Ug, again with the flakey doctors. Still's or not still's?

May 30, 2008

This is getting weird.

A while back my RH doctor told me she didn't think I had Still's as

originally diagnosed. When I questioned her, she changed her direction and

said that she thought I had Still's but that not everyone had the same

symptoms. At the time I had not had the rash or swelling joints.

Well this year, it came on again and for the first time I had swollen feet

and hands and some low grade fevers. The medicine they gave me (a strong

NSAID) seemed to keep the fevers, rash and swollen joints from being

constant. I even had a pinkish rash on the side of my chest which lasted

for a few hours. But mostly I have just had pain. My regular doctor

started me on fentanyl which helped a lot. But then I got even worse when

I tried to take a trip to Fresno. Had to return early so made an

appointment to see her again. I was totally miserable.

By the time I got in to see her, I had little pain, and very little if any

swelling. Most of it had passed. I assumed because of the NSAIDs.

Again, she stated she didn't think I had Still's. I hate the not knowing

and it seems odd that now that I have seen more of the symptom

May 31, 2008

Darv, don't feel bad about this as it is one of the tricks our bodies seem

to love to play on us! I've never had a Dr around when my wrists ballooned

up and were as hard as a rock, nor has one ever been there when I have the

pinkish " blotty " " rash " on my chest that is so faint it will not show up in

pictures.

I've been told by almost all of my Dr's that I may have something that

they've never seen before as Stills doesn't line up with all of my symptoms,

yet they to date have my diagnosis as Stills as it is the best " fit " . At

first I was upset but soon realized that so long as the set of Dr's I have

now still believe in me and continue to treat me I'll be ok. With all of the

variables out there I can relate to their points of view as the majority of

my life was spent as an ASE MASTER AUTO REPAIR TECH, and there are countless

amounts of times where the diagnosis I gave my " patients " (cars & trucks)

wasn't an exact science, but more of an educated guess. It is the nature of

the business, and it will not change anytime soon, as there are just far too

many variables to take into account when trying to nail something down.

I hope you're feeling better. I've been getting my teeth kicked in for

the last 4-5 days with a vicious headache (AGAIN!) and now have to go to the

football field where my sons play & I coach to help clean it up before the

start of the season. I've been awake since 4:00 AM and only slept about 3

hours so I'm in for a rough ride today.

You may want to help your Dr's out by beginning a daily journal with as

much information as you can acquire. I did this for the first year and a

half when I first got whacked and it helped my Dr's out tremendously.

Besides, after dealing with such varying problems so often on so many days

it helps oneself to keep a diary of sorts to prevent your forgetting about

what happened on this day, or what weird symptom happened three weeks ago.

Try it. It need not be large or complex. I can almost promise it will

help your Dr in making here decisions, and may quickly lead to more

aggressive treatment in the near future which hopefully will have you

feeling better in short order.

Have a good one, Kirk.

2008/5/31 Darv :

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Everything in life sucks except things that should!

May 31, 2008