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´.

Listening to my Uterus

Grampa Gyne pushes at his glasses. I know something must be up, because instead taking the seat at his desk, where he usually sits after examining me and writes prescriptions, he's chosen to sit on the couch opposite me.

"So," he pushes his lenses again, then leans with his elbows on his knees, his expression a grandfatherly mixture of wisdom, professionalism and sympathy, "where are you in your decision- making about child bearing?"

Talking to your body is a little like talking to a computer. Or a small child. Or a horse.

A child or a horse or a computer can't necessarily tell you, in so many words, why it's acting out. Maybe sometimes an animal, machine or child is having temper tantrums because of some obscure inherent condition, or malfunction. But most often I think it has to do with something you're feeding it, doing to it, or putting in its environment. There's something triggering the outburst.

That's why I'm taking time today to Listen to my Uterus. I think it must have something to tell me. In fact my whole body is screaming for attention, and not necessarily in productive ways.

This month in medicine I've been officially diagnosed as hypo-thyroid, seen a physiatrist (neuromuscular specialist) who couldn't believe I can walk after looking at my MRI, and with Grampa gyne, officially opened negotiations about the permanent removal of my uterus. What gives?

I'm regularly amazed at how we Americans are more in tune with the needs of our children, our pets, and our machines than we are to our own bodies. My friends Lynette and Charles have two cats. Says Lynette, "When they eat raw meat, they get the runs; they run around and around and around the couch until they've run it out! It makes them so hyper!"

How often do we personally notice any connection between what we eat and how we feel? Dozens of studies are now at our disposal regarding childrens' diet and their behavior. Do we think this stops when we're adults? We still ride the sugar see-saw - eat it for breakfast, crash mid-morning, eat more for lunch.... The news is full of the latest on diabetes and heart disease in the West. No, as much as we'd like to think so, we're not immune to food.

We're not immune to environment, either. The air we breathe, the noise we're exposed to, the stress we endure.

The problem is it takes attention to ferret out cause and effect. Attention and time and effort - which seems just one more thing "to do" among the kaleidoscope of things we're "supposed" to do every day. And as long as all systems aren't failing catastrophically, we tend to move on.

In the midst of another uterine flare, I've decided I'm tired of battling one infection after another with antibiotics, steroids and other toxic substances, with time between marred by inflammation which feels like a constant migraine in my pelvis.

"I'm concerned about the microbes mutating, getting more tolerant of the antibiotics and stronger against me," I told Grampa Gyne. "And I'm sick of being responsible for educating the bastards. I feel like I've already paid for their college education. I'll be damned if I'm gonna throw in for the masters and doctorate degrees, as well."

I'm ready for a new path.

But all Western medicine has to offer is to cut it out.

So, let's think about this. If your computer had a virus, and you'd been to all the top computer specialists in the world and they couldn't get rid of it, what would you do? (No, you can't buy a new one. This is a metaphor.)

You could smash it to bits (but that would be suicide -always a last option.) You could grit your teeth during its slowness, and keep working it into the ground while it keeps crashing and crashing and crashing.

Maybe you could take some of the load off. Maybe delete some files, run just the software you need. Maybe you figure out that if you just want to do some word processing and get on the internet, your computer works just fine. Maybe you don't need to run the fancy graphics software to get by.

I think that as Americans, we'd rather take a pill than seriously consider any changes to our lifestyle. A shorter workweek, a diet rich in whole foods and low in sugars, an active jaunt three times a week. All beyond consideration for most of us. Our country was built on hard work,and, damnit, we're going to push it to the wall, so we can get things. We will run the fancy graphics software. We will put it on credit. At any cost to ourselves, our bodies, our self esteem, and our relationships.

But wait, I remember this obscure little feature on my computer. It took me a long time to find it. It's called "disk repair," and not everyone knows about it, though it's there for the asking. Apparently it works much like "defragging" on those PC things.

When I run it, sometimes it fixes whatever problem I had. In most cases running it is just considered good computer "hygiene," preventing and correcting problems along the way.

Hundreds of studies support the logic that there are things we can do besides take pills which help "defrag" our own systems. Meditation calms the heart, reduces blood pressure and boosts the immune system. Touching, or being touched by another person releases oxytocin, regulates glucose levels and increases natural killer cells. Yoga reduces muscle spasm and pain. Massage, acupunctue, tai chi...all have well documented positive effects on our body's ability to cope with disease, pain, and the environment.

I learned how to meditate in college. Three times a day I sat and pictured white blood cells, like Pac man, eating up all the bad things in my body. I did Tai Chi and practiced martial arts, then sort of fell off it. I got more concerned with success, personally, professionally.... I felt it wasn't "working." I wanted a cure - one thing I could do which would fix everything. Pronto. As I meditated and practiced Tai chi, my lab results were improving, but not fast enough for me.

In retrospect this is exactly the crazy Western, American attitude which digs a lot of people further into trouble. Why not do the defragging? Why not do the disk repair? Perhaps in listening to my uterus, as opposed to just talking to it, I should hear a wake up call. I must step up and do the daily "fetching of water and carrying of wood" as described by Eastern philosophers.

Toward this end, as you are my witness, I aim to make the following efforts: to quiet the volume of activity I've grown used to in response to my pain, and deepen with it, by being quiet several times a day. If I do nap, to make that time more productive, more potent, by activating my mind around my body's own ability to heal. To make time for yoga, not half a session every other week, but a full session, twice a week. To budget a massage for myself every 10 days.

(BTW, for free yoga you can do at home every day, check out http://www.yogatoday.com/ They post new routines regularly!)

In Chinese medicine, the kidneys hold the energy we have "on credit." The theory goes that once that store is depleted, it needs to be replenished somehow. One needs rest, good food, warmth and a good balance of things, like human interaction and quiet.

Why do I keep going to doctors? Sometimes they do have something useful to say, it's true. But in the silence between appointments I am beginning to hear voices. When I stop talking and barking out orders, I think I hear the voices of my body calling. There is better way, a deeper way, a more productive way, and you've made progress, but you must consider giving up some things. The hardest things, perhaps. Walk with me.

Is my body calling for democracy? Disillusioned with my 30+ reign as sole dictator? Maybe if I put my own CIA to work seeking out microbes which are actually harming me, as opposed to punishing the organs which are only doing their job, I would ultimately win the war. Then again maybe not.

But when you think about it, it's not that hard; the body doesn't really ask that much. Only fundamental change. But in such small portions. Incremental, daily changes, which take so little from our lives, and add so much. A little meditative sitting 15 minutes here, 15 minutes there, cutting up a red pepper instead of eating crackers, adding quinoa to some miso soup, playing the pain meditation CD while napping.

"I haven't decided for sure about child bearing," I told Gramps Gyne," I think I'm probably not going to have children, but I figured I had at least a few more years on the final decision yet." And he agreed with me that we'd try other things.