New-Intro-kind of long?

October 21, 2009

My name is Cheli. I am 34. When I was 4 my mom was told I had onset systemic JRA

(now called JIR or STILL's) at Children's Hospital in Chicago. My general doctor

at that time thought he knew what he was doing and never told my mom to take me

back to follow up. I had high fevers, rash, joint pain, enlarged liver and

spleen. My blood counts were always off. I also had LOTS of strep throats. The

doctor gave me antibiotics for a whole year thinking it would help me with my

strep. Not sure if it did or not. I remember being sick a lot and having lots of

pain. Oh and to never get hit in the stomach cause my spleen could bust. I was

such a tomboy growing up. Lol. When I got sick as a kid I felt horrible. I would

ache so bad. I did start to feel a little better as I grew up. The last time I

had major issues I was 16 and 21. I was told last year I had degenerative discs

in my lower back. Thanks to my dad. Lol. I fought with the doctors to get an MRI

and finally after 11 years they did it. Before then they said to lose wait and

it was all muscles. When I first threw my back out I was 130lbs with no kids. I

was in great shape so I never believed them. Now I'm out of shape and had 3

c-sections. Lol I still wouldn't believe them if they said it. I was seen by so

many general doctors for it so I found a back doctor to run tests. The general

doctor I have now is the chief resident and will only be at the hospital until

June. I'm very sad he is leaving. He has been the only doctor who will believe

me when I say something is wrong. ok, so anyways. Lol I have been having

problems where I can't sleep and I wake up swollen and stiff in hips, hands,

feet, and knees. I already take 15mg of Mobic and lasix for my back. I found the

mobic in my bathroom closet cause a doctor gave some samples to my hubby. The

lasix was from a different doctor to see if I could lose some water weight. The

2 together helped some. It took the edge off. I also take the joint medicine

you can by over the counter. It helps the back a little. I also have a bad knee

so it will help some for that. So after I told my doctor about how crappy I felt

with the body parts and ache all the time he told me to see a Rheumetory doctor.

So off to the rheumey I went. He took my old records, sent me for x-rays, labs

and asked me tons of questions. I now have RA. I'm so happy to finally put an

answer to all my questions and issues. I'm not happy I have RA but now my hubby

can't say I'm complaining about nothing. Lol. So far I have no joint damage. I

will be starting on hydroxychloroquine tomorrow. Has anyone been on this and did

it help? He said it can take up to 3 months for it to start working. I also need

blood tests and eye exams. I have to go back in 1 month. I also have been aching

so bad and it starts around 11am and lasts till about 9pm. I feel so tired. It

starts around 12 and goes to 8pm. I then fall asleep around midnight. I wake up

at 5.45am. Well the alarm goes off then but can't pull my butt out of bed until

an hour later cause I can't wake up or I'm hurting to bad. Has anyone felt like

this? The doctor said this is the RA. I filed for social security because of my

back and for depression, anxiety and PTSD. I have not worked since 3/06. I had a

son that was born with 2 rare congenital heart defects. He had 2 open heart

surgeries and passed away at 5 months. I have a 9 year old boy that has his

issues and a 2 year old girl. I got denied the first time but appealed with a

lawyer. I won but with no back pay. My husband is also disabled from having

cancer in his leg when he was 19. We have been on IL state insurance but now I

will be making to much money to be on it. They old me they have a step down

insurance program. I will find out more when I start getting the check for

myself and the kids. I called my case worker and he told me the name of the

program but never told me anything more. If I figured it out right I would have

to spend 2 months worth of my SS before the state will kick in the rest for that

month. It is all confusing. Does anyone live in IL and on this insurance or know

anything about it? I was also looking into private insurance but I think that

will be to much. I am having a hard time dealing with all the news about me

having RA. I know it affects everyone different but I am only 34. I'm sure some

of you are young and have this too. The doctor told me if I take the medicine he

hopes to slow it down. Ok sure but how bad am. Going to get. I have been dealing

with this kind of stuff my whole life why do I still have to deal with it? I

guess I'm just emotional about all of it. My 9 year old can't understand when I

tell him I don't feel good but look healthy. Is there any books out there that

help kids understand? I have tried to explain it but not sure he gets it. What

can I expect in the near future of RA? Not sure if anyone would know this but

the doctor gave me a test like they do when they check for strep and it came

back high. I don't have strep now or have had it in a very long time. Is this

normal? He said maybe this is your number since you had it so much as a kid.

Sorry if this is long or all over the place. I am typing this from my phone

since it hurts to much to sit at the computer for a long time. I know I have

told you all maybe to much lol. If anyone has any info please respond. I will

try and get back to all replies as soon as I can. I hope to learn a lot about

myself and the RA from this group!

Cheli

October 21, 2009

Wecome to te group Cheli.

Raniolo

From: hlhsinfo@... <hlhsinfo@...>

Subject: [ ] New-Intro-kind of long?

" RA-support " < >

Date: Wednesday, October 21, 2009, 10:44 PM