Listening to my Rheumatologist

Listening to my Rheumatologist

"Do you think this could be an underlying cause to my Interstitial Cystitis?" I ask, scanning the small room but seeing nothing beyond the little wheels in my head.

She nodded with a knowing smile, almost a smirk. "And all your other inflammatory issues. I see it all the time."

This must be the kind or news a doctor loves to deliver. You have something wrong with you, AND I think I know how to solve it. I'm making a mental list of all the people I need to share this information with. My IC group, my Fibro group, everyone I know with Chronic Fatigue Syndrome. My boyfriend, my friend Keri, who years before earning her medical degree said to me, "I dunno, Niki, but this sounds an awful lot like an auto-immune condition..." my parents, my massage therapist, my gynecologist.

And I think, Thank God I have a Blog.

"This is the medication for you." She writes on a pad. "Plequenil. It's the least harmful of all the medicines I prescribe." She brushes a dark lock of hair away from her temple. "It used to be used to treat malaria."

I giggle.

"What?" says she.

"I've had malaria. And some anti-malarial drugs. This isn't one of the drugs that gives you hallucinations, is it?"

"No," she laughs. "This is much older than those. It was found out quite by accident that it helps with this condition. You will need to have your eyes checked by an opthamologist every six months, though. And it may take two to three months before you feel anything. But you've already waited..."

"Twenty two years," I heard myself murmur. "I've felt like crap for twenty two years."

There was nothing left to say. I've never had fewer questions. This is exactly the disease I've felt like I had, from nearly the beginning. Roving, raging inflammation which seems to travel from one part of the body to another. Slippery. It has seemed to have its own toxic agenda, and has masqueraded as at least a dozen different diseases. All of which I actually have. But this may be "the man behind the man."

This is turning out to be not the appointment I expected. Thinking it would probably be a waste of time, I'd already rescheduled my follow-up with this rheumatologist twice, and almost rescheduled today in favor of a quick trip upstate. A little fresh air'll do me more good than chasing doctors, I thought.

As I waited for the doctor in my little room and pondered on the best laminate square to set my bag down on, I began to feel the usual hackles of fear and certain, impending humiliation rise on my neck. I HATE being left in a waiting room. How many times has that room, in a hundred different offices, in a dozen different cities, resulted in pain, disappointment, and confusion, but worst of all, embarrassment. The doctor pats me on the head and says, "Sometimes we all get a little stressed out..." or laughs openly at the range of diseases I've supposedly come in with, all diagnoses of exclusion. "You can't possibly have all those things. You'd be dead." Well, maybe part of me is.

My chart is sitting in a clear plastic container which hangs from the door. I pull it down and open it.

Pause, please. My Mother is going, What? Read your chart? Isn't that kind of, well, sneaking around?

Absolutely not. When a doctor makes notes about you, those notes belong to you. A common misperception pervades that somehow we are not supposed to ever peek at our notes. But it is completely within your rights to read them. You can request copies of them to be sent to you, you can request copies be sent to another doctor, they are YOURS. Not only that, it behooves one to become acquainted with their contents. I have on more than one occasion found important information lurking about those notes, whose authors neglected or forgot to tell me.

Rewind. Play. I pull it down and open it.

At the top there is a letter to my primary care physician. She thanks my doctor for referring her in the usual manner, (though she didn't, really) next is a summary of my first discussion with Dr. Rackoff. And in the last paragraph: "I think it's very likely that Nicole has autoimmune disease, and am ordering the following tests..."

See, she's not going to tell you you're crazy, I repeated to myself behind the door, She doesn't think you're crazy.

But she probably does. Dr. Rackoff seemed like a no-nonsense kind of doctor last time I saw her. I can't imagine her having patience for any of these "touchy-feely" diseases like Chronic Fatigue Syndrome. Hell, I don't even believe in it.

"The good news is, you don't have Chronic fatigue Syndrome, " she said as she whisked the papers down onto her desk. "And you don't have lupus."

Great, here it comes. I knew it. We've ruled everything out, there's nothing wrong with you, a pleasant handshake, then I'm done. Maybe I can still make a batch of candles and make something productive of my day. I should have gone upstate, really

Dr. Rackoff has more to say. "Let me show you this blood test. There's this protein...in any case, what you do have is significant auto-immune disease. And it causes Inflammation. Non-specific. All over. Inflammation."

That would explain why every time anybody has ever scanned, poked, prodded, filmed, photographed or otherwise investigated my body, they've found inflammation, or the white blood cells which accompany it. But it's like how three blind men describe the elephant; the gynecologist looked at his part, the wrist doc looked at hers, the stomach guy at his, etc., etc. It would also explain why I seem to have weak to middling defenses against any infection.

In fact, looking at the diagnosis, Undifferentiated Connective Tissue Disease, or UCTD, it would seem to explain just about everything.

On my way home I wander around Union Square for a while. In Brooklyn I hit the pharmacy.

"I only have 20 of these I can give you today, the rest will be in tomorrow," the pharmacist shouts over the half-wall. He has a heavy Brooklyn accent, and scarily, he and his staff know me by face. "You want some now, or you wanna wait?"

"I would like to start my new life now, thank you." Not sure if I'm joking, he looks at the other pharmacist. They look down at the piece of paper; together they let out a loud guffaw. It's catching - pretty soon the whole pharmacy has the giggles. The staff will ask them later what it's all about.

I could walk on air. What would I do without this fucking monkey on my back? Make a better living? Focus on my career? Oh, if I have energy I'll have to volunteer, no more excuses about being a sicko, I can take voice lessons instead of get massage, maybe acting lessons, make that demo tape I've been meaning to....maybe physical therapy will work, now that my muscles won't just get irritated from it, and I can join martial arts again and maybe take a dance class. Tonight, why don't I make chili? Colin says he's hungry for Mexican.

Whoa Nellie. You're not cured YET. You my not be able to tolerate the medication. It may not work. The entire diagnosis could be completely false. What if they switched my blood with someone else's? I wander into the very yuppie-shi-shi Union Market, mind looping in the clouds, thinking, I should buy something to celebrate. Everything appears to be enhanced. Every detail is displayed to me in high-definition. Clearly I'm experiencing a mild drug rush. Oxytosin? From my brain? The flowers look gorgeous. Would flowers be overkill?

I'm looking at people in the market, people shopping, people who work there, and for a moment I feel like I'm circulating on their level, like I'm not one step out of synch and behind, like I usually am. In fact I think I can pick out the sick ones as if by radar; it's something in the way they move their eyes, tracking slightly above and beyond like looking at the world full-on would make them dizzy, and suddenly I'm standing in the middle of the market where I usually salivate over all the gourmet food I can only have a little of, and I'm thinking: I don't need this. I don't want anything I haven't got.

I mean, I wouldn't turn down some of those concord grapes right now, but I'm perfectly happy without them. If I have energy, I can want things again. But not these shi-shi yuppie things. Much bigger, much better, more important things I haven't dared to imagine in years. I've always believed you can get just about anything you want in life with hard work and perseverance, but that hard work takes energy. A commodity for me and others with chronic illness. It's been so long I haven't really thought about what I actually want from life. I'm so accustomed to asking, what can I actually, realistically get, and do, with the energy and pain levels I have, that this new life script comes at me like a train wreck. The movie machines are flickering, rewinding and putting in a new reel. I may be a free woman again. Out of prison. Suddenly emancipated. Off death row. Maybe I got lucky.

Colin knows what kind of state I'm in when he walks in the door, because I called him hours ago, my voice shuddering. He takes one look at me and sees I'm practically still on the ceiling.

"Don't get too excited about getting well, 'cuz you'll just make yourself sick," says Colin. He grins and folds me in his arms. Touche´, my friend. Touche´.