you have to account for those changes, and work backwards so that you don't compromise a nap, downtime, or just "you" time.

For me, it was always harder to "work backwards" and "choose wisely" when it was just for myself. With my girls, I can see how they thrive on routine. As parents, you realize you're doing them a favor when you keep to a pretty set afternoon nap, bedtime and eating schedule. But as adults, we give ourselves a heck of a lot more leeway, don't you think? We think we can get away with pushing ourselves a little bit here, or cheating a little bit there. But in the end, we really are sacrificing our health and wellness, something we hardly ever do to our kids! (Oh sure - just try and push a 3-year old beyond her limits, or cheat a little 11-month old out of her morning nap - we all know how THAT turns out!)

Truth is, maybe if I'd been diagnosed with lupus after I had kids, the idea of working backwards to reach my wellness goals would have come easier. Maybe yes, maybe no.

But the good news is that now, my worlds are colliding. Practically everyone in the family needs a nap, everyone in the family does better on 10+ hours of sleep, and everyone in the family benefits from a healthy diet, a little exercise, and some good old fashion down time. I have no excuses not to follow suit.

There's a story that's been told in the lupus community for many years, called the "spoon theory", written by Christine Miserandino. It speaks to the point of making choices in an effort to manage your life with lupus. Read about it here - and here's to working backwards!

Despite Lupus seminar in New York City. Join me on Thurs, 9/29!

2011-09-09T08:00:00.003-04:00

A few months ago, I mentioned an interview with a doctor from the Hospital for Special Surgery, and I highlighted some of the great SLE workshops they've held throughout the year. They're kicking off their fall workshops for the year, and they've asked me to be a guest speaker for their September event. I'm honored to do so!

Join me on Thursday, September 29th from 12-2pm - I'll discuss some of the strategies I've used for living well with lupus, and then we'll have an informal open discussion after my presentation. Looking forward to exchanging ideas on how to make life with a chronic illness better!

Here are the details for the event - just be sure to contact Roberta Horton, the Director of Social Work Programs at 212.606.1033 by Wednesday, 9/21. Advance registration is required, and space is limited - so be sure to contact Roberta soon!

Lupus Workshop: Thursday, Sept 29, 12-2 PM

Place: Conference Room A, 2nd Floor
Topic: Living Well, Despite Lupus!
Guest Speaker:
Sara Gorman, health blogger, lupus patient of 10 years, and author of “Despite Lupus: How to Live Well with a Chronic Illness”

TEXT from the event's FLYER:

If you have lupus, you know first-hand the emotional and physical challenges that can accompany life with a chronic illness.

Please join us for this special guest presentation by author and health blogger Sara Gorman, who will share her perspective on her most important lessons on living well, despite her illness.

Sara Gorman was diagnosed with systemic lupus at the age of 26. As she relates in her book, she was determined not to let lupus rewrite her plans for the future, as she fought to maintain her demanding work schedule, social life and invincible attitude. But after four years, she felt she was “fighting life, not living it.”
In Sara’s words, she began to “work with the disease rather than against it, and decided to start living well – despite lupus.” Learn about the steps she took to redirect her life to achieve this.

A native of Indiana and graduate of the University of Notre Dame, Ms. Gorman resides in Virginia with her husband & two young daughters.

After the presentation, Ms. Gorman will join us for an informal group discussion where members can share their thoughts and experiences regarding this personal topic, as well as an open discussion.

You will also have an opportunity to meet Lysa Silverstein, our new Social Work Intern and SLE Workshop Coordinator. Please contact Roberta Horton, at 212.606.1033 with your name and phone number to register.

***

I'd love to see you in NYC - hope you can make it!

Lupus protein falling...the Cozaar is working!

2011-09-07T08:00:00.000-04:00

If you've been following along, you know that I've seen my fair share of 24-hour urine tests over the past few months. Seems that I've been spilling protein, a sign that lupus is afoot in my kidneys. Good news is that I am still showing no other signs of lupus activity - no joint pain, swelling, or increased fatigue (my three telltale signs for active lupus) - and my blood tests haven't seen any changes at all. That was the good news.

But now, after a handful of 24-hour urninalyses, and the addition of the hypertension medication Cozaar to my regimen, which is often prescribed to reduce the presence of protein and protect against further kidney damage, I have REALLY good news to report: the level of protein in my urine is normal. Yippee!!

Normal, that is, for a lupus patient. I still have protein, and if anyone other than my rheumatologist were to come across the test results, there would be red flags raised all over the place. But that goes with the territory, right? (We lupus peeps just throw everybody for a loop, don't we?)

So onward and upward. I'll continue to take my medication as prescribed, and I vow not to get too cocky about my oh-so-low protein level. You know how it goes - you hear from the doctor that your health looks good, so you feel compelled to push a little harder, sleep a little less, and do a little more since you're feeling so good. Since I received the good news with the good number - I've been inching my bedtime back ever so slowly. I'm juggling a couple of major projects right now - and while I'm thoroughly enjoying myself - I have to make sure I don't fall back into my old tendencies of pushing, pushing, pushing to get things done. There's only so much time in the day - and all of my projects and their associated to-do lists will still be there in the morning.

At least that's what I tell myself. Every morning this week, those lists have been right where I left them the night before. But I'm still skeptical!

ALR Indy walk this Saturday. Don't miss it!

2011-09-05T08:00:00.043-04:00

Are you a lupite living in the Indianapolis area? Join the Alliance for Lupus Research and the Indy lupus community as they celebrate their third annual Indianapolis Walk with Us to Cure Lupus this Saturday, Sept. 10th at 10am at the Michael A. Carroll Track and Soccer Stadium on the IUPUI Campus.

Registration opens at 9:00 AM and the walk begins at 10:00 AM. 100% of your contributions to the ALR go directly to support lupus research programs.
Individuals and teams can sign up at walk.lupusresearch.org or call 1-866-925-5257.

Alliance for Lupus Research (ALR) is dedicated to funding biomedical research to find better treatments, and ultimately, to prevent and cure systemic lupus erythematosis (lupus; sle). ALR is the largest provider of private funding for lupus research in the country; and was founded in 1999 by Robert Wood Johnson IV, a member of the founding family of the Johnson and Johnson Company. Since its founding, ALR has given more money to lupus research than any non-governmental agency in the world; to date $60 million has been committed.

Lupus instinct - go with your gut!

2011-08-31T16:51:00.000-04:00

Babies are fascinating, aren't they? (Baby Bernadette happens to be adorable, too, so it makes it that much easier for wonderment to take hold!) But I've recently been observing Bernie when she takes a
6- oz. bottle, and I'm amazed with the pattern that has emerged.

About 80% of the time, she drinks the whole thing, right up until about 5 oz. At that point, she usually stops drinking, comes off the bottle, and looks around, completely satisfied. But if I sit there long enough (like 30 seconds) with the bottle close by, she'll see the bottle, decide she should finish off the rest, and downs the last ounce, only to have that last ounce come right back out about 3 minutes later. It's as though her gut is telling her that 5 oz. is sufficient, but once she lets her head in the game (by seeing the unfinished bottle and thinking that she should just finish off what she started), she pushes herself an ounce too far and then she pays for it.

Now - don't get me wrong - the whole ordeal isn't a big deal. She could care less whether she spits up or not. She's not in any pain, she's not inconvenienced in the least, and I think it's only her mom and her mom's clothes that really get the brunt of her decision making process. But I've realized there's a pattern. And I know I'm guilty of pulling the same stunt myself.

How many times have I been running around like crazy, trying to accomplish this, or do that, and I find myself yawning. My gut reaction? Wow. I need a nap. Right away, my body signals that it's time to stop. But ever so quickly, my brain decides to weigh in on the decision, and before you know it, I find myself silently chanting things like, "finish what you started", "don't leave it for later", or, the worst, "just one more minute."

I KNOW what I should do - my body's giving me the international sign for fatigue, right? (Well - I know - it could be a sign of something else involving oxygen, carbon dioxide, and the like - but just let me run with the fatigue thing for a minute.)

So my gut instinct - my very first reaction - is that I should take a nap, or at least stop what I'm doing and make a quick assessment. But my very NEXT reaction is to let my accomplish-driven personality take over. My inherent desire to leave no task undone (or zero milk in the bottle, if you will), takes over - and I think myself into doing too much.

I realize Bernie isn't suffering from any sort of 11-month old can-do attitude syndrome, but she is thinking the whole thing through a bit more than maybe she should. Good thing is that most of the time, I help her decide wisely. And thankfully, I listen to my gut a lot more than I used to. Let's hope I can continue to help Bernie listen to hers!

Vitamin D: potentially stopping lupus in its tracks

2011-08-26T08:00:00.001-04:00

I know I've blogged about Vitamin D before (here, here, and here), but I thought this latest article (brought to my attention by the Alliance for Lupus Research) from the NY Daily News is a good one. I especially like the following excerpt - a take on Vitamin D that I haven't heard before. (And if I have heard it, it didn't sink in!)

"The hope is the Vitamin D doses stop or slow down the part of the body that can overactivate the immune system and trigger lupus troubles, which include joint pain, fatigue or fever. Or, as Cynthia Aranow, a rheumatologist leading a Vitamin trial explains, "Are there ways of lowering what drives lupus?""

Enjoy the article, and the weekend. Looks like many of us, including Despite Lupus headquarters are going to feel the effects of an earthquake and a hurricane within days of one another. Stay safe!

Lupus lesson: making "the best ever" stick

2011-08-22T08:00:00.058-04:00

I admit that I'm a frequent user of the hyperbole - the phrase "the best ever" has been part of my repertoire for a very long time. In fact, I heard Deirdre saying it just the other day. That shows you how often it comes up in conversation among the Gorman girls. (And yes - Deirdre and I agree that our recent trip to England really was "the best ever.")

But the idea of feeling "the best ever" came up at my most recent talk in Cambridge - though it's not the first time I've heard about it. When I hear from other lupites what scenario makes them feel the "best", I get a ton of responses: some feel great on vacation, others feel great staying home. For others, it's after a weekend of napping, an afternoon of walking, or following a massage, a hot bath, or both. Maybe your "best ever" comes after an emotional catharsis or an alleviation of responsibility. Whatever it is, have you ever thought of making note of that great, lupus-free moment, and then attempting to recreate that scenario so that you can feel "the best ever" more often?

I used to think that I felt "the best" after about 4 days into a week long vacation. By that time, I would have had time to recover from the stress and/or fatigue of traveling, the stress of my job, and the general worries of leaving home with errands/task/duties unfinished. By day 4, I was feeling pretty good and I'd forgotten about most of that stuff. That was, of course, until day 5 hit...and I realized that my vacation was coming to an end, the stress and fatigue of traveling was right around the corner, and my job and everything that went with it was waiting for me. That was enough to undo all of the good that the vacation was supposed to do in the first place.

Of course, this happens to most of us - with or without lupus. But the question that I wanted to answer was this - in the course of my normal life with lupus, how could I make every day feel like day 4 of vacation? Sure, doing away with a full-time, 10-hour a day job was a step in the right direction...but that wasn't the only thing that was stressing me out or causing me to flare. The fact was that even outside of my work, I was constantly on the go. And before a vacation, I was the worst. I was always running around, trying to squeeze in every last errand before leaving. I would clean the house and do all of the laundry the day before, and I would pack the morning I left. And the moment I stepped off of the plane after vacation? I would hit the ground running - pushing myself to pick up right where I left off. No pacing, no easing back in. Just full speed ahead.

Was I allowing my vacation (or even one measly day of it - day 4) to do any good? Was I doing everything I could to manage my disease? Not really. Even on the smallest scale, what could I do to make the rest of my days as worry-free as day 4?

I decided to start with day 3, 2 and 1 of vacation. But to do that, of course, I had to start with day 1, 2 and 3 BEFORE vacation. I'd have to pace myself for days before leaving. I couldn't leave everything until the last moment, and most of the time, I'd have to forgo a slew of errands/tasks/to-do's before leaving so that I was in good shape the day I left. I'm telling you - it worked wonders...and it continues to work today.

So here's to finding your own personal "best ever" and making it last...at least until day 4.

Lupus accommodations at work - check out this resource!

2011-08-18T10:37:00.000-04:00

My local lupus foundation just included a link in their most recent e-newsletter to the Job Accommodation Network, an organization that provides free expert advice about job accommodations for disabilities in the workplace. I'd never heard of JAN before, so I took a moment to check out the site - and there's a wealth of information available for people with lupus. Here's the link to go directly to the lupus part of their website - what constructive, valuable information!

Making the most of your Can-do list

2011-08-15T08:00:00.011-04:00

One of the topics we talked about during my most recent seminar in Cambridge was Guilt - why we feel it, but most importantly, how we can release ourselves from it. I found in my early years with lupus, the more I thought about what was suddenly out of my reach due to my illness (work a full time job, get pregnant whenever I wanted, enjoy a long day at the beach), the more guilty I felt about the limitations the disease put on my life and the responsibilities and expectations I could no longer fulfill. But now I know that I was too focused on what I could no longer do because of lupus, rather than what I could still do, despite lupus.

One of the ladies attending the workshop echoed this sentiment, citing her travel "can-do" list as a perfect example. She admitted that there were things she could no longer do because of lupus - adventures like climbing Mt. Everest or hiking the desert being examples. In addition, she knew there were places she couldn't go because of her disease, countries that required that she get a live vaccine to get into, or that had insufficient health care facilities for emergencies. But after she compiled a list of her "can't do's", she realized there were a heck of a lot of spots where she could go. Her "to visit" list dwarfed her "can't visit" list by miles.

And the same is pretty much true for all aspects of our life with lupus. I've met people who, because of their illness, can't finish school, work full time, bear children, or a dozen other limitations. And those limitations are hard to handle sometimes. But for everything that we can not do, there are a ton of things that we can still do. I propose that we work on beefing up our "can do" list first!

You are what you HEAR you are

2011-08-10T08:00:00.016-04:00

Okay, so I admit: when you take a 2 1/2 year old and a 10-month old to Europe, you're bound to have some stories to tell. Thankfully, most of our stories are good ones. The girls are great travelers - pretty easy going, yet easily excitable and entertained - which is great. In fact, I'd categorize our 7 hour night flight to England as spectacular. Bernadette fell asleep taking her bottle during take-off, and we didn't hear from her for 3 hours. She woke up for about 45 minutes after her monster siesta, and then went back to sleep for another two. Really. She did. In fact, she couldn't have been more cooperative. *
Deirdre was awfully compliant, too. She fell asleep less than an hour and a half into the flight, and logged about 2 hours straight. She woke up for a little bit, but then fell back to sleep for almost another two hours. It allowed Johnny and me to get a little shut-eye during the flight, at least enough to get us through customs, checked in and settled in the hotel room before feeling the jet lag. But a couple of naps later and a good dose of fish and chips (well - actually - of scones and crumpets), and we were ready to rock. All in all, a fabulous showing by the Gorman girls - one that we would repeat in a heartbeat.

The return daytime flight to D.C. was good, too. Not quite as spectacular as the outbound flight, but still a good one. (Encouraging, because both Johnny and I have caught a case of the travel bugs. It's hard not to when we have such a good trip!) And the oohs and ahhs over the girls from fellow passengers certainly helped. When kids are being good on a plane, they always look adorable, don't you think? And the people sitting around us were nice of enough to recognize that fact. In fact, one lady pulled me aside while Bernadette and I were waiting for the loo, telling me how sweet and adorable the girls were. Bernie ate it up, of course, throwing her cutest looks right there on the spot. The woman also remarked on what good travelers the girls were - and I replied with a "thank you, but the flight isn't over yet" kind of thing. And she replied, "Well, it helps that you and your husband are so calm." Nice, right?
*
So then, fast forward about an hour, and Bernie finds herself ready for a nap. Unfortunately, she was having a tough time getting comfortable. Her fussiness lasted all of 45 minutes or so, and I had to do a lot of fancy footwork to get her settled and keep her quiet, but it was okay. No real screams or outbursts - just fussiness. But I can tell you - normally, by about minute 25, I would have been a little fussy myself. But because someone had just remarked upon my "calm" demeanor, I actually kept it together. I mean, how could I not live up to the title? I couldn't believe how powerful those words were - that they actually prompted a series of actions and reactions that allowed me to keep my cool. It didn't even feel like I was trying to stay calm - I just was. My fellow passenger's compliment gave me the boost I needed to think and act positively - all while juggling a fussy, sleepy baby. Fascinating, huh?

So we discussed a very similar phenomenon at my lupus seminar in Cambridge. We talked about the fact that so many of us don't look sick, even during the worst of flares. And with that incongruence of what we look like compared to what we feel like, we often hear "You look great", which, on a really bad day, can be a tough one to field. I've been there - I know.

But how about looking at it from another point of view, and letting the fact that someone thinks we look good be a point in our favor, one that we can capitalize on, and one that should give us a little boost, just when we need it the most? The fact of the matter is this - the phrase "you look great" is a compliment. I know there are times when people aren't being sincere, there's baggage attached, or you feel like your physical symptoms are being downplayed. But put those instances aside, and let's consider the generic, no-strings-attached "you look great" comment. No matter how bad you feel, the fact that someone tells you that you look good should make you feel the teensiest bit better. At least, it should if we let it.

Of course, it's not a cure-all, but it is a feel-good opportunity. And the more we allow ourselves to take these kinds of comments at face value - the better off we'll be, don't you think? Why shouldn't we get a little spring in our step when someone pays us a compliment. We have lupus, yes, but that doesn't mean we can't be hot tamales, right?

Back from the UK, with lessons learned!

2011-08-08T08:00:00.000-04:00

Our trip to the UK was fabulous!

As you can see from the pictures, the girls thoroughly enjoyed themselves. Deirdre was the sweetest little flower girl ever (biased, I know, but the pictures don't lie!), and Bernadette loved roaming the old cobblestone streets of England. They ate their way through every fish and chips joint in the country, and enjoyed every minute of it. We're glad to be back, but we're already looking forward the next Gorman adventure!

As far as the trip and my health are concerned, I don't have a single swollen to digit to report. I got plenty of rest (Johnny made sure of that), and the girls cooperated for both naps and for 10-12 hours of sleep at night. I had no excuse but to rest up! And the Despite Lupus seminar in Cambridge was great fun. We had a super turnout, and great conversation. The comments and questions were astounding. I definitely learned a thing or two!

I'll be sharing my thoughts on my most recent travels later in the week. Look for thoughts on "You are what you HEAR you are", "Making the most of your Can-Do lists", and "De-stressing, vacation style."

Virtual lupus support group, Tuesday, Aug 9th at 8pm. I'll be there!

2011-07-27T08:00:00.002-04:00

Looking to connect online with some other lupus patients in a support group? Have a hankering to meet me up close and personal...at least via a computer screen? Then join me in a week and a half, on Tuesday, August 9th at 8pm, as I host a virtual Lupus Support Group alongside the founder of Friends' Health Connection (FHC), Roxanne Black, author of Unexpected Blessings and lupus patient.

FHC was started in 1988 as a one-to-one support group for those facing medical issues. Today, it's grown into a thriving national network of health and wellness services, complete with virtual support groups where featured guests often lead the discussing. I'm thrilled to be joining Roxanne in the upcoming meeting. It's their first virtual support group devoted to lupus, so don't miss out on the opportunity to participate. I'd love to "meet" you!

All you need is a computer, preferably with a camera and audio capabilities. You'll see my mug front and center during the meeting, but if you don't have audio or video, no worries. You can type in your questions and comments via a text box and still participate.

Want to join us? Follow this link to register, and take a few moments to check out the site. You do have to be a member of the community in order to participate, but joining takes all of 4 minutes. (I promise - I just did it!) They have a ton of stuff to offer, so don't miss out.

Slowing it down - out of respect for the big girl panties, at least.

2011-07-25T08:00:00.020-04:00

Fitting with my personality, I pretty much try to do everything at record speed. I type fast, I talk fast, I even drink fast (milk, orange juice and water, at least), and when it comes to errands, chores, and other tasks - I do them as fast as humanly possibly. Time wasted is time lost in my book - but I work to convince myself otherwise.

Interestingly, two things have recently curtailed my speed-demon mode - one of which is named Deirdre and the other, Bernadette.

1) It became readily apparent on the first day of potty training a few months back that life was going to have to S-L-O-W down if we were going to make any progress. I was going to have to let Deirdre take her own sweet time, regardless of what I had on the agenda. The waiting, trying, cajoling, and convincing were a bit exhausting - at least for the first couple of days. But then, you adjust. You realize that only good things will come from spending twenty minutes in the bathroom while your cute-as-a-button 2 year old works on pottying in the big-girl potty. That reading the same books over and over again while in said bathroom actually gives you some pretty great quality time with your little lovebuggy. It was a painfully slow process in the beginning, yes - but watching her beam with pride as her hard work, determination, and our combined patience began to pay off. And what do we have to show for it? A perfectly potty-trained little lady. Sure, she still wears diapers when see sleeps, but I figure we have plenty of time to ease out of those...she's still in a crib, still napping 3 hours a day (on a good day) and 11 hours at night. Why mess, you know?

2) The second speed deterrent was when Bernadette, at about 7 months old, developed a bad case of the startle-bugs. You got up quickly from the table, she got startled. You sneezed, she got startled. You made any sort of quick, hasty movement (like, say, when you're rushing to do dishes, fold laundry, or pick up), and she would get frightened and start to cry. Thankfully, she's over it now (because SHE'S now the one making the quick moves...scooting across the floor and the like), but for the month or so that it lasted, I really had to curb my franticness. My frenetic energy wasn't well-received, and so I changed it...no doubt, for the better.

And oh, how my recent trials in hastiness reminded of my early days with lupus. In the beginning, of course, EVERYTHING slowed down, because adjusting to the pain, swelling, and fatigue was just so overwhelming. But after realizing that life wasn't going to change or improve anytime soon, I decided to just thrust myself back into "busy-mode." I did my best to pack it all in as furiously as possible - work, personal life, social engagements - I thought the harder and faster I pushed, the more likely I could "outrun" lupus. That the disease would eventually fall away because she couldn't keep up.

But we all know how that strategy works (or doesn't work!). So once I wised up, I found myself slowing down, ratcheting back, and walking instead of running. And you know what? It worked! Life with lupus wasn't quite as taxing when you weren't taxing yourself to the hilt. And I came to appreciate "slow and methodical" versus "fast and furious." Sometimes you don't get quite as much accomplished as you'd like, and other times, you simply don't get anything accomplished at all. But in the grand scheme of things, that long list of to-do's can wait. Your health, wellness, and long term happiness cannot.

Of course, Deirdre still tries to convince me that she can wait "just one more minute" before we head to the potty. But she and I both know better. The blocks can wait. The tinkle cannot.

A dose of my own (defensive) medicine

2011-07-22T08:00:00.008-04:00

I stopped at my dry cleaner the other day to pick up some cleaning and to drop off a bright fuchsia silk shirt. It has about a dozen ruffles up the front, which is enough for me to pay the extra for dry cleaning, but the fact that the tag says, "professionally dry clean only" makes it a bit of a necessity.

That said, I'm always looking to save a couple bucks, so I decided to ask what would happen if I washed my little pink number in water. I have a ton of stuff from this same store which says, "Hand wash or dry clean", so I thought I'd just check and see if I could sneak this shirt into the same category. (Also - if you recall, I replaced my washer last year with a snazzy new guy, which is my new best friend...it has a "Soak" cycle and a "Hand Wash" cycle for this very reason...so I didn't want to miss an opportunity to use it!)

So I uttered my off-the-cuff, seemingly non-offensive question to the owner of the shop who was helping me, and boy, did I get a response! She raised her voice a few notches, clearly annoyed and somehow offended, and said gruffly, "You want to wash this? Okay - you wash this, the color will bleed. You will have an ugly, light pink shirt that you'll want to throw away. So you choose - either dry clean or throw it away."

Wow. Not the "Oh, I wouldn't try to wash silk. It will practically ruin your shirt" response I was expecting.

Clearly, I put her on the defensive, even though I had no intention of doing so. Maybe I was the 15th customer that day to ask if a garment could be washed instead of dry cleaned, maybe she was sick and tired of people trying to get out of using her services, or maybe she was just having a crummy day. Any way you look at it, I hit a nerve. I didn't mean to, but I did.

And that's what people used to do to me all the time.

I realize now, when people would tell me to slow down or take it easy, they weren't trying to be patronizing - they were just trying to help.

And when people would offer their help - they weren't trying to insert themselves where they didn't belong - they were just trying ease my burden.

And when people would simply ask how I was feeling - they weren't trying to be nosey. They were merely trying to express their concern.

It wasn't out of pity that they asked, it was because they cared.

I hope I can remember that as I continue on my way to living well, accepting help, encouragement, and advice along the way. I just hope my dry cleaner knows how much I appreciated her advice. I should mention it to her the next time I'm in, don't you think?

The lupus nap: a welcomed respite

2011-07-20T08:00:00.018-04:00

When I crawled into bed to take my mid-afternoon nap yesterday, I thought I'd make a quick mental list of the items on my to-do list. Here's what I came up with:

Email seminar venue in Cambridge
Email girlfriend who's been under the weather
Contact dogsitter
Schedule dermatology appointment
Look up fabric and zippers for new sewing project
Wash Darwin (cling peaches and syrupy pancakes are decidedly not good for a pug's coat)
Pick up weeded weeds from back stoop (3 days old...)
Pick up prescriptions at drugstore
Pick up library book that's on hold
Order new pictures of Dee and Bee
Email family about August get-together
Do a post
Review presentation for Cambridge seminar
Pick up Dee's dress from tailor
Return call from friend before he leaves on month-long vacation
Check online for typical 9-month bottle schedule (looking for suggestions on going from 5 bottles to 3!)
Check online for recommendations for traveling abroad with 2 1/2 year old. (Car seat on plane or not?)
Email friend to thank her for recent friend introduction
Put away laundry
Make dinner
Finish flyer for NYC book event in September

Wow. Guess I had a lot on my mind, huh? The beauty of this whole process was that as I mentally added those last few items to the list, I thought to myself, "Thank goodness I have a nap to take right now." I mean - how crazy would I make myself trying to get all of the above accomplished over the course of an afternoon? And there's no stopping it - I would have been like the Tasmanian devil, rushing from here to there - probably washing Dar with one hand while trying to do a Google search with the other. Seriously - there would have been way too much multi-tasking going on, and the whirlwind of activity probably would have left some scars.

But none of that happened, because I took a nap instead. A long, relaxing, well-deserved, welcomed nap.

Aren't I a lucky dog?

Lupus, Plaquenil, and my eyes: the whole sordid story

2011-07-18T08:00:00.004-04:00

We all know that with plaquenil comes annual (if not semi-annual) visits to the opthamologist. It seems that the use of plaquenil can cause (although it is rare) temporary pigment changes to the macula of the retina. It's my understanding (and my direct experience) that these changes are temporary...and that with discontinued use of the medication, the changes are reversible. I can't speak to the exact percentage of people on plaquenil whose eyes are affected, but despite the fact that it is very, very low...I'm one of the people that make up that percentage.

I started plaquenil shortly after I was diagnosed, and took it for about 4 years. I was on 400mg for the majority of the time, but was on a dosage of 600mg for a period of time. In fact, I was on that higher dosage when I was taken off of it due to the pigment changes that my opthamologist noted in my annual checkup. (In fact, when my rheumatologist increased my dosage to 600mg/day, my opthamologist increased my checkups to every six months. I might have even gone every three months for a spell!)

That said, my eyes return to normal, or so says my opthamologist (I couldn't tell any difference) after I discontinued the drug, and I stayed off of the drug for about 3 years, using Cellcept in its place. With both of my doctors' blessings, I opted to go back on plaquenil in order to get pregnant in 2007 - and have been on it ever since, with no problems at all.

So as of today, my eyes are hanging in there with plaquenil. But I don't want to get too far ahead of myself, because my opthamologist has just ordered two new tests, both of which are new to me.

The first, which I had last week, is called an OCT test, or an optical coherence tomography test. It actually scans the retina and allows my opthamologist to view both the retina and the macula (the small, sensitive area of the retina that gives central vision) in 3D to determine changes or alterations in the eye. Seems like it's all the rage in regard to eye exams these days...so glad my eyes and I could be so en vogue.

I was hopeful that this newfangled test (super common in testing for age-related macular degeneration, or AMD, but new to me) would be enough for this round of eye exams, but alas, it's not going to be that easy. (Never is when it comes to my eyes and lupus!) Turns out the eye assistant who ran the OCT test wasn't able to get a very crisp, clear picture of my eyes - my left eye in particular. Not sure why not - it's a question I have in to the doctor, but in any case, my doctor wants to step it up to another eye exam, called an ERG, or an electroretinography. I'll let you read about it here - it looks a little awkward to me, but as the literature says, I'll kick things off by "assuming a comfortable position."

Hmmm. I'll have to keep you posted on that one.

As always, feel free to chime in on this one. Always looking to hear from others who've been down this same road!

Got an iPad? Got lupus, too? You're in luck!

2011-07-15T08:00:00.040-04:00

Good news on the Apple front - Despite Lupus is now available on the iPad!

Thanks to the keen (or is that geeky?) efforts of my brother-in-law, and the helpful resources provided by my au pair (aka her macbook), Despite Lupus: How to Live Well with a Chronic Illness has now been uploaded, approved, and is ready for purchase on the shelves of Apple's iBooks. It's available in 6 stores - including the United States, Canada, the UK, Australia, Germany, and France.

Not being a Mac gal myself, I'm not sure how to direct you to order your copy of the ebook, other than providing the links above. But I'm sure you Mac users and your little apps can figure it out.

Thanks for your patience while I sorted out my ebook availability - Kindle, Nook, and the iPad (which also allows for books on the iPhone, I believe.)

Have I forgotten anyone?

Motherly indulgence

2011-07-15T07:59:00.029-04:00

I couldn't resist posting these pictures today.

Kinda cute, huh?

Have a great weekend!

This phone call may be recorded...

2011-07-13T08:00:00.015-04:00

You know how you kind of "gear up" for a doctor's appointment? You take time the night before to get all of your questions down on paper, you think about your symptom activity on the drive to the doctor's office, and you mull over the highlights of the appointment-to-be while you're in the waiting room. You mentally prepare yourself to see your doc face to face - deciding on how you're going to effectively and efficiently touch on all 29 things you want to address in the 7 1/2 minutes you have with the doctor. You're armed and ready...at the top of your game. Now all you need is a physician to start the volley.

At least, that's how I usually approach my visits to the doctor. But just recently, I was caught off guard, because my conversations with the doctor extended beyond my appointments, due to extenuating circumstances. As I mentioned on Monday, my doctor decided to change his course of action following a recent appointment. I was thrilled to hear from him - as I wasn't completely satisfied with the plan of action after he and I had last spoken. It wasn't as though I was completed dissatisfied...I was just a little unclear of how we were going to get my kidney issue under control. I wanted to hit it hard...not jump the gun with medications or procedures necessarily...but I definitely didn't just want to sit back and wait for a flare to take root.

So thankfully, my doctor felt that action was needed, too...because he called to explain that he wanted to start a new medication, a hypertension medication called Cozaar.

Now - let me set the scene - because I'm sure you've been there:

I was in the car when the phone rang. Deirdre was in the back, chatting away, and I was in the middle of making a U-turn in my sister's neighborhood. I was trying to track down my niece who had been dropped off at an unspecified neighbor's house, and Deirdre and I were literally scanning the driveways for any car or person that we might recognize. Just as I pulled out my phone to see who it was, my sister's car pulls into the neighborhood, and she's trying to flag me down to explain that she was going to pick up my niece and that I should just wait at her house. To say that I was in the middle of something is a bit of an understatement.

So was I a little unprepared to take his call? Uh...yeah. Not only was I thrown off when he mentioned a blood pressure medication that we'd never talked about, I was taken aback that he'd decided to change his course of action. You know how it is - so many things swirl through your head in those 2 minutes when the doctor is talking. Is he taking action because things are really desperate? Does he remember that I've always had really low blood pressure? Is he doing this because he sensed that I wanted action, and so he's prescribing something that I don't really need to take?

I mean really...do I always have to make things so difficult?

That said, I managed to park the car on the side of the road, pull myself together, and ask a few very pertinent questions, if I may say so myself:

1) What if any are the side effects from a drug like this?
2) What should I expect to see happen between now and my next appointment?
3) Is Cellcept (a drug that he'd mentioned previously and one that I know and love) off the table? If so, why?
4) Is this drug treating the symptom of the extra protein, or are we addressing the issue of my malfunctioning kidneys?
5) Do you still think we should wait for a biopsy?
6) Will my already low-blood pressure be affected?
7) Is this drug typically prescribed to lupus patients?

Not too bad, off the cuff, right? Trouble is...it took me about two days to reconstruct the conversation so that I could come up with the answers. I couldn't for the life of me remember exactly how he'd answered my questions. To date - I still can't tell you how he answered #4. I know he said something like, "Well, that's a good question." But then I can't remember what else he said. I do know this - he said enough that I was willing to hang up the phone and start taking the drug. If I REALLY hadn't gotten the answers I wanted - I wouldn't have gotten off. But I did...so now, I had some work to do.

If only the conversation had been recorded! If only I could have had the doctor on speaker phone and Deirdre could have taken notes for me. It was all just too much information without enough warning.

So here's what I did: I hung up the phone, thought about the conversation for about an additional 30 seconds, and then resumed the task at hand which involved my niece, my sister, and one very eager 2-year old in my back seat who couldn't understand why her aunt and cousin were running from here to there while she had to stay cooped up in the back of the car without making a peep while Mommy was on "a very important phone call." Seriously.

But this is the great thing about lupus tenure...I didn't panic. I didn't freak out. And I didn't immediately call my doctor back to say, "What the heck did we just talk about?" I just waited for a few hours, thought back to the conversation, and attempted (in a very calm and peaceful manner) to piece together the answers to my questions. In fact, I decided to wait until the prescription arrived in the mail before taking any action at all. Truth was, I didn't even know how to spell this new medication that he'd prescribed. (He hadn't been all that sure of the name on the phone himself!)

Once the prescription arrived in the mail, I took about 10 minutes to do a little research, discovering that these drugs are prescribed quite frequently for this exact purpose. Okay. Now we're getting somewhere.

Next, I mentioned the whole thing to my pulmonoglogist, who I saw just a few days later. He had his own opinions on the matter...much of which coincided with that of my rheumatologist, but he added his own objective insight. He recommended that I see a nephralogist before too long, and he also thought an ultrasound would be a little less invasive, but a good second step. Ah, yes...much better than a biopsy - and still more telling than just a 24 hour urinalysis. Good info, doc. Just keep it coming.

Lastly, I attended my monthly lupus support group meeting just a week after the conversation, and lo and behold, 4 of the members are on hypertension meds just like the one I was prescribed. They were able to clear up many of the outstanding questions I had...and put my mind at ease about the ordeal...something that I don't think even my doctor could have done.

(One last thing - I also emailed a girlfriend to get her advice on the whole thing, figuring that she'd been down the whole lupus kidney biopsy path herself. She shared her experiences and I instantly felt empowered. I was no longer in the dark, alone, or crazy. It was fabulous!)

So there you have it - proof that support groups (and others with lupus tenure) help, consulting and networking your doctors is invaluable, and taking the time to do your own homework on your health is worthwhile. Never knew managing a chronic illness was a full-time job, did you?

Lupus Kidney function - part II

2011-07-11T08:00:00.067-04:00

On one of the last episodes of Despite Lupus, I wrote about my recent trials with my kidneys and the fact that I showed three times the amount of protein than I should have in a 24-urinalysis test a few months back. I've been awaiting the results of my most recent test to see if the protein is still showing up - and good news is that the amount of protein is down. Still abnormal (about twice as much), but at least better. My doctor discussed the results at my last appointment, and we agreed to repeat the test in a couple of months. He said the current level of protein is definitely something to watch, but not as alarming as it was a few months back. Kidney function is normal and all other tests look good (and I feel great!), so we're not going to panic.

At least we're going to try not to panic.

After walking out of the doctor's office, I sat in my car and just contemplated the situation. Was I satisfied with the plan of action? Did I think we should be treating this a little more aggressively? Was a repeat test in a few months enough?

Truth was - the answer to all of those questions in my mind was no. I didn't like the fact that we knew my kidneys weren't working the way they should, but we weren't proactively doing anything about it. I didn't care for the idea of waiting another 2-3 months before retesting, and I really didn't like the fact that at the last appointment, my doctor had thrown out ideas like cellcept, cytoxin, and a kidney biopsy, and now we weren't even considering any of them. Was I making a big mistake by letting this slide by, while my kidneys were running amuck?

I decided to give it a couple days - I'd sleep on it, consult a few of my friends who've been down this road before, and if I still felt unsure about waiting until the next appointment, I'd call the doctor and discuss.

But he beat me to it. Within a few days, he called to say that on second thought, he'd like to take action. He suggested that I start a drug called Cozaar, a blood pressure medication often used with diabetic patients who have kidney damage. He's hopeful that it will reduce the protein in my urine, and, from what I've read online, it seems to be a pretty standard prescription to help with kidney issues.

Now - did the thought of adding a brand new medication to my regimen throw me for a temporary loop? Yup. But I'm so glad my doctor called. I'm relieved that we're not just going to sit back and wait - wait for real damage to happen, wait for my disease to flare, wait for my symptoms to be so bad that serious measures have to be taken. I learned the hard way that letting symptoms go unaddressed is not the way to handle lupus - ignoring symptoms because dealing with them would slow me down, or acting as though I'm invincible in the face of this disease. No - I've found the exact opposite to be true. The sooner you embrace the disease, and recognize the changes that need to be made to accommodate it - like getting necessary rest, taking meds, keeping your stress in check, listening to your body, and making good healthy choices, even when you don't want to - the sooner you can turn a corner with your chronic illness.

That said - in an upcoming post, I'll tell you the nitty gritty of what happened during that phone conversation with my doctor. Was I the confident, well-spoken lupus patient I encourage you all to be? Well...kind of! Stay tuned for more!

Despite Lupus in the UK: Workshop and Book signing in Cambridge on August 4th!

2011-07-08T08:00:00.012-04:00

Mark your calendars - it's an event!

Despite Lupus will be hosting a Living Well with Lupus workshop in the lovely town of Cambridge, England on August 4th, 2011. Thanks to the coordinating efforts of the Lupus UK contact in Cambridge, who has been oh-so-helpful, the details have been finalized and the event is booked. (Click on the poster at the right for specs!)

Not only will I be speaking, but I'll be joined by the talented Shaista Tayabali, local Cambridge poet, blogger, and lupus warrior. I've had the pleasure of collaborating with her on a publication in the past, and am honored that she'll be joining me for the workshop. Her poetry and prose can be found at Lupus in Flight and her readings of poetry and discussion of life with lupus can be heard from time to time on BBC Radio Cambridgeshire.

Want details? Have questions? Need to RSVP? Shoot me an email at sara@despitelupus.com. I'd love to add you to the list of attendees!

Saturday's workshop - what a success!

2011-06-27T08:00:00.033-04:00

It's not often that I do a recap of an event in which I participate - but Richmond on Saturday was such a treat - so enlightening, mostly because I did so little of the talking!

To kick things off, Dr. Lenore Buckley gave a phenomenal overview of the current therapies and treatments we have for lupus, including Benlysta, and how it's typically determined which lupus patient gets what treatment. She elaborated on how each of these therapies works to curtail the disease activity (stuff I've never heard before, which was refreshing), and wrapped up by talking about future options for lupus, explaining exactly how these new drugs will fit into our current therapies. From start to finish, it was a great talk. AND she left time for questions - which is always nice.

I then joined a small panel of lupus patients, each of us taking 5 minutes to tell the story of how and why we learned to talk so freely about our illnesses. Personally, I can tell you that it took a long time for me to craft my story - it didn't just happen overnight. It was very overwhelming in the beginning - trying to find the words to explain what lupus was to people who'd never heard of it before, learning to describe how the disease affected me without breaking into tears, and what the emotional and physical toll really looked like, not just the surface stuff you read in textbooks or online. Back then, I struggled to put into words what it felt like - partially because I was resentful that I had to be the one to educate, create awareness, AND shoulder the burden of the pain and suffering. But very quickly, I realized if not me, then who? Who else is better equipped to tell the real lupus story - who else but lupus patients like us can explain what it's like to be in constant pain, so much so that brushing your teeth or dialing a cell phone is often too taxing to undertake? Who else can illustrate what extreme fatigue is like - that taking a shower used to require a 30 minute nap afterward, or that you head down to breakfast, but by the time you put cereal in a bowl and pour the milk, you're too tired to eat. And who better than us to talk about the identity crisis, the shock of taking dozens of medications, and the realignment of priorities (and the appearance of limitations) so early in life?

That said, the BEST part of the event was the breakout groups. Everyone at the event got a chance to tell their lupus story - to tell their story to people who get it - to people who understand - to people who can empathize. There were head nods, and tears, not to mention a few "Amen, sisters". It was great - and I was truly honored to be part of such an event.

So how have I learned to tell my lupus story? I try to focus on three things -

1) I make it relative, so that people understand what I'm talking about relative to their own life experiences (like the shower or cereal example above). In fact, with my doctor, I learned that saying, "I was in so much pain, I couldn't get out of bed" is lost on him, but the specific example of not being able to dial my cell phone, or make the "Ok" sign with my fingers hits home. He can quantify that pain - and thus, I get a response like, "I get it - you're in an unnatural degree of pain, and you're not happy about it. Now let's do something about it". Yes, doctor. exactly.

2) I demonstrate how it (my story) affects them (my audience) - like at the grocery store, with the gentleman bagging my groceries. I didn't look sick, I didn't act sick, so asking for help with my groceries seemed out of context. But taking 1 minute during the walk out to the car to explain why I needed help demonstrated exactly how my situation affected him, and how he played a role in my personal well-being, as well as other customers who might ask after me.

And 3), I show friends and family how best to insert themselves into my life with lupus, so that their help, concern and attention is productive, not destructive. People want to help, but if you don't show them how to do so exactly, they'll intervene where you least want them to, and whether or not you like it. You need the help - just learn to route it to the right places.

LFA event: This Saturday, June 25th in Richmond, VA

2011-06-23T17:15:00.001-04:00

Got plans for Saturday morning? If you're living in the Richmond area, feel free to swing by the LFA-DMV's next lupus workshop, free of charge but chock full of valuable lupus information! And look for me on the patient panel - I'll look forward to your questions!
Details are below. To register for the event, click here:

Finding Your Voice: Telling your Lupus Story
Date: Saturday, June 25, 2011, 9:15am - 1pm
Where: Bon Secours St. Francis Medical Center- Cancer Center
14051 St. Francis Blvd.
Midlothian, VA 23114

A workshop designed for lupus patients in Central Virginia to receive current lupus information and training to feel empowered to tell their lupus story. Includes a Q&A with LFA-DC/MD/VA Chapter Staff, as well as other prominent figures knowledgeable in the field of lupus.

9:15 a.m. Registration

9:30 a.m. Lupus Update- An update on what is new in lupus, treatments, and promising research.
Presenter: Lenore Buckley, M.D.
Professor of Internal Medicine & Pediatrics
Virginia Commonwealth University,
School of Medicine

10:30 p.m. Finding your voice- How to tell your lupus story
Every case of lupus is different and every patient has a story to tell. Our panel will discuss ways to empower participants with the knowledge they need to confidently convey their journey through lupus.

Presenters: Jean Marie Leonard, a Dale Carnegie trainer from Northern Virginia; Sara Gorman, Author of Despite Lupus; Michele Shuman, lupus advocate and Richmond volunteer coordinator; Tracee Logan, lupus advocate.

12:00 noon Chapter Update- The LFA- DC/MD/VA Chapter Staff will conduct an interactive panel discussion that addresses how we can help you get the most out of our chapter services, and ways our chapter can help navigate you through your lupus diagnosis and treatment.

1:00 p.m. Adjournment/Evaluations

*Please note that the cancer center is on the same campus as Bon Secours St. Francis but is located in a different building. Our sessions will be in rooms 1&2 of the cancer center.

Fighting inflammation - tips from Health Monitor.com

2011-06-20T08:00:00.014-04:00

I found this article in one of the most recent newsletters from HealthMonitor.com and thought I'd share. Don't know about you, but staving off inflammation is always an issue for me. It can crop up at anytime...so I'm always on the hunt for ways to help. Hope you find these tips useful!

***
Chronic inflammation may contribute to many illnesses, including arthritis, diabetes, heart disease, Alzheimer's disease and some forms of cancer. Fortunately, you can fight back.

Reviewed by Health Monitor Medical Advisory Board

1. Lose weight
According to the National Institutes of Health (NIH), if you're overweight or obese, losing 5%-10% of your weight may decrease inflammation throughout your body.

2. Fight back with food
The good news is that there are many foods that actually fight the inflammation process, including:

•Green tea
•Nuts
•Deep-sea fish, including mackerel, herring, sardines, albacore tuna and salmon
•Ginger
•Curcumin, the active ingredient in the spice turmeric
•Nigella, a spice used in Indian food, has been shown to have anti-inflammatory properties and may fight cancer
Several studies also have found that resveratrol, a substance that's abundant in red wine, grapes and peanuts, appears to be a potent anti-inflammatory.

Note from Despite Lupus - I actually suspect that the opposite is true for me. The last few times I had a glass of wine, I experienced a case of angioedema shortly thereafter. Might or might not be related...but since I noticed the pattern several years back, I haven't touched red or white wine. And no swellings since. Interesting, huh?

3. Bring down your blood sugar
While the above foods are anti-inflammatory, other foods should be avoided. Those that increase inflammation include:

•Simple starches, particularly those made with white flour, potatoes and rice
•Sugar
These foods can increase levels of blood glucose and C-reactive protein (CRP), a key inflammatory marker. High CRP indicates that inflammation is present in the same way that a fever indicates you have a virus or flu.

4. Get more shut-eye
Those who get less than seven or eight hours of sleep per night are prone to chronic inflammation. If you're having trouble getting that much sleep, doctors suggest that you:

•Establish a consistent bedtime
•Avoid caffeine for eight hours before bed
•Don't bring work into the bedroom
•See you physician if you still have problems falling asleep or staying asleep.

5. Walk it off
Exercise can be one of your best weapons against chronic inflammation. You can reduce inflammation levels by simply walking 10 minutes per day. Benefits include improved heart health and reduced obesity.

"Studies show that people who are active have healthier joints for a longer time," says Tim Church, MD, PhD, who's done many such studies. "Physical activity is anti-inflammatory."

6. Hit the drugstore
Aspirin fights chronic inflammation. It also can reduce the risk of some cancers and heart disease. But be careful—doctors recommend limiting aspirin to a child-sized dose, as it can cause stomach bleeding.

If aspirin isn't right for you, ask your doctor whether you should consider anti-inflammatory supplements, including:

•Ginseng
•Quercetin
•Ginkgo biloba

Talk to your doctor before taking any over-the-counter products,including aspirin supplements, because of possible interaction with prescription medications. Also, discuss the option of using a prescription anti-inflammatory if you have a chronic condition.

Havoc inside, party outside? Don't kid yourself, lupites!

2011-06-15T08:00:00.015-04:00

With the summer solstice just around the corner, it's clear that summer has almost arrived. And with the season of sunshine comes the planting of my second-story window boxes, which always seems to become an ordeal. One window box gets full sun, the other, full shade. What's a symmetrically-inclined novice gardener like me to do?

I usually go with some sort of impatiens/vinca/begonia combination...but this year, I'm going with all impatiens. I know - my full sun box is going to hate life, but I'm determined to keep it watered and looking full and lush. Fingers (and thumbs, which aren't very green) crossed!

That said, watering those boxes is always a chore. Neither box is in a very convenient location - they're the two farthest rooms from the water source, in opposite directions, and both have a shade, a screen, and window pane that I have to get through in order to water. One of the boxes, in fact, is outside Bernadette's room, so I have to plan my watering around her sleeping schedule. (Might not sound difficult...but I can assure you, it causes me much frustration!) To top it off, my mini-watering can that I keep upstairs is too small (and awkward) for the job - so each box requires two trips to the water source, and a little trail of water is left after each trip because the can isn't very well-designed. I'm telling you - I don't know why I stick with it. It's like torture year after year after year. Nonetheless, I do it, but I'm always looking for a shortcut - anything to make watering those boxes easier than the year before.

Last summer, I decided to try a shortcut, opting to use the hose from the outside to shoot water up to the second story, where ideally it would bounce off the window and drain into the window box. I'd been eyeing up my idea for weeks, dreaming about the ease and convenience of turning on the water and letting the hose do the work. But I have to admit, something told me it was a bad idea. It was like I knew there would be consequences to my attempt to cut corners, but I just couldn't help myself.

So I tried it. From down below, my shortcut seemed ideal - the flowers were getting wet, and the window appeared to be the perfect backstop. But as I watched all of the excess water drip down the side of the house, the delicate little flowers being doused with a jet stream of water, and heard the sound of water beating against the glass window, I just knew something was amiss.

And right I was. After I finished hosing down my boxes (it just sounds wrong, doesn't it?), I went inside to get something from the kitchen, and I heard the sound of running water. Or should I say rushing, gushing water from somewhere in the house. I went around the corner, and there, in the dining room, was a steady stream of water falling from the chandelier, onto the dining room table and off onto the chairs, the floor, and the rug in the adjoining room. There was a full blown waterfall, right their in my dining room. My mouth agape, I ran upstairs to where the window box was, only to see the entire corner where the window was soaked with water. My oh-so-convenient jet stream of water had seeped through the window, down the wall, into the corner and down through the ceiling to my dining room below. I was flabbergasted that my perfect little short cut could have gone so awry. That while everything seemed fairly controlled on the outside, the water was wreaking havoc on the inside.

And so goes my comparison to lupus. In my 10 and 1/2 years with the disease, I've made dozens of attempts to cut corners - trying every which way to trick the disease into behaving, rather than putting in the hard work I know is required to get better and live well. I know there will be consequences to my scheming actions, and I know that a strategy that requires little to no effort usually yields little to no result, but I try, nonetheless. And it never, ever works. And yes, on the outside, my body may look fine, but inside, the disease is, no doubt, wreaking havoc. And that misconception - that deliberate attempt to ignore the signals our body is sending us (much like the pounding water against the window) - is where we go wrong.

I'll admit - sometimes, the signs aren't as obvious. Sometimes it's just a hunch...like the blast of water that just doesn't seem right for those sweet little flowers...but it's that hunch that can make or break our lives with lupus. Maybe this summer - we can commit to doing things the right way, albeit the long and tedious way:

Wearing sunscreen everyday, whether you want to spend the extra few minutes lathering up or not.
Getting enough rest at night, even if those late summer evenings are calling your name.
Keeping those doctor's appointments, even when your summer vacation schedule doesn't allow for it.

Or maybe it's wearing a hat, taking your meds, or eating well. Whatever it is, here's to putting in the effort to living well. It's bound to be worth it!

Are preconceived notions holding you back?

2011-06-13T08:00:00.041-04:00

In my humble opinion (which isn't so humble, is it?), Sunday is a day of rest. It always has been. I remember growing up, the most strenuous thing we did on a Sunday was to decide which donut to get at the grocery store after church. Maybe we'd head out on our little boat for a leisurely afternoon on the lake, or run around in the sprinklers in my side yard, but usually, the only thing on the agenda was curling up with a good book or catching an episode of Murder, She Wrote on Sunday evening.

Of course, those were the days before kids played organized sports on Sunday. There was no way I would have had a softball game or cheerleading practice on a Sunday. It just wouldn't have happened.
But today, I understand it's a rare occasion when there's not a baseball game or a soccer match on Sunday. What a bum deal!

Truth is, before I even had kids, I used to tsk tsk tsk the concept of letting kids participate in sports on a Sunday. I always told myself that I'd never let that happen - I assumed I'd find a league where Sunday games weren't played, I'd have my kids skip out on that day's game, or I'd start some petition to overhaul the schedule. And this was all before I even had Deirdre! I had my mind made up, and that was that. Of course, I hadn't really thought through the somewhat unreasonable work arounds I'd come up with...I'd simply formed my opinion, and that was the end of it.

Until recently.

I was talking with an old friend from high school whose daughter now plays soccer, and she mentioned that she had an upcoming game on a Sunday. I mentioned my game-free Sunday stance, and she agreed that she wished it wasn't so. But she was able to shed a little light on the subject...a subject that frankly, I didn't know anything about. (With a 2 1/2 year old and an 8-month old, who am I to pass judgement, right?)

My friend mentioned two things I'd never really considered, primarily because I'd never thought the whole business through. I'd just formed an opinion and went on about sharing that opinion with anyone and everyone. So here's what she said:

One - playing games on Sunday makes the season shorter. Sure, she didn't like the Sunday game concept either, but she said that it shortened the season so much that she and her family were able to take vacations when they really wanted to, and more often than if they were beholden to a longer soccer season. (I knew the season would be shorter with the extra day of play, but I hadn't thought through the opposite effect of having to stick around while the games played out, Saturday after Saturday after Saturday.)

Two - my friend said that the games were more like play dates than anything else. She said the kids run around, have a great time, and the whole thing's over and done with in 40 minutes. Now, I'm sure this will change as the kids get older...but she put a whole new spin on the concept of the Sunday game...one that opened my eyes to the fact that maybe it's not all that bad. At least not bad enough to prevent the girls from playing a sport that competes on a Sunday.

So how does this relate to lupus? I found myself forming the same judgmental, ignorant opinion about reducing my work schedule years ago. There I was, working 10 hour days, plus weekends, convincing myself that the only way to feel important was to keep working like a madwoman. I knew (like all opinionated, know-it-all twenty-somethings do) that there was no way I could be fulfilled working part time - even if that's what my body (and my disease) needed me to do. I had decided, without knowing anything about my options for a reduced-work schedule or talking to anyone with lupus who'd embarked upon a change in their career due to their illness, that asking for accommodations at work (be it my daily schedule or the total hours I worked) wasn't for me. I wouldn't like working less, I told myself. I'd miss the responsibility, the hustle and bustle of the office, and I'd hate myself for giving less than 100%.

But oh, how wrong I was. I can't really tell you exactly what it was that made me realize, "Hey, working less to save yourself isn't such a bad deal", but I can tell you this: it was the best decision I've ever made regarding my health and wellness.

And note that I'm not talking about letting go of my career completely. That decision was made way down the line. I'm simply talking about that preconceived notion I had that reducing my work schedule (or asking for any accommodation at work) would make me feel worthless and unfulfilled. The biggest obstacle I had was breaking through my own misconceptions.

So the question is - do your uninformed opinions keep you from living well, too?

Hi ho, hi ho, my hair is starting to grow...

2011-06-08T08:00:00.001-04:00

Finally, I can say with confidence that my hairloss due to pregnancy (or lupus, or both) has subsided. I'm no longer losing strands by the dozens, nor is my bathroom floor covered with hair after I blow dry it. And yes, the 2" spikes are in full force (although the spiky hairs on the top of my head have actually grown out and are blending in.) Now, it's the 2" sideburns that are holding me back. At this point, I'm at the stage where my hair looks better down than up...imagine that! Here, I've been putting it up for months, trying to mask the loss...and now that it's growing back in, it's better that I keep it down. Blend in, little hairs, blend in!

Of course, now that I have my hair squared away, it's on to the next blip on the lupus radar. It seems that my protein levels are quite high, indicating that my kidneys aren't performing up to snuff. My doctor noticed it a couple of months back...and ordered a 24 hour urine test. The results weren't good - showing about three times the amount of protein as normal. Talks of Cellcept, cytoxin, and a kidney biopsy were discussed, but only if the results of a repeat test showed the same.

Moderate to good news was that the repeat test showed normal protein levels for a lupus patient (which I will gladly accept)...but the volume wasn't what it should be. (Guess I wasn't throwing 'em back that day.) So on to test #3. The collection has been made, the specimen has been submitted...now, we wait.

The positives in my favor are that I'm feeling great and I'm not overdoing it - indications that point in the right direction. But...we'll just have to see what's in store. I can tell you though - my mind was racing the moment my rheumatologist mentioned the possible treatments/exams that I listed above. I mean, wow. I wasn't expecting any of that. And while I sat stunned for about 2 minutes while he talked and explained, I realized the good news is this: years ago, I would have spent way too much time and energy deliberating over those options. I would hashed and rehashed the choice of medication, the timing and necessity of the procedure, and the impact of both on my life's plan. I would have been desperate to make sure that whatever I chose didn't upset my plans for the future. Pregnancy, travel, lifestyle...it would have all come into play and weighed heavily on my decision.

But today - oh, today - it's simple. I do what I need to do to stay healthy. And if that means I rewrite my plans...those arbitrary, self-imposed benchmarks that I've learned don't mean as much as I think they do...then I rewrite them.

Don't get me wrong - Does going on cellcept mean I'd have to wait a year or more to have a 3rd baby, if I wanted to? You bet. Could it postpone that plan forever? Yup. Does extra protein in my urine upset my plans for flare-free living? Without a doubt.

But the great thing, is that I have options. And today, I'm living well enough to know when to take advantage of those options, and when to let life with lupus take its course. The more I try to steer, the harder it is to take the wheel.

Of course, all that said, the sample could always come back free and clear. I'll keep you posted!

The concept of completion. In my dreams...

2011-06-06T08:00:00.004-04:00

I need to let something go...and that's the concept of completion.

Who am I kidding? I have two young kiddos, a chronic illness, and a daily nap to contend with every day; everything, and I mean everything, has to be done in stages.

Doing laundry, responding to emails, making dinner, getting dressed, writing blogs, making a phone call, going to the bathroom - you name it, it gets done incrementally. (I'd say that last item usually gets completed...but I do usually end up washing my hands in a sink other than the bathroom, typically because I'm on the move. Or should I say, the girls are on the move!)

But I need to realize that a) stages are okay, b) the job still gets done, and c) I should embrace the 2 minutes and 40 seconds I have to start one or any of the above tasks, realizing that it may take a total of 60 minutes to complete what should be a 15 minute project, but that getting a start on it is half that battle.

What's my default modus operandi? Waiting until I can carve out the total 15 or 20 minutes so that I can do a project start to finish. But that's SO hard to do...and doesn't really set me up to succeed. Why not at least get the laundry started...even if I have to leave it until after my nap is finished? Or make the phone call, but let the person on the other end know that my window of time is small...and may be cut short altogether?

When I think about embarking upon a task that I might not be able to finish immediately, I break out in hives. Well - I used to break out in hives. Now, I realize that the "shoulds" in life are very few and far between...and that nothing is so pressing that it should cause me to stress out or skip a nap. And spending a few extra minutes with those girls is much more important than any item on a to-do list.

Don't you think?

Lupus in the UK - "Despite Lupus" heading across the pond

2011-06-03T08:00:00.002-04:00

As mentioned on Wednesday, my family and I are heading over to the UK to celebrate a family wedding this summer. Wondering if any of you London lupites will be around. Would you be interested in participating in a lupus workshop of sorts?

Some fellow writers of mine (one in Bath, one in Cambridge, both of whom are in the medical/chronic illness world) are willing and eager to work together to put something on. We were thinking of taking things in a few different directions: perhaps a Pain Management seminar...or maybe a Living with Lupus workshop. Maybe even a Lupus in Literature event...my friend could read her poetry about living with illness, I could read and discuss an excerpt from my book, while others could come and read their musings on life with lupus.

What do you think? Any takers? We were leaning toward holding the event in Cambridge...but is London a better bet? Feel free to email me at sara@despitelupus.com. I'll look forward to hearing from you. (Note that I've been talking with the Lupus UK organization - but would love to hear from the people who would actually participate.)

Let me know and see you this summer!

The lupus nap: early and often

2011-06-01T08:00:00.004-04:00

What a busy month! I didn't even have a chance to plug Lupus Awareness Month (which was the month of May, by the way). My travels took me away from the homestead (and my computer) for several weeks out of the month, so I wasn't able to blog as much as I'd hoped. However, I'm back now, and we don't have much significant travel planned for a month or so. Ideally, my posts will be back in action.

But don't think I haven't been thinking of you - I may have been doing the whole planes, trains and automobiles thing, but I was actually just gathering fodder for the blog. I'm all stocked up on how to travel with lupus, how to deal with the sun and lupus, and how to potty train with lupus (yes, we've officially started.) I'm full of editorials...so be sure to check back early and often.

Speaking of...I had the opportunity to put my Travel 101 tips to use recently, which includes (if not centers around) the theory of napping early and often. Try that, and these others on for size:

1) When making my travel arrangements, I opted to fly during the girls' naps, not mine. I had the choice of flying in the middle of Bernie's morning nap, flying during the end of Deirdre's nap, or flying during my nap. I decided to choose the first option, which basically meant Bernie drew the shortest straw. But she adjusted great, and fell asleep on both our outbound and return flights. Coming back was definitely better than going...I think both mom and baby figured out the whole flight/bottle/air pressure/entertainment/sleep thing at the same time. She's officially a good flyer...which makes our flight plans to London this summer look all the more enticing.

2) I banked on the fact that I would be exhausted the day after I arrived on vacation, so I asked my dad to schedule our plans accordingly. The original plan was to hop in the car and drive 2 hours to go visit family the day after we arrived, but I just knew it would have been a little too much to handle. As it turned out, I made that day after a two-napper day (see #5), so traveling anywhere to do much of anything really would have crimped my style (and left me feeling crummy.) Three cheers for good decision-making and planning! (I also ended up skipping a rendezvous with a friend that I was attempting to fit in the actual day I arrived...what had I been thinking!)

3) I scheduled our plans so that the day before I left to come home, we didn't travel anywhere or do much of anything. Once again, I knew that I needed to rest up the day before we flew, so the midday plans I'd originally made for that day with my girlfriend and her family had to fall by the wayside. It worked out well in the end (see #4), but I had to make the difficult, upfront decision to just say no.

4) I took my family and friends up on their offer to come visit. It was phenomenal!

5) Lastly, but most importantly, I napped...early and often. That is, when I felt tired (particularly the day after I flew), I didn't wait for the clock to determine when I needed a nap. I just stopped what I was doing, told Paola or my mom or dad that I needed to nap, and then did just that. I NEVER usually do that...I always wait until my pre-determined afternoon nap time, and then I just make it a really good one. But not this time. I didn't want to get behind, so I napped EARLY. On top of that, I didn't assume that the early nap should take the place of my normal nap. In fact, I didn't just nap once, but twice that day after flying, napping both EARLY and OFTEN. I kept up the practice for the week...resting when and if I needed to. I listened to what my body was telling me, rather than what my mind wanted to do. And it worked.

Of course, I'd had a bit of a symptom scare the week before I left, which I'll tell you about in an upcoming post, so I had my reasons for taking extra good care of myself. You know how that goes...all we need is a little disease activity to keep us on the straight and narrow!

Lupus fundraiser in NYC next week - oh, what a night!

2011-05-30T08:00:00.021-04:00

The S.L.E. Lupus Foundation (NYC) has quite the lupus bash coming up - if you're in the city, and feel like stepping out for the cause - check out the details for the big event here. It's S.L.E.'s Seventh Annual Night for the Fight party, complete with open bar and food as well as raffle and silent auction.

The when and where, direct from their website:

Wednesday, June 8th

6:30pm – 10pm
at the Sky Room
330 West 40th Street, 33rd Floor
New York, NY 10018

This year's event will take place under the stars, overlooking Times Square at Sky Room's rooftop lounge. We'll have a 3.5 hour sponsored open bar, delicious appetizers and deserts from specialty food vendors, music by DJ BestOut, a luxury item raffle, silent auction, and more.

As their tag line says, it's sure to be "the most fun you can have fighting lupus!" If you go, be sure to check out the silent auction...cross your fingers my book gets a few bids!

***
On a separate note, I've been traveling over the past week, but I'm back and staying put for awhile, so I should be back to blogging on Wednesday. Looking forward to telling you about my travels!

100% Weaned!

2011-05-20T08:00:00.027-04:00

I can shout it from the rooftops now - Miss Bernadette has officially been weaned, and my risks of any infections (or jinxing myself) from breastfeeding are over! Yippee!!

(Note - you've been forewarned - this post is about nursing. Stop reading now if necessary!)

I'm thrilled to say that I nursed Baby B for almost 7 months, without even as much as a hint of an infection. When Deirdre was little, I nursed for just over 6 months, and was on antibiotics a total of 6 times for mastitis. Yikes! Not sure why I had such trouble the first time. Nonetheless, I'm really glad I stuck with it two years ago...but now I realize how tough it is to be sick with a fever and infection for a week out of every month or so. It didn't seem ridiculously awful at the time (if it had been, I definitely would have thrown in the towel earlier than I did), but now I can see just how great the first 6 months of nursing can be. Yeah, Bernie!

When I think about the circumstances that contributed to my success, I wonder if the following might have had something to do with it. Keep in mind, of course, that these are my musings only...and they could have everything or nothing to do with it. As you know with a lupus body, you never can tell sometimes!

Possible contributors this time around:

1) I knew what I was doing - while I can't say that 2 kids makes one an expert, I can assure you that I definitely knew a whole lot more about nursing than I did when Deirdre was born. Plus, I wasn't as concerned about the whole "process" the second time around, either. On baby #2, you think, if it works, it works. If it doesn't, it doesn't - it's no biggie either way. I've got bigger fish to fry with two under two!

2) I rarely skipped a feeding - with Deirdre, I skipped an afternoon feeding almost everyday, opting to pump instead so that I could get a little extra rest while someone fed her a bottle. This time around, I decided to nurse almost full-time, realizing that pumping during that afternoon feeding actually took longer (and was often less productive) than if I just fed Bernadette myself, working in my nap in and around that feeding. Having full-time help definitely made this possible - because even if I was napping when Bernadette needed to eat, I knew I could wake up, feed her, and then hop right back in bed. Rest was essential, and I think I got even more this time around.

I also think that the fact that I had Deirdre running around made a difference, too. I mean, who has time to sit and pump when you've got a two-year old raring to go?

3) I wasn't worried about building up a milk supply - this time, I didn't do any extra pumping, which kept my production at the level of only providing for Bernie on a daily basis and not an ounce more.

4) I wasn't worried about "equal opportunities for all" - the advice from the lactation consultants this time around was this: empty one side, burp, and then offer the other. If she still wants to eat, great. If she doesn't, don't worry about it! So that's what I did. I didn't worry about switching half-way through every feeding, or watching the clock, or logging my minutes. When she ate, I fed her. When she stopped, I stopped. I still switched sides from one feeding to the next, and I made sure that she got as much out of each feeding as possible, but I think cutting out the stress of tracking my time, in addition to emptying completely before switching really helped.

5) I was healthier - no doubt about it, I felt better during Bernie's first 6 months of life than I did after Deirdre was born. Very little joint pain, very little disease activity overall, so I wasn't as prone to infection as I was the last time around. And as I said, the fact that I was battling a fever and horrific pain from infection 6 times over last time didn't help matters at all.

All that said, of course, there could be no real concrete explanation for the success I had this time around. As my doctor said - different baby - different bacteria. I'm certainly no stranger to medical mysteries, so who knows! I'm just happy that I made it!

A matter of perspective

2011-05-16T08:00:00.008-04:00

You know me and my to-do lists - if I'm not crossing off, highlighting, or adding an item, it must be nap time. I can't deny that my daily lists bring me much relief, allowing me to rid my busy little brain of all of the tasks (menial or not) that I need/want to accomplish, freeing up space so that I can think clearly. With all tasks recorded on paper, I no longer have to juggle them in my brain. In fact, I think once I jot something down on my list, it's temporarily removed from my memory, until, of course, I see it on my list and my memory is jogged.

Jotting down my little "to-do"s transpires all throughout the day, but it seems that my greatest brain dump comes at the close of each day. I get into bed, tell Johnny goodnight, turn off the light, close my eyes, and within about 10 seconds, at least three things come into my mind that I have to remember to do the following day. So on my light goes, out comes my pen and paper, and down go the items on my list. Sometimes, in the case of a to-do list epiphany that transpires in the middle of the night, I forgo the light, and just jot down that which is preventing me from falling back to sleep. But in the event that I can't, ahem, read what I've scribbled down in the wee hours of the night, or can't decipher my short hand - I'm at a loss.

Such was the case with a recent item on my to-do list. Here's what I'd scribbled down on the pad at my bedside, right before going to bed:

"Book toes."

Hmmm. Now what in the heck did that mean, I wondered, the following morning. I racked my brain trying to remember what in the world I was thinking of - something with my book, obviously, but what was up with the "toes"? Did I mean "woes", or "throws", or should there have been a space after the "o" as in "give a book to..."? I tried to think outside the box - wondering if I had a book overdo at the library, or if it was a reminder to get a certain gift (a book about feet, etc.) for a baby. Despite my best efforts, I just couldn't figure out what I needed to do, regarding a book (mine or otherwise), that had anything to do with feet.

And then it hit me. "Book" wasn't a noun...it was a verb. (Kudos to the rest of you who picked up on that after the first tenth of a second. Want to start editing my to-do lists?)

"book toes" was a simple reminder that I needed to make a spa appointment for that girls weekend I took a few weeks back. It had nothing to do with Despite Lupus, nor any other book for that matter. It was a call to action - a simple "book pedicure for upcoming girls weekend" - which I was totally missing because I was simply looking at it the wrong way.

This matter of perspective is oh-so-relevant to our lives with lupus, don't you think? Situations arise daily (if not hourly) in our dealings with our disease that force us to choose a perspective:

For example, how do I view taking a nap everyday? Do I see it as a sacrifice, or as an opportunity to recharge so that I can function normally?

How do I view the fact that I'm medicine-dependent? Do I see it as a burden, or as a blessing that a handful of pills can give me the ability to be a perfectly-functioning mother to two little lovebugs?

And how do I view the experiences I've had with lupus, those that I now share with thousands of people via my book and my blog? Do I resent the fact that I have a chronic illness, or am I thankful that I've found a way to put that fact to good use?

I can't say that I'm capable of looking at life with lupus with such perspective all of the time, but I think if we can remember to do so 9 times out of 10, we'll be well on our way to living well, despite lupus.

Vacationing with lupus: to cheat or not to cheat

2011-05-13T14:16:00.000-04:00

As mentioned on Monday, I recently returned from a short family vacation with Johnny and the girls. We had a super time, and I’m pleased to say I was able to keep lupus at bay while traveling. No swollen digits, no joint pain, no rashes from the sun – so I must have done something right.

In fact, when I sit back and think about the choices I made over the course of the trip, choices regarding my health, that is, I realize I try extra hard not to break my healthy habits while I’m away. On vacation, it’s always tempting to break the rules– fitting in a little extra shopping time instead of a nap, or skipping the umbrella so that you can get a better spot at the beach…but in my experience, it never pays.

Want to know what I hold fast to, and what I let slide while I’m traveling? Here’s my “to cheat or not to cheat” list:

Nap: No way do I cheat! My nap seems to be my saving grace, particularly when traveling. Whether it’s the extra effort required for the actual travel days, the evenings when I stay up a little later than normal, or the extra activity I fit in during the day, that nap is my chance to recoup and return to 100%.

Sun: Nope – not worth it. Staying covered up is relatively easy for me. Having 10 years of lupus under my belt, my entire wardrobe has pretty much been converted to limited sun exposure outfits. I will do tank tops, if I know I’m going to have some decent coverage, but almost always opt for pants over shorts. I always bring a nice selection of hats, and I never head down to the beach or poolside without a cover-up on. And finding a table under an umbrella usually isn’t a problem…if it is, most of my vacationing cohorts know I’d prefer to eat indoors. It’s not worth the better view if it’s going to make me sick in bed for the rest of the trip!

Medicine: Never in a million years. My meds are like my safety net – I know they work, I know they keep me relatively healthy – why mess? The LAST place I want to flare is on vacation…not only because I want to enjoy my travels, but primarily because my best resources (my doctor, my bed, my pharmacy, etc.) are too many miles away to nip the disease activity in the bud. Stuck in a hotel room with debilitating pain isn’t my idea of a get-away. (Not that immobilizing pain at home is a real treat either, but you know what I mean!)

Help: I try not to cheat on this one either, and Johnny will tell you I did a particularly good job letting him help during this last trip (probably because I was spent by the time he came back to the hotel room every afternoon!) Truth is, vacations are meant to be enjoyed – and if that means my parents or in-laws want to help with the girls because they want a little grandparent time, I let them. I usually try to strategically plan out how things are going to work on vacation before we go – figuring out how I’m going to get in my rest first, and then working our schedules around it. In fact, before kids, Johnny and I traveled with Darwin and Henry quite often. And we’d decide in advance who was going to do the morning shift, night shift, and how we’d work it out around my naps. Planning is key – trying to manage a flare because you’re doing everything yourself is not.

Sleep (at night): Okay, this is where I let things go a little. I still stick to my “no less than 8 hours” rule, but if I stay up to visit a little longer than usual, or if we watch a movie for an extra ½ an hour, I fare okay (primarily because I know that nap is around the corner.) It’s just like anything else…you have to choose wisely. If I stay up late one night, my nap the next day has to be a little longer (or earlier in the day) than usual.

Food: I don’t mind letting things slide in the nutrition area, either. I’m a bit of a foodie – so I love trying new restaurants, especially if they have a separate dessert menu (always a good sign!) I’ll have plenty of time to get back on track to the fruits and veggies once I’m back home – so I indulge a bit. I do find that finding a good smoothie for breakfast or opting for a salad with grilled chicken at least a night or two while I’m on vacation helps to balance things out.

Exercise: We try and do a lot of walking on vacation, so usually this one works itself out on its own. But do I stick to my three-days-a-week treadmill routine? Nope, not really. I almost always take my running shoes…and if I can get in a mile and a half here and there, great. But I’d much rather relax a little bit, and enjoy that time walking around, exploring our vacation spot with the girls rather than chaining myself to the hotel workout room. Once I’m home, there will be plenty of opportunity to restart my routine. (That said, I remember when I was working long hours in an office, I loved the opportunity to workout while on vacation. I wasn’t finding time to fit it in at home, so it was actually a treat while traveling. Glad I reversed that!)

Lupus Fundraiser in Alexandria, VA - May 24th - Mark your calendars!

2011-05-11T08:00:00.000-04:00

The Lupus Foundation D.C. – Maryland - Virginia is partnering with Food Matters Restaurant to sponsor a Lupus Night, where 10% of sales will be donated to the foundation.

No RSVP necessary; just show up and spread the word! Details are as follows:

Tuesday, May 24 - 5:00pm – 10:00pm
Food Matters Restaurant
Cameron Station
4906 Brenman Park Dr
Alexandria, VA 22304
703.461.3663

An evening of great food/beverages and an opportunity to support a great cause! Show your support by stopping by Tuesday May 24! And look for me at the front, behind the stack of books. I'll be there, signing away!

Back from vacation unscathed

2011-05-09T08:00:00.032-04:00

A very happy belated Mother's Day to all of you moms out there. I had a perfectly spectacular day - spending it with my two favorite gals in the whole world (and their dad, who's pretty spectacular, too!)

We just returned from a 6-day vacation, so we opted to lay low on Mother's Day. I'd had enough good food and fun while we were away that I didn't need another brunch buffet - spending almost 4 days in Hershey, Pennsylvania will do wonders for anyone's sweet tooth!

Johnny had a work conference in Hershey to attend, so the girls and I decided to join him. It was great! I was a little concerned that the two days he'd be attending the conference would be tough for me - Paola didn't come with us, so I was on my own in terms of fitting in my nap each afternoon - but it couldn't have worked out better. The girls and I fared quite well on our own - hitting the zoo, the park, and all of the Hershey highlights - and making it back for mid-afternoon, simultaneous siestas each day.

I can't deny that I was feeling pretty good about myself - I felt like quite the accomplished lupus mom. I did just enough to show the girls a good time, but not too much that I wore myself out. The pool waited until Johnny could join us, as did some shopping that Deirdre and I had wanted to fit in without Miss Bernie. Both outings would have been a bit taxing with the two ladies and just myself - so I waited for my back-up to arrive to help man the post.

We tacked the Hershey trip on the tail end of some time with Johnny's family in Philadelphia - fitting in several parties and outings while we were there. We've been busy - but I don't have a single swollen digit to show for it - which is a sure sign of a successful traveling experience. I didn't always have such positive experiences on the road - later in the week, I'll talk more about how I've changed my ways to ensure that my vacations really ARE vacations, not just invitations for a lupus flare!

D.C. Lupus Symposium - this Saturday!

2011-05-06T08:00:00.008-04:00

Just a reminder that the 16th Annual DC Lupus Symposium is this Saturday, May 7th from 9-2pm. I'll be there with a table and my books...looking forward to seeing you there!

Below are details, straight from the Lupus Foundation DC Maryland Virginia:

Lupus Foundation of America DMV Chapter Annual Symposium
May 7, 2011
9:00 A.M - 2:00 P.M.

Location: Carnegie Endowment for International Peace
1779 Massachusetts Avenue, NW
Washington, DC 20036

Parking: 1800 Massachusetts Ave, NW**
Washington, DC 20036
$10 (CASH ONLY)

**The entrance to the parking garage is off of 18th Street

The 16th Annual DC Symposium is this Saturday, May 7th. This event is brought to you by all efforts and funds raised by the 5th Annual DC Walk for Lupus Now! The Foundation is very excited to have 9 different sessions and a special keynote presentation titled Lupus and Heart Damage: What do we know and What Can We Expect? The keynote speaker is Dr. Mariana Kaplan who is an Associate Professor of Internal Medicine in the Division of Rheumatology at the University of Michigan Medical School.

Other topics to be covered at the largest lupus education event in the Mid-Atlantic include:
New Drugs & Therapies in Lupus
Lupus & Endocrine Issues
Living Well with Lupus
Lupus & Adolescents
Clotting: APLS
Connective Tissue Diseases Overlapping with Lupus

The Foundation is also offering 3 optional support sessions for Men with Lupus, Family and Friends, and Meditation and Stress.

Light refreshments will be provided, but packing a lunch or snacks is encouraged.

See you there!

(And stay tuned to next week's posts...I'll be sure to fill you in on what I've been up to. It's been awhile!)

My spa-rometer

2011-04-25T08:00:00.043-04:00

Starting about 15 years back, professional spa treatments and I became fast friends. That was before lupus had set in, and in those days, the spa treatments always came in the form of massages. I didn't have them often, most of them coming once or twice a year as a reward for a job well done from my company or an appreciative client, but when I did, they were a welcomed treat.

Once lupus arrived on the scene, however, massages had to take a back seat - the pain and inflammation in my joints were too much to handle on their own, and there was no way I was going to pay someone to rattle those joints even more. So, just like most things when it comes to lupus, I made a change. Instead of a massage, I opted for a facial, or sometimes a manicure/pedicure, although I usually skipped the massage part of those services, too, as my jaw and hands/feet were some of my sorest joints. But as long as the service required as little jostling and prodding (and as little movement on my part) as possible, it was relaxing and enjoyable.

Later, as my health improved, I slowly worked back up to full service facials and mani/pedi's - including the massage part. It was a sign that my body was healing...and even though I only had them once in awhile, I relished in the fact that life was very slowly returning to normal.

The next step on my spa-rometer was to try an exfoliation body treatment...acknowledging that even though I might not be ready for a full-body massage yet, the idea of being exfoliated from head to toe with the equivalent of granulated lotion sounded right up my alley. And you know what? It was! (For those of you who like your back scratched, I think exfoliation treatments might be for you, too.) I loved being scratched all over - it was so relaxing and it felt great. And my skinned glowed for days afterward. And given the fact that my joints felt good enough to enjoy the treatment was cause for celebration. Healing was continuing, and my choice of spa treatments was a telltale sign.

And the most recent benchmark that I've reached on my spa-rometer? The massage! That's right - I've worked my way back to a full-body massage - having no pain, soreness, or inflammation in sight - paving the way for an enjoyable and pain-free massage. I still only have them as a special treat...but my annual massage came just a few weeks ago, and it felt just as good as it did pre-lupus. You wouldn't ever know this body was chronic-illness ridden - and aside from my bony looking fingers - I don't think the massage therapists would guess it, either. (Of course, I ALWAYS disclose the fact that I do have lupus - it's very important to clue them in to what's going on medically/physically.)

Already looking forward to next year's treat - although I may even try to fit in another treatment later this year. Why not do a little living well, despite lupus, eh?

Doing the RIGHT thing

2011-04-22T08:00:00.007-04:00

Piggybacking on Wednesday's post, I read a quote recently that my girlfriend posted on her LinkedIn profile. It stuck with me, and is just too perfect not to share, given that I was just talking about the benefits of getting out of bad habits and getting back on track. Here it is:

"If you don't have time to do it right, when are you going to have time to do it over?"

This is true in so many respects - with lupus, with kids, in life in general. We only get one shot at this whole thing - why waste time trying to cut corners, push the envelope, or "get away with something" when there's a chance we'll just have to pay for it in the long run? I'm all for making the most of my life, despite lupus, but when it comes to some of the essentials like getting rest, taking my meds, or seeking treatment when I know my body is in distress, why mess around? With two little girls at home, I won't have a chance to "do" their first years over again. So every day, I have to do what I need to in order to be alive and well, for them. I was just elaborating on this point in a Shelfari discussion of my book: Whatever it takes to do this lupus thing right, I need to do it. If I don't seize the opportunity this first time around, lupus might not give me a second chance!

Breaking the habit before I break a (sweet) tooth

2011-04-20T08:00:00.014-04:00

I am on a real streak...make that a "sweet" streak. Between the chocolate ganache cupcakes my neighbor brought over recently, the Easter candy sitting in my cupboard (in those fun, oh-so-springy colors), and the string of birthdays we've had, for which I've made batches upon batches of homemade cookies...my sweet tooth is in full effect.

I've always had a sweet tooth - homemade cookies are my favorite, with ice cream being a close second - but I've usually been able to get away with it. I balance it out with plenty of fruits and vegetables, chicken, beans, and the like, and do my best to fit in a few rounds of exercise each week. I feel good grabbing a treat here and there - because I know it's not my go-to.

Until now.

Recently, I've found myself reaching for a cupcake instead of an apple in the afternoon, and grabbing a bowl of ice cream instead of a bowl of strawberries sprinkled with a little powdered sugar. (Okay, make that a lot of powdered sugar) after dinner. And when I say "and", I mean "and." I'm no longer choosing to satisfy my sweet tooth with a treat once a day...I'm now supplementing my diet with a handful of M&M's in the morning, a couple of cookies in the afternoon, and then helping myself to dessert after dinner. It's awful - but my body has completely become accustomed to the sugar.

So now, it's time for a little detox. Nothing super severe...like emptying my cabinets or ridding the house of everything sugary and sweet (although that would help.) I'm not pulling out all the stops quite yet, just gently persuading myself to get back on track by re-instilling the concept of "the choice."

Choosing either the M&M's OR the cookies OR the after-dinner dessert. I make choices in my life with lupus everyday - now it's time to make a few choices in the kitchen. It's merely a matter of becoming conscious of the habit I've gotten into (and grown comfortable with), and turning it on its head.

I remember doing the same thing with fatigue years ago. For so long (all TOO long, that is), I functioned half the day on empty...running myself far past the point of exhaustion every afternoon before stopping for a nap. I'd become accustomed to functioning like that, and the bleary eyed, spacey, almost painful state of fatigue that I experienced every day was just part of the deal.

Until I wised up.

I started taking my nap BEFORE I reached that breaking point, and that's when life started to get a whole lot better. Today, I avoid that point of exhaustion like the plague...it's not fun, and I don't want to ever get into that routine again. It's a habit that I've broken - hopefully for good.

Now to work my habit-breaking magic on my sweet tooth.

An appill a day...

2011-04-18T08:00:00.005-04:00

Would you mind helping me with a little R&D for a Despite Lupus complementary project I have brewing? Check out the poll at the right...and answer as many questions as you can. I appreciate it!

The poll's subject? Pills, pills, and more pills. Those of us with lupus certainly know our way around a pharmacy - what with the myriad prescriptions we've been given since day one of our diagnosis. I consider it a MAJOR victory to be down to 2 actual prescriptions and a couple of OTC's - adding up to a measly 8 pills a day, 4 of which are calcium supplements. Three cheers for pill-pare-down!

Shortly after I was diagnosed, I had my sights set on being pill-free, thinking that would be a reasonable goal to set for sometime down the road. But after 4 pretty rough years of lupus disease activity, tons of flares, and dozens of prescriptions later, I came to the slightly more realistic goal of simply taking as few medications as possible (working closely with my doctor every step of the way.) That goal allowed for a much healthier perspective toward my disease, and a much more emotionally satisfying one, too. If a couple of pills keep me healthy, stable and strong (not to mention mobile, upright, and energetic), so be it. I'm perfectly pleased with my drug cocktail at the moment. I can run, jump, and do cartwheels, right alongside Deirdre. What else could I ask for?

Thanks again for stopping by the poll, and I'll be sure to fill you in on my research findings. I've got something cooking for sure - can't wait to tell you what it is!

D.C. Walk for Lupus - Join us this Saturday!

2011-04-13T08:00:00.001-04:00

The walk is here! Cross your fingers for great weather this weekend, as the lupus community in the Maryland, Virginia and D.C. metro area take on the 2011 Walk for Lupus Now on Saturday, April 16th. My own lupus support group team has done a phenomenal job of raising money - earning t-shirts, a tent, and even cupcakes for the day of the event - way to go, team!

In the area and want to join in the fun? Come on out to D.C. on Saturday morning, take a stroll down Pennsylvania Ave., and be sure to stop by the Despite Lupus table while you're there. I'd love to see you and say hello! (I'll have books available, in case you need one of those, too!)

Here are details - note that you can register the day of the walk, but pre-registering might make things easier. Either way, registration is free. See you there!

DETAILS: The 5th Annual DC Walk for Lupus Now - 2011. We will walk down Pennsylvania Avenue, NW starting at 13th street down to the Capital and back. We walk rain or shine!

DAY AND TIME: April 16th, 2011, 8:30 am - 1:00 pm

LOCATION: Washington D.C. - Pennsylvania Avenue, N.W. between 13th and 12th St. N.W. - Next to Freedom Plaza. Need a map? Click here!

WHEN TO GET THERE: Registration begins at 8:30 a.m. and walk starts at 9:30 a.m.

ONCE YOU'RE THERE: The Walk starts at 9:30, but you'll need to go to Registration first. The best way to get through registration is if you have already registered online. You can sign up online either as an individual walker or as part of my support group's team (LFA Alexandria Support Group.) Just fill out the information form (along with the health consent form, etc., etc.), grab your tennies, and set your alarm clock! (Note that at Registration, you'll receive a FREE knapsack per registrant, courtesy of Human Genome Sciences, the creator of Benlysta.)

Donations are accepted at the walk, but note that you don't have to raise a single dollar to participate. We'd just love to have you show your support by being there and taking part in the fun!

Do you want a Walk for Lupus Now! shirt? Every registered walker who raises $100+ will receive a shirt at the registration table.

A few final details...

Four of D.C.'s famous food trucks will be at the walk. Look for their tasty treats along the way.
The Walk is 5K or 3.1 miles. No one is required to walk the entire way, do not push yourself.
The Walk starts and ends at 1200 Pennsylvania Ave, so if you get tired feel free turn around!
There will be 3 water stations along the walk route
Crowd friendly dogs are welcome! Metro Mutts is sponsoring a water bowl stop for pups! (I don't think Darwin will be making an appearance, but he'll be there in spirit!)

If you have any questions or need assistance, people in 'Volunteer' or 'Staff' shirts will be able to help you.

Lupus Rally in Indiana - Mark your calendars!

2011-04-11T08:00:00.005-04:00

Living in Central Indiana and want to support the cause? Mark your calendar for Tuesday, May 10th, when the LFA Indiana chapter will host a Lupus Rally. Come learn about the Governor's Proclamation, Benlysta, and more!

Details below, taken straight from the LFA's flyer:

Who should come? Anyone that is affected by lupus (patients, family, friends)

Why should you come? Learn about the Governor’s Proclamation on Lupus, talk with experts on Lupus issues, hear a very special guest speaker, and learn about the new drug for lupus, Benlysta

Sandwiches/Beverages Served
6:30pm to 8:30pm - Tuesday, May 10
3760 Guion Rd (IOPO Building)
Indianapolis (near Westview Hosptal)

Look for balloons & signs

Lupus Rally in Indianapolis SAVE THE DATE - MAY 10, 2011

RSVP: info@lupusindiana.org
317-225-4400 or 800-948-8806

By jove, I think she's got it!

2011-04-08T08:00:00.016-04:00

So, who's the "she", and what has she "got", right?

"She" could be baby Bernadette, who's just recently figured out the whole eating thing, taking dishes like mashed bananas, pureed sweet potatoes, and ripened avocados to a whole new level. And just like her sister, she's a real messy one. If she's not "smocked", there's no hope that her outfit will survive the feeding. (Speaking of, here's Bernie spending a wee bit of time in her favorite place...the laundry basket.) I guess a mother's love has blocked my memory, because I just asked Johnny if Deirdre was that messy as a baby, and he just looked at me and laughed. Then, and only then, did I remember feeding Deirdre in the nude (her, not me). That was the only way we could save her clothes from total destruction. Neat eaters, my girls are not. But cute, sweet and funny, they have all locked up.

Or "she" could be Miss Deirdre, who's recently taken a keen interest in her personal stash of big girl panties. We have a long way to go (I think you have to start potty training in order to be potty trained, right?), but I'm hoping her level of fascination with Hello Kitty and Disney Princess underwear continues. I'm headed off for a weekend with the girls, but upon my return, I think I might be pulling out the M&M's and the egg timer. (I've heard that's all you need. Cross your fingers!)

But alas, the "she" is NOT Bernadette, nor is it Miss Deirdre. In this case, the "she" is me. What have I licked? The concept of going to bed. On time. Before I turn into a pumpkin. For the last few nights, I've been working on a sewing project. And in true Sara fashion, I was determined to get it done in record time. Of course, that usually means staying up past my bedtime to finish just "one last stitch", or telling Johnny as he heads up the stairs, "I'll be right up...", but madly sewing away 45 minutes later.

But not this time. For the past week, at approximately 10:30pm each night, I've said, "Enough." I've just stopped what I was doing, turned off my sewing machine, and walked up the stairs. I didn't take a few extra minutes to clean up (which is so unlike me), nor did I prep things for the next day. I just stopped, mid-backstitch, and went to bed. (Okay...so the "mid-backstitch" part is a little exaggerated, but you get my point.)

I wish I could impress upon you how atypical this is for me. I don't "stop" doing anything. I finish it. In one fellow swoop. (Come to think of it - I bet I don't have to explain further, do I? You're a finisher, too!) But, after 10 years of lupus living, I think it's finally sunk in that rest is more important than a cross-off. You can only accomplish so much on your to-do list in the course of a single day - and sometimes (make that most of the time), you just have to compromise on that list for the sake of your health.

How rested do you think I've been every morning since I've gone to bed at a decent time? How much more energy do I have to devote to my project during the day? And how refreshing is it to put aside the project while I can still function, rather than working on it until the point of exhaustion?

How far I've come, and how proud I am. I think Chapter 3, Section 1 (appropriately called, "Problematic trait #1: Productivity") of my book is finally sinking in. How about that!

Lupus hair loss - more tips and tricks

2011-04-04T08:00:00.004-04:00

My girlfriend, Karen, sent me the following hair loss tips, and they're just too good not to share! She's seen her fair share of hair fallout due to lupus, so these come to you first-hand from someone who's been there (along with a few comments from yours truly.) Take a look and see if any of these might help. As far as I'm concerned - you can sign me up for the flat ironing trick. I think it would be great!

Per Karen:

1) Hair thickening shampoo and conditioners: They don't stop hair loss but do make thin hair appear thicker. Favorite brands: Nioxin, Aveda Pure Abundance. They are drying, so you need to alternate with a good moisturizing conditioner.

2) Hair thickening products: Aveda Pure Abundance Potion. (It starts as a powder and transforms into what Aveda calls a "lotion".) She has yet to find a pomade solution, since these can be tricky because some make hair greasy and thinner looking - and nobody wants that! A little experimenting may be in order - and I expect a full report, please!

3) The flat iron curling trick: She says, "This is by far my favorite thing! I "you tubed" how to curl your hair with a flat iron, and I'd been to a hair dresser who did my hair like this. It adds waves and instant volume - much better than curling iron curls. I only do it occasionally so as not to damage remaining hair. But it really does make me feel like I have lots of hair."

If that's not a ringing endorsement, I don't know what is! She says it's also better to put hair up that has body - so if you end up sweeping it into an up 'do - all the better.

4) Headbands and bobby pins: rather than a regular ponytail, she suggests putting hair up in a head band, scrunching it forward and then put in a ponytail. Just seems like more hair that way. Use mini hair clips over elastics and even smaller ponytails to disguise the lack of a ponytail.

5) She says this anecdotal, but Vitamin C and B-12 B-6 seem to help slow down the loss (and she read about it somewhere. She's also found that fish oils make her hair super shiny and thicker as its growing.

6) Lastly, she says hair spray helps flatten the new growth wild hairs. The new growth hairs actually help add volume, though, by lifting hair at the roots (those stubborn cowlicks I referred to last week!)

Lupus Q & A with Dr. Erkan

2011-04-01T08:00:00.002-04:00

The Hosptial for Special Surgery (New York, NY) recently posted the questions and answers to an interview conducted with Dr. Doruk Erkan, Rheumatologist, on their Facebook page.

Take a look at this link when you have the chance - some interesting questions, with straightforward answers. Note that the interview is actually geared toward Lupus and APS (Anti-phospholipid Syndrome), but the HSS has a great section of their website dedicated to lupus. They even have Benlysta listed as an actual treatment (rather than a pending possibility!) for the disease. How cool (and quick) is that!

If you have time, take a minute to browse their site. The sections (among others) that caught my eye are as follows:

Your Own Best Advocate: How to be an Active Participant in Your Care

How to Reduce Corticosteroid Side Effects

Acupuncture for SLE: Can it Work for You?

Relaxation Imagery and Lupus: How it Can Help

Enjoy!

Lupus LOCKdown: Hair loss tricks and tips

2011-03-30T08:00:00.011-04:00

So I call this post "Lupus LOCKdown: Let no strand fall behind."

(I know, I know - that corny sense of humor of mine keeps you guys coming back post after post.) As promised, here are my go-to's when my hair is falling out:

1) Wash your hair as few times a week as possible. (If there's not much there, it's not getting that dirty, right?) When you do wash or condition...just pat on and gently wash out. A light, gingerly touch is key here. And go easy on the hair towel. Just pat dry...and let those stringy strands air dry on their own. At least they'll stay in that way!

2) Put your hair up, anyway you can, so that you don't see the thinning wisps that remain every time you catch a glimpse of yourself in the mirror.

3) Accessorize. Add earrings, necklaces, scarves and the like, anything that draws attention (yours and others!) to something other than your hair.

4) Add a hat to your look. There was a time when I didn't go anywhere without a hat on. It just covers up everything you need to cover up. And I'm not talking about a baseball cap day in and day out. Think cute, little numbers that add a bit of pizazz to your outfit.

5) Go short. Just cut it off, and start from scratch, and then watch your face light up from the fresh new start you've given yourself. (Note - I've done a complete overhaul of my hair only one time, and a semi-overhaul one other time. In the case of my three other hair loss episodes, the degree of hair loss didn't warrant a short new 'do. So use a bit of caution before you snip. Perhaps consult a good friend before cutting. If the loss really isn't that bad...you may just need to wait it out.)

6) Consult a dermatologist. (I waited too long on this one. Feel free to learn from my mistakes, and just make the appointment. If anything can be done, seize the opportunity!)

7) Consider getting a wig, or a hair piece. Whatever gives you coverage, and makes you feel good about yourself...I say do it!

Any other tips? Feel free to share in the comments or via email. I'd love to hear from you!

Lupus hair loss: managing the fallout

2011-03-28T08:00:00.017-04:00

Remember that hair loss I mentioned a few months ago, the fallout that I thought was subsiding? Well...I was being optimistic. I thought it was on its way out (the episode, not the hair), but I'm still losing strands by the dozen. It's okay, though. This, too, shall pass. But man, can it be unsettling.

Speaking as someone who's lost a good portion of her hair multiple times (I've lost at least 40% of the volume four times, and at least 70% of the volume one additional time), I've assessed that there are several stages involved in hair loss. Here's how I would describe them:

Stage 1: "Wow. I think I'm losing my hair. That's kinda crazy." In this beginning stage, you're almost in awe of the loss. It's never good to lose your hair, of course, but the loss is so minimal, you're just kind of surprised that this lupus symptom is actually happening to you, just like it says it will in all of the lupus books. Still, you openly talk about the loss...kind of like it's good party conversation. It's not noticeable to anyone but you, so you don't give it a second thought, or at least not much of one. You think you might even just be blowing the whole thing out of proportion - optimistically thinking that the strands will cease to fall after a week or two.

Stage 2: "Hmmm. I'm really losing a lot of hair. Like, a lot." This is the stage where you can confirm, without a doubt, that hair loss is taking place. You don't know what's causing it, but you would like it to stop. Now. It's still not noticeable to anyone - maybe your spouse or close friends - but you know the volume is rapidly decreasing. It's no longer a topic of conversation - although you may consult a few close friends to see if they've ever experienced anything like this.

Stage 3: "Okay. This hair loss is not cool." I don't like this stage. It's the stage right before the stage where you decide to proactively deal with the loss. Until then, you're just kind of holding on for dear life. Literally. It's as if you can feel each and every strand falling from your head, and you do whatever you can to keep each one in its place. You no longer mindlessly fidget with your hair, and you don't tousle mid-day to make it look fuller or bouncier. You just try to keep your hair as still as possible in order to minimize the loss. At this point, you don't talk about your hair, and you don't want anyone else to mention your lovely locks (or lack thereof) either.

Stage 4: "Yes, those are bald spots. And yes, I'm losing my hair. ..but it's okay. I'm dealing with it." This is the stage where you find out what you're really made of. Although you may think this is the worst stage of all, it's not. As far as the bare spots on your head - sure, it's not going to get much worse than this. But as far as your mindset, and your ability to cope with and manage the fallout - things are looking up.

So you're losing your hair? Yes, it's upsetting and frustrating, and you wish it weren't happening to you. But you realize that you're more than just a few strands of hair on your head. Your identity isn't wrapped up in your appearance, and your long wavy hair (or short curly 'do) doesn't define you. It can't; currently, you don't have much hair to speak of, and yet you're still here, present and accounted for. You're still mustering up the strength and courage to deal with your hair loss, and with lupus, for that matter, one strand at a time.

This is about the time you look yourself in the mirror, admit that your hair situation is pretty grim, but decide that you're a big enough girl to deal with it. You've accepted this as a manifestation of your illness, one that you can't control, but one that isn't going to get the best of you. Even though you don't know how or when it will get better, you're going to hold your head up high, and believe that one day, that head will once again be full of hair.

Maybe there's even a little new hair growth on which you can and should pin your hopes. Hair does grow. It just takes time. So in that meantime, it's time to pull out all the stops. You cut way back on your shampoo days, you forgo the hair dryer and the straightening brush (because that's, like, the ultimate hair loss no-no), and you resort to barrettes, hair bands and anything else that keeps those remaining wisps under control. Just by waking up every morning and facing those bald spots, you're reminding yourself that lupus isn't going to win. Not now, now ever. You're stronger and more resilient...even in spite of your hair loss.

A friend and I were recently discussing the ol' hair loss issue, and I was reminded of all of the things that I've done in the past to manage the fallout, this most recent episode as well as in hair losses past. Good news is that I currently have spiky new growth at least an inch long over most of my head, so I know new hair is on its way. It's a real pain to contend with that short, stubby stuff as it's growing in...but I'm not complaining. New hair is new hair, plain and simple!

On Wednesday, I'll give you my short list of to-do's when I'm faced with the fallout, most of which I've employed myself over the past few weeks. If you have any additional tricks or tips - let me know. I'll be sure to add them!

Lupus Workshop on 3/26 - it's back to Baltimore, I go!

2011-03-25T08:00:00.004-04:00

Join me this Saturday (tomorrow) for the LFA DMV's Dealing with Lupus & Disability Issues Workshop, featuring Sharon Christie, Attorney at Law (and nurse, too!) She knows the law, she knows medicine - what a super combination!

It's sure to be a great session. Registration for the event begins at 10am, and the workshop will begin at 10:15am, running until 12pm. All details are below - feel free to pre-register for the event here. LFA DMV provides their events free of charge, so be sure to come by. And make sure you stop by my book table. I'd love to say hi!

WHAT: Lupus and Disability Issues Workshop
WHEN: Saturday, March 26th, 10am Registration, 10:15 - 12pm Program
WHERE: Enoch Pratt Library-Light Street Branch
1251 Light Street Baltimore, MD 21230

* Parking is available behind the library (limited space), on the street and at the West St. Parking Garage.

See you there! (And if you don't get a chance to register, come by anyway. We'd love to have you.)

The D.C. Walk for Lupus Now 2011 is here!

2011-03-23T08:00:00.006-04:00

Spring is here - and that means that the Lupus Foundation of America's D.C. Walk for Lupus Now 2011 is just around the corner. My fabulous lupus support group has formed a team, and we are accepting donations from those of you interested in supporting the cause.

When is the walk?
The 5th Annual DC Walk for Lupus Now - 2011 will be held on Saturday, April 16th, 2011. I'll be there - look for the stack of books and my 8-foot post-up stand. You won't miss me!

The walk starts at 9:30am, with walkers heading down Pennsylvania Avenue, NW starting at 13th street down to the Capital and back. The walk goes on, rain or shine! Registration begins at 8:30 a.m. and the walk starts at 9:30 a.m. Festivities to conclude by 1:00 pm.

How can you donate to the Walk?
Feel free to click here to go to my donation page, or check out the team's main donation page. You can find my name there, too, if you'd like. The team and I would love your support!

How does your donation help?

The goal of my local chapter of the Lupus Foundation of America (LFA-DMV) is to improve the quality of life of lupus patients through education, community outreach services, and hope for better treatment through research. With your donation you become a member of the LFA-DMV, joining the thousands of lupus patients, their families and friends, and the medical community across the country working towards the eradication of lupus. It is through the financial support of its members that LFA-DMV is able to provide these valuable services to the public. The National organization has nearly 300 chapters and support groups in 32 states.

The mission of The Lupus Foundation of America is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure.

How much has been raised for the D.C. Walk to date? As of this weekend, it was a whopping $78,000! Can you believe it?

Despite Lupus supports the walk. Want to join me?

Despite Lupus makes its NOOK debut!

2011-03-21T08:00:00.002-04:00

First, Despite Lupus arrived in print, available for purchase on this website and on Amazon.com. Next, it appeared on Kindle. Now, the big DL is available on the NOOK - Despite Lupus is everywhere!

And don't think I'm ignoring all of you Mac users out there. Never fear - Despite Lupus for the iPad is right around the corner. You won't have to use that Kindle version much longer now!

For those of you anxious to snag a copy of Despite Lupus, the NOOKbook edition - feel free to click here. Just don't be surprised if you don't see the cover of my book front and center on the results page when you search for the book. For some reason, my cover art didn't upload as quickly as the actual eBook. (Techy wizard, I am not.) I'm sure it will be up momentarily - but rest assured, the eBook is available. And there's already a review to prove it!

Enjoy and thanks!

Woohoo! Benlysta's approved!

2011-03-11T08:00:00.003-05:00

After more than 52 years, the FDA has approved a new drug to treat lupus, a drug that is, in fact, the first drug EVER to be specifically developed to treat the disease. What a milestone!

On Wednesday, March 9th, the FDA approved Benlysta for the treatment of systemic lupus. The drug came out of Human Genome Sciences, Inc., which is located right here in Rockville, Maryland. I had the pleasure of passing on a copy of my book to one of the doctors working on the Benlysta team at HGSI. Maybe I should get a few more copies in circulation among other pharmaceutical companies to provide the same motivation!

Looks like the drug is going to be in the hands of doctors and patients by the end of the month. In the meantime, here are some commonly asked questions about the drug. Read up now so you'll be informed when the drug comes a-calling!

(For a complete list of FAQ, check out this link to the Lupus Foundation of America. They cover everything!)

What is BENLYSTA?
BENLYSTA is a human monoclonal antibody, which is a type of protein made in the laboratory that is developed to find and attach to only one type of substance in the body.

How does BENLYSTA work?
BENLYSTA is a human monoclonal antibody that specifically recognizes and blocks the biological activity of B-lymphocyte stimulator, or BLyS® (pronounced bliss), a naturally occurring protein which was discovered by scientists at Human Genome Sciences (HGS). Elevated levels of BLyS prolong the survival of B cells which can contribute to the production of autoantibodies – antibodies that target the body’s own tissues. Studies have shown that BENLYSTA can reduce autoantibody levels and help control autoimmune disease activity.

What does an FDA approval of BENLYSTA mean for people with lupus?
BENLYSTA represents a breakthrough in the treatment of lupus. BENLYSTA is the first drug approved to treat lupus in more than 50 years AND is the first drug developed specifically for lupus since the disease was discovered more than a century ago! Successful treatment of lupus will require an arsenal of safe, effective, and tolerable treatments. The approval of BENLYSTA is a significant first step toward reaching that goal.

What makes BENLYSTA different from other lupus treatments?
BENLYSTA is the FIRST FDA-approved medication specifically designed for the treatment of lupus. BENLYSTA targets specific immune cells, rather than the blanket approach of other therapies which suppress the entire immune system. Currently approved medications for lupus are borrowed from other diseases and conditions; other treatments are used off-label, which means they were never approved by the FDA for lupus. Many of these treatments have serious and devastating side effects.

These drugs include high doses of steroids, antimalarial medications, immunosupressive drugs, and organ-rejection drugs.

Who should take BENLYSTA? Will it work for everyone?
Each person with lupus is unique, and BENLYSTA will not be an option for everyone. You will need to discuss with your doctor if BENLYSTA may be an appropriate treatment option for you.

BENLYSTA is approved for the treatment of adult patients with active, autoantibody-positive systemic lupus erythematosus (SLE) who are receiving standard therapy.

The label for BENLYSTA includes the following limitations of use: The efficacy of BENLYSTA has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus, and has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of BENLYSTA is therefore not recommended in these situations. Nor has BENLYSTA been approved for use in children. More clinical studies are needed.

What side effects have been found with BENLYSTA?
The most commonly reported adverse reactions with BENLYSTA were nausea, diarrhea, pyrexia, nasopharyngitis, bronchitis, insomnia, pain in extremity, depression, migraine, and pharyngitis.

How is BENLYSTA administered?
BENLYSTA is administered through an IV (intravenous) infusion directly into the vein.

How much does BENLYSTA cost?
We understand that there are going to be many questions, particularly around the affordability and accessibly of BENLYSTA, and the LFA will continue to address these important issues, and provide information as it is available.

Why has it taken so long to find a treatment for lupus?
Lupus is a complex disease. It can affect multiple organ systems and symptoms can range in severity from one day to the next. Also, lupus affects each person differently, with varying responses to treatment. The complexity and heterogeneity of the disease presents challenges in evaluating potential new therapies. With each research study, regardless of the outcome, there are new discoveries that help pave the way for new therapies.

Who knew about lupus? I sure didn't!

2011-03-09T08:00:00.021-05:00

Guess what fun fact I just learned? Q-tips aren't supposed to be flushed down the toilet.

That's right - I had no idea those cottony little sticks could wreak so much havoc in the inner sanctums of the toilet bowl. Thankfully, it wasn't a plumbing issue that turned me on to this fact - just an older sister who gasped in horror as she saw me toss one into the toilet a few days ago. I don't know how or why I'd never learned proper Q-tip disposal techniques growing up, but somehow I'd missed the tutorial. Thank goodness Katie enlightened me. (What are older sisters for, if not to set us on the path of toilet bowl bliss ?)

I'm always amazed when I learn little facts like this - tidbits that it seems everyone knows but me (and Johnny). And based upon the 159,000 results I got when I googled it, it seems like flushing the ole' Q-tip gets plenty of air time. Apparently, it's quite the topic of conversation. Who knew I was missing out?

Interested to hear another tidbit that somehow passed me by during the past 35 years? I never knew until Deirdre was about 9 months old that baby bottles come with three (sometimes four) different nipple sizes that you are supposed to change throughout that first year of the baby's life.

Really? You are?

I had no idea that this was the case until one of Deirdre's bottles got mixed up with her cousin's of the same age. Her cousin, of course, was on to size #3...and I still had Deirdre using #1's. And no - she wasn't sucking the bottle so hard that she turned blue when she ate, nor were her lips permanently puckered, thank you very much. In fact, she seemed quite content using the same size nipple she did when she came home from the hospital. That said, she did seem to adjust quite well when I swapped out the nipples, downing a bottle within a few minutes, rather than the 15 minutes it was taking her. (Hey - I thought it was nice together-time.)

The fact is - there are normal, everyday things that occur in this world that you really don't know until someone tells you. Maybe q-tip and bottle etiquette aren't on your list of "a-ha's", but I bet there is something.

For me, there was another big "something" that I didn't know about - and that was what it was like to live with lupus. Heck - I didn't even know what lupus really was. And from what I hear from lupites around the world, that's pretty typical. One day, we don't even know what the disease is, and the next day, we find out that we have it, it's chronic, and we're going to have learn to deal with it for the rest of our lives.

And learning to deal with it...wow. That's a tall order. And that's why I wrote my book, and why I keep this blog. I want the shock factor of living with lupus to be minimized. I want people to know that yes, your life will change with lupus, and yes, it can really stink to make those adjustments in order to accommodate your illness, but living with lupus is manageable. It requires a strategy, and some patience, and perhaps a little creativity and out-of-the box thinking. But manageable? Oh yeah. Without a doubt.

As manageable as remembering not to flush your Q-tips? Well, now...that's debatable.

Living well is, well, addictive

2011-03-07T08:00:00.008-05:00

Remember my "X"? The attempt to finish a post before 10pm the night before it's published? Well - it's working. And I'm addicted.

Avoiding that mad dash has been great - I no longer feel the illumnation of the clock boring a hole in me as I finish up the last few sentences of a post. There's no end-of-day fogginess to contend with, no "gotta rush so I can get to bed" nonesense. It seems that working on a post earlier than later is proving to be a fabulous thing...and I should have known it would be.

It forces me to strategize, to plan things in advance, so that I'm not waiting until the last minute to pound out something that I can post. I've even avoided working on a post the entire day before it's posted...I just like the leisurely aspect of writing up something two or more days in advance and then just letting it sit. And no doubt this has all been great for my disease...lupus loves to feed on last-minute stress and anxiety, of which there has been very little. Yes, things in the land of Despite Lupus are calm and serene at present, and it may be that this lifetime procrastinator has been converted. Let's hope so!

(Okay - calm and serene might be a little much, given the two wee ones I live with, but you get the point.)

This idea of "sauntering: through the week, if you will, rather than rushing to make things happen at the last minute, reminds me of a quote I cited in my book. Years ago, I ran across this quote by Sandra Felton, author of "How Not to be a Messie". She says:

"To make Sunday satisfying, Saturday has to slow down.
To slow Saturday down, we have to control the weekdays.
We have to force them to march slowly in a more stately
manner so they won’t lump up at the end. "

Here's to a cool, calm and collected week, and to forcing lupus to take a back seat. Hey - maybe she'll just curl up back there and take a nap. It would be nice not to hear from her for awhile, wouldn't it?

Telling time has never been my strong suit

2011-03-04T08:00:00.007-05:00

A few months ago, I was visiting with my in-laws. We were making plans for the day, and I mentioned that my only "to-do" was to take a nap around 2:45pm later that day. That would give me plenty of time to fit in our lunch plans, while ensuring that I had a good nap before we headed out for an early dinner that evening. Everyone agreed, and we went on about our morning.

Lunch came and went, and the clock was nearing 2:30pm. Everybody noted the time, and said, almost in unison, "Okay, Sara. Why don't you go on up to bed? We'll finish cleaning up, visiting, etc, etc, etc."

Well, you know what I said? I looked at my watch, saw that it was only 2:32 pm, and said, "Oh no, guys. I'm not taking a nap until 2:45. I have plenty of time." God forbid I start a nap even one second earlier than planned, right? Of course, 2:45pm flew by, and before I knew it, it was 3pm, and I still wasn't napping.

And so it goes - just another day in the life of a determined, stubborn lupus patient. You know how it is - we try and assert ourselves against the disease. We make every attempt to show her who's boss by not giving in before we're good and ready. But when we do stuff like that...eek out the last few minutes of the oh-so-precious time we have before a nap...who loses? Lupus? I don't think so!

The only people who lose out are the lupites! Pushing our limits - whether it's skimping on rest, running too many errands, or taking on more than we can handle - is futile. The goal can't be to one-up the disease. The goal must be to stay one step ahead of the disease. And if that means napping a few minutes earlier or longer than planned, so be it. Say I get a few extra winks during that 15 minutes. At the end of the day - am I going to kick myself for missing out on those few minutes of clean up and visiting time? Or am I going to be armed and ready to have a rockin' good time that night at dinner?

Yeah. That's what I thought.

Now do what you need to do to arm yourself for a good, pain-free weekend...you deserve it!

Lupus DOES make me different

2011-03-02T08:00:00.017-05:00

If you ask my mom what I was like as a baby, she'd say, "Sara? She put us on a schedule. She told us when she wanted to eat, when she wanted to sleep...", and she'd be making this chopping motion with her hand the whole time she was saying it. (It's true, isn't it, Mom?)

So my parents can't be TOO surprised, when, 35 years later, I'm still trying to tell them what to do, or how to think, or what not to think, or what not to do.

(A quick aside - Deirdre and I went to the playground recently with my sister and her son, and met another little girl and her grandfather. We were talking about girls being more assertive than boys at this age (2 years old+), and I made the comment that, "some of us stayed bossy longer than others." Admitting it is half the battle, right?)

But back to my parents.

I was expecting company last week. I thought I had scheduled the house cleaners to come the day before my friends were to visit, but for various reasons (primarily a mix-up of dates on my part), the cleaners didn't make it. (They did, but not on the day I was expecting them...so the day they did come, we weren't available to let them clean.)

So I resigned that I would just have to do the cleaning myself (Johnny was out of town during this episode), and I tried my best to spread the tasks out over the course of two days, so that I wouldn't get too tuckered out. After the end of day one, Deirdre and I happened to skype my mom and dad, and I was catching them up on my mix-up with the cleaners.

They, of course, jumped at the opportunity to tell me not to overdo. Simply make my bed, my mom said, my guests would understand. My dad agreed, reminding me that it wasn't the clean house my guests were coming to see.

Well, being the stubborn, driven young (or not so young) lady that I am, I jumped at the chance to fight back - determined not to let lupus make me feel like an exception. Again.

To their kind words, I spat back , "Just for once, can you not think of me as your daughter, or as someone who has lupus? Just think of me as someone who's expecting guests, and who wants her house to be neat and tidy when those guests arrive. That's not too much to ask, is it?!"

There. I told them. Or did I?

I mean...I am their daughter, aren't I? Always have been and always will be. How can I expect them to suddenly think of me as anything else?

And as for the whole lupus thing. Well - I do have lupus, don't I? And whether I like it or not, that does change things, particularly when it applies to stressing myself out or working like a dog to make sure my house is spic and span.

Sometimes it makes me mad that my mom and dad wouldn't try the same thing with my sister. The subject of doing too much or overexerting herself just wouldn't come up. In fact, they'd probably tell her to be sure not to miss the laundry room. The same rules just don't apply to my sister.

But then again, I'm not my sister, am I?

(Right now, my parents are probably saying, "Yes, thank goodness we don't have two of you to contend with!")

So to my poor parents - I say, thanks, once again, for a lesson is not doing too much for the sake of my health. And to my daughters, Deirdre and Bernadette, I say I can only hope that you will love your mom and dad half as much as I love mine.

I wonder if that's even possible?

The ultimate motivator

2011-02-28T08:00:00.028-05:00

A few weeks ago, we were having a lazy morning in the Gorman household, lounging around in our pajamas for way too long and enjoying every minute of it. Bernadette was back asleep for her morning nap, I had crawled back into bed, and Deirdre and her dad were reading Snow White together at the foot of our bed. It was as laid-back as you can get - Deirdre still rubbing her sleepy little eyes, all of us chitchatting about what we might have for breakfast - eventually - once we motivated downstairs.

And then, as we were gathering ourselves together to make a move, I asked Deirdre if she thought I should hop on the treadmill before breakfast. In light of our super duper lazy morning, I expected her to say, "Oh no, Mommy. No treadmill today." But instead, she perked up and said, "Oh yes!" She went to the closet, pulled out my running shoes, brought them over, and started jabbering on about getting my running pants out of my drawer, about picking out a t-shirt for me to wear, yada, yada, yada.

Well - I guess she earned her wings as a personal trainer that day, huh?

I was flabbergasted that she answered in the affirmative. I was just sure she'd sense my lackadaisical nature, and hear the reluctance in my voice. But alas, like the whip cracker that she is, she overlooked it all and seized the opportunity to do something productive. Or rather, have me do something productive.

Of course, this reminds me of the encouragement we often get from loving friends and family members who are trying to help us make good, healthy decisions. Do we always want to hear what they have to say? Not usually. And do we follow their advice? Not always.

It seems that their offers to "do x" so that we don't have to, or their insistence that we "pass up on y" for the good of our health, often fall on deaf ears. I think it's a lot harder for us to make those good, healthy choices on our own. I can promise you that I had no intention of hopping on the treadmill that morning, until Deirdre encouraged me to seize the day.

I didn't want to hear what she had to say, but you know what? It was exactly what I needed to hear. I only d0 the treadmill a couple times a week...so it's not like I'm taxing myself too much. A little encouragement was just the ticket to fit in that last run of the week.

And there's no way I could have let her down - she was just so excited about the whole prospect. She even followed me into the playroom, coaching and encouraging me the whole way. In the end, it was the best workout of the week.

Let's face it: could anyone really say "no" to this face?

So the next time a loved one is trying to help - whether they're asking us to slow down, eat well, drink less, or exercise more - how about giving it a little more thought than usual? Think before you react, and consider the wisdom behind their suggestion. Can we bring ourselves to listen to what they have to say, even when it's not what we want to hear?

Fast forward: the doctor's office in thirty years

2011-02-25T08:00:00.017-05:00

Our pediatrician's office is getting a make-over. Well, actually, their filing system is. We were just in for Bernadette's wellness visit, (who is doing fine, thank you for asking), and learned that the office's filing system is going electronic. This means that all medical records, appointment details, and test results will be kept in an online, shared database, making it easy for the staff in our practice to access our girls' medical history during each and every appointment. Every doctor and nurse now carries around a small, portable laptop into which they record everything that transpires while we're in the exam room - questions, comments, statistics, and concerns. It's all there - but it takes awhile.

Of course, this is because we hit the office on Day 2 of the implementation of this new system...so everyone is still getting up to speed. Data that was transferred over from paper is still being verified, so we had to suffer through a short round of questions regarding medical history that I know we've answered in the past. No big deal - it took 10 extra minutes - but it gave me a few extra moments to mull over the questions being asked.

It was your typical stuff - allergies, surgeries, hospitalizations for Bernadette, mom's medical history as well as dad's, and grandparents' medical histories, too. As I was listing the details of my mom and dad's medical history, it dawned on me that one day, Bernadette will be sitting there, in a similar office with her daughter, spouting off details of my medical history (as a grandparent, of course.) And I got to thinking about what she'd have to say.

My hope is that it goes something like this:

Doctor: And your mother's medical history?
Bernie: She has systemic lupus, but she's been symptom-free for years.
Doctor: Really?
Bernie: Yes - she doesn't seem to have trouble with it anymore. She did when she was younger. She even wrote a book about it. Do want to buy a copy for your office?

(I'm just kidding about that last part. Well - not really, but kind of.)

Or it could go something like this:

Doctor: And your mother's medical history?
Bernie: Ummm...she has lupus, I know, but I don't really know how it affects her. I know what lupus is, of course - she's made sure of that - but it's been so long since she's had to deal with it, I'm not sure what all was involved.
Doctor: Well, that's good news.
Bernie: Yeah, I know. She even wrote a book about how she learned to deal with it, about how she was able to get on with her life, have me and my sister, and do just about everything, even though she had this chronic illness. The book is called "Despite Lupus." I can probably even get you a signed copy if you want. I think it's on Amazon, too.

(You knew that was coming.)

Clearly - these kinds of conversations will take place with Deirdre, too. In fact, I'm being interviewed by a company today who is doing research for the development of a new lupus treatment (more on that later, if I'm at liberty to say), and when I told Deirdre that they were coming to the house to talk to Mommy - she said, "They talk to you about lupus?"

Uh, yes, Deirdre. They're going to talk to Mommy about lupus. Two year olds. What are you going to do?