After skin biopsies and blood draws galore, both Dermatologist and Rheumatologist had the same answer for me today: “We don’t really know what’s wrong with you.” The answer I totally expected to hear.

Derm says it’s either a “drug eruption” — an allergy to some medication I’m taking (although I haven’t taken any particular med regularly throughout this rash) or some hypersensitivity to something else going on in my body, most likely the Crohn’s. She can’t help me anymore on this one; I go back in three months for another mole check, but as far as the rash, she’s stumped.

Rheum says much the same — all of those blood tests ruled out the big players, like Lupus, RA, Still’s, and all of the nasty stuff. My liver and kidney functions are perfect. So whatever it is, it’s concentrating on my skin and joints. He also mentioned hypersensitivity, and that in 50% of these cases, they can narrow it down to a specific drug or medication. In the other 50% of cases, they never figure out what it is, and it goes away on its own. Since I refuse to take Prednisone, which is apparently his go-to move, he has no other options for treating me.

The rash is a little better these last couple of days, as is the joint swelling, so I’m hoping that the Crohn’s stuff I’m taking (an immunosuppressive) is starting to work — I’ve been on it for two weeks, and it apparently takes 2-3 weeks to build up to high enough levels in the body to start working. So fingers crossed that it keeps getting lighter.

So if you follow me on the social networks, you know there’s some stuff going wrong with me. Here’s the fuller scoop.

A few months ago (July, to be precise) I had an outbreak of a rash. It looked like hives and acted like hives, flaring up at night when I worked, and fading away during the day when I was at home. Some days, the rash was accompanied by swollen and sore joints — mainly fingers, hands, elbows and knees. After about a month or so, it slowly got better and went away.

Suspicions at the time were that it was an allergic reaction to the dry-cleaning chemicals they used on my costumes. So I wore some of my own stuff, and they switched my costumes to regular wet-wash, and that was that. All better. OR SO WE THOUGHT!

A couple of weeks ago, the rash started appearing again. Exact same areas (backs of arms, backs of hands, thighs) in the exact same grow/fade cycles. But it came on stronger, and faster, and the joint pain came faster and stronger too. Add in a sore throat, and I headed not to Disney’s health services, but to an actual doctor. I was looked over and put on a 5-day blast of Prednisone (oh, how I never hoped to be on that steroid again), and was told to keep using Benadryl for the itching, and to come back in three days for a follow-up. They took some blood for various tests to look at rheumatoid factors, lupus, and various other weird rash/joint things.

So I finished out my work week, still rashy and joint-painy and sore-throaty. My follow-up appointment was Wednesday, two days ago. I woke up that morning with the previous day’s rash still mottling my skin, and the most incredibly painful joints yet. I couldn’t move my arms above chest level. I couldn’t make fists. I could barely walk. The doctors were perplexed, since all of my blood tests came out totally normal. They drew more blood, gave me stronger meds, then made a same-day appointment with a dermatologist. Thank goodness I had Scott to drive me around. The dermatologist took a couple of biopsies (and when they say the numbing agent will pinch then burn, that burning is INTENSE), gave me a cream for the rash, and wrote me a note to keep me out of work for a week to rest. I cried a lot that day. There was a lot of pain.

Yesterday was a little better; I could walk (slowly), though I wasn’t much use in carrying things. And one of the meds they have me on, a super-strength antihistamine, is apparently also used for treating anxiety. I can see why, and I can see why I’m not supposed to go to work. I was a total space cadet, floating around on my little mental cloud. Scott said I was highly amusing.

So, here I am on my Monday, staying home. I took my meds, but I’m not completely goofy just yet. I still have the itchy rash (it flared up last night, so this morning I have the fading remnants, which are still blotchy and itchy). I still have many swollen, painful joints. I still have my sore throat. And now I have 5 tubes of blood and 2 skin biopsies out there in the medical ether, awaiting results. So let’s all cross our fingers for a definitive answer in the next few days, so treatment can really begin.

Pearl Jam Guitarist Goes Public with Crohn’s

I have so much respect for this guy for coming out about his disease. Crohn’s can be such an embarrassing topic, it’s hard to be open about just how sick you can be. I’m glad to see someone in the public eye speaking out about the disease. You can damn well bet that if I’m ever famous in any way, I’ll be more than open about my Crohn’s, because I know only too well the shame and pain and feeling of being alone that such a disease can bring.

Want to know more? Visit the Crohn’s & Colitis Foundation of America.