kinda long, thanks for being here for me.

[Guest guest]

I will try to make it as short as possible. I did not live with my

parents growing up, which is a long story. I have two half sisters

and one brother of whom I have very little communication. My moms

daughter and my brother have chosen to live their lives in a way

that I do not agree so we do not talk, we don't have anything in

common and my brother always calls when he needs money (he is older

than me and I have not spoken to him in 12 years) Anyway, I always

look up info about them on the internet, morbidly I always check to

obits for my brother. Well, I have a myspace account, so I just

happened to put his name in there and there he was. I didn't

contact him but my half sister was on his " friends " list. I have

spoken with a handful of times over our lives, but I sent her a

message telling her that I thought I was her sister and she sent me

a message that yes in fact I was correct that she is my sister and

she could not remember my married name. She was very surprised to

read that I had RA on my site. She is also suffering from severe

undiagnosed joint pain and has been for quite some time, and also

that our father had severe Ra, not sure how but she said it was

diagnosed with DNA and that had he lived he would have been in a

wheelchair in a year, he died when he was 40, all of this time I had

been under the impression that he died of cirrhosis, he was an

alcoholic.

Now to how I am feeling, I first of all, feel relief that I am not

the only one here and that my sister will no longer have to go

through this alone, I can be there for her. She has been struggling

with this. She is 25 years old, I am 36. Our father died 23 days

before she was born. Second, understanding for my dad, if he was in

half the pain I am in and not getting the help he needed maybe

alcohol worked best for him,(NOT JUSTIFYING ALCOHOLISM) ( I have

always struggled with how a person could drink enough to give

themselves cirrhosis at 40 without some other underlying liver

disease). This was over 25 years ago and the treatments are 100%

better now. Third I am feeling intense fear. If all of us have RA

so severely at such a young age, what is my life to be like and what

have I passed on to my children. My daughter already shows signs of

early RA, I had her tested last year, it was negative. I thought

this may be sympathy symptoms however it has not gone away. My sed

rate has never, ever been elevated. My Rheumatoid factor is 546

iu/ml normal is 0-15, my cylic citrullintated peptide (CCP) is 25

normal is less than 5 and my C reactive protein is 1.41, normal is

less than .50. I have flares where my all of the systems get

involved, shortness of breath, chest pain (bilat), aching in the

eyes, exquisite pain in my joints. just unbelievable. I honestly do

not know how I am going to live to be a ripe old age.

I have an appt with my rheumy September 6, where I can share all of

my new information. When I was first Dx'ed with RA, my rheumy was

great but she moved back to Poland and I got assigned to another, I

did not take an instant liking to my new one, but I am giving her

the benefit of making a possible poor first impression and next time

will be better. However I have began to speak with another office

for a second opinion and if this next appointment does not go well,

I will have a plan in place to move forward. My needs are not being

met. If my labs are ok and my symptoms are still horrible,

something is not right. I was dx'ed in May 05. I have no comfort in

just being able to call the office when I need something, I am on

MTX ,1 cc injection per week, plaquinil 400mg per day, folic acid,

lunesta, advair, diclofenac and lots of hydrodone. So, I think I

should be feeling a lot better than I am.

Anyway, I know this is a lot but thanks for listening. I mostly

read with an occasional comment when warrented. We all have our

role that fits us best. Thanks for being there.