Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi, I'm Gwen and I'm new here, though unfortunately not new to RA... I was diagnosed with JRA at age 14 and am now (gulp) 39... for awhile i thought it had gone into remission but in the past year it's gotten a lot more active, and i'm going to begin using Enbrel very soon. Anybody else on that who can give advice? I'd have done Remicaid but my life is a little too hectic-- just started a new job in February; with the old one it would have been easy but this new one requires a lot more face time in the office... 10 hours a day in fact, i'm a producer's assistant on a popular TV show! (on the good side, much of the time i'm sitting here not doing toooo too much so can post and read emails!) i'm currently on 10mg prednisone a day, just upped methotrexate to 8 per week, and six tablets azulfidine per day. i've had mcps on both hands replaced and unfortunately right hand has drifted again. had surgery on left foot which was awful and painful. most recent surgery was five years ago! i used to play the violin and piano but had to give up the violin at 17 and am trying to learn the harp... anyway, good to be here and i'm interested in hearing everybody's stories! Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Hi Carole, Welcome to the group!!! Lots of caring people on here... I'm Helen, 56, from NW Ohio... My ailments are at the bottom... There are lots of folks on here that are facing the same as you with SS... Its a shame that folks have to lose everything waiting around for the SS to get their act together to help... There should be a law made to protect folks that are trying to get SS... I thought they were doing one... My brother is going through the same thing and he has to wait to have his surgery also, which could be the difference if he loses the ability to walk from waiting so long... His Dr. even told him to get a lawyer and sue the company, because this is outrageous that workmans comp is making him wait until a hearing when the injury was on the job... Even SS is waiting for the court settlement on the case... He called tonight and said that they got a court date in April!!! He's been waiting for surgery since last June!!! They have lost their home and car... The bank is allowing them to stay until June, so that will help, but they can't heat the place as no money to pay for gas... His wife works and earns enough to get groceries and pay the other bills... Its just a shame ( Hopefully someone on here can help you with the paper work... Sent a few sites to hopefully help some... Hope you find a doc that really can help ya... Don't let the depression part get you down, who wouldn't be depressed if they were battling all these things too... And don't let them get away with saying its all in your head... Besides, my doc just told me a couple of weeks ago, that the next time someone tells me its all in my head when I say I have fibro, I'm to Smile and say, "Yes it is!!!" There's a new study out and he heard about the findings when he went to the dr's. convention and they are proving that there is something or other that is missing in, oh i don't remember, but when the article is finally posted i will post it to the group... They are finding things finally... ((( Welcoming hugs ))) Helen Hi,Glad to have found this group! I am 40, from NY, have a 10 yr old son, and have probably had fibromyalgia and CFIDS for over 10 yrs. Most recently I've been dx'd with Mixed connective tissue disorder (MCTD)in December 2005. My problems really began in my late 20's where I started to feel really run down and got every flu, cold, virus in the book, I spent most every weekend in bed after working a full week. I literally could not get out of bed due to the fatigue and pains. No one believed that I was that sick...not even my husband. When I finally got pregnant, I had a really difficult time both in holding the pregnancy itself and managing the weird symptoms I was getting. I had to stop working in my third month because I was so ill. I had pains and problems that my primary and OB could not understand, so they chalked it up to anxiety disorder (grrr). Despite all that, my worst symptoms did not arise until after the birth of my son in '95. I had an emergency c-sec due to a botched epidural. When I came home from the hospital, I immediately knew something was wrong. I had rashes, itched from head to toe, had severe aches in my lower back and legs, shortness of breath, problems with my vision, migraines from he**, and no appetite. I had to move in with my in-laws during that time just to help care for my son (and honestly it was the most depressing time of my life). It took forever for me to 'recover' from that and it sent me spiraling deep into post-partum depression. Paxil saved me at that point along with a good therapist, but my symptoms never really went away. Due to a 'remission' from most of my symptoms, I was able to return to work for a short time from 1997-2000, I did not realize that my migraine meds were what was keeping me from feeling the actual damage I was doing to my body. Inevitably, the symptoms returned and there went my ability to function at work. I had to take permanent leave in 2000 because my boss would not allow me to work from home, and have since found that my body is just not up to dealing with the stress of what I used to do (administrative work). In getting this new diagnosis of MCTD, I face a whole host of unknown variables now. There doesn't seem to be a whole lot written about it, and according to my doctor, it is being treated by the medical community in much the same way Fibromyalgia and other diseases used to be looked at(IAIYH). So I am in chaos right now, feeling awful physically and having a hard time finding a doc who treats patients with multiple diagnoses. I dropped my rheumatologist because she was of little assistance...telling me that she would not give me anything until I went into physical therapy. How insane is that notion?? it makes zero sense to me...and saddens me because I thought that this doctor was understanding and on the same page. So, as my doc search begins again, I definitely feel like I am on the brink of losing it totally. I absolutely need to be part of a supportive community!Sorry that this has turned into a novel. : ) Thank you for listening. Gentle hugs,Carole from NY "When life's problems seem overwhelming, look around and see what other people are coping with. You may consider yourself fortunate." Quote Link to comment Share on other sites More sharing options...
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