I'm confused ...

Discussion in 'Fibromyalgia Main Forum' started by PollyMcAnna, Sep 20, 2012.

  1. PollyMcAnna

    PollyMcAnna Member

    I haven't posted on this board in a long time, and I can no longer find the RA board. Did we discontinue it? Did all my RA friends get a miracle cure and I missed it? I feel abandoned.

    Everything is pretty much the same with my husband, Phillip, and me. He is still paralyzed with MS and I am still his sole caregiver. And we're coasting along just fine.

    RA is still very much with me. The fatigue is bad. Pain not so bad. I'm still - nine years later - taking only Plaquenil. Still refusing to go on to the bigger drugs.

    Would love to have updates from any of you who might remember me ... LuLu, Alary, Jewel,

    Are you still there?
  2. Mikie

    Mikie Moderator

    ProHealth recently discontinued boards which got little, or no, traffic. You are welcome to post here regarding your arthritis questions or remarks.

    Glad to have you back. Quite a few of our long-time members have returned after being absent for a while.

    Love, Mikie
  3. PollyMcAnna

    PollyMcAnna Member

    Thanks for responding.

    I've had RA nine years. Never sick before that. Not a good sport about this whole mess. I was put on Plaquenil first thing and did well on it. Later, a rheumatologist talked me into taking Methotrexate. I took it 8 months before giving it up. It did help the pain but I spent all my time in the bathroom with nausea and diahhrea. Plus my hair got awfully thin. One eyebrow disappeared and has never completely returned. When I quit Methotrexate the doctor was going to be happy to start me on Enbrel, but suddenly I dug my heels in and refused to go any further. She washed her hands of me. I've had a general practioner ever since. I see him once a year to get my prescription for Plaquenil renewed. Beyond that I refuse to go. I read everything I can get my hands on about the new drugs. The big drugs. I'm 76 and the risks outweigh the benefits now for me. I've experimented with all sorts of natural remedies. Omega 3 was my best friend for a while. Lately, I'm ignoring everything except my Plaquenil. And I'm doing well. My husband, Phillip, was diagnosed with MS in '86. Today he is confined to a hospital bed. He has a doctor who makes housecalls. We're thankful for that since he can no longer sit up in his wheelchair to go for office visits. I am his sole caregiver. We live in a tiny apartment and have everything arranged for convenience. Phillip's hospital bed has center stage in what would normally be a living room. We don't own a sofa and neither of us cares. (smile) The name of the game is to hang onto our independence just as long as possible. I have a blog. If you type in my real name - Melinda Jonelle - on the internet. My blog will pop up before your eyes. And if you go back through the posts, you'll find one about Phillip's MS. I recently wrote a book called "The Best Five Are Mine" and a picture of it is posted on my blog.
    Do you have fibro? I read that if we have one auto immune disease chances are good we have more than one. Do you suffer from fatigue? For me, feeling wiped out bothers me more than painful joints. Thanks again for writing.
    [This Message was Edited on 09/24/2012]
  4. PollyMcAnna

    PollyMcAnna Member

    I read every line of your post ... and between the lines too. (smile) One thing a lot of us have in common is hanging on tight from one day to the next. sometimes, from one fifteen minutes to the next.

    When I came down with RA I quickly learned one true fact above all others ... What's right for one of us won't necessarily be right for another. Furthermore, what's right for me one week may not be one bit right for me the next.

    We're each feeling our way along. Trial and error. following our own instincts about our own unique set of circumstances.

    Nine years ago, if someone had told me wearing cow potty on top of my head would help my pain, I'd have been out in the nearest pasture first thing next morning searching for a fresh supply. In time, however, I realized that while it's helpful to read about the solutions others come up with, I must weigh all suggestions carefully before applying them to my own particular condition.

    It's comforting to know we are not alone. We cling to the knowledge that others are managing to live productive happy lives in spite of these dreadful diseases ... and if they can do it we can too. But when it comes to "cures" we remain very much alone to choose which roads we will follow and which we will not.

    Thanks for writing, Leah. I appreciated your words.