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...

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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? 

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.