My New Disease Buddy

So, a funny thing happened a couple of weeks ago i-- I got myself an AD buddy.  Someonme had mentioned to me that there was someone else in the department with health problems, but I never made the connection because I didn't know who she was.  Anyhow, at the graduate student meeting we're all required to go to before classes started, the grad director asked if we had any questions.  I raised my hand and started asking a few pointed questions about the new policy. 

You see, my university switched from UHC to Aetna back on August 1st, and in the transition we don't have any information on our policies.  In fact, I am STILL without an insurance card and it's been about a month.  At the time, we didn't even have a group policy number for insurance purposes, and  I was getting antsy.  So I started trying to get some answers from our grad director, which is usually a mistake anyway, but anyhow...

"So, I was wondering if we have a university-wide group policy number yet," I asked in the meeting, "because I think I can still at least get my prescriptions with that even if we don't have insurance cards yet.  Has anybody heard anything on that yet?"  My grad director stammered a little. 

"Well, no..." he answered.  "I'm not sure..."  A woman behind me and to my right perked up at the question. 

"What are we supposed to do in the meantime?"  I asked as patiently as I could. 

"If you keep your reciepts you can get refunded as soon as the policy gets finalized..." he offered. 

"But my rheumatology appointments are 375 bucks a visit," I said.  "I'll have to just wait.  Do you know how much longer I'll need to?"  The dark-haired woman behind me raised her hand and started answering all my questions, as she had just grilled the insurance rep the day before and found out as much as she could.  After she filled in the entire grad student body on the state of the insurance debacle, she mouthed come talk to me.  We met up in the hallway.  It was "Mary Beth," a grad student who started the year before me. 

"You're seeing a rheumatologist," she said matter-of-factly.  "What's going on?"  So I told her about what was going on for the last year or so, and that's when she told me that she probably had rheumatoid arthritis or lupus, her doctor (Dr. W as it turns out!) wasn't sure which.  And she was on anti-malarials and a few other things right now, and she couldn't get some of her prescriptions filled during the insurance fiasco. 

So, "Mary Beth" is a bit of a pro at all this now-- her sister has RA, and she's been dealing with much more severe symptoms for a couple of years now.  She knows the ropes with my rheumatologist.  She knows the insurance hierarchy at my college better than they know themselves.  And she's developed some good plans for balancing work around her health.  She says she's nearly normal now, and is even back to hiking, which for RA is  a heck of an improvement. 

We had a little weird bonding moment in the hallway when we both found out we were having problems with Raynaud's disease.  "I call it dead-man fingers," she joked.

"My name for it is 'zombie fingers,' I confessed, and we both laughed.  We also both found out we're being treated by Dr. H, which was funny, and we both talked about how cool she is.  So "Mary Beth" and I are going to get together sometime and have a chat. 

I wouldn't wish this crap on my worst enemy.  But I'm so damn glad that I now have someone to talk to who actually gets it.  I didn't realize how much I needed that. 

Getting Closer...

Well, it's about time.  I officially have my appointment with a rheumatologist for the fifteenth of this month, and I'm getting nervous.  This will probably be my first real step down the road of getting diagnosed for sure.  My doctor sent my chart via fax machine last week.  If you've seen my medical chart, that's a frickin' feat.  It's so thick now after four years that it won't even fit in the little chart holder next to the waiting room door anymore, and it's heavy enough you can use it as a door stop.  

The last time I saw my doctor, she used the term "pre-lupus symptomatic" to describe what's going on with me.  Ick.  I meet with her tomorrow to see if there are any other tests she wants to run before the big day, and to check on how well the Mobic is handling my swelling.  Honestly?  That's doing okay.  Now that I've been on it for 3 weeks, it takes care of most, but not all, of the swelling.  It's keeping me functional, at least.  So hooray for Mobic. 

So, the proverbial diagnosis clock is finally ticking.  And what's this dubious honor going to run?  Their standard office visit is $375.  Yeowch!  With my copay, I'll only be forking over $150.  That sill represents a little over 10% of my take-home pay as a grad student, but hey-- at least I'm not footing the whole bill.  Wish me luck!

Life is Swell

Ten days ago, I came back from a weekend of watching roller derby to realize that I couldn’t see my Achilles tendon in the back of my ankles.  Instead, my ankle was a smooth plain of shiny skin from the back of my foot to my ankle bone.  Two days later, my ankle was the diameter of an orange and it really hurt to walk.  I poked my finger into the swelling, and my pinky sunk in about a quarter of an inch into the rubbery flesh.  My elbows hurt too much to even carry a grocery sack in the crook of my arm.

Since then, I’ve been trying to use NSAIDs to take care of the pain and swelling I’m experiencing, and with very limited success.  I had already been on ibuprofen for a couple of weeks before that, but for some reason it’s stopped working.  The fabulous Dr. H has therefore put me on Mobic to see how well it keeps down the inflammation.  I’m out of town for three weeks visiting family, however, so changing prescriptions and whatnot will be a pain if this doesn’t really work. 

On the whole, it’s slightly better than the ibuprofen.  The swelling had been a lot better for the last few days, but today my forearms are all achy and my ankles are puffed out like a marshmallow again.  It’s still not as bad as before I started the Mobic… but it’s not great, either.  I have to give this a couple more weeks to see how I do before I can pronounce judgment. 

But this whole swollen joints thing bothers me a lot, and I there’s a couple of reasons why it does so.  First of all, it’s the first hallmark, visible symptom of lupus I’ve had.   Sure, I’ve had the joint pain and numbness before, and I’ve had pericarditis, but it’s not like other people could actually see that.  My puffy ankles are pretty obvious if I wear sandals (so I haven’t been,)  and with everything else going on the ankles might be enough to clue them in.  Secondly, this just feels like it’s putting the final few nails in the lupus coffin and now I can’t escape.  After all, everybody likes to think that maybe, just maybe they’ll escape such a lousy diagnosis, right?   I’m really no different, and my puffy joints are a symptom that I can’t ignore and pretend that everything’s okay.   Stop stealing my denial, dammit. 

Secondly, it’s seriously cutting into my personal life.  Right now, my ankle is too stiff to do anything except slow walking, and it’s really hard not to walk with a limp. The worst part, however, is the body blahs that come with the joint aches.  It’s like I’m perpetually about to come down with the flu, but it never gets here.  I get tired really easily and, just like a kindergartner, I require an afternoon nap to remain functional.  I can ignore just the joint pain, and I can push through the IBS and sinus problems.  But I can’t just magically make myself perky, it’s hard to pretend to walk normal on a swollen ankle, and my mother is taking notice. 

So, for the moment, all I can say about Mobic is that it makes life pretty swell.  I just wish it was all swelling a lot less.

Diagnosis Disasters, or The Medical Bed of Procrustes

When I was in college, I was entirely dependent upon the Student Health Service at my college in Laramie for health care, which for the most part was pretty decent.  There was only one problem, however: they saw so many students for the same things over and over again that we all started blurring into the same diagnosis.    Every time I went in to see one of the university doctors for something, I always got asked the same questions over and over again, fishing for the same diagnosis:

"You don't partake in any recreational drug use, do you?"
"Um," *hack hack,*" I'm here for bronchitis."  

"Any chance you're depressed, honey?  Under a lot of stress?"
"I fell off my bike and hit my head.  What-- is that a weird cry for help or something?"

"Is there any chance you might be pregnant or have an STD?"
"For crying out loud, I sprained my freakin' ankle!  My foot is swollen, not pregnant!" 

You might laugh at that last one, but all three of these actually happened between my freshman and junior year at my undergraduate institution.  I tripped down the stairs of the Fine Arts building and sprained the hell out of my ankle, and that was the first question they asked me after I told them why I was there.  I stopped being an individual patient, but a student instead, and the only reasons female coeds ever went to Student Health apparently were for addiction, depression, pregnancy, or gonorrhea.  I often wondered what they asked the men since they obviously couldn't be pregnant. 

As it turns out, that's a human problem, not just a bad doctor problem.  It's just a part of the human condition that we don't like loose ends, so we try to find answers or resolutions to problems that fit the patterns we're used to.  Depending on who we are or how we read the patterns, we're going to find the answer that makes the most sense to us-- not necessarily the one that fits the data the best.  Everybody does this some time or another, but it's especially bad if it's the doctors doing it.

For instance, when I first started having IBS symptoms back in 2001-2002, I had to go to the emergency room for severe abdominal pain.  I sat in the emergency room for over two hours before a bleary-eyed doctor moseyed into the room, noticed my age and gender, and declared that I had an ovarian cyst so I might as well go home.  He left in under a minute.  The bastard didn't even look at my chart or even touch my abdomen to see where the pain was.  Two days later I went to Student Health and an X-ray discovered that I had some inflamed bowel and some serious backlog, and after a dose of Fleet's and a traumatizing couple of hours in the bathroom I was cured. 

When my symptoms first started getting really bad, around 2003-2004, my main problems were allergies and IBS.  When I started having joint pain on top of that, after some serious head-scratching they declared that I must have fibromyalgia.  Why?  Because

(IBS + sinus pain + joint pain) ÷ woman = fibromyalgia

I absolutely hate that diagnosis because it's the equivalent of a medical trashcan.  It's like admitting defeat: we don't have any idea what all these random symptoms are, so we're going to brand you with fibromyalgia.  Let's just throw this diagnosis on the wall like a proverbial handful of crap and see if it sticks, and that's stupid.  And it's a denigration of all those women out there who actually have fibromyalgia because it makes it so hard to trust a doctor when he says you really do have it, and because it's become their favorite diagnosis for hypochondriacs.  Those two words-- fibromyalgia and hysterical-- become synonymous.  When a woman walks into a clinic and tells her doctor she has fibromyalgia, then some start to doubt their sincerity. 

And yet, I just accepted it at first, and I find two things weird about this.  First of all, it didn't explain all my symptoms, and I knew that.  It didn't explain why I got infections at the drop of a hat or had bouts of extreme insomnia or canker sores.  And secondly, once we had the term for "it" (the whatever-it-was that was making me so sick) it amazed me at how fast that became branded to me. 

So, for three or four years I ran around as a person who had fibromyalgia, and I hated how hard that brand was to shake.  For one, when I went to my rheumatologist for the first time to get my symptoms checked out, he wasn't too impressed.  The best I can tell is because for him, the formula went

woman × ("fibromyalgia" + symptoms I can't test for) = hysterical

and he therefore treated me like I was faking it.  He didn't quite say so  much to me in the examining room, but every time he talked about my "symptoms" he'd cough a little incredulously and raise one eyebrow.  Then he asked some really offensive questions about my "pain history" that made it pretty clear he thought I was making it all up, summing it up with, "well, this is pretty hard for me to swallow, really," or something like that, and an incredulous scoff.  Then he ordered one blood test and declared he didn't need to see me again.  And, here's the funny thing:  at the time, I had already had one bout of pericarditis, inflamed bowel showing up on an ultrasound, and canker sores on top of everything else.  But, I have to wonder how much that fibromyalgia tag said "hypochondriac" to him and he didn't want to take me seriously.  You'd think an effing rheumatologist would have been able to put all that together and suspect an autoimmune condition. 

That misdiagnosis cost me a lot of time, pain and frustration in the years that followed.  For instance, I started asking them, "look, I have inflammation in my joints.  Fibromyalgia doesn't do that, right?"  And when they couldn't find any evidence of swelling (all they had was my word that my joints felt puffy) they dismissed it.  Why?  Because I had fibromyalgia, and it doesn't cause inflammation.  When my hands started going numb-- I mean really numb-- the following spring, my GP didn't know quite what to do with it because "fibromyalgia doesn't cause numbness in the hands."  So, he poked about on my fingers a bit to see if he could find the issue.

"I also don't feel like my arms fit at my sides, " I told him.  "I think I have swelling from my armpits to my elbows." 
"Which fingers go numb the most?"  He asked me, ignoring what I had just said. 
"My last two, mostly, and then sometimes my thumb and palm,"  I told him.  He frowned. 
"Carpal tunnel wouldn't cause your pinky finger to go numb," he declared.  "That would mean the problem is in your elbow." 
"Um, why would it be carpal tunnel?"  I asked. 
"Well, because you're a student and you type all the time..." 
"It's not related to everything else?!"  I asked incredulously.  He shook his head. 
"Fibromyalgia wouldn't cause numbness in the hands," he declared.  Then he decided that I had a "confusion of symptoms" (as if I couldn't decide which symptoms I had) and figured that it wasn't important until I got my story straight.  The possibility of swelling in my elbows and wrists never occurred to him, even though I told him it was there. 

So, here was another story that didn't seem to fit:

numb hands + student = carpal tunnel syndrome
because 
numb hands ≠ fibromyalgia

But the key, that swelling in my armpits and elbows, would go un-commented upon for another five years.   The next time I had numbness in my hands, it showed up in my feet as well-- tingling, and pins and needles down the inside the arch of my foot, and a loss of sensation.  I became really clumsy, and my arms didn't feel right again.  My school doctor, Dr. M., was sympathetic, and he even sent me for a nerve conductivity study.  But by the time the neurologist was able to work me in, it had already gone away.  And, obviously, nothing showed up on the study, which she only did on one arm.  She and I discussed what the numbness could be.

"It's not carpal tunnel, because there's no sign of nerve compression," she said sensibly.  "You might just have a very tight channel in your elbows and you're putting strain on the nerve when you sleep..."
"But what about the numbness in my feet?" I insisted.  "I don't sleep with my legs tucked under me like a chicken."
"If you have numbness in the feet, why didn't your doctor order a test on your leg?"  She answered back.
"Beats the hell out of me," I answered.  She gave me a very askance look, as if she wasn't sure if I was lying, but she told me to try sleeping in elbow braces to help with my hands-- and never once mentioned my feet.  

 That went on for quite awhile whenever the numbness returned.  When they suggested arm or carpal tunnel problems, I'd ask, a little bitchily, "but what the hell does that have to do with my feet going numb?"  And they'd just give me funny looks and never answer.    And in the meantime, autoimmune diseases were discussed briefly, as a side note, but not taken too seriously as long as I had that negative ANA as insurance.

The thing that changed everything was when I had a bruise the size of a walnut pop up on my face because it was a symptom that my new doctor, Dr. H., couldn't ignore.  And when she suggested that perhaps I had bumped my chin and didn't remember it, my frustration hit the roof and I snipped back at her with tears in my eyes,  "But this has happened before, dammit!"   And she stopped, and realization set in, and we discussed seriously, for the first time, that perhaps my medical history and the presence of lupus in my heredity pointed towards an autoimmune disorder.  And she's chased down every lead, no matter how unlikely, to whittle down the possibilities and refused to settle on a half-right diagnosis.  All because I walked into her office looking like an abuse victim.  And she is the reason that I kept running an ANA on my blood every eighteen months, even when I was sick of it, and I discovered I had my first positive ANA a couple of weeks ago.  

When the numbness returned this time and I told her my arms felt funny, this time she actually felt my joints (the only doctor to actually do that in five years), and she frowned.  "Your joints feel warm to me,"  she said.  "There's inflammation here."  And she poked the inside of my arm just behind my elbow, and wouldn't you know it-- my fingers went numb.

So in all this time, was there anybody who tried to figure out what was really going on before Dr. H. got moving in the right direction?  Yes-- my neurologist.  Two weeks before that disastrous appointment with the rheumatologist, I was shuffled off to a neurologist because I had debilitatingly bad facial pain which my ENT had no clue what to do with.  He listened carefully to all my symptoms, checked me extra-carefully for neurological symptoms and said, "to be honest, this isn't a problem for a neurologist.  This sounds like an inflammatory disorder."  But when enough symptoms didn't present themselves to make a good diagnosis, he sensibly refused to give me one.  At the time it bugged the hell out of me, but that, it turns out was the right answer.

So, what have I learned about all this?

1. Sometimes doctors feel hard pressed to give a diagnosis even when they're totally stumped.  Especially when they're stumped.  
2.  Some doctors diagnose by statistic rather than by the patient standing in front of them.  If your doctor isn't talking to you, personally, and taking account of your symptoms, get suspicious.  Keep dialoguing with them to make sure they're not jumping to conclusions.  
3. Just because s/he's a rheumatologist doesn't mean they're not stupid or not susceptible to problems 1 and 2.  
4. It is quite possible that being a woman will make it much harder to get a decent diagnosis of autoimmune problems.  I can't shake the feeling that at least part of the rush to judgment on fibromyalgia (and hypochondria) was the fact that I was female, and that's been a problem with doctors of both sexes.   
5. The more bitchy and combative you get during an office visit, the more likely it is you'll get labeled a hypochondriac.  
6. On the other hand, sometimes you have to get in their face to insist they take all your symptoms into consideration.   This puts you at risk for number 5, however.  
7. If you have manifestly visible symptoms like a malar rash, bruising, swelling joints, sores in your mouth or other soft spots, Raynaud's phenomenon...  they have to believe you.   Show them anything.  
8. As hard as it is, never feel like you have to have a diagnosis right away.  Because it's more important to have the right diagnosis in the end.   A bad diagnosis (like fibromyalgia) might haunt you. 

And this is the problem with autoimmune disease, isn't it?  It's so damn invisible to scientific scrutiny.  For years, the only manifest, obvious symptom I had was the bruising-- and that wasn't even the most important symptom.  My bout(s) of pericarditis have been the most troubling, but they were so idiosyncratic they were easy to attribute to something else, like exercising with a lung infection.  Since every other test they had run on me came back negative for six years and none of  my other symptoms were visible, it really pushed my doctors' credulity to the limit.

So, that's my diagnosis story up to this point.  It's been a long, excruciating process of trial and error, and I think a lot of it could have been avoided if I had been stable or had the same doctor for several years.  And I had been a man. But if I were a man, how easy would it be for a doctor to dismiss lupus as a possibility since 90% of the sufferers are women?  It bears some thinking...

Medicinal Dodgeball

Guess what?  I don't have lupus!  (Ahem.)

Allow me to rephrase that.

I don't have lupus yet!  

So, I met with the fabulous Dr. H again this morning after waiting, twitchily, in the waiting area for a good forty-five minutes because they were down one doctor.   Then, once they cleared the backlog, she sat down to give me a good chat about my blood work.

As it turns out, the lupus antibody panel wasn't clear, but it wasn't indicative of lupus.  I had a negative test result for my anti-DNA, anti-SM, and all those other proteins that start to sound like antimatter and physics to me, and the other things we checked on (the rheumatoid arthritis and a syphilis test) came back negative, too.

But, as with everything regarding autoimmune testing, there's always one catch: I have an abnormal anti-centromere antibody level.  As far as I can tell, that's the presence of antibodies that attack the centromere, the sticky little protien glob that holds the chromosomes together.

According to my super-accurate and reliable Google search (wink), a positive anti-centromere result usually shows up with people with the two types of scleroderma (which seems pretty freaking unlikely) and Raynaud's disease.  And, as it turns out, I have had dead, white-looking fingers once, so that seems to be the culprit.  But, as we all know, Raynaud's phenomenon also occurs in people with lupus, so I am far from off the hook.  All my tests have confirmed, it seems, is that I am in fact suffering from some symptoms common to lupus, and that's it.

Due to the vagaries of student insurance (my university is re-bidding our insurance) I can't get in to see a rheumatologist until August if I don't want to pay for it out of pocket because there's always a chance a new provider won't cover my doctor.  So, here's to more waiting!

Looking into the Jaws of the Wolf

Well, it's been an interesting year for me.  I'm a PhD candidate in a graduate program in Appalachia where I study Anglo-Saxon literature, and I just had my first big "coming-out" as a serious scholar a couple weeks ago (and my paper was very well received, too).  I passed my field exam in Medieval literature back in March.  I just turned thirty in April, and I just found my first gray hair.  All in all, it's been a pretty momentous year for me.

Oh, and one other thing: I might have lupus.

I just found out about it last Thursday after some routine blood work.   I've been symptomatic since at least 2004 off and on, and if I'm honest, my symptoms might have started just a few months after I was married in 2001, but honeymooning makes you forget a lot of unpleasantries.  I have had problems with numbness in my hands before which lasted a few weeks, but this time it's been going on for about six weeks and it has been getting worse.  So, I swung into my student health center on campus, and the fabulous Dr. H said she wanted to re-run my sed rate/ANA tests one more time, just to be sure.  After six years of this garbage, I realize now that I was getting pretty blase about the whole thing. 

"Sure, why not?"  I quipped.  "I suppose it's about time, anyhow." I gave two vials of blood and popped out like nothing ever happened.  After all, the last three times I'd been tested were negative, and I was sure this batch was going to do the same.

Well... it wasn't.  For the first time since I've been showing symptoms, I had a positive ANA (anti-nuclear antibody) test result.  In layman's terms, my body is producing antibodies that attack cells.  That doesn't mean I have SLE (systemic lupus erythematosus).  But it does mean that I now have a non-zero probability that I have an auto-immune disease.  I may actually have lupus after all.  I now have to take the possibility that I have a life-changing and permanent illness seriously, and I'm about to undergo a long and painstaking (and expensive) process to figure out if my body is trying to kill me. 

Well, shit.  And I thought studying for my field exams was stressful. 

Strangely, my first impulse was to start blogging about it.  (No, that's not true.  My first impulse was to get really, really drunk.)  Blogging was the second impulse.  But I've always been a writer by nature, and so it's natural for me to want to figure this all out by writing about it.

Secondly, I wanted to write this down because I'm realizing how much of a pain in the ass I'm about to have reconstructing my medical history for my rheumatologist.  I've never kept any clear records over the last six years, and now I have to give a medical history to him, upon which a large part of my diagnosis will depend.

Third, I've discovered that whatever the hell this is that makes my fingers go numb, my intestines revolt and my heart to have inflammation episodes also screws with my head.  I'm having trouble remembering things and I need to write them down.

And, finally, I'm hoping this might be useful for others.  I can find a lot of info on the Internet about life with lupus.  It's harder to find anyone who can give a good accounting of what it's like to have to live through the process of being screened for an autoimmune disease.  It may very well turn out that I don't have SLE.  I might have something else entirely.  But my chances of having SLE have just gone from a mere possibility to a statistical probability in a week.  I'm currently going through the panic/sickness/depression of dealing with this, and it would have been nice to know somebody else who's going through this, too, and compare notes.

So, that's my current project.  This blog, I hope, will contribute to my medical well-being by giving me a record of everything I wish I had written down before.  I hope that writing about all this keeps me sane, too.  And, maybe it'll be useful for someone else to stay sane as well.

-- Ann-Marie