Friday, September 30, 2011

Lupus in the top ten: recognition is the first step

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

Wednesday, September 28, 2011

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

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!

Monday, September 26, 2011

Everything is NOT possible - even in the Big Apple.

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!

Friday, September 23, 2011

"Welcome to Holland" comes full circle

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!

Wednesday, September 21, 2011

The lupus dilemma: what to do with three spare hours

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.

Friday, September 16, 2011

The bullet points of lupus

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!

Wednesday, September 14, 2011

Hitting your lupus stride

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!

Monday, September 12, 2011

Lupus goal setting: the art of working backwards

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!

Friday, September 9, 2011

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

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!

 

Wednesday, September 7, 2011

Lupus protein falling...the Cozaar is working!

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!

Monday, September 5, 2011

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

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.