Trying to keep myself together!!

I restarted Tysabri almost 2 months ago. (Next infusion this Friday!) My JC went down enough that my Dr feels that it is safe for me again. I am so glad to be back on it too!! Since i am alone now and it doesn't seem to be changing any time soon. My husband was my caretaker and he has chronic kidney disease and he has dialysis 3 times a week but the poor guy is so disorientated when he comes back to the nursing home he does not know who I am but the next day he askes me why I was not there the day before ! I have never missed a day! This past Saturday I got a letter from Social Services that on July 1st I get a raise but his money that I have been using to pay the taxes, insurances, utilities, all the bills will not be available any longer for me to use to live in the house! I'm thinking about this all the time all the time! Not good with a person with MS!! I can't wait until Friday!!

7 Replies

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  • DianneB, I don't know that I've ever heard anyone so excited over their next infusion! But I can understand the positive in all the stress and upheaval you have in your life right now. I am sorry to hear about your husband. That must be very difficult for you--in more ways than one. I don't understand why the change in your husband's allowance, unless that will be going towards his expenses in the nursing home. I can't do much other than send you a hug and say a prayer that some remedy will materialize, and that the stress won't affect your MS. My heart goes out to you. Please let us know how you are doing. 💕

  • DianneB, I'm sorry for the many problems you are facing right now. I am happy for you, however, that you are getting your infusions again!

    I sure hope you have support from family and friends and aren't trying to take care of everything yourself.

    Will you let us know how you and your husband are doing?

  • Hi Thank you for the kind words! My husband is out of the hospital now but in a nursing home. I have to get him into see another lung Dr tomorrow. He is hoping to finally come home sometime this month. Hes been living in nursing home since last May! :( Been a long tough year!

    But I have a great support staff and the people I know from my MS support group(s) are the best! All of you have really helped me!

  • Hi DianneB! I'm sorry you have so much on your plate. Its bad enough dealing with this disease without the rest of what you are juggling.

    It sounds like you need some expert help with the your financial situation. Both MSAA and the National M.S. Society have resources and referrals that can help with a variety of things.

  • Hello! I understand looking forward to a tysabri infusion. I always look forward to mine. Tysabri made MS manageable for me. I agree with raingrrl. Start asking for guidance!!! Good luck. Prayers headed your way!

  • Hi DianneB welcome to our MSAA Community 💐 lm so sorry that you seem to be having a rough time right now. Give MSAA a call to see if they can help at all.😊

    800 532-7667 ext 154

    Jes 🌠

  • Thank you for the info! I am adding the phone number to my contacts!

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