New to group

[Guest guest]

Hi, my name is J.J. I'm new to the group but not to being sick. I first

got sick when I was 13 and was diagnosed with Undifferentiated Connective

Tissue Disease at Minneapolis Children's Hospital. The thought was that as

I aged, it would turn into Lupus (it didn't). It was active and I was

treated with prednisone till I was 18. Then I went into remission for 10

years.

At 29, I came out of remission. I was living in southern Minnesota. I got

seriously ill because I had lost my rheumi and could not make the doctors

believe I had UCTD in the past. Medical records did not believe that

records over 10 years old were worth anything and would not send them to my

current doctors. Anyway, I found a great rheumi who re diagnosed me with

UCTD (after a short trip to the Mayo Clinic) and got me stabilized on

prednisone, methotrexate, and a few years later remicade. There was a

divorce and moving back in with my parents in Minneapolis mixed in to add

spice to that time.

That held me for a couple of years but I kept needing more and more

remicade to stay active in my life. I had a job, started dating. So, then

I switched to Humira and moved to Madison, WI to be with the

boyfriend/current husband. I was falling more back into the sickness hole

with flares and I was not able to full recover from them. Switched again

to Enbrel with the hopes that it would stabilize me and I was able to work

for another year but then I had big flare. I just could not get out of

bed, so I lost my job, had to get married NOW for insurance, and started

paper work to get on disability. It took 2 years to get on disability.

So, now I'm 41. My rheumi re-diagnosed me with Still's a year or so ago.

I'm on Kineret, methotrexate, prednisone, plus lots of others to treat the

pain, depression, and not sleeping. My symptoms are fatigue major fatigue,

arthritis joint pain/stiffness/swelling in my wrist (and hand), shoulders,

and ankles, osteoarthritis in hip, pleurisy, pain and stiffness in ribs

along sternum, and all over achiness like a big flu. I'm anemic, obese

from years of prednisone, and my blood test come back normal. I don't

think I run fevers but I sometimes have that feeling without the fever.

I'm stable in my sickness. Still fighting it but able to do little

things. I'm walking with nordic walking poles about every other day for 30

minutes. I do light cleaning in the house. Meet with friends. Meditate

to lower pain and stress of being chronically ill. I'm in a good place

emotionally because I'm working on it. I try to be grateful for the good

things in my life.

So, this is my long intro to you all.

J.J.

[Guest guest]

Welcome JJ,

I’m sorry you’ve been ill so many years but would like to say that I admire

your outlook and management techniques you have/do use to help.

I also identified with the fever feeling these past couple of years. I also feel

this at times of stress but don’t have a fever and then it will pass as I’m

calmer again. I think it is what some members have referred to in the past as

having phantom fevers? Not sure.

I hope you find good feelings with our group.

Good evening to you,

From: J. Bird

Subject: New to group

Hi, my name is J.J. I'm new to the group but not to being sick. I first

got sick when I was 13

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