Friday, February 26, 2010

Henrietta Aladjem - The Original Lupus Lady

While I'm embarrassed to say that I'd never heard of Ms. Aladjem until recently, a lovely woman at one of my book signings told me about her, and it seems that she had quite a story. Author, advocate, and lupus survivor - Ms. Aladjem appears to have made a significant impact in the way doctors (and patients) look at lupus today. Here's an article featured about her in the Boston Globe several years back...and here's a link to her book.
***
Henrietta Aladjem; her suffering became beacon for lupus patients
By Gloria Negri, Globe Staff November 17, 2005

Henrietta Aladjem first experienced symptoms of systemic lupus erythematosus in 1953, when relatively little was known about the potentially devastating immune system disease.

''I was given one year to live," she told the Columbus (Ohio) Dispatch in 1999. ''At the time, if you didn't die within four years, they questioned your diagnosis."

Mrs. Aladjem, whose longtime advocacy on behalf of others with the disease earned her the sobriquet, ''Mother Lupus," died Oct. 30 at Mt. Auburn Hospital in Cambridge of a stroke. She was 88 and lived in Watertown.

Dr. Peter H. Schur, senior physician and director of lupus research at Brigham and Women's Hospital, who had treated Mrs. Aladjem since 1967, said she had been in remission from lupus for 30 years. ''I used to joke with her," he said, ''and attribute it to her good Bulgarian blood."

In the 1970s, Mrs. Aladjem and Schur cofounded the Lupus Foundation of Massachusetts and subsequently helped found the Lupus Foundation of America Inc. in Washington, D.C. In 1988, they collaborated on a book, ''In Search of the Sun," a title that refers to the adverse effect the sun has on lupus patients.

Mrs. Aladjem became an advocate for other lupus sufferers soon after she found out she had it. In her 1972 book, ''The Sun is My Enemy," she talks about the onset of the illness and her struggle to get a diagnosis. Through her many years living with lupus, she hoped that her books, newsletters, and speaking engagements would help others.

''Doctors knew very little about lupus at the time," Mrs. Aladjem's son, Albert of Cambridge, said. ''And there was no literature. Mother became determined to learn as much as she could about the disease and became self-taught, and then she wanted to make the information available to others."

With her charismatic presence and in her Bulgarian accent -- she never minded being described by friends as ''a cross between Zsa Zsa Gabor and Mother Teresa" -- Mrs. Aladjem spoke before government, medical, and private forums to raise funds for lupus research and consciousness about the disease. Her self-taught knowledge was considered so vast she was invited to go on rounds with doctors at hospitals.

''Hennie was fighting for patients' rights even before the phrase was used," said Vicki Croke of Newton, a friend of 33 years. ''She pulled lupus out of the shadows. She was really a strong-willed human being, and nothing got in her way of getting lupus to the forefront."

When Mrs. Aladjem's knowledge of the disease that threatened her life became known in the medical community, she was much in demand as a spokeswoman.

''Henrietta was very sophisticated about pertinent medical facts about lupus," said Dr. Sheldon Cohen, former head of the allergy and immunological institute at the National Institutes of Health in Bethesda, Md. ''She was a very persuasive woman."

She developed a publication called Lupus News, which she put together at her home, he said.

Mrs. Aladjem continued to raise funds for lupus patients well into her later years. ''Hennie could raise money on a dime," said Elyse Smith, president of the Lupus Foundation of New England. ''She was a practical joker, someone who could make a roomful of physicians laugh out loud but at the same time be taken very seriously by them."

Mrs. Aladjem was honored by both Presidents Carter and Reagan for her work on lupus. Yet she treasured just as much, friends said, the many letters from lupus sufferers around the world thanking ''Mother Lupus" for her compassionate support. ''She was on the phone morning to night helping patients," Croke said.

''Hennie was indeed the patient's best friend," said Barbara Feinberg of Newton, whose daughter died of lupus 10 years ago. ''Someone would call her in the middle of the night, and she would meet them at the hospital. During the years, I could see my daughter's closeness to Hennie grow. She would tell Hennie things she wouldn't tell me."

When Mrs. Aladjem left the Lupus Foundation of America, she brought her expertise to the University of Massachusetts Medical School in Worcester, where she and Dr. Robert Zurier, chief of rheumatology, put out the newsletter Lupus World.

''Henrietta was a politician in the best sense of the word," Zurier said, discussing her ability to get the word out about lupus. ''Her impact was huge in educating both patients and physicians."

Mrs. Aladjem was born in Bulgaria and did not speak English until she came to this country at age 24, according to poet David McCord in his introduction to ''The Sun is My Enemy." She left her home and parents in Sofia in 1941. ''Besides her personal belongings, she carried a bag containing 52 books," he wrote. ''She was always a reader."

After arriving here, she married Albert Aladjem, a wool merchant, who predeceased her. They lived in West Newton.

In ''The Sun is My Enemy," Mrs. Aladjem recalled the arrival of her first symptoms of lupus.

After consulting with doctors here and abroad, Dr. Frank Gardner of Peter Bent Brigham Hospital diagnosed the illness. The hospital is now Brigham and Women's.

''I knew if Henrietta could read Bulgarian, she could read Russian," Gardner, now at the University of Texas Medical Branch in Galveston, recalled. He sent her back to the stacks at Widener Library in Cambridge to find literature and scientific information about lupus written in Russian. She found helpful facts about therapy and went to France to meet the doctor who had discovered them, Gardner said. ''When Henrietta was on to something, she was like a bulldog."

Mrs. Aladjem remained connected to the Lupus Foundation of New England until about a year ago, Smith, its president, said. ''Henrietta's biggest hope was to live to see the day when there would be life without lupus."

Services have been held.

© Copyright 2006 Globe Newspaper Company.

Tuesday, February 23, 2010

Fashion faux pas - count me in

It's recently come to my attention that I've been committing a major fashion faux pas - and Deirdre's been suffering for it!

At the end of last summer, I was dressing Deirdre in several little pants outfits that I'd inherited from my sister...each one cuter than the last. The pants fit perfectly - just the right length and fit around the waist, which was surprising because up until about a month ago when she had a growth spurt, she'd been in the 15% percentile for height and weight. (No worries, though- her mamma's only 5'3" (on a good day) and given Deirdre's, ahem, sizable belly, weight was not an issue!) But I couldn't figure out how these pants weren't too long on her - but I've just discovered the truth. They're actually capris pants, in the next size up! This whole time, even before Deirdre turned 12 months, I've had her running around in pants that were meant to be crop pants for 18 month olds...but she was wearing them as full-length jobbies. The only other person I know who can get away with this is my sweet, lovable Mom (who is BARELY 5'1"), so at least Deirdre's in good company.

This fashion faux pas got me to thinking about the crazy, not-so-stylish things I've done because of lupus - accommodations in clothes, jewelry, and hair that just had to happen to make life easier for me. I allude to many of these in my book, and would, still to this day, encourage others to start making their own fashion faux pas. I say if it eases your joints and eliminates any amount of pain and frustration, do it! Here's a short list of my unmentionable doings...feel free to add yours to my list!

Faux pas #1: Cotton/spandex bandeau bras. Oh man. Are these things comfortable! There are no wires, no clasps, no adjustable straps, no nothing. Just slip one over your head and you're good to go. You don't even have to remove them for xrays (of which I had plenty!) The down side - these things offer no lift, no push, and no pad. They do absolutely NOTHING for your figure - and took me straight back to my days of middle school and training bras (or, I guess, fast forward to granny days of no lift and plenty of need for it). Either way, they worked for my purposes and I'm proud to have been a fan. I'll never, however, underestimate the value of a good brassiere.

Faux pas #2: Slip-on EVERYTHING. Not that there's anything inherently bad with slip-on clothing, but avoiding, at all costs, buttons, zippers, and snaps tends to leave one's wardrobe fashion-free. In fact, polyester is the first thing that comes to my mind, although I'm proud to say I never succumbed. I do remember a specific outfit I wore repeatedly during one of my crummy streaks with lupus - it consisted of a soft, plain, black, long sleeve t-shirt (to block out sun, of course), paired with a pair of soft/slippery/faux leather red pants that required one snap in total, with black slip-on shoes. I could have slept in that outfit (and probably did), it was that comfortable. And you know what? That's the name of the game - comfort above all else, when your body is in such pain. I can assure you, my clothes weren't impeding my ability to move at all; that, apparently, was lupus' job.

Faux pas #3: Limited to no jewelry. Accessories? I said forget about them. They were just too complicated to include - the metal/restrictive bracelets hurt, dangling earrings were too hard to handle, and necklaces had to be slip-over-the-head or else. And usually, it was "or else". But I did manage to snag a pair of small, silver, flat hoops that I could wear with everything. These earrings were even comfortable enough to sleep in, thus eliminating the need to take them out and put them back in each day - which would have been too much for my arthritic fingers to handle. Were they fashionable? Ugh, I don't really think so. But they made me feel better about myself - at least I had made an attempt to complete my outfit, which, come to think of it, wasn't making any sort of fashion statement either. So, actually, I guess they matched pretty well.

Faux pas #4: Perpetual pony tail. Not only did I wear my hair up every single day for about three months (because I was losing it at lightening speed), when I had lost enough of it to no longer warrant a pony tail, it morphed into the worst comb over/wrap around bun you've ever seen. But putting my hair up eliminated the need to dry it (which was practically impossible for me to do) or brush it out (which made me feel like I was pulling it out even faster). And putting it up made me feel like I was masking the bald spots, which I was terribly self-conscious of as it was. Of course, after several months of hair loss, I ended up losing too much for even a comb-over to work, so I eventually changed my unstylish ways and went ultra hip - cutting off all of my hair and sporting a short, sassy, pixy haircut. Once I cut my hair, I felt great...but I appreciate the months that my comb-over bought me until I was ready to cut it all off. (You can read all about my hair cutting process here.)

There you have it. Book me, Style police - I'm guilty as charged.

Friday, February 19, 2010

Stubborn and Head Strong: Prerequisites for Lupus?


I'm sure you've seen this Gary Larson "Far Side" cartoon before. If not, feel free to insert a picture of Henry (pugalito-extraordinaire, may he rest in peace) in the strip. This was Henry to a "T". He'd stare at you the whole time he was being reprimanded, cocking his head back and forth. When you were finished, he'd do one more head tilt, and then come up and give you a big ole' lick, as if to say, "It's okay. It's all over now." And he'd do this every time. At least I can say he was consistent in ignoring our admonishments.

Much as I hate to admit it, I can be just as hard headed from time to time. In fact, I had many "blah, blah, blah" instances in my fight against lupus, particularly when I didn't like what was being said. Here's one example that comes to mind:

Picture me, years ago, in my perinatologist's office. I had just suffered a miscarriage, and while I was devastated, I was anxious to start trying again, regardless of the state of my health or current disease activity. So I went in for a follow-up appointment shortly after the miscarriage, and here's what the doctor had to say, in short:

"Sara, it's really important that you get your disease under control before trying to become pregnant again. It's imperative that you be as healthy as possible before you start trying so that you give yourself the best chances for a successful pregnancy. Once the lupus is no longer active, and your symptoms have subsided, then you can start trying again. Until then, I encourage you to focus on your health, rather than going ahead and trying to become pregnant."

Good, solid advice, don't you think? Unfortunately, here's what I heard:

"Sara, blah blah blah blah blah blah trying to become pregnant again. Blah blah blah blah blah blah you start trying blah blah blah blah. Blah blah blah blah blah blah blah, you can start trying again. Blah blah blah blah blah blah going ahead and trying to become pregnant."

Really, now.

I walked out of her office, called Johnny (of course, this was one of the only appointments he'd missed), and told him we were good to go. We could start trying again. Of course, in the back of my head, I knew what she had told me, but I had blocked out the stuff I didn't want to hear, in order to keep my agenda of having a baby. In order to show lupus who was boss. In order to maintain control of my life.

Long story short - I did start trying again, but my body wasn't up for it. Over the course of a few
weeks, I grew sicker and sicker, and Johnny quickly called off the mission. I ended up in the hospital less than 6 months later, having the closest call in my lupus history. My body knew I was in no shape to carry a little one, whether I wanted to admit it or not. Thankfully, I wised up and started taking steps to live with the disease, rather than against it.

I threw my agenda for kids before 30 out the window, and started doing what I could to become healthy, stable and strong.

After four years, my hard work clearly paid off, as I gave birth to a beautiful baby girl named Deirdre. She's already 16 months old - can you believe it? Here she is, my pride and joy.

Come to think of it, I wonder what she hears when I say, "Deirdre, sit in the bathtub," or "Deirdre, keep your food on your plate," or "Deirdre, eat one teddy graham at a time."

I think I already know. In fact, "blah" was one of her first words.

Wednesday, February 17, 2010

Those gosh-darn workarounds

Several years ago, I went on a purging spree in our house, which included getting rid of an OXO Salad spinner - the kind where you push the little pump like thing on the top and the water from your lettuce is magically whisked away, leaving you with moisture-free leaves. I ended up selling it on Ebay (even though I squealed when my mom first gave it to me), because for several years before the purge, I'd stopped buying fresh lettuce, opting instead for the bagged, pre-torn, pre-washed, convenient stuff. I didn't really give much thought to why I'd stopped, but now I realize it was because I didn't like (or couldn't do) the extra steps of tearing, cleaning, and sorting the lettuce with my achy, breaky joints.

Thankfully, I haven't cried a river over my beloved salad spinner. Even though I am back to buying fresh lettuce leaves, I don't mind the extra steps since my fingers don't give me much trouble anymore (unless, of course, I'm contending with a power outage!)

That said, I realize that in converting to bagged lettuce, I'd come up with a sort of "workaround" without even knowing it. On one hand this is great...I mean, how resourceful of me. But on the other hand, how sad that I never even realized why I was casting away one of my (once) prized kitchen utensils.

I realized I created another workaround just recently - not because of limited mobility or joint pain - but because the three-hole punch I use to put together handouts for Johnny's business was broken. It's been broken for several months now (I know - I should have taken it up with management), but it wasn't terribly awkward to use, given the workaround (a cross-over maneuver I performed with my hands during each punch) I created to deal with the busted springs. Of course, after Johnny did a round of handouts himself, there was a bright, shiny new three-hole punch on my desk the following week. (Hmmm, I wonder.)

But the funny thing is that the first couple of times I used the new hole punch, I couldn't remember how to use it without doing the hand contortion I'd come up with. It just goes to show how we can forget the changes we've made to accommodate our situation, be it a broken hole-punch or an aching finger.

So just keep an eye out for this concept of making do and creating "workarounds." Forgetting how you've changed the way you do things in order to accommodate the pain you're in can be dangerous - we can forget what "normal" should really feel like. It's good that our bodies are capable of adjusting, but just make sure you're not letting unnecessary pain, fatigue, etc. go unattended because your workarounds have become the norm. Take a moment to recalibrate your health meter, and just make sure you're still on target.

Monday, February 15, 2010

Lupus International.com

Any of you on the west coast? If so, take a minute to check out Lupus International, a non-profit organization located in California. I was recently contacted by their program director, letting me know that even from across the country, they'd love to be of service to people living with lupus.

Their introductory video says a lot about their organization...click here to view!

Friday, February 12, 2010

Tongue twisting lupus antibodies

Johnny recently finished a book by Sinclair Lewis, called "It Can't Happen Here", and the whole time he was reading it, I kept asking him how he liked the book by Upton Sinclair. I could NOT keep the names of those two authors straight (probably because I haven't read much by either of them), but it got me thinking about a whole group of author's names that throw me for a loop. Try these on for size:

So not only do we have Sinclair Lewis and Upton Sinclair, we have Lewis Carroll, C.S. Lewis, and just to add another one to the bunch, Robert Louis Stevenson. These tricky tongue twisters remind me of the names of those nasty lupus antibodies most of us are carrying around. I mean, look at this list of tricky wickets....who can keep them all straight? (Let me answer that. Not me!)

First, consider the fact that there are antibodies, and then there are autoantibodies. As lupus peeps, many of us have to contend with (or at least get tested for) antiphospholipid antibodies, of which there are two - lupus anticoagulant and anticardiolipin antibody. Then there's the antinuclear antibody test (ANA), anti-DNA (double stranded), anti-Sm, anti-RNP, anti-Ro [SSA] and anti-La [SSB]. To all that I say AGHHHHHHHHHHHHHHHHHHHHHHHH!!!

I've provided a couple of links to help you decipher what in the heck the above paragraph is all about, so feel free to click for more information. Please do so - at least ONE of us will be enlightened!

Wednesday, February 10, 2010

Surrounded by the white stuff

Being smack dab in the middle of the eastern seaboard...we're knee deep in snow right now. We lost power over the weekend, and I now know two things:

1) My joints do NOT do well when the interior temperature of my home hovers around the 40 degree mark. I wasn't in terrible pain...but I woke up both mornings before 6am and took my prescribed 5mg of prednisone because of the ache. That magic little pill never went down so well! Thankfully for us, my sister lives near by and because her power was restored before ours was...we headed to her house for good food, shelter, and company. It wasn't quite as easy as it may sound...my brother-in-law had to dig himself out in order to get his 4-wheel drive up and out of his driveway, through the unplowed streets, and over to our house to pick up Deirdre, Darwin, and me. We were absolute icicles by the time he arrived...and while we had a chance to thaw on the trip back, the road conditions made for a bumpy, slippery ride. Johnny stayed behind to finish shoveling our mile-long (well, not quite) driveway before coming over to join us. We had quite the sleepover, and I'm so grateful to my sister and her family for welcoming us with open arms. I can tell you this - a hot shower never felt so good!

(Re: the shoveling of our driveway: the process would have gone a whole lot faster had I pitched in to help...but given the twinge in my joints, Johnny absolutely refused to let me touch the shovel. In fact, he warned that if I even made a move for that orange handle, he was going to do my next blog post for me - exposing me for the hypocrite that I would have been. Ah, a supportive husband. Is there anything better?

2) Worrying will get you nowhere, except in a flare. Okay - so I'm not in a flare...not even close. But over the weekend when it was so stinkin' cold in the house, I was terribly worried about Deirdre, particularly at night. She had a ton of layers on, was surrounded by blankets, and looked awfully cozy as she slept soundly every time I checked on her. But, oh, what a tizzy I had myself in! I'm sure the stress and sleeplessness contributed to the achy joints I mentioned above. Good news is that since that first night at my sister's...all pain has disappeared, along with those nasty worry wart tendencies.

Having been in, what I would call a crisis situation, I now understand what it means to take full responsibility for your child and her well being. I'm sure this is only the beginning...there will be plenty of opportunities in Deirdre's future for me to worry (probably ten times as much), but I suppose those will just be chances for me to temper my panic and keep a level head, all in the name of keeping lupus under control. And if and when there IS cause for concern, if I've kept myself under control, I'll be ready to help, not stuck in bed nursing my aching joints. I can at least go into the next 18 years with a positive attitude, right?

Friday, February 5, 2010

The 2-hour explanation

So a few of you have asked, after reading Wednesday's post about my afternoon nap moving from an hour and a half to two hours, why? Why do I need more sleep? Why is the standard 1.5 hours suddenly not enough? Why did things change?

The short answer is I don't know. Nothing with lupus is set in stone. Sometimes your body just changes, and you can't pinpoint exactly what's going on. In fact, this is one of the biggest complaints lupus patients have about the disease - its unpredictability. I second the motion - not knowing what's coming stinks. But, in my opinion, and in my case of lupus, things actually might be more predictable than they first appear. What do I mean?

Take the example of my nap. I can't be sure why I need more sleep, but here's my hunch:

The need began after a busy, bustling, holiday season, during which I threw a big party at our house, traveled out of state, hosted overnight guests at our place, and shopped, wrapped, and assembled a ton of gifts for people I love. It was a fabulous month. But it was a packed month, too.

After that, I traveled abroad for a week and a half, came back for a week, and promptly left for a week at my parents to attend a family visitation, funeral, and another gathering a few days later. All of these were outside of my hometown, so again, I was on the road almost everyday that week. I wouldn't have wanted to be anywhere else during a time like that, but there was a lot of activity to fit in.

Emotionally speaking, in December, I had to put my best little doggie friend Henry to sleep. And in January, I had to say goodbye to my wonderful Uncle Bob (who finally lost his year-long battle with cancer at the young age of 65, hence the family funeral mentioned above), so to call the last two months emotionally challenging would be a big understatement.

I know stressful, emotionally taxing situations demand a lot of our bodies, and with lupus, I don't know that we have a whole lot of extra reserve to expend. Travel can be a drainer, too. Regardless of how much sleep you get or how much you watch your exertion levels, you're still taxing your body more than usual.

Now the great thing is that today, I feel super. I haven't had any swelling or joint pain, fevers or rashes, hair loss or chest pain during the time referenced above. So I consider the last few months a success. Life came at me, and I responded. And I'm still here, healthy, happy, and capable of blogging about it. Much to my dismay, I can't stop life and death from happening, but I feel that, provided I take care of myself, eat well, exercise, get my requisite rest, (and when the need arises, even more), I can prevent lupus from running rampant.

The most important factor for me is to be in the right frame of mind to make good, healthy, mindful decisions. To be cognizant of my body's demands, acknowledge that I'm not invincible, and be willing to tweak my lifestyle when and if the time comes. I'm ready to go. Are you?

Wednesday, February 3, 2010

Two hours, it is

Well, folks - there's no denying it. My nap has officially crept back to 2 hours.

If you recall, 6 1/2 years ago, around the time of a week long hospital stay, when my doctor declared the cause for my admittance "a pretty close call," I imposed a daily 2-hour nap. My company worked with me to revise my work day so that I could work up until 3pm everyday, giving me time to still be alert enough to drive home and hop into bed before that terrible lupus fatigue hit hard. Of course, I usually stretched my work day until after 4 (because you know how I am; if you don't, chapter 3 will explain everything), but come about 5pm, if I wasn't in bed sawing logs, I was a mess. I just couldn't fight the fatigue anymore. My body desperately needed to sleep mid-day, and the more I fought the fatigue, the sicker I became. If I didn't rest, I would be totally wiped out for the remainder of the day.

You know, I used the phrase, "I just couldn't fight the fatigue anymore", but that's not entirely true. I very well COULD have fought it. I could have pushed through every single day to work a full 9 hours (maintaining my full-time pay and my big-timer status at work - that would have been very nice.) I could have attempted to act as though this thing called lupus wasn't affecting me. I could have stood my ground and refused to admit that my body was a little bit weaker than it used to be. I could have avoided a nap at all costs, because 20-somethings don't take naps. But I can tell you how that story would have ended. Not well. I was sick. And as much as I wanted to ignore/deny/alter that fact, that wasn't an option. The crazy thing, is that once I started taking this much-resented nap everyday, I wasn't as sick as I had been. In fact, once my body started realizing that it didn't have to push so hard everyday, that I was going to give it a break every afternoon, it started responding positively. I can't say that my nap single-handedly brought me out of illness, but I do know that the fact that I continue to take an afternoon nap every day is what keeps me living well, despite lupus.

Sure, there are times when I hate cutting my activities short, or passing up on errands, or foregoing an outing that's going to prevent me from napping (anything that starts at 2pm is bad news for me.) And my husband and I have discussed the fact that, because I plan on napping every afternoon for the foreseeable future, there are lifestyle issues that we're always going to have to contend with (babysitters, his work schedule, my inability to work full-time). But we voluntarily make those decisions because taking a nap gives me a whole day to work with again. It allows me to care for my daughter, and lets me eat dinner with my family. It allows me to make evening plans, and it allows me to wake up in the morning, knowing that any twinge of fatigue will have its chance in 4-6 hours to be squelched. My nap keeps me well, and it keeps me healthy. It gives me my life back, and I can't think of any reason that could ever trump that.

All that said, about 4 years ago (give or take a year), my nap went from 2 hours to an hour and a half. It just happened over time...I became healthier and stronger, and my body didn't need as much refueling time as it did before. And I was thrilled! Imagine getting an entire 30 minutes back during days when you consistently ran out of time (because napping every day didn't make me a bump on a log. It was quite the opposite. Because I had all of this extra energy and wasn't fighting fatigue all day long, I became more productive.) It was awesome, and I was proud of the fact that I had built up my health enough to need less rest. It was quite a milestone.

Of course, during my pregnancy I needed a little more rest, and when Deirdre was up at night, all bets were off as to exactly how long I would nap. But despite those particularly instances, I was pretty darn consistent (and happy) with an hour and a half. Until now. Since Christmas, I've been taking longer and longer afternoon naps, and 4 (if not 5) days out 7, my nap has been closer to (if not longer than) 2 hours. Of course, I could fight it. I could convince myself that I only need an hour and a half, that that 30 minutes is my time, not lupus' time. But my body is telling me that I need more rest. And if it does, well, it does. Here's how this should go (and I say "should" because it's going to take a little discipline): everyday, I'll allow 2 hours for a nap. If I sleep the entire time, so be it. If I wake up after an hour and 45 minutes...sweet! I'll make sure I'm rested, and if so, I'll hop out of bed and enjoy an extra 15 minutes of my day. But refusing to give in to the signals my body is sending me would be silly. In fact, it would be stupid.

I want to be able to take care of Deirdre, and keep play dates, and appointments, and evenings out. I want to keep feeling good and have months between doctor's appointments. I want to keep traveling to talk about my book. I want to expand our family one day. I'm not going to be able to do any of those things if I'm sick. And if a 2-hour nap prevents that from happening, then sign me up.

Monday, February 1, 2010

Little known facts are meant to be shared

While I was very lucky to have been diagnosed with lupus within a few weeks of the initial onset of symptoms (swollen glands, fever, chest pain, achy joints), I know the odds are not in favor of a quick and early detection of a disease like lupus. It often takes people months, if not years, to finally reach a diagnosis, and that's not because they haven't tried. For various reasons, lupus is a tricky one to diagnose. The more common lupus symptoms, when considered individually, can indicate a range of illnesses, many of which are of little consequence, and, thus, are often dismissed by patients and/or doctors alike. It takes a concerted effort by both parties to connect the dots and determine if lupus is, in fact, the culprit. Lists, background information, and other little known facts about a patient's medical history are paramount to helping doctors piece together the puzzle of a chronic illness.
***

Because my symptoms came on so strong and fierce 9 years ago, my doctors had very little difficulty figuring out what I had. I had a very proactive pulmonologist and a spot-on rheumatologist, both of whom were determined not to let me leave their offices until I had a reason for my pain and suffering. It was a patient's dream to have such attentive doctors...but in thinking back, I realize that I did my part to contribute to the discovery of my disease, primarily because I was able to offer the following information from my past that, up until that point, I thought was irrelevant:

***

1) I had experienced an episode of gout about two years before. It was very random (and very painful), and I was treated by a podiatrist because it my foot that had swollen up to three times its size. By no means is gout an indicator of lupus, but it was valuable information for my doctors to consider when exploring past instances with pain, swelling, and other arthritic like symptoms.

***

2) I had been complaining about joint pain in my knuckles during a recent hobby I'd taken up - pottery. Don't get me wrong, I wasn't going anywhere fast throwing pots on the wheel...but I did enjoy it. Johnny and my sister (and my grandmother, up until her death) still display my works of, ahem, art, and I'm proud of my little creations. But, by the end of my second 6-week session, I was experiencing a throbbing pain in my middle finger when I pulled up on the clay to form a pot. It really hurt, but because the pain would go away immediately when I stopped doing the motion described above, I didn't give much thought to it. I joking told Johnny that maybe I had some form of arthritis, but we both laughed that notion right out the door. We assumed my fingers were just unaccustomed to the repetitive-type motion I'd introduced.

***

3) If you remember, I was diagnosed just 6 weeks after my wedding. And for about 6 weeks BEFORE my wedding, I experienced an annoying ache in my knees and hips. Being a victim of fashion, I had taken to wearing tight, high-heeled boots during that time, and had attributed the pain to the contortions my feet and legs had to make to wear those knee high monsters. Looking back, I'm sure that pain was a precursor to lupus, but when I wore those boots into a doctor's appointment one day, my rheumatologist took one look at my outfit and declared, "That pain in your knees? It's from the boots." Hmmm. I think he was just jealous of my fashion statement.

***

4) During that 6 week period before my wedding, I could not, for the life of me, get out of bed before about 9am. I was never an early riser, but I was just dog tired every morning, and didn't know why. Again, I mistakenly attributed it to my wedding planning, the stress and late nights tying up loose ends. Although my work day officially started at 9am, my supervisor was extremely accommodating, allowing me flexibility to come in an hour later when needed. I told him I was sure once the wedding mayhem was over, I'd be more rested.

***

All of these little tidbits, when taken individually, had pretty logical explanations. But when brought to my doctor's attention, and thought to be indicators of one primary issue, the picture started to become very clear. My doctors knew what I had...but the info I provided made them sure they were on the right track, and made diagnosis, and more importantly, treatment come that much faster.

***
So get out those lists, take in those binders, and print out those chronic control spreadsheets. If you have a couple of little known facts to share - share them. Your doctor can't guess what's been going since he saw you last, so be sure to fill him in!