Riding the Yo-Yo-Coaster

So, things have not been happy-dapper over the last few weeks, autoimmune disease-speaking.  It all started last August when my IBS suddenly turned into full-on chest pains, fatigue, and difficulty breathing, which I at first thought might be another onset of pericarditis (I talked about that in the last post).  After a few hairy weeks with the fabulous Dr. H, we finally figured out that the chest pain (in the upper right part of my abdomen/chest) was actually an extremely pissed-off stomach.  When she pressed down on my belly button, my hands and feet would shoot in the air from the pain like I was a marionette.  I had gastroenteritis.

It was pretty obvious to both of us that the Mobic was the problem, but she tried a few different things first to see if I could adjust to the drug and keep my stomach lining at the same time.  When a round of acid reducers and Lev-Bid didn't do any good, away went my Mobic, and I had to spend another two weeks on Lev-Bid and Prevacid until my glass stomach healed enough to handle food.  Even as of today I can't take ibuprofen without getting violently ill.

Over the next few weeks, my posture straightened back out from the old lady shuffle I had adopted, and I stopped dropping weight like a rock.  (I lost six pounds during my last two weeks on the Mobic.)  I could eat solid food again, and I could stare at a McDonald's sign without going into dry heaves.  Success!

Well, almost.  The problem was that I didn't have any anti-inflammatories in my system anymore to take care of the swelling.  The first month or so was heavenly: very little swelling, lots of energy, normal sleep functions. It was almost like I was... a grad student!   Then, slowly but surely, the puffiness came back.  In my wrists, it came back with a vengence, turning me into a klutz.  My arms didn't fit at my sides anymore.  My hands went tingly and numb again.

At about the same time, I stopped sleeping.  At all.  There is probably a host of reasons for this-- the fact that my joints hurt, for instance-- but a large one was the fact that my eyelids were cemented to my corneas and my mouth felt like a leather bag.  No amount of eye-lube made a difference.  As the sleeplessness worsened and coming off all my eye-drying medications didn't do squat, we tried fiddling with my Prozac to see if timing or dosage would help.  That turned out to be a complete disaster.  I also have been bouncing between yeast infections and bacterial infections, and I've been on either diflucan, Monistat or Metrogel basically this entire time.  My husband looks so lonely. 

Anyhow: since I couldn't take NSAIDs any longer, the fabulous Dr. H tried me out on a different class called COX-2 inhibitors, to see if I could tolerate them any better than the Mobic.  She gave me a prescription for Celebrex with the instructions to go back on the tummy pills when I took it, just to see if I tolerated it at all.  After the first day of incredible indigestion, things settled out and it looked like I could finally take the puff out of my physique.

Well, until day two.  That night I felt a little itchy around the hands and feet (not all that unusual, really), but by the next afternoon I was positively digging at my palms.  As I sat in a meeting with my graduate director getting read the riot act (a story I'll save for later,)  I dug at my palms until my right wrist started bleeding.  He looked at me like I was nuts.

"Um," I said, "Sorry.  I think I'm having an allergic reaction to Celebrex."  And I shuffled out of his office scratching my palms. 

And so, after an emergency visit to the fabulous Dr. H, off I came from the Celebrex to see if it was an allergic reaction, and the puffiness, flu-like symptoms, and aching continued unabated.   Trying to get all this medication sorted out makes me feel like a rubber paddle-ball.  Do I stay on the NSAIDS or not?  Which kind?  How much Prozac is enough?  When do I take it?  Is my Allegra and Lev-Bid drying my eyes out so badly that I can't sleep?  What do I do if I come off of them?  Which is better-- having a splitting sinus headache and aching joints or feeling like I'm going to hurl when I take ibuprofen?

Somebody stop this ride, I wanna get off...

---

UPDATE:  Well, we figured out what the scratching was all about.  No, I am not allergic to Celebrex.  I have scabies.

Normally you have to sleep in the same room as somebody to catch scabies, but according to the fabulous Dr. H., there's been a scabies breakout in two of the dorms, and it's spreading all over campus without direct contact.  As best as we can figure, I caught it off of a kid after I sat down in the same comfy chair in Starbuck's after they left.  

This is so humiliating.  I bathe, dammit.  I have good personal hygeine.  Is that too much to ask of our incoming freshman students as well? 

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. 

How a Bus Driver Diagnosed my Depression

The wisest person back in my hometown in the Rockies isn't on the school board, he isn't mayor, and he's not a millionaire.  His name is "AJ," and he's a bus driver for the school district.  AJ is sort of an odd duck, to be honest-- he's in his seventies, looks a little bit like an Appalachian Santa Claus, and he scrapes by on a minimum wage, more or less, working three jobs.  He moved to my home region from back east about thirty years ago.  It's hard to imagine someone with more life experience and wisdom as AJ, and he has the most amazing intuition.   It's something that has served him well as a protector of children-- he has been the reason that a lot of abusive parents and child molesters are in prison because he can tell when something is wrong, and he's the guy all the kids feel safe enough to talk to when there's trouble at home.  There are troubled kids and troublemakers who won't even talk to their teachers or police officers, but they'll just open up to AJ.  He's proof that you can't judge someone by appearance. 

So, I got to see AJ again a couple of weeks ago when I was back in town.  I was with my father down at the local ice cream joint, where AJ tends to park himself in the evenings.  He has a bad back, so he grabs a picnic bench with a burger and coke, and lets the town come to him to visit.  Back in the day when I was in high school, he was my bus driver for speech and debate; and when I was an undergraduate, AJ and I worked together during the summers, so we have a pretty good relationship.  I plunked myself down at his picnic bench to catch up, and I'm sure my face lit up when I saw him.  He's one of my favorite people.    

Anyway, as we were talking about the local gossip, how his job with the district was going, and how our friends were doing, AJ looks me in the eye and starts going off on a tangent about depression.   "You knew I have problems with chemical depression once in a while, didn't you?"  He asks me, and then he tells me the story of how he was first diagnosed: how all of a sudden he was too tired to even walk in his front door after work, and he was too tired to eat, and it was all he could do to make it to work every morning.  He told me that he went to talk to our local doctor thinking he was anemic or something, and after they chased down all the options, they decided that it was depression.  So, they put him on an antidepressant regimen, and eventually he became his old self again.  "Yep, there's no shame in realizing you have a depression problem," he said with a piercing glance in my direction.  "It's a real medical problem, and one that needs to be treated like a medical problem."  I just bobbed my head and agreed, and it never once occurred to me that he was telling that story for a reason.  I just thought it was a strange place that our conversation had wandered to. 

Well, it seems that, after years of discerning other peoples' problems with that wicked intuition of his, AJ sniffed right down to the heart of mine, too.  When I got back home in Appalachia a week later, I was so tired that literally all I did was sleep.  I slept until I needed to teach class, and then when I got home I slept some more.  At one point I went to cook dinner, and I only got as far as opening a bag of rice before I was so exhausted I couldn't even think.  So I took a nap.

It wasn't a matter of thinking evil, dark thoughts or wanting to hurt myself, or getting all emo and wanting to cry all the time.  It was a matter of being able to function on a normal level.  I felt like somebody had sucked the life out of me with a straw, and I couldn't muster the willpower to even do things I really liked to do.  So, I went to see the fabulous Dr. H to chat.  I had been having chest pains recently, too, so I was wondering if I should get screened for pericarditis again. 

Well, the fabulous Dr. H checked for the normal stuff, the EKG was clean, so there was nothing really wrong with me, physically speaking.  We started to chat about what it might be, and I blurted out, "But, Dr. H, something's wrong, I feel like I can't even walk in my front door without getting exhausted..." and I paused.  Where had I heard that before?  It was AJ, of course, and I thought to myself, oh shit, what if he's right?  I looked at her in exasperation and said, "Okay, so there's no physical cause.  Maybe... maybe I'm depressed."   She gave me a knowing look, and she reminded me about how common depression and mental fatigue are with autoimmune disease, and she sent me upstairs to chat with the psychologist.  And he decided that, yes, I'm probably depressed and need treatment. 

So, that was two weeks ago, and now I find myself on a 20 mg dose of Prozac to see what it'll do for my symptoms, and I'm chatting with a head-shrinker (actually, he's a real nice guy, and also a Dr. H) once a week to see if we can work on getting my daily routine back on the right track.  It's still to early to tell if it's going to take care of all the problems I'm having, but I'm already starting to feel a little more... level.  Like I'm not trying to walk up a hill with a sixty pound pack just getting through the day.  I think that's a pretty good start, really.

I'm still not sleeping very well, but that's a combination of some really severe dry eyes and a cramp in my gut which I've nicknamed "Conan the Obstruction" (I'm having gastroenteritis symptoms, you see, probably from the Mobic.)  But I still feel more capable of surviving through the day than I did three weeks ago.  So I think it's a start, and I think that the Prozac is probably here to stay.  Dr. H and I will talk in about another two weeks to decide if pushing the dosage up to 40 mg is a good idea... but we'll see.  

The important thing, however, is just realizing that I didn't need a shrink to diagnose me.  I needed a friend who's walked the same road.   So, I guess the moral of this story is:  if your bus driver starts talking depression, listen to him.

Lupus Guide for the Perplexed: Eye Problems

Symptom:  Dry Eyes
 
Associated Terms: 
keratoconjunctivitis sicca;
Sjögren’s Syndrome; 
blepharitis; xerostomia;
There's No Crying In Lupus; 
No Tears for You!


Just like other organs, SLE can involve the eyes and the organs associated with the eye as well; the symptoms usually consist of dry, red, and irritated eyes without the associated fun of pot-smoking; dry mouth, without the associated fun of pot-smoking; and conjunctivitis, without the associated fun of... oh, never mind.  You get the point.  Your eyes are baked but the rest of you is not. 

The associated dryness, irritation and lack of tear production can, naturally, cause problems with your eyes.  For one, you might be really, really prone to conjunctivitis, better known as pinkeye.  (Pinkeye-- seriously?  There's nothing quite like your eyes reminding you what it was like being in kindergarten again, right?)  For those who have underlying diseases causing the problems, it can lead to other nasty things.  Like blindness, or damaged eyes. 

Yeah, sometimes it feels like that. 

The underlying causes are different for each person, but trust me it's probably somehow related.  One common manifestation is keratoconjunctivitis sicca, which basically means a "dry inflammation of the surface of the eye." Your eyes feel like they have sand in them.  The surface gets red and dry, and sometimes it just hurts to blink. 

Another common problem is blepharitis, which may sound all naughty and whatnot, but it just means that you have a problem with your eyelids getting irritated and swollen.  You know, like that guy up above.  Not a problem at all. 

And a really, really common problem is xerostomia, which just means cotton-mouth.  If your immune system is bothering your tear glands, there's a good shot it's bothering your other lubricating glands, too.  

This can often times be caused by a various array of irritations, but a really common one is a lack of proper eye lube.  You see, in your face is a little version of the Soup Nazi keeping you from getting your fair share of tears to keep your eyes healthy.  He smacks your fingers with his itty-bitty ladle and screams, no tears for you!  NO!   Some of us also have a Spit Nazi, so we get dry mouth along with it. 

Another possible problem is Sjögren’s syndrome, which is its own little autoimmune hell in a Dixie Cup.  Sometimes it occurs with other autoimmune diseases like lupus or rheumatoid arthritis, but Sjögren’s syndrome can also wreak havoc all by its little lonesome.  5 to 10 percent of lupus sufferers will have this disease, and getting close to half of Sjorgren's sufferers will have something else, too.  Some of the major problems with this disease are white blood cells gunking up and attacking the glands in your face.  Since it overlaps so much with other diseases like SLE, it can be hard to diagnose. 

The upside is that Sjögren’s is uncommon, and the other problems can be treated fairly easily with a few hygiene changes, such as using atrificial, preservative-free tears, eye ointments, cleaning your eyelids, and watching depressing chick-flicks.  (Okay, I made that last one up.)  The Sjögren’s Syndrome website has some great tips on all that if your interested.  

Gray Matters

I hate doctors.  I especially hate specialists.
I hate examination rooms. 
I hate health insurance.  
But mostly, I hate this $*&@#  #&#^@^%  #*%%@ disease. 

Six years, who knows how much money and worry, and I still don't have a f------ diagnosis.  I just so want to hurt somebody.  Preferably my rheumatologist, which is funny, because he made the right call and is a reasonable fellow.  But I still want to punch him because he works in a field of medical study that really pisses me off right now. 

So, I went to see Dr. W yesterday, full of fear, and loathing, and really bad lunch because I had to grab something on the fly.  He listened to my medical history, poked my joints really carefully, and told me to get dressed.  Then he came back in the room, sat down, and said, "Well, I'm afraid you're in the middle of a medical gray area right now--" and I almost immediately burst into tears, not because I was disappointed that I didn't have a disease, but because it meant I couldn't get any kind of treatment.  I am so non-functional right now I can't do shit except sleep and cruise the Internet, and he wants me to keep waiting.  That reaction kind of startled him. 

In any case, here's what I learned:  first of all, my positive ANA ain't worth shit in terms of a diagnosis.  In fact, he said, people will pop positive for one test and then have a negative test later.  People pop positive on an ANA for no reason at all.  And, since my lupus antibody panel was clean, I have to keep getting my ANA run to see if it stays positive.

Second of all, my ANA result could be indicative of CREST syndrome just as much as lupus.  To be honest, CREST syndrome scares me more, maybe because the idea of my lungs and pulmonary arteries turning into concrete sounds, you know, dangerous.  

In the end, all I left with was a suggestion to try melatonin on top of my Elavil to help me get to sleep and DHEA to help with the fatigue.  

So, I went in to a specialist's office with a positive ANA and swollen joints, and I left with a diagnosis of:  dum-dum-dum...  positive ANA and swollen joints.  Welcome to the doldrums of autoimmune diagnosis, people. 

My final meal

 I have to admit-- this is my last night before my big rheumatology appointment, and I'm not exactly a picture of mental peace right now.  I couldn't get to sleep last night, had a couple of panic attacks, and I ended up sleeping on my futon downstairs with an old, beat-up stuffed Pound Puppy salvaged from my childhood for comfort.  (Oh-- and my husband is out of town.  His internship informed him that he had to spend a week in Baltimore about two weeks ago.  What sucktastic timing.)  So, whatever I find out tomorrow, I'm going to find out alone, and he gets to find out over the phone. 

So, what was my response tonight?  Sushi.  I went to my favorite faux Asian restaurant and got tempura salmon rolls, some soup, and some spring rolls.  And strangely, now full of salt, tempura, and MSG, I feel so much better. 

People are weird when they try to handle stress, and I guess I'm no different.  Here's for miso soup and maki! 

Insurance Sucks

The fabulous Dr. H. informed me a couple of days ago at my last appointment that the University has re-bid our student heath insurance and that we're going from UHC to Aetna.  I find this to be a prodigious waste of my time right at the moment I'm supposed to be finding out how bad the rest of my life is going to suck. 

Okay, so UHC wasn't exactly a walk in the park.  Every time I needed some kind of expensive test or imaging service, they required me to prove I was still a student.  Then they only gave me 30 days to do it, sent me the wrong forms (or lost them altogether) and the charges would be rejected in just a couple of weeks.  I have yet to get a single charge paid in a timely manner with them.  On the other hand, they've paid all my charges so far.  That's better than things could be-- I could have been stuck with the bill along the way.   

Even worse, I'm only going to get in one appointment with my rheumatologist (whom the fabulous Dr. H says is awesome) before the switchover to the new insurance at the end of the month.  That means new referrals, new paperwork, and worst of all, I don't know if my rheumatologist is going to even take the new insurance.  So I might have to go to someone else later-- and someone might not be a someone that Dr. H knows.)  

And, I'll have to find out all the new information on co-pays, specialist visits and whatnot, and if UHC is any indication, it's going to be the end of August before I get my insurance cards.  All while I'm zeroing in on an autoimmune diagnosis.  Not fun at all. 

Fessing up

It's such a hard decision, isn't it?  What do I tell my family?  When do I tell my family?  And whom?  

Well, as it turns out, I spent some time with my family a few weeks ago, and I had decided I was not going to tell them a damn thing until I had something concrete to tell them.  The way I figured it, there was no reason to tell them about the positive ANA until there was something more to go with it.

A lot of that decision has to do with family history.  My great uncle, my maternal grandfather's little brother, died of lupus about three or for years before I was born.  Great-Uncle "Lewis," as I'll call him, was always sort of the family dark secret because nobody wanted to talk about him.  I guess it was a sore subject, but I just remember snippets of conversation as I was a child about, "Well, then there was what happened to Uncle Lou.  But we don't talk about that."

Well, I decided a long, long time ago that my grandfather (who is now 87 and still a mean old bastard) wasn't going to know a damn thing about whether or not I had lupus-- not because I don't want him to feel bad (after all, if it's genetic, he's the carrier) but because the last thing I want is for that nasty, manipulative old jerk to have a reason to feel  sorry for himself and try to milk some sympathy.  He's a pro at it.  (And if it seems like I'm being hard on him...  don't  give him any sympathy.  He's one of the most violent, abusive people I've ever met.  Just 'cause he's old doesn't mean he got any sweeter.)

Okay, so my Grandpa "Prue" was sitting at his kitchen table while my mother, aunt and I helped pack him up to move him into a seniors apartment complex while my mother and aunt start gossiping.  Eventually the conversation turns to me, and I cringe.

"So, how's your health lately, honey?"  My mom asks innocently as she tapes up a box. "Still having sinus problems?"  I just grunt non-committally.  I don't want to have this discussion.  My aunt, who is a surgical nurse, picks up the conversation.
"Yeah, Ann-Marie.  Have they run any more blood tests on you?  You know, to check for immune stuff."  I just grunt again.  I look over at my grandfather, who perked up on the word "immune,"  and I cringe. 
"You know, have that run that blood test again, that ANA?"  She asks.  "Or, what about checking your complement levels?  I saw something on that when I was watching the TV a few weeks ago..."
"I was wondering if your swollen ankles was related," my mother pitches in.  "You know, to all the other stuff that's going on."   
"Oh, you mean like that heart condition?  Sure sounds like auto-immune stuff, doesn't it, Kay?" 

 My mother and aunt mosey down to the basement as they keep talking, and I look at my grandfather, who looks absolutely stricken.  Did he make the connection between me and Lou?  I wonder. He sighs deeply with watery eyes and says, "Oh, hell."  Enough was enough. 

What could I do?  I tramped after them down the stairs, locked them in a bedroom, and said, "Look, if I tell you what's going on will you both just shut the hell up about my health around Grandpa?"  and I came clean.  I told them about the positive ANA and the weird lupus antibody test, and that it's pretty obvious that I have lupus and can't get a positive diagnosis, and that was that. 

It was strangely easier than I thought-- I just needed clear, immediate motivation.   And a dysfunctional family.

Diagnosis Jitters

Now that the clock is ticking down on my appointment with the rheumatologist now that the fabulous Dr. H has sent my referral, I've been trying to think through what's going to happen next week when I meet with this new guy, whom the fabulous Dr. H says is really damn good.  He's obviously going to want to run more tests, as I have not had my complement levels or anything like that done.  But will he go ahead and tell me that I have SLE?  That's the question.  I've spent a lot of time over the last few days trying to figure that out.  

Okay, so the American College of Rheumatology set up eleven criteria for diagnosing someone with SLE.  Usually, depending on which ones you have, you only need four for your doctor to make the diagnosis: 

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

So, in general, you only need four, and you should have more than one symptom at a time, if I understand things correctly, and some symptoms are more symptomatic than others.  Which ones have I had?

4.  Mouth or nose ulcers: usually painless
5.  Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion.
6.  Cardio-pulmonary involvement
11.  Antinuclear antibodies (ANA)

 But those are the only ones I know I've had without any other explanation.  To be honest, I've had #9,  a funny liver enzyme test (while I was having gall bladder attacks) and I had #8,  protein in my urine (when I had the worst bladder infection in the world.)  Both of those, however, might have a perfectly logical explanation, as listed before.    

In addition, I have been treated 2-3 times for what everyone has assumed were patches of ringworm on my forearms.  As it turns out, those patches look a LOT like discoid lesions, and we treated them with steroid cream and they went away.  So, have I had symptom #2?  Maybe. 

So, it really is a judgment call.  I can't tell what my rheumatologist is going to decide based on my chart and if he thinks my canker sores are enough to count as a symptom.  It's going to come down to the bloodwork, I think, and what he makes of that weird lupus antibody test I had.  It didn't come back positive for any of the hallmark antibodies mentioned in #10.  But I did have anti-centromere antibodies. 

So much for trying to out-diagnose the rheumatologist.  I'm just going to have to sit tight and hear what he says. 

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!

Lupus Guide for the Perplexed: Malar Rash

Malar Rash
Other names:  butterfly rash; lupus war paint

Like that proverbial squeaky wheel, it's always the visible symptoms that get the most attention.  Most symptoms of lupus, and the ones that really scare the hell out of us, are the ones that run silent and can't be diagnosed easily.  These symptoms-- numbness, depression, inflammation, pericarditis-- are the ninjas of lupus symptoms.

But then there are the attention whores of the autoimmune world.  The butterfly rash is the most obvious, because, just like Paris Hilton or Amy Winehouse, they're bitchy, flashy, and they request, nay, demand that they be in your face all the time. The rash can range from the "blushing"  look to bearing a familial resemblance to Seal (whose scarred cheeks are, in fact, a malar rash).  Sometimes your cheekbones and the bridge of your nose are just a little flushed, like your lupus slapped you across the face, and for other people it's a scarifying, face-munching wreck.  

 Yes, your disease really is this annoying. 

When somebody sees the malar rash, they automatically assume that lupus is involved, kind of like assuming Don King is around whenever there's a boxing scandal.  You know, like those commercials they've been running on TV recently: a woman looks in the mirror at her oh-so-obvious blush over the bridge of her nose and down her cheekbones, and the television asks in a hushed, pensive voice-over, "could I have lupus?"

Well, it's not so simple because, as it turns out, not everybody's autoimmune disease is an attention slut.  Only 45-65% of people ever develop the facial rash as an indication of SLE.  That leaves up to half of us without a blush on our cheeks and a visual cue for our distress.  On the other hand, just because you look like you've been stung in the face by a swarm of paper wasps doesn't mean you have lupus, either.  There are a whole host of inflammation disorders, infections and whatnot that can also give you a red nose and shiny cheeks-- dermatomyositis, a tinea or streptococcal infection of the skin, cellulitis, or plain old acne.  So, don't take out that life insurance policy just because you've gone patchy in all the right spots.  Nothing with SLE is ever that simple. 

Unless you have skin involvement with your lupus, you may or may not ever find yourself daubed in lupus war paint.  I'm still rash-free on my face; I have problems with bruising instead.  That's my autoimmune disorder's plaintive, whiny, attention-whore cry for attention.  That malar rash may be the one sure-fire sign your doctor is looking for, so don't be fooled that you don't have lupus if you've never had a rash.  Instead, it could be that your SLE is much more sedate, and discreet, than having Paris Hilton splashed over your face like a magazine centerfold.

Lady Gaga: Lupus diagnosis spokesperson?

Well, I'll be damned.  It seems that Lady Gaga and I have something in common after all.

In case you haven't heard, Lady Gaga has been tested for lupus and has had a positive ANA; she's not symptomatic, however.  She had a relative with the disease, so she's being watched carefully for it. 

I can't think of a better spokeswoman for SLE: she's surreal, completely unbelievable, and you never know what the hell she's going to do next.  Hooray for Lady Gaga and the fight against lupus!

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? 

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.

Lupus Guide for the Perplexed: Raynaud's Phenomenon

Raynaud's Phenomenon
 other names: Raynaud's disease; Zombie Fingers; Death Gives a Hand Job

If you've ever looked down at your hand and started cussing uncontrollably in a panicky, high-pitched voice, then you've probably had a bout of "zombie fingers," or as it's more commonly (and less amusingly) known, Raynaud's Phenomenon. The official name for this symptom makes it sound like some really cool sport of nature, like Northern Lights, ball lightning, or Adam Lambert.  It doesn't even begin to capture the weirdness of realizing that your fingers have decided to show you what you're going to look like when you're dead. 

In reality, Raynaud's Phenomenon only looks bizarre for the most part; you don't have leprosy, you're not turning into a flesh-eating zombie, and your fingers are really not going to drop off your hands like a bad episode of the Dick Van Dyke Show.  Just give them a couple minutes, or up to an hour, for the circulation to come back.  Only in very severe cases where it happens constantly (or doesn't go away) does Raynaud's phenomenon cause circulation or tissue health problems, so don't panic. 

Raynaud's Phenomenon occurs when the blood vessels in your fingers (or even your toes, ears and nose) constrict suddenly, limiting blood flow; the affected area will look dead and pasty at first, and then a lot of times become blue at the tips.  In most cases, it doesn't last very long, and for most people it isn't painful-- although some people get some pain and tingling because, you know, there's no blood down there. 

As to its causes, it seems like a lot of things can tell those blood vessels to clamp up-- things like cold, pressure on your fingers, or getting really stressed out.  The underlying causes can range from low thyroid to certain medications, sensitivity to drugs that affect circulation, to arthritis and injury.  In fact, it's apparently a workplace hazard of professional pianists.  Autoimmune diseases, obviously, are a possible cause too, because of the havoc they can wreak on connective tissues.

If you ever have Raynaud's phenomenon, it's obviously good to chat with your doctor about it.  For most people it's not a sign of the zombie Apocalypse.  Instead, the next time it happens, enjoy it!  Get yourself the Thriller soundtrack, a zombie suit, and go scare some little kids.

How well does your doctor know ANA testing?

One of the things I've figured out over the last five years is that most general practitioners don't see autoimmune disease enough to really be up on what the testing means.  I've had an ANA test at least four times, and I was told different things at least three times.  So, one important thing, I've discovered, is knowing the facts about autoimmune testing for yourself so that you know what your doctors are doing and what the results mean.  So, here's a little recounting of my own ANA testing saga to give you a point of comparison!

When I was first tested for lupus, I suppose it was about six years ago with the first year of absolute hell back in 2004.  I didn't have a regular, consistent doctor at that time, so I got bounced about a little bit between three doctors that worked in the same practice.  When I was tested for lupus, this doctor also tested me for Lyme Disease, HIV, and an rheumatoid arthritis, as I remember.  I asked him what the test meant.

"Well,"  he said, "We just want to check.  And if the ANA is negative, then we don't need to worry about lupus."  So, when the test came back negative, I took him at his word.  That meant I didn't have lupus.  I didn't have to worry about lupus.  And we were both wrong.

In reality, what he probably should have said was that we didn't have to worry about lupus then.  Just because you have a negative ANA doesn't mean that autoimmune disease is off the table.  I read somewhere once that it takes about ten years for a positive lupus diagnosis-- and that' s a long time to have a negative ANA.

Then, back in 2006, I finally had another flareup of symptoms and I talked to my first doctor at Student Health, Dr. M, about everything that was going on.  I was getting frustrated.

"Really, this sounds autoimmune, and we should check to be sure,"  he said.  "I'd really like to run an ANA on you to check for lupus..."

"But I've already been tested once already!"  I whined in my desperate, squeaky voice.  I had really invested a lot of emotional importance in that first negative test.  Dr. M, however, shook his head.

"You can have a positive ANA later even if the first one is negative," he said.  "If you're clear in a couple separate tests over at least two years, then I think we can put that possibility aside."  So, I let him draw blood, it came back negative, and once again I was safe to assume that I didn't have lupus.

He was probably quoting something official about lupus testing, but for me it gave me a false sense of security, and I promptly went into denial.  I did not have lupus, I would emphatically assert.  And I had two clean ANAs to prove it. 

So, about a year and a half later, when I walked into my new doctor's office at Student Health, the fabulous Dr. H., she once again wanted to test me for lupus with an ANA.  Naturally, I was a little nonplussed, but she could explain things much more coherently for me, I think because I'm her second or third patient to go through this process.  "It takes anywhere from 5 to 10 years to get a positive lupus diagnosis," she explained, "and 95% of lupus patients will eventually have a positive ANA.  That means we need to keep testing regularly to check until we know for sure your problems are from something else."  When I asked her what that ANA would mean, she told me, "Even if the test is positive this time, don't panic.  Just because you have a positive ANA won't necessarily mean you have lupus.  But you almost have to have a positive ANA to be diagnosed with it."

So, that's the reason that I was tested two more times, and the fourth time I had that positive ANA.  And, if I had stuck with first explanation of the process I received, I might never have gotten tested again unless I had had a doctor who knew the process better than my first doctor.

So, it seems that all doctors get the same training, but they interpret it differently and probably never have to counsel many patients on the process.  And, for a disease as rare as autoimmune diseases generally are, that's to be expected.  We're expecting general practitioners to be the watchdogs for problems that are really in the realm of specialists.

So, don't be surprised if you hear a lot of different things about lupus as you go through the process.  It doesn't hurt to check up online from credible sources about what your tests are, and especially what they mean.

Lupus Testing on a Budget

It's been very expensive on my end to maintain my "I think you might have an autoimmune disease but we're not sure" lifestyle.  I bet I have spent, over the last nine years, close to ten grand for various tests, ER visits, antibiotics, and whatnot, and I had super-duper government insurance for four years of that.  And none of that spending was my idea.  It's rather frustrating to imagine what my new car would have looked like had I been a normal, healthy person. 

It wasn't too bad when I had the federal government paying for all my medical insurance as the dependent of a military officer.  It really sucked when I was paying $400 a month out of pocket every month for my insurance when my hubby was working as an engineer.  As a student...?  Meh.  It's a compromise.  Some things work well, and some things don't.

On the one hand, my student insurance drags its feet, kicking and screaming, every time I have a big budget expense like my gall bladder surgery.  I have to prove I'm still a student by sending in a form to the registrar which somehow never quite makes it by the deadline and my claim gets rejected.  Then I get to scream at them (which is quite exhilirating.)  But I've never had to eat a single claim.  It's all worked out. 

On the flip side, I've discovered a few benefits to being tested for an autoimmune disease on student insurance that might not be available to the common insured.  I shopped around until I found my wonderful student clinic doctor, Dr. H., and I've stuck with her for practically everything over the last four school years.  She's gotten to know me (and my prodigious medical chart) and has a good feel for what things I actually need to stay healthy and which tests and procedures are just extras.   And, since she works with students a lot, she's very sensitive to the cost issue.  She doesn't short-change my health care at all, but she has some nice ninja-esque tricks to keep the costs down on my end. 

For instance: at my university, we have a fully-functioning health clinic with a lab, which means that they can do a surprising number of blood, urine, fecal, and skin tests in-house.  The way my insurance works is that anything that doesn't need to be sent out to be processed I get done for free.  They give the doctors a lot of warnings about running needless tests to keep costs down, but I can still get a lot of my bloodwork done without paying anything out of pocket.

So, here's the arrangement me and my doctor have been using.  We built up a nice little schedule of regular testing (about every eighteen months) for the autoimmune stuff, and she stuck mainly to the cheaper tests that can raise red flags and indicate a need to test for other stuff.  For instance, I get tested for syphilis to see if I get a false positive result.  (I think our campus gets a wholesale rate on STD testing kits or something.  Go figure.)

Whenever other red flags raised up (like my funny liver test,) she ran more specific testing in-house.

Whenever she's sent me to some kind of specialist (like the rheumatologist coming up) she anticipates the blood tests she's pretty sure that the specialist is going to order anyhow, and she runs them up front and sends them along with my chart.  That way the specialist gets their tests ahead of time and I don't have to pay for them.  Nifty, huh?   The especially nice thing is that, so far, her forward-thinking has saved me a followup visit or two as well.  That's pretty sweet when you consider my copay for a single visit is a hundred and fifty bucks. 

So far, I've only had one test that the student health service couldn't run themselves-- celiac disease.  But it was still cheaper because the university lab could draw the blood, and I didn't have to pay a copay to have someone else do it.

For other tests, like ultrasounds and whatnot, I never leave the doctor's office without a referral, whether I need one or not.  That cuts out any possibility of the insurance denying a claim based on not having a referral ready.  

And so, that's one way I've started to figure out how to do lupus testing on a student budget.

Lupus Guide for the Perplexed: ANA testing

I have a strange reaction to bad news.  I want to laugh at it, in the most savage, sarcastic and brutal way possible.  I know it's an odd response to tragedy, but for some reason it helps me keep things in perspective and keeps me from going insane.  So, with all this auto-immune disease stupidity I'm going through, I think I'll make fun of that, too. 

In the interest of giving people some basic information on what the SLE testing process is like, and in the interest of me not going insane, I've decided to kill two birds with one stone and do a series on lupus vocabulary.  The information is all culled from legit government and academic sources, although a little...  strange.  This is the first installment, and I hope you enjoy it!

---

ANA (Anti-nuclear antibody): 

In layman's terms, this is a blood test to determine your body's level of misdirected hatred and self-loathing, and could just as well be termed your Immunological Emo Factor; it's just a way to see if your white blood cells have a Flock of Seagulls haircut or listen to Snow Patrol on their itty-bitty little iPods.

To be serious, an ANA is a serum-based screening method that's designed to check for signs of your immune system attacking normal cells instead of, you know, diseases and stuff.  A lab technician puts some of your serum in a petri dish with some cells to see what happens.  If everybody holds hands and sings protest songs, then it's negative.  If World War III in a microcosm breaks out, then it's positive.   The presence of antibodies that go after the nucleic matter in cells is an indication that something is rotten in the state of your autoimmune Denmark, telling your doctor that it's time to look further and see why everybody's so angsty all of a sudden. 

This test can have  a variety of different 'positive' readings that can be helpful to point your doctor to possible diagnoses, but it's not by any means going to tell you if you have SLE; a positive result on an ANA can indicate everything from other autoimmune diseases to cancer to absolutely nothing.  This is simply the version of your immunological "check engine" light going off.  If it's blinking, then maybe you've blown a head gasket.  It's much more likely that your gas cap is loose.

How important is a positive ANA to being diagnosed with lupus?  Sort of.  Depending on whom you ask, 95-97% of lupus sufferers will eventually have a positive ANA.  (And there's literature trying to figure out what's up with that other 5%.)  The ANA doesn't mean you have lupus, but it is the first line of attack doctors will use to determine whether or not to start worrying about it. 

So, if a doctor, like a good car mechanic, suspects lupus, this is often the first place they'll check because there is no reason to run more specific antibody tests until this one shows that there's a problem.  But, just because you get a negative result on your first ANA doesn't mean you won't pop positive later-- so it's important to have your ANA run several times, over several years, and make sure that all come back negative before you stick a stake in the heart of your autoimmune vampire.  He might still be lurking, with his Emo haircut and black lipstick, to show up and whine about how you don't appreciate him when you least expect it. 

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!

Waiting

Waiting, waiting, waiting.  Oh, suck.  

Right now, I'm stuck in a holding pattern on my blood tests.  My doctor, the fabulous Dr. H, decided to pull a lot of blood for a battery of blood tests she knows my rheumatologist is going to want anyhow, so she's ordered them at student health so I don't have to pay out of pocket.  She ran a series of things checking for protien in urine, thyroid problems and muscle inflammation, but the most important is the lupus antibody series looking for anti-DNA, anti-SM and anti-RMP.  That one takes several days to process, so I knew I wasn't going to get the results back until sometime this week.

The big problem, however, is that Dr. H. was going to be out of town after Tuesday, and I didn't catch her in time after she called me with the results, so I'm waiting until my appointment first thing next Tuesday to get the results that have been sitting in my patient file since Wednesday afternoon. I'm not a patient person by nature, and the anticipation is killing me. 

Se gave me a call before she left to keep me updated:  "I just wanted to let you know that the blood tests we ordered were mostly quite good, and I wanted to talk with you in person about the results."  The last time she pulled that "mostly good" garbage was when all my tests came back clear except for the ANA.  Well, damn.  In addition to being a little impatient, I can be a little paranoid.  In my mind, the one that isn't clear must be something in the lupus antibody series.

I ran by the student health clinic to check on the results Wednesday afternoon, and one of the nurses came back to check on me after consulting my chart.  "Dr. H. said she left you a message, and to make an appointment for next week when she's back in," the nurse said.  Then she sort of paused and gave me a funny look.

"Besides," she added cautiously, "... If it were me, I think I'd want to talk to somebody about my tests in person.  Don't you?"  My mind started racing.  The paranoia, as far as my mind was concerned, had just been confirmed.

"Um... sure," I answered, and I made the appointment for the following Tuesday. 

I only have two more days to wait, so here's hoping I can sit on my hands a little while longer... and they don't go numb on me again while I do...

How to make your patients feel NOT reassured...

So, I was getting my next round of blood work last week, and here's how it went:  I handed my superbill thingy to the lady behind the computer and she starts plugging in stuff into the database for insurance purposes and stuff.  And then, while I'm waiting, she lets out a low whistle.

"Hey, Ken!"  She yells back into the lab area.
"What?" The lab tech calls back. 
"What's the billing code for a lupus antibody panel?"  She asks, reading the name out slowly so everybody in the back of Student Health can hear.  Ken comes out from the back.
"For a what?"  He asks again.  She repeats the name of the test series.
"The code for it?  Hell, I ain't ever even heard of it," he says, scratching his head.
"I guess we're gonna have to look that one up.  What would it be under?"  They then begin a long conversation about what category of testing that would be considered. 

The girl sitting next to me with her pee cup in hand gives me a strange look, and I suddenly want to crawl under my chair.

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.

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