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Stopping by to say hi!

Discussion in 'Chit Chat' started by Mijan, Jan 18, 2018.

  1. Mijan

    Mijan Registered

    Hi everyone, it's been a long time, but the website decided to send me a little "hey, come back and visit" message. So I figured I would.

    Things have been going pretty well for me. Only minor flare-ups for the most part for the past five years. Plaquenil has been a life-saver for me.

    At this point, my diagnosis is MCTD. I had 7+ of the diagnostic criteria for lupus, and then had a rheumatoid nodule identified by biopsy, plus the heliotrope rash and muscle symptoms of dermatomyositis. I lost my job because I was so disabled by my symptoms, and they didn't renew my contract... just as I was starting to get things under control. Anyway, that was fine. Frustrating, but fine. I work as an EMT now, and I love it, although I'm looking to find a less physically demanding job soon.

    Overall, I'm doing great. I've had some joint problems - a torn rotator cuff with two surgeries to fix that, and now a bulging disc in my neck with some spinal stenosis - but overall not too shabby. I've had to do a couple of rounds of physical therapy and occupational therapy when my hand joints get too bad, but that's been the worst of it. I've had almost no sign of the partial seizure symptoms, no aphasia, almost no pleurisy or pericarditis, and my kidneys are great. I go to the gym regularly, eat as well as I can (ignore the cookie in my hand), and get out fairly often. My sun sensitivity has diminished greatly, and with sunscreen, I can go outside and do my normal activities as long as mostly stick to the shade. I haven't had significant Raynaud's symptoms in about four years.

    If I feel a flare coming on, I slow down, hit the NSAIDs, contact my doc in case I need a short course of prednisone (usually don't need that if I catch it quickly enough), and ride it out. I've figured out my early warning system: splinter hemorrhages in my fingernails. If I have only one or two through all of my fingers, I'm fine. If I have a sudden burst of them in several fingernails and I can count at least seven, then I've got to be careful. If the burst of them is followed by joint pain in my hands, then I go into defense mode.

    Along with the MCTD, I also got a firm diagnosis of Meniere's Disease, which explained a bunch of the concurrent problems I was having. I've got that under control as well.

    I know things can change, and it could turn for the worse at any time, but generally, I'm doing as well as I could ask. I'm grateful that this website was here when I was struggling early on without a diagnosis. I can't thank you all enough.
     
  2. x_claire_x

    x_claire_x Moderator

    Hello Mijan..............lovely to hear from you and so pleased things have settled a bit for you. It is so helpful when you know your own individual warning signs of impending flare...that takes a while to figure out; as does sorting all the symptoms that jump on top of the MCTD/Lupus.

    It is so nice to hear how you have been getting on so thanks for that :0).

    Keep well .....Claire :thumbsup:
     
  3. lazylegs

    lazylegs Moderator

    Welcome back Mijan. Glad to hear you have learned to live with the disease. Thank for posting as I think it will help others struggling in those early stages.

    Take care,
    Lazylegs
     
  4. keebler

    keebler Moderator

    Hi Mijan.
    Thank you for coming back and posting how you are getting along.
    Learning to live with lupus is the best we can do and it looks like you have.
    Take care,
    Lyn
     
  5. Mijan

    Mijan Registered

    Thanks, folks! I'm glad I got the little email reminder. I just got busy with my life again, as it happens.

    I recognize that I'm lucky. My condition responded very well to medication, and so far, I've mostly been fine with just plaquenil once it started to work. I know that not everyone has that good fortune. I also recognize that things could change for me in the future, and that nothing is guaranteed. For now, I'm grateful for the reprieve and will continue to make the most of it for as long as it lasts.

    While I certainly wish this had never happened to me, I think in some ways it's made me a better human being. I'm more patient with other people, less judgemental. I remember how much I struggled through the worst of it, and how much I appreciated the patience and support of my friends and family. My wife was amazing through all of this, and she stuck with me. There was a period of about a year that I barely remember because of the extreme brain fog, memory loss, and exhaustion. I know that wasn't easy for her, either. Sometimes, I think it was harder for her. She's amazing, and I'm a lucky guy.

    Anyway, how has everyone else been doing? :)
     
  6. lazylegs

    lazylegs Moderator

    Doing well. Thank you for your concern.
     
  7. debatat

    debatat Moderator

    Hi Mijan, it is nice to hear from you. I am glad that things are stable and that your treatment is working.
     
  8. mea

    mea mea

    Hi Mijan ,glad you are doing well.:thumbsup:
     

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