Pulling in an all-day-er just isn't for me!

While I’m not exactly what you’d call a “working girl”, my travels for my book and my recently launched toiletry bags are definitely keeping me busy. My bags are taking a little longer to ramp up than I'd hoped, but between manufacturing woes and patent protection, I’ve just had to be patient and wait on announcing them to the world. 

But I have learned something, just in the few experiences of selling my bags. And that is this –  the all-day trade show/gift show/exposition and holiday spectacular scene is not an ideal fit for someone like me. Standing for hours at a time – working all afternoon – I'm just not capable of working that way anymore. Don't get me wrong - I love all the hustle and bustle that's involved. The other vendors, the customers, the energy surrounding the events - it's wonderful. But what's NOT wonderful is that fatigue that sets in every afternoon, regardless of how much fun I'm having selling my wares.   

So I’ve had to employ help. At a couple of the shows, I asked my sister to man the booth while I left to take a nap. Yes, I hated leaving. And yes, I felt like I was missing out. But it worked out pretty darn well. I was rested, Katie made some sales, and I think we both felt as if we were fulfilling out sisterly duty. I was following big sister’s orders (to rest), and she was coming to little sister's rescue. All around, a good fit. 

I have several more all-day events booked this year, and I'm already brainstorming on the best way to handle the afternoon. Do I leave and come back? Do I schedule shifts among those near and dear to me - that is, my sister, husband, and others? Is it cool to just pack up and leave? 

The good news is that I'm planning ahead, and that I have no intention of just pushing through the event into the wee hours of the afternoon. Been there, done that - and it's not productive. I'd be the lamest sales person ever...or at least the most tired!

Stay tuned for more on this. I'm sure I'll be sharing my solutions in posts to come!

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

About a year ago, I announced the fact that for the first time 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 have reached 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, my doctor called, and revoked the 3 month hiatus. Bum deal! Turned out at that time, my protein levels, etc. were up, and so he ordered a 24-hour urine test, and asked me to come back 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 give the 3-month gap a try. And I’m up for it!   I know to call if something comes up, but for now, I think seeing him in three months time will be a real treat. Of course, when I was making my appointment with the receptionist at the end of the appointment, I said, “Okay, three months – that must be like June or July, right?” Not quite. It only gets me to May. But that’s still an extra month off.

And if my doctor calls in three days to say that my blood work, 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.

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 is that he can do voices while reading books to the girls. And his funny little voices are back…so life is slowly returning to normal.

But having watched him struggle so, I realized once again how hard it would be to take care of the girls if I were sick. I’ve never underestimated 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 flares at 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 conserve his 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 as they were within ear shot (and safe, of course), watching as many movies as they could, or recruiting the neighbor girls to come and help seemed like the most obvious, practical options for a sick parent to employ. And yet – if I were in his shoes, I know how hard it would be to make those things happen without feeling guilty – without feeling like I was shirking my responsibility – without feeling as if I was letting my girls 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, I know he could have done more (or is that less?) to give himself a break.  

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 the weekend while I was away, but when I asked him if he wanted her to work, he said no. He was sure he’d feel better by the time the weekend came. But as a caretaker, 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), and lined 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 carefully when it comes to inserting yourself into the life of your loved ones (which is another post...), I do believe that trying to anticipate their needs and having contingency plans in 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 loved one to refuse.

At least it would be for me! 

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

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

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

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.

I mentioned in an earlier post that the cold and flu bug had made an unwelcomed stop at our house this winter. Turns out he wasn’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 – and man, did he suffer. Johnny was down and out for almost a week. He had a fever and was achy and fluish for at least 5 days, confined to the bed for most of that time. By the 6^th day, he still wasn’t himself, but there was hope. And for those of you wondering, no, he did not get a flu shot this past fall. But ask him his plans for next year – I think his feelings on the subject have since changed.

What did this mean for me? It meant that I had a crash course in Caretaker 101. Now – for the record – Johnny’s a good patient. He doesn’t ask for much – and when he does, he tries to ask for everything (i.e. toast, a cup of coffee, a glass of orange juice, some water, a new Kleenex box and a medicine refill) all at once, rather than calling me in every fifteen minutes for something new. And he’s a discreet sickie – no complaints, heavy sighs, or excessive moaning and groaning. He just lies there and takes it like a grown up. But, the fact that he was sick still required a skill set that I haven’t exercised in a long time, if ever.

Sure, I take care of my girls…but that’s different. They’re…my girls. They don’t know enough to ask me to get some medication from the drugstore, or to call the doctor, or bring them more fluids. I initiate all of the caretaking in the case of Deirdre and Bernie, and it’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 personal agenda, and hopefully, not make it seem like I was doing so. I was reminded of the 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 sharing the responsibility of child-rearing. As I retrieved extra blankets, water bottles, and cough drops, I was reminded how many times Johnny had taken care of me. How many days on end he’d tucked me into bed, sat with me while I took my temperature, brought me warmer pajamas, or filled up my water glass. I remember Johnny doing everything he could to make me as comfortable as possible – and never making me feel like I was asking too much. And most importantly, doing that day after day after day.

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