Any Suggestion update!

[Guest guest]

Thanks to those of have responded to my earlier post.  I called social security

today and I am going to sign up. We'll see where that goes. In regards to my

daughter possibly having Still's also, I am not giving up on her and settle for

a fibro diagnosis. This will not be the last post regarding her I am sure. I

sure hope that is not the case and something simple can be determined and

remidied. I know that it is a long process and she and I have delt with her

situation from the time she was about three with a breif let up and now she

seems to flare with whatever it is about 30 days. Ok Ladies lets be honest. How

many of us have wondered if this was related to the monthly cycle we all go thru

and if there could be a connection to that and what we suffer from before a

Still's diagnosis. I know I did. She even asked me if it could be related. I say

no as the patterns eventually changed for me  over time. What I experienced for

years was one good week,

could feel it coming on for a week, bad flare for one week, and it took a full

third week to pop out of it and feel half way normal, and great a great week and

bam. Back to the down hill slope of the it's coming back again. Has anyone ever

exerienced this cycle. Made me wonder about the connection of the female

cycle. Then things changed a little. Maybe a couple of good months and then what

I would call mini flares. Up to may 5 hitting everyother week and them Bam a

full blown flare that would last for at least 5 days of total incapacity. Then

the lingering and coming out of it would take about two three weeks. Here is

what I compare it to. It is as if some torcher demon crawls in my body and tries

to come out which would be mini flares. And one way of the other the torcher

demon finally gets to the point that he's coming out full blown. The more mini

flares before the big one the worse the big one is. Does anyone get what I am

saying. If

not, maybe mine isn't still's either. I WISH! We all know we are all different.

Guess what the doc's don't.  They are looking for something out of a text book

and Still's just isn't written in a smooth stone, it is very jagged. But it

isn't going to still my JOY. I will keep plugging. I feel that we all have to

live within our means and maybe I can be more productive on a smaller budget

from SSDI and function better in another capacity if I don't have to push so

hard everyday, even when my body says I can't my mind still has to say I can. It

is mental anguish which we all know stress makes this worse.  So maybe I will

find my nitch in life and be able to help my daughter more if I can slow down a

bit. That or end up fired for missing to much work because of being sick. How

the mind wonders.

The main reason for my post is to reveal what a jerk I was tonight. I go out

tonight for the first time after my rotor cuff surgery the 23rd. I ran into my

associate pastor slash, daughter primary care doc. He stated that he talked to

my daughter at church Wed. and she told him they thought she had Fibro and that

he didn't think it was it that it was more like Still's. So I ask him to send us

somewhere else and he stated that he referred us to the best in St. Louis and he

didn't know what else to do but to tell me to make her function, go to school

even when we thought she couldn't, as that is the best thing for a chronic

illness of any kind. Do It Anyway even when you don't think you can, he stated.

I simply told my pastor/doctor that it is a damn shame when your doc can make

that statement. How the heck can they determine that. I thanked him for no help,

told him I thought the docs are the ones with the chronic disease of I can't

admit I don't know the

answer and don't care to find out, and told him I would be praying for him and

his stupid denial and loss of compassion, thanked him for giving up that I sure

hope he never gets sick and can't go to work. I hope he just goes anyway and

that I think he has made a complete ass out of himself and thank God I didn't

have to pay for it this time other than the dinner I just wasted my money on as

now I have to go and throw up. Church just won't be the same anymore. God

forgive me please for letting him make me feel like I had to lower myself to his

level. So on to a  new church and a another doctor. AGAIN.

God Bless all of you.

Stay positive and stick up for yourselves, as we are not crazy, were ill.

Don't loose your JOY!

April in Illinois