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1. • CommentAuthorhazelsoldest
   • CommentTimeNov 2nd 2009

    # 1Report Post
   I am a retired Registered Nurse (retired 10 years), worked in oncology and finally Hospice in the last 12 years I practiced. About 13 months ago I was dx'd with MCTD, I had never heard of MCTD. I was familiar with Lupus and had cared for patients with lupus, and I was sympathetic to say the least! Now I have an illness comprised of lupus, polymyositis,and scleroderma. I trust my rheumatologist, and I feel he is very up to date in the care and treatment of my illness. We are having a rough time getting my CK to anywhere near normal. I was on steroids for about 3 months, they didn't do the trick, next I took azathioprin for about 4-5 months and now I'm on Cytoxan for about the last 5-6 months.
   To complicate issues, I was dx'd with collagenous colitis 4 years ago. One year ago I was dx'd with sleep apnea and now use a CPAP.
   On Nov. 9,09 I will have an EGD and a barium enema because I had a positive hemocult. A colonscopy is not on my agenda because have a 3.7 white count as of Oct.15,09.
   Sometimes I feel totally overwhelmed and I don't think I could go to another Drs. appt without my husband ( I am so very blessed with him) . I would like to know who has a really good coping method. Thanks, Beverly
2. • CommentAuthorangiegaljour
   • CommentTimeNov 2nd 2009

    # 2Report Post
   Beverly, try to remember there are so many other people out there whohave it so much worse. Thank God for the medical technology we have and that it is available. Family is definitely something to lean on and be thankful for. I know what you are going through. Sometimes you just think you can't go on, but, somehow you will find the strength to hang in there for yourself and your family.
3. • CommentAuthoralcyon73
   • CommentTimeNov 3rd 2009

    # 3Report Post
   Beverly;
   
   I don't have MCTD, I have cryoglobulinemia. Like many people with autoimmune disorders, I have my atruggle against my disease. I'm currently in remission and I still have wounds healing from the vasculitis caused by my latest flareup. I've found that coping with this disease has been a great challenge, both physically and emotionally but somehow I seem to get by.
   
   When my disease is flaring I have symptoms of arthralgia that are virtually indistinguishable from rheumatoid arthritis. The joint stiffness, pain and muscle weakness is positively crushing. I ultimately develop vasculitis that causes painful skin ulcers and gangrene on my hands and feet. The vasculitis is painful and can be life threatening if untreated, so I have to be on the alert for the slightest indication of vasculitis..
   
   To cope with this I set goals for myself. I determined that I could not afford to let this disease stop me from living my life and that I would adapt as best I could and either overcome the problems, or work around them, but that I would not let this disease defeat me. I had to learn about my disease. I educated myself regarding my condition and I strove to overcome. I had to learn to compromise.... when to push ahead against all odds and when to knock off and take a power nap. I had to learn to work closely with my doctors, and with their help and appropriate medication, my condition has proven to be treatable.
   
   I can't offer more to you than to say that you are not alone in your struggle. I wish you wellness and I hope you and your doctors can soon bring your condition into remission so that you can move forward. Hang in there!
   
   best regards
   Glen
4. • CommentAuthorkere
   • CommentTimeNov 12th 2009

    # 4Report Post
   Hi...
   
   I am a 47 year old nurse that sometimes feels like she just cant go on any longer...I have a +ANA and when they titered it out it showed I had scleroderma...The rheumatologist I have been too ( I have been to 2) says its not...They cant seem to diagnose my disease...All I know is I feel like I have a severe case of the flu all the time...I am progressively getting where I cant do anything but sit here and cry because I feel so bad...I have always been very active, and love to do things with my family...Matter of fact they are going camping on the river this week-end and I just dont think I can do it...I am so sick and tired of being sick and tired...The physicians say I definitely have a connective tissue disorder they just dont know which one...I have a few symptoms of lupus, a few symptoms of scleroderma but not enough to say YOU HAVE THIS!!! Do you have any suggestions of what I can do to try and figure out which disease I have? I just dont feel I can keep going...I am one to never call in sick to work...but I had to call in today and all I can do is sit and cry about it...I live in Florida and if any of you know a good specialist around the Panama City area I would really appreciate it...Thanks for listening...
   
   Terri