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    Julianne started following

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    Julianne asked a questionMultiple Myeloma

    What's a caregiver to do?

    10 answers
    • Smiley72's Avatar
      Smiley72

      i suffered from post SCT depression and got myself to a psychiatrist who visited me while in the hospital. He listened, then readjusted my meds and added abilify to help stabilize me. I was like your husband in that I suffered from depression and PTSD (yes, SCT is a major trauma to the system and psyche while being hospitalized for long periods of time results in "hospitalitist"). I also went into therapy with a therapist who specialized in SCT patients. Like your husband, I was depressed, but I was also very, very angry. This is the time he can find a quiet hobby (mine was sewing and embroidery To keep my hands busy. Although I was an avid reader pre transplant, my cognitive abilities fell short and trying to read with chemo brain was near impossible. I started with the online free program Elevate Your Brain and besides being fun, I now am able to sit and read again for short periods. His body is tired, but the more he sits around and does nothing, the more tired he will become. Get up and walk, walk, walk and get those brain chemicals going. Start working out with your own home gym. To cut to the chase, get a good shrink and get off your duff.

      over 5 years ago
    • Lovstoknit's Avatar
      Lovstoknit

      I too suffered from depression and was already on an anti-depressant. My spouse couldn't have been better, but he needed to work. When I was finally able to get out of bed and later out of the house, it helped a lot. When I was able to go back to work, that was the best thing I could have done although retiring really sounded good. Just be there and be available if he wants to talk. I had a friend going through breast cancer at the same time and we talked a lot on the phone. It helped to have someone understand the extreme fatigue and depression.

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      I couldn't go back to work and I did already have a hobby and YES that helped tremendously:)) the 100 day isolation was hard too!! Even though I knew I didn't feel good enough to go out, it was one of those things that cuz you were told you couldn't - you wanted to do it!! Lol I don't know his situation on IF he can go back to work...but if he can't he prob is mad about that too!! Retiring early is HARD especially if you like working n going strong every day! It took me a while to figure out how I could be productive and not "lose me" in the process! But I figured it out n actually found a better "me" !! Everything gets tweaked! It HAS to cuz life IS different:( BUT it can be good and maybe BETTER!! He just needs hope and your strength telling him together y'all will figure it out:)) my best thoughts are with both of you!!!

      over 5 years ago
  • Julianne's Avatar

    Julianne posted an update

    My husband completed his sct last month and is now recovering slowly. Lots of fatigue and knee and foot pain and he's walking with a cane. We thought life would be better but our days are about the same as before the transplant. I pray things improve.

    5 Comments
    • Julianne's Avatar
      Julianne

      Thank you for this advice and for sharing your experiences. My husband dislikes talking about what he called his "ailment" and he is not very good with the computer so he avoids all forms of chat or texting or tweeting or groups or anything like this, but I'm the opposite; I guess in our case, opposites attract! I have urged him to come to support group meetings and to go online, but he doesn't want to. He's having a really good day so far today. A blessing!

      over 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      Hoping for better recovery for him.

      over 5 years ago
    • SDGadgetGirl's Avatar
      SDGadgetGirl

      My husband is kind of like your husband, in that he doesn't want to think or talk about it too much. It's two years post transplant now and he has finally opened up a little. It was hard for me to have him in so much denial. But it sounds like you have a lot of support and that's great. I hope you feel supported. You can always come here when you need to. And then just try to be ready for when your husband is finally able to talk about it. Enjoy those good days! You should get more of them as time goes by.

      over 5 years ago
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    Julianne started following

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    Julianne asked a questionMultiple Myeloma

    Does anyone have a link to the online form to apply for SSI Disability benefits for SELF-EMPLOYED?

    6 answers
    • TheSilverOne's Avatar
      TheSilverOne

      If you still have trouble finding it, check to see if your cancer center has social workers. I go to MDAnderson, Orlando and Moffitt in Tampa and they both provide free social workers who know how to maneuver through all sorts of issues, including SSI & SSD. Good luck!

      about 6 years ago
    • Charlieb's Avatar
      Charlieb

      I was self-employed when I applied and I don't believe there is any difference in forms to apply. It may make a difference for eligibility depending how long you have been self employees.
      From experience I would like to advise you on a couple of things. Filling out the form is a long process in itself, they allow you create an account so you can save your work online and come back later. Fill out everything as thoroughly as possible, especially medical history. No matter what, be prepared to be rejected the first time you submit your request. Don't bother to get a lawyer at first, it's just the way the system works. After being rejected the first time, find a lawyer who deals specifically with SSI and work with them.
      I just want to prepare you that this is not an easy process, but if you deserve SSI you will get it. A few people have received SSI the first time around, but this is what I have seen.

      Charles

      about 6 years ago
    • Julianne's Avatar
      Julianne

      Thank you all so much. I was hoping there was a social worker somewhere that can help me. I will check with the cancer center. I am beginning the form today, thank you for your good luck wishes. This is such a stressful process and we're just beginning. Lord give me strength. Julianne

      about 6 years ago