Hi everybody, I'm sorry this might end up being really long...
My name is Tanya and I am new to this forum, I am 22 (23 this November), and I was diagnosed with mild RA, SLE Lupus, Sjogrens Syndrome, and Connective Tissue Disease in March 2009. The only drug I am on right now is Hydroxychloroquin, and I really do not like it all that much...It makes it very hard for me to eat, I just get sick to my stomach on it, I lost a lot of weight on that drug. I currently weight 115lbs and I know that's not enough for my age, at least I think its not, I am a small person, I only stand 5 foot 3 but I feel like I am too skinny. My rheumatologist told me to go off the drug for a little while to see if it really was affecting my appetite, and it was and now I do not want to go back on it. He also moved practices, 2 hours away from me which is too far for me to travel and now I have to be referred to a new Rheumy which I don't want because he was a great doctor, and I am afraid the next one I have will not be as caring and understanding.
I have inflammation all over my body, but the worst of it is in my hands. My hands hurt VERY badly every single day and it drives me NUTS. My fingers are beginning to twist on both my hands, more so on my left hand, and I've had surgery once on my right hand, 4th finger beside the pinky to release it as it was stuck in a bent position. I will be having more surgery on the rest of my fingers as well as they are all following suit of what the first one did.
Then the pain goes down into my wrists, both my wrists have some damage and crack everytime I move them, elbows, shoulders, hips, knees, ankles, toes...Everywhere...Some days it even hurts to walk. I am fatigued 24/7, its like I can never get enough sleep.
I also learned that I have an antibody that will cause blood clots in the fetus if I get pregnant, and that I would need to be very careful and if I plan to get pregnant to tell a doctor right away so I can be monitored? That scares me! I also have Endometreosis so I can't believe this, my chances of having a baby were already a little slim and now this gets added to it?
I NEVER feel good, I always feel sick, sore, unhappy, every single day and I don't know what to do anymore. I was supposed to get married for my boyfriend of 4 years (now my ex) but we fell apart, mostly because of him, he couldn't (or he didn't want to) understand or handle what was happening to me, so he hurt me very badly and I ended it. I have NO plans of dating anytime soon at all now, I've lost trust in men because of how I was treated, its ridiculous.
I was laid off from my job in February because I could no longer keep up with it or physically handle it. I used to work with 36 horses at a boarding stable, I LOVED my job, but my Rheumy said no more physical work, only mental work from now on, and everything ended. I have been jobless ever since, and am finding it really hard to find something else to do. I was on medical unemployment insurance and now I am on basic unemployment insurance and am going through a program to hopefully be re-trained through government assistance funding as I really have no skills as I was not planning on this HUGE life change to hit me out of no where.
I feel like I am stuck in a pit of despair. No one in my family is as sick as I am, nobody has a history of anything I have, I am the only one. I am so young, I find it extremely unfair...I worked so hard in the beginning of my life to get to where I wanted to be, my passion was horses, and I had it in the palm of my hand, was living it, then BOOM, lost my job, lost my husband, lost all my self esteem, my happiness, I feel like I have nothing, that I'm empty.
I guess I need a kick in the pants, but I can't help feeling this way...
I also have an EXTREME difficulty in swallowing, so when it comes to taking my pills it is a real battle, so I would greatly prefer a drug that is administered by needle, instead of pill form, if there even are any.
I have had issues with my kidneys, and now my heart is causing me a lot of problems. I am going for an echocardiogram as soon as I am called with the appointment date.
I am so stressed out I am even losing my hair is large bunches, it just falls out WITHOUT me pulling it. I am working on getting an appointment to start seeing a psychiatrist as well...
I'm sure I forgot a lot of things I wanted to say, but I guess this is long enough for now, thanks for reading...Feel free to tell me I need a reality check and to smarten up, it might help.