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I too had symptoms starting at around 16 but I was only diagnosed two years ago when the swelling every morning in my hands got to severe to deal with.
Ironically I found out by going in for an ulnar nerve retransposition surgery which I didnt wind up having. Because the PA who saw me said the swelling I was having was not related to my injury.
I will be 26 in January so I guess I was diagnosed when I was 23. I had my son when I was 21 and I think the hormones from the pregnancy is what really kicked things into gear as that is when things started getting more noticable. But then I miscarried a month before I was diagnosed so I think that the stress and emotional pain is what caused the initial first flare for me.
I will never forget going in and having my rheumatologist tell me that I tested positive for lupus. I have had positive ana's one after the other but never had the positive sle dna test come back positive. The doc on wednesday said that he was getting a little nervous/suspicious that this mtcd might be morphing into SLE.
I am really scared as I had an uncle who died from lupus after being off his meds for only 6 months. Other than that I am the only one who is sick in my biological family? I dont know where this came from.
I am very scared as my disease has started progressing really fastly as the deformities just happened within the last 3 months. Yikes? Do you know what the life expectancy is for mctd? I have looked and they all say it is comparable to sle but I do not like those statistics that I got at mayo clinic for 80-90% ten years up from 50% dying in 4 years after diagnosis in the 70's and 80's
I have been in denial for along time as I am so upset with myself. I feel like this is my fault and now my son wont get the mother he deserves. I am crushed and confused.
I was married for less than a year when I was diagnosed. BUt have been with my husband for 7 years now. I know it bothers my husband but he never talks about it and often doesnt like to "read" bad info about my disease. he prefers the whole ignorance is bliss approach which leaves me alone and scared alot.
Dont get me wrong he is impeccable when it comes to caring for me but the guilt and embarrasment I feel is overwhelming. I get so mad at my limitations and I wish I could be a suck it up fighter but I have not gotten that far yet.
I am angry that I am sick and almost wished I had a cancerous tumor sometime because at least then they could cut it out. Not just let it slowly waste away your body.
I am so hurt because I just keep waiting to get better, like when you have really bad bronchitis and you take 7 days of antibiotics and then around day 10 you feel back to your old self and life goes on and you look back and say whoo I dont want to feel like that again. But then I realize that will never be me and it crushs me. I am angry because I hurt every day.
I dont know what to say really. I hope to goodness I m not a downer to the people on the page but this is the first time I have ever been able to freely talk about my feelings and it feels good to get it out.
Thank you Kathy for your suggestions they are appreciated alot.
Come try to visit us on our main "Mother Site;' with almost 700 members, we have a live no host chat, information, resources, games, Karaoke, videos, podcasts and more.
http://www.LupusMCTD.com
As for lossening the hypermobility in my ankles I wear ace bandaids. People ask me if I hurt my foot. I even have a walking cast when the one ankle gets bad.
My left ankle needs the surgery to tighten up the ligaments here pretty soon as it's hard to fall asleep as I can't have a blanket or sheet lay on top of my foot as it pulls the foot more inwards stretching the ligements.
How long were youmarried before you found out you were sick? I ask because most husband s have road it out from the beginning in our lives and it bothers them to see what our bad days are like . Mine likes to go to the Drs with me and do the talking for me, as he gets all fired up.
As for my two when they were little I wasn't diagnosed till I was 44 yrs old yet my symptoms started at 16.
So my kids grew up knowing when I was sick they knoew if I had a migraine to play quietly, keep the house dark, that was the biggest, besides not feeling well enough to cook dinner so we ate fast food alot.
THe family pitches in and helps. It's just our guilt we carry for not being that super energetic Mom and wife we should be. IT"S NOT OUR FAULT!! Remember that!
If we we told we had cancer, our families would still not turn their backs on un. They love us.
So hang in there,
Come over and visit us at our main site when you ccan for all the information and resources, live chats, etc.
www.LupusMCTD.com