As Misty's World Turns


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Apr. 17, 2000

At long last I break my silence. I really don't have a good reason for not writing. Maybe I just needed a break from my own thoughts. Sometimes too much thinking can be bad for you. But today I promised myself that I would write tonight. I had to get some things off my chest. Six months ago I moved to south Florida. I've dragged my feet all this time to keep from finding a new doctor here. I've been down this road so many times, each time walking away with the same experience. The only place that seemed different was when I lived in South Carolina. As much as I learned to hate that state, I did have the best doctor I'd ever met.

Today I at long last began the hunt for a new doctor. (only because I was out of drugs...lol) I had no idea where to start, so I did as I have told many others before me....write to the Fibromyalgia Network and request a doctor referral sheet. When I recieved the referral list I selected a doctor in Boca Raton. He was listed as a Rheumatologist that handled Fibromyalgia cases. When I phoned for an appointment I was told I would have to wait a month to get in to see him. I waited my month, today was the day. I slept little last night. Part of the time I was afraid I'd oversleep and be late for the doctor appointment, and part of the time I rehashed the horrible treatment I've recieved in the past.

Thankfully I left myself plenty of time to get to the doctor. The directions weren't exactly perfect. When I got there I was nervous as could be. Finally the moment came when I met the doctor. He'd only spoken a few words when my antenna went up. Here it was again, a medical professional telling me that FMS isn't really an illness. He asked me how long I'd had FMS and I told him I'd been sick for the last 21 years. This seemed to take him back, then he responded with "I guess you probably know more about Fibromyalgia than I do." I said "I'm sure I do since your attitude towards it belongs in the dark ages." Needless to say the doctor took little time in telling me that people in the rheumatology field feel that they are "saddled" with FMS patients. He reminded me (like after 21 years I didn't already know this) that FMS was mistakenly put into the Arthritis field in the early years. He told me that no one really wanted the FMS patients, and he didn't see how there would be anything he could do to help me. I readily agreed, and added that I certainly wouldn't make the mistake of coming back to him in the future.

I figured I wanted something for my money, so I made sure he gave me a prescrition for the meds I'm out of. Who knows...maybe I'll just go from doctor to doctor getting first time visits, being treated like shit, and getting new prescriptions!

Apr. 26, 2000

I'm not sure how long I will be able to sit here at my computer, but I will try to stay as long as possible. For the last several months I've been in almost a complete remission. I was walking unassisted, and in fact my mother was needing my wheelchair more than I was. It felt good to feel normal for a bit.

Unfortunately I didn't dare tell anyone I was in remission...I guess I was afraid I'd jinx it or something. Well, regardless, I've since lost my remission and I'm back to the constant unbearable pain that is the life of someone with FMS. Living either in bed, or on the couch...looking out the window and wishing I could be on the porch, painting, and enjoying the ocean breezes. The constant pain is unbearable. I shuffle from sharp stabbing pain when I move, to burning nagging pain when I'm still. There is no such thing as a "comfortable position".

My mom was trying to cheer me up tonight, as I sat for a brief period on the porch. She said to me, "you've had this before, and it eventually goes away." Yes, eventually. But the thing is...when will it go away...or God forbid if it doesn't go away. She keeps saying to me..."what is it that you did?" I wish it was that easy. If there were certain things that started a flare up, God knows I'd be the last one to do it! The thing is, no one knows what creates the problem. No one knows how long the unbearable pain will last, and how far into the depths of hell you must go to be spared from the pain for just a few days or months.

I think the thing I hate the most about FMS, besides the incredible pain, is the not knowing. Not knowing when you will be better. Not knowing when you can make plans. Not knowing how far the climb will be this time, before you make it back to some semblance of normalcy, if only for a few hours or days. The longer the pain stays with you, the harder it is to keep a positive outlook on life. The American Indians have a saying...."to understand me, walk a mile in my moccasins"....isn't that the truth!

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