Medical Spin-The-Bottle

One of the funny (funny weird, not funny ha-ha) things about lupus is that the individual symptoms could be absolutely anything.  Come on-- who gets a mouth full of canker sores and gasps, "Ohmigosh!  I might have lupus!"?   That's just not how this stupid disease works.  It doesn't like to be flashy and unique.  It wants to fit in with the rest of the disease crowd. 

So, because of that, one's symptoms are extremely vague and could be anything to your doctor, too.  It's only when you sort of smash everything together does a lupus diagnosis start to make more sense. 

So, just for funsies, here's a list of everything I've been told might be the source of my sufferings.   It's a pretty interesting list, for a lot of reasons, but mostly because it's frickin' long. Enjoy! 

From 2001 to 2010, I’ve been told I might have or have been tested for the following:

Severe allergies
Behcet’s Disease
Cancer
Carpal tunnel syndrome
Celiac Disease
Chronic sinusitis
Crohn’s Disease
Depression
Diverticulitis
Endometriosis
Fibromyalgia
Folliculitis
Heart attack
HIV
Irritable Bowel Syndrome
Lyme Disease
MS
Ovarian cysts
Pericarditis
A platelet disorder
Rheumatoid Arthritis (w/ intestinal involvement)
Ringworm
Syphilis
Thrush/candidasis

Oh, my, this is a lot of junk.  This is the reason I stopped believing anything my doctor told me sometime in 2007.   How long is your spin-the-bottle list? 

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...

My Reconstructed Medical History, Part 2

So, here's my history as best as I can remember from 2006-present:  
2006:  

Pretty good year.  Sinus problems get considerably better with move to Knoxville.  Occasional joint pain, usually in wrists/backs of hands, etc.  REALLY BAD IBS issues that summer when I visit Knoxville before moving.  I think this is the same year I had a throw-up binge just before flying home from Christmas, probably from too much fatty foods over break.  Oh, bleh. 

I think I had more bruising but decided to ignore it.  

2007:

In Feb., my left eyelid swells shut.  Goes away over the weekend before I can show the doctor.  It happens again (on the other eyelid), I think near the end of the same year.

Hand numbness back.  Dr. M. sends me for a nerve conductivity study, which shows up nothing.  Neurologist is pretty cool though, and she shows me some ways to alleviate symptoms.

IBS and sinus problems, sure, but they're more than manageable.  

I think this was the year of my second lupus screening.  Everything comes back negative.


2008:

In March, I try to do a 5.5 mile hike one way and just about die.  (Well, I felt like I was.) Every time my heart rate got up a certain level, I'd get all weak and the world would black out.  I was a little pile of jelly by mile three, and I made it to the top on sheer willpower, frequent breaks, and getting dragged up to the top.  It was during Spring Break and I was in denial, so I did not tell my doctor, and I did not get an EKG.  In all actuality, this was probably a second bout of pericarditis but I'll be damned if I was going to admit it. 

Some light numbness in hands when the weather warms, but it's gone in a couple of weeks.  Joint pain and sinus problems, but all manageable.  I miss at least two days of work in the Writing Center a semester because I have throw-up fits. 

I have another bad batch of random bruises, this time on my face.  Happens twice this year, I think, once early on and once a week after finals are over.

Dr. M. does a second round of lupus screening since I've lived in Appalachia in December, I resent/protest considerably; these come back negative.   I start to get really resentful of the "maybe it's lupus" response to my symptoms. 

2009: 

I start missing a lot of church because I feel to0 wiped by the time the weekend rolls around to get out of bed.  Start falling into a bad nap routine, can't sleep at night, only want to sleep in the day.

I start having throw-up fits, severe pain in my side when eating, unending abdominal pain.  Ultrasound shows nothing, but I have an abnormal liver screen and a very bad hida scan showing a non-functioning gall bladder (this is a hereditary problem in my family, though).  They take my gall bladder out, eventually, in the summer, and suddenly food is no longer disgusting.  Even though I can eat again, I keep losing weight like nobody's business.  

I lose at least twenty-five pounds between about February to October, going from just under 160 to 132.  I go from a size ten to a size two in pants. 

Lots and lots and lots of canker sores.  I lose count of the number of breakouts and it's hard not to drool when I eat. 

I get severe stomach pain, cramping, nausea, and loss of appetite following the surgery.  Abdominal scan, CT, endocscopy and colonoscopy, etc. all turn up normal even though I can't stand up straight.  Eventually goes away on its own.

Random bruises break out again in the fall, big ones, which I try unsuccessfully to cover up with makeup and just end up looking like an abuse victim. 

My sister, a nurse, swears up and down that I had a pull in my left eye over Christmas. That's the second neurological problem I've had with my sight. 

2010:

All hell breaks loose again:

• It starts with an unbelievably bad breakout of canker sores throughout my mouth.  It lasts I think up to two months.  Even talking is difficult, and don't even ask about brushing my teeth. 
• Big bruises on my chin and shoulder.  
• In Jan/Feb, my scalp and the soles of my feet itch so bad I want to take a veggie peeler to them.  I treat my feet for athlete's foot for weeks even though there's no signs of infection.  
• In Feb., the absolute WORST bladder infection I have ever had, coinciding with the worst yeast infection I think I've had.  I go to the emergency room on a Saturday night because I'm peeing urine the color of a Bloody Mary.  First time they detected protein and cells in my urine, naturally.  
• The Macrobid they give me doesn't do the job, so two weeks later I'm back at Student health with severe bladder/kidney infection symptoms.  They give me the nasty stuff (Cipro) and that does the trick.  
• I notice swelling in the backs of my hands for the first time.  
• I keep having bladder/kidney/vaginal discomfort for a couple of weeks after that.  I have to get treatment for the yeast infection twice, too.  
• I turn in my field exam on March 1st, wake up to find I'm covered in a bumpy red rash on my head and neck.  Spreads to most of my trunk by the next afternoon.  Diagnosed with folliculitis. 
• In April, the weather warms back up and I can't feel my fingers again.  Only this time it's a lot worse:
  --Fingers and toes, both hands, and it never goes away.  
  -- Nerve pain in hands, feet, forearms, shoulders, and (eventually) back and neck
  --I get very, very clumsy, drop things, trip over my own feet...
  --I feel pretty depressed and sluggish, can't read, can't study, no motivation...
  --My face starts to go numb once the neck symptoms start up, speaking gets interesting...
  --I'm sleeping all the time...
  --and I can see/feel actual inflammation in my elbows.  The little knob on my inside elbow goes away completely, and the joint feels warm. 
• When driving on a road trip, my hands go completely numb and cold.  I see Raynaud's phenomenon in my right hand for the first time, but only for about ten minutes.  The next week I go back in for a consult with my doctor at Student Health, and I get my fourth round of lupus screening including a syphilis screen.  These are all negative except for the ANA, which is a clear positive for the first time. 

My Reconstructed Medical History, Part 1

Okay, so here's the best I can figure for most of my medical history,  starting in 2001 and ending in 2005.  As I look at this, I'm starting to realize a few things.  First of all, I really need to start this list before my marriage in June of 2001 because there's a slight chance that's when my symptoms really began.  Secondly...  in the last nine years, I don't think I've managed to go six months without getting sick. 

In short, that really sucks, and I find myself getting a little pissed at my health a little ex post facto.  So, without further ado, here's what my medical CV looks like, as best as I can reconstruct it, for the years 2001-2005: 

2001: 

Feb-April?:  I break out in a rash down my entire trunk and up my whole face in little red pinpricks.  It breaks out so fast and so suddenly that the ER guys give me an Epi-pen shot.  (I'm allergic to bees, so they were afraid I'd been stung and didn't know it.)   I spend the rest of the night feeling like  a superhero from the adrenaline rush and spend the rest of the night jumping off walls, climbing trees, and generally making a nuisance of myself.  That's when I realized why people take drugs, man. 

April:  Extremely bad respiratory infection.  I lose my voice for a couple of weeks. 

August:  The second-worst bladder infection I've ever had.   Random doctor in an ER in Nebraska blames it on Honeymoon Curse (even though I'd been married two and a half months already). 
              Start of IBS symptoms.
              Severe respiratory problems around Thanksgiving and when I return home for Christmas.

Actually, there's a funny story behind that.  I went to the ER to get checked out the day after Christmas, and when the doctor looked in my ear he said "Holy Shit!" at all the fluid buildup behind my eardrum. No wonder I thought everything sounded like I was in a fish tank... 

 2002:  (I think)

Get screened for gall bladder problems.  Inflamed bowel shows up on an ultrasound instead, so I start getting treatment for IBS.  A couple of ear infections, if I remember right. 

This might also be the year I start having actual allergies for the first time in my life.  If so, I got tested for allergies before being put on Claritin.  The test showed no specific allergies, but a clear histamine response to something.  The Claritin eventually stops working. 

2003:

So far, I can't remember anything severe or specific.  I think this might have been the year I had the sore in my cheek that got infected, along with a couple of ear infections.  Respiratory infections when I return home for Christmas.

I had a bad case of something that looked like ringworm on one forearm.  Eventually faded away with treatment.  

Random fits of dry heaves every thirty minutes for six hours or so.  This might be early indications of gall bladder problems, though. 

2004:

All hell breaks loose.  I max out the catastrophic cap on my insurance. 

• I had six cases of sinus infection between August of 03 and August of 04.  The last two fail to respond to treatment, and I'm sent first to an ENT specialist, who throws his hands up in the air and sends me to a neurologist.  The neurologist orders an MRI which turns up, surprise, sinusitis. ENT was fairly unconcerned.  The neurologist was extremely alarmed and sent me to a rheumatologist.
• Debilitatingly bad headaches that would knock me out for days.  The worst one felt like a migraine and lasted for two and a half weeks.  The only thing that made it stop was Imitrex. 
• Pericarditis in (I think) June.  I pass out in two successive belt tests at Karate, and an EKG and X-ray confirm an inflamed pericardium.  I get put on aspirin treatment for a month, and it subsides. 
• Numbness starts in my fingers, palm and backs of hands, making it hard to type on my MA thesis.  Elbows sore and hurt a lot.  My GP was incredulous because I had "confusion of symptoms"-- meaning that I had numbness that indicated problems in both the wrist and the elbow, and everybody knows it can't happen in both places, right?! 
• Excruciating pain in joints.  Every joint in my extremities hurts at some point, usually in pairs.  Most often, it hurt in my knees and elbows, but also in shoulders, back and hips.  I get a lecture on "proper sleep hygiene" from a GP who decides I have fibromyalgia, primarily because I'm a woman and (I think) he doesn't like me too much. 
• Bouts of canker sores make it hard to play my horn.  
• I get sent to a rheumatologist, who yawns, glares at me the whole time, and decides I'm a freaking hypocondriac.  He orders a muscle inflammation test, and it's negative.  Decides I don't need followup, and I seriously consider not paying my bill because he's such a jerk. 
• In December, I notice that my vision is really blurry when I drive home from my finals.  I decide it must be eye strain, and I sleep it off.  Meaning, copious napping, for weeks.  All I want to do is sleep.

2005:  

More numb hands in the spring, more throwing up, more severe allergy problems.  Most of my other symptoms get better after I've been on Elavil to help me sleep for a few months.  Joint pain gets pretty darn manageable, if I remember correctly.

My GP decides to treat me like I have fibromyalgia, but at some point during all of this I have my very first auto-immune check, a sed rate/ANA run, as well as an HIV test and a rheumatoid arthritis test.  All negative, and my urine/liver functions are clear.

I think this is the first year the bruises start showing up.  The first one is on the back of my shoulder blade and looks, well, bizarre, like a little barred spiral galaxy with two tongues, the color of a hickey.  Then a couple others on my jawline and neck, and then a HUGE spidery looking thing that took up most of my left shoulder.  My GP pokes at it, nonplussed, and wonders if it's from all the ibuprofen I've been on for my joint pain. 

Aaaah, memories...

Well.  I've been spending the last day or two racking my brains trying to figure out what symptoms I've had when, and I'm having a harder time of doing it than I thought.  I'm having issues because of a few major problems:

1)  I lived in Charleston, SC for five years.  In that time I divided my doctor time between Student Health, a walk-in clinic supported by my husband's insurance, and a third GP when there was finally an opening for new patients shortly before I moved.  In addition I have visits to a neurologist, ENT physician, rheumatologist, etc., and I can't remember their names to request records, and the walk-in place has since moved.

2)  I'm discovering that, once you have a buttload of medical problems, they all sort of start to run together.  I've had sinus problems so long that, to be honest, I'm having trouble remembering a time when I didn't have a face full of snot and my teeth didn't feel like they were going to explode. 

3)  Denial.  I didn't go to the doctor at all for a lot of things because I didn't want to hear the same responses again and again:

"Do you partake in recreational drug use at all?"
"You haven't been feeling depressed, have you?"
"Any chance you're pregnant?" 
"Have you been tested for HIV?"
"Perhaps you have fibromyalgia and there's nothing we can do about it."
"It's just allergies." 
"You don't partake in any recreational drug use, do you?"  

 Some doctors are really unimaginative, I must say.  There got to be a point that I got so sick of the incredulous looks from skeptical doctors that I just put up with a lot of symptoms and self-medicated. 

On the flip side of things, however, I've had to take several long, circuitous trips down memory lane to try and figure out what happened when.  For instance, I remember that I found out that I had pericarditis when I passed out in two successive belt tests for my karate class, so I've been digging through memento boxes trying to find my husband's certificates for his orange belt.  Looking through the mementos has been rather fun, I have to admit.  I was also teaching summer VBS when that happened, so I've been on the VBS publisher's website trying to figure out what theme they taught when.  (Lava Lava Island?  "Where Jesus' Love Flows?"  Seriously? *Giggle*...)

Other things are harder to reconstruct.  I have pictures for some events, like the hiking trip I passed out on, or incidental pictures that remind me of other things (Oh yeah, I was wearing long sleeves because of the weird bruise on my shoulder!  Stuff like that.)   

So, having dug through the archives, I'm making some discoveries.  For one, most of my adult life, it seems, is tied up in the history of my illness.  I can't find an easy dividing line between my marriage and my health problems.  When I pointed this out to my husband, he said, "Oh.  So I guess I'm the one making you sick."  Then he grinned wickedly.

For another, the list I'm putting together makes me look a lot sicker than I think I realize I've been.  I'm starting to realize how much I've had to push through, put aside, compromise, or cut short things because of what has seemed like minor illness.  And that realization, I have to admit, really frustrates me.

So, if there's a moral to this story, it's this:  WRITE DOWN EVERYTHING.  And get copies of your medical records.  Otherwise, you're going to have to get all Proustian with yourself trying to figure out just how sick you really are.