Trying to keep myself together!! - My MSAA Community

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Trying to keep myself together!!

DianneB profile image
12 Replies

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!!

12 Replies
WAshingtongirl profile image

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. 💕

agapepilgrim profile image
agapepilgrim in reply to WAshingtongirl

DianneB the doctor is keeping you on that medicine tho you have JC positive??? I thought that was a no-no! How are you liver and white blood counts? I'm scared to start itveven tho the doc recommended it. Praying for you! My brother told me not complain it could be worse. After reading your situation, I now know it can be worse! All I can do is pray for you that the finances you need will be provided. Keep knocking on doors until it is!!!

DianneB profile image
DianneB in reply to agapepilgrim

My number is 1.2 and I am having my 76TH infusion this coming Friday. i have an appointment with my Dr next month and I guess we will discuss switching to another infusion therapy. I am receiving the help I needs to be able to have the right medication I need to lead a normal life. Believe me the drugs are getting better! I know because I've had MS since 1993! I appreciate your good thoughts and prayers!!

greaterexp profile image

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?

DianneB profile image
DianneB in reply to greaterexp

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!

DianneB profile image
DianneB in reply to greaterexp

Tim passed away on Aug 1st. He's be sick for a very long time and I got to bring him home and care for him the last month of his life. I am very grateful for that! but I know I m strong and I have a great support system of family and close MS friends! I'm getting through this!!

greaterexp profile image
greaterexp in reply to DianneB

I'm so sorry you've lost your husband. I can't imagine what you've been gong through., I wish there were more that I could say that could help you, but you will be in our thoughts and prayers. Your support group here will be here when you need an ear.

Raingrrl profile image

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.

Juleigh21 profile image

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!

Jesmcd2 profile image

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 🌠

DianneB profile image
DianneB in reply to Jesmcd2

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

DianneB profile image
DianneB in reply to Jesmcd2

Than ks for the info! I have their number wrote on my desk and Ill give them a call

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