RE: HI ! from Dottie

[Guest guest]

Hi Gang,

The reason,I wrote to everyone was to give you some hope and know that you

never know what can happen... I didn't mean to make this so long

Mine is a rare case, and my doctors advised me of that now, my stills did

effect my joints but not as bad as some of you.

I first started feeling bad in 1991, I was tired all time, even if I got a

good night sleep, I could barely put one foot in front of the other.

I was diagnosed with Pernicious anemia(B-12 deficiency) , I was treated

with B-12 injections and will have to take them for life.

I had my own business and worked 12 hours a week, I had just gotten married

again, my husband and I had 8 young kids between us (luckily they didn't all

live with us at once LOL) and I was a bodybuilder.

About a year after the pernicious anemia, I started hurting behind my

calves and my neck, it hurt so bad, I went to the doctor, they did blood work,

my

CPK's were in the thousands. But I was told it was either from working out or

I had a muscle flu. This went on for a couple of months. I had backaches,

continuous sore throats. It just keep getting worse. I could barely function,

but I had to.

I was told I was just getting older, I was 34 years old. I fired my doctor.

I was sent to Stanford University, after numerous tests, they came back with

Fibromyalgia. At that time it was pretty much considered in your head.

I was put on Elavil, Viox, Celebrex, Flexerile, Prozac, these were at first

I was so sick and they just kept putting me off. I was put in the hospital

several times, I was told several times it was in my head. I hurt so bad

everywhere, I was so exhausted all the time,just brushing my hair some days was

a

chore.

I ran fevers of 105 and 106 at night, I always had fevers. I was put in the

hospital for months at a time, trying to figure out what was wrong, it took

7 1/2 years to get a diagnosis. I was air vacate out of Maui 3 different

times,

I am trying to remember all the med's. I was on Predisone all the time as

high as 80 mg's, as low as 5mgs., I was on IV Sodraul Mederal, for years

my veins are shot, I have to have a Port-a-Cathe for the rest of my life.

I call it my badge of honor.

I was on Duradisic Patch, Soma, Morphine, Sub-Morphine, Methotrexate, B-12,

folic acid, Valium, all kinds of things for nausea, they didn't have all the

new things that they have now, like Remicade(think that is the spelling)

I was on so many med's.

My sickness took a big toll on my family, my stepson died of an overdose, my

oldest daughter went to jail, my youngest got hooked on meth and got

pregnant.

The last three years I was sick, I raised my granddaughter, from a newborn,

I think that was what keep me going, because she would have ended up in a

foster home.

I should not have had her, I was so sick, and on so many drugs, but it was a

miracle in disguise.

My marriage was on the rocks, I really didn't think I could take much more.

The only thing I can think off that I did different was I decided to quit

smoking, I went on Wellbutrin, to stop. I did stop. I

In about May 2004, I started to feel better, I was sick of doctors, at that

point they wee just drugging me to keep me quiet, they didn't know what to

do! I slowly got off all my med's that summer while, I quite smoking,

I WAS TOTALLY LOST, my marriage was just hanging on, he had been feed up

for awhile...

By October, I was feeling great, I was walking and exercising, I was off all

med's...EVERYTHING!

I have had a hard time getting back into life, I was housebound for so many

years, I didn't(sometimes still don't) know exactly where I fit in.

I decided to work on my marriage and just when I was ready to give up, he

came around, so I am happier now then ever in my marriage, I am weightlifting,

I look great, feel great!

My doctor's do feel that the Dragon is gone, but I don't take it for

granted, I try to live everyday to the fullest.

I am always here if anyone needs any help, just remember there is remission

no matter how long you have been sick. I was sick almost 14 years.

I never had a remission, I also had several syndromes, Srjogen Syndrome,

Fibromyalgia(really bad) several anyway.

If I can ever help , please just yell!

Much Aloha, Dottie

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[Guest guest]

Hello Dottie

I cannot believe that you have suffered so much and are now so well. I

don't know how you and some of the other stilligans can be so strong. I

have been through really bad times throughout my life and survived but now

at 66 I find the fight is a lot more difficult not only are you fighting the

dragon but the natural process of aging is also against you. I find it so

hard when my medication isn't working. The Pred. & MTX is no longer helping

with stills and my Rheumatologist want's me to try Humira but because it is

so expensive I have to put my case before a medical panel which works on a

points system e.g. how many swollen joints etc. and not only that I have

very frequent urine infections for which my Urologist wants me to take

permanent antibiotics which of course I couldn't do with Humira. I am just

mentioning these problems because I am finding it much more difficult to

cope with now. I would like what everyone else would like to enjoy a few

years of fun instead of just chasing your tail. I am not a miserable person

and of course I do enjoy certain parts of my life with a wonderful husband,

son and grandchildren for which I am truly grateful I suppose I feel that I

am running out of time.

Anyway I haven't been through half as much as you have so I am going to give

myself a good talking to and say that if Dottie can do it then so can I

Thank you very much for your posting and congratulations

Best wishes

Joan U.K.

[Guest guest]

Dottie

 Thanks for your post you really said it all with this " I don't take it for

granted, I try to live everyday to the fullest. " I believe that is the key

remission or not it is some thing we need to all do live each day to the

fullest. For each of us that will be deferent but do able. I know when I was

really bad it might only mean I spent some time watching TV with my kids other

times it meant I got out and went fishing with friends camping or traveled. Now

day it means getting some thing done around the house or doing some things with

the family as I have a tendency to lock my self away in the bed room in front of

the computer or lying down and sleeping. one of the keys for me is I make a list

and try my hardest to do something on it each day be it a simple house chore to

some thing big if I am up to it. At the end of the day if I feel I have done

nothing I look at that list and see what I have done and it is normally a good

boost for me as for my self how I feel emotionally is a big part of how I feel

physically and if I feel

better emotionally it tent to feel better physically and fighting for an up bet

mentality I believe is one of the best drug we can use to help us to the day we

finally believe hey we are doing better and post like yours are just

nice to read for giving hope and encouragement so thanks Hugs

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

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