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Not yet DX but wants to die

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    Thanks all for the responses.

    MarySunshine: It's definitely a stages of grief thing. She has cycled through them faster than I thought, but I also expect some recycling, too. I was surprised to read suicides were highest in the first year after dx, I would have guessed later years.

    Good point on the autoimmune thing, I had forgotten in the swirl of things that she also has Hashimoto's disease also (autoimmune attack on the thyroid).

    It's good to hear about the good husbands out there.

    I don't know that I'm at the "blessing in disguise" stage but one silver lining is we are closer in this difficulty, and I do want to hang onto that no matter what the official dx.

    Hotwing / Robin: That's good to know there is a resource for kids, mine are teenagers, all we've decided for the moment is to not tell them anything yet. I am trying to think of ways to make life as normal as possible for now and in the future.

    Razgo: We bought a truck and toy hauler trailer recently, but it has been more fun to use just as a camp trailer than I ever would have guessed. I had the thought that a motorhome would be a great way to enjoy the countryside with someone with mobility limits. I agree it's a good idea to grab what fun you can sick or well! BTW I had the pleasure to visit Australia many years ago, that was great fun.
    Originally posted by MarySunshine View Post
    Hello David,

    Sounds like your wife is experiencing the different stages of grief. It's normal. Some of us go through it every time we lose some (even a little bit of) functioning somehow. I've told my husband to find someone healthier at times, but he stays (thank God). The first couple of years are the hardest, especially if the diagnosis takes a long time...

    I have dual diagnosis of MS and another autoimmune coniditon (actually 2)...which made things a bigger mess at the beginning. I found peace with reading boks like "Quantum Healing" and biofeedback therapy as well. Feeling as though I have some control over my future helps me stay on track.

    I wish you and your wife the best through this journey! It can be a blessing in disguise, too....


      Closing the thread

      How quickly a year can go by... but I thought folks would want "the rest of the story." We hit the spinal tap results day -- the DX was no MS. Obviously that was great news, but after a while that became "Now what?" Clearly my wife was on a bad road -- brain lesions, dizziness, fatigue, loss of vision event, pain and numbness down the left arm, hearing loss, and more. Most of these symptoms had occurred in the previous couple of years.

      Since this is a relationships thread I'll leave the medical details for the "Related Disorders" forum and stick to the relationships thing for this post.

      Short story, she had a big hole in her heart that we had repaired, and is now doing great.

      So here are a few relationship things I learned along the way:
      • Go with your spouse to the doctor to help with DX. My wife is a smart woman, I didn't think I needed to also go (busy lives and all that). Also I personally prefer to go to the doctor alone and prefer my wife doesn't come. She kept getting doctors that would say "you look fine." I finally went with her, and found out she would fixate on her last subjective symptom, dizziness or fatigue. I was able to help focus the discussion on objective symptoms like loss of vision for a few hours and hearing loss, and had a printout of a symptom list for the doctor.
      • I think it brought us closer together, and helped us realize some of our problems really were pretty minor in the scheme of things.
      • I think it was the right decision to not tell others about our fears until DX (PFO) was final and repaired -- with the caveat that we had a strong support network with each other.
      • Maybe this doesn't apply to everyone, but I found comfort in researching and understanding things. For instance, I saw research that showed a correlation between getting some sun and less MS / less severe MS. My wife started doing that. In addition to a little tan making an already beautiful woman look even better, I think the light helps one feel better. Also I think it helped her feel better that she was doing something to help.
      • The research has helped us find some long term healthy habits that we doing and passing along to our kids.


        Adding to my list:
        • Some of the damage is permanent. I need to remember when my wife starts speaking in the middle of my sentence it's because she doesn't hear well. I try to look at her to speak, or be sure I have her attention first and speak louder. I also have to occasionally remind my kids that mom can't help the hearing thing, and to be sure to patiently work with her.
        • She is now prone to motion sickness, so we've had to adjust some of our fun time as she doesn't like skiing, car racing, or motion rides any more.
        • I don't want to assume we're done -- now she doesn't want to go to the doctor sometimes when I think she should go.
        • My wife wanted to switch to cheaper health insurance (my company was acquired and that brought new health insurance). While our old insurance costs more, they totally treated us right with many expensive tests, and no problem getting the PFO closure right away.