Tom Kufahl

 

Thomas Kufahl  tkufahl@charter.net

I didn't get diagnosed until 49 when I got my genuine flair, but I'm sure I had it undiagnosed always. I was born with eye ulcers, & had them again at around 10. Mom says I cried a lot. I have no baby pictures because I cried so much and sucked my fingers.

Got stronger around 13 or so, but always sat "squeezed" up, "squeezed" my wrists & ankles most of the time, which looked pretty odd, so I worked to break the habit.

When I was making hay for the neighbors at around 15, I tried so hard to be a "man", that I infected my appendix. That was the first real, undiagnosed flair. Stayed in the hospital 10 days because of the temperature, & doctored the rest of the winter because of the fever. I clearly remember that was Stills. They thought I might have undulant fever. In the 11th grade I played "Griegs Piano Concerto" (I'm a pianist) with a fever of 103! Ick, now that I remember.

Thank God I was pretty strong throughout college & working years. Took a lot of vitamins in the 80s. Did pretty well.

IN 1992 we were having daily riots at the school where I taught music. I was coping with that OK, but I hated the principal much more than he hated me, and had no recourse in my quiet self to do anything about him. He knew that, & zeroed in on me. Toughest part of my life.

Got sick as soon as the summer vacation started. First sick & aspirin, then noticed joint pain bounce all over my body. -back, neck, arms, feet, everywhere. As it progressed in about a month, the fever started, drenching sweats, couldn't walk when in a session. It undulated, & at times I could get groceries, etc. Thank heavens my dog was at my parents house through that period.

Had a Dr. friend at that time, so he did blood tests & took me to a rheumatoligist. We decided that I had Lymes disease, even though the tests were negative. Took volterin, & continued to get worse. Fever to 103.

Note the part: My HMO doctor decided that I had mental problems & refused anything but antibiotics for lymes!!!!!!! He spent a long time explaining to me that I was at his mercy & there was nothing I could do! When I called the rheumatoligist with drenching sweats, couldn't walk anymore at all by then, fever 103, & throwing up from the voltirin, rheumatoligist said go to emergency.

I sat in emergency while the hospital decided what to do about my HMO. They went over my doctor's head to the area person & admitted me. I still go into a rage over my HMO & feel like suing.

In the hospital, I was their mystery patient. SED rate was 125, & they took all the tests you all had. Didn't respond to nsaids. After a week, they tried a megadose of prednisone for 2 days & it completely relieved me. The hospital found an excellent HMO doctor for me, & it worked out. After being relieved, a Dr. told me that he thought Still's, gave me an unreadable article which was scary, & sent me home on 40 mgs prednisone. I remember feeling "high", I think on pred., & depressed because I knew the school would single me out if they knew I was vulnerable. Started using my 180 sick days. GOT HURT TWICE IN RIOTS!, & the good Dr. said I had to get out of there. Gave me a sick leave for the rest of the year (in March). A very tough time.

At the same time, Chicago & IL were working out an early retirement package! Chicago really fought against it, and & called & wrote 100,000,000 congressmen. & reps. In July it went through! Need I say I took it. What a relief!

The next problem was getting off low doses of pred., & plaquinil. after 1 1/2 year I managed, as I slowly healed. The change in life style has really helped. Dr. told me to be a health nut, & not act sick. Worked up my dog walks to 3 1 mi. walks a day, which I still do every day. Try to be vegetarian, got afraid of too many vitamins, because ... long story.... do sleep a lot, yet, but then walk in the park.

Now I'm doing very well, but I think it's lurking in the background, & sometimes reminds me that it really is. That's why I was concerned to start this wonderful group! It seems that we all feel that way! Trying to make sense, understand, get ideas on what to do, ... tell Drs. what to do, those kinds of things

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