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My rant (so sorry)

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    My rant (so sorry)

    Where to start...
    I have been diagnosed with MS for 12 years. I have never had a "knock you on your butt" exasterbation but have had several neuros tell me I definitely had RRMS. About 11 years ago, I had a neurologist who said I was SP so basically I wasn't diagnosed until I reached that stage. My first doc, who diagnosed me,said he was surprised I was walking and functioning, based on my MRI. Fast forward to now. I use a wheelchair for almost all movement (although I give myself a high five when I can shuffle to the bathroom).
    Well, the stress level in me has skyrocketed the last few days.
    My hubby does a great job taking care of me. I really can't do much anymore. He does all the things from trimming the trees to cooking dinner. Honestly, most days I feel totally worthless. He does some freelance work from home but this year it has been almost nothing.
    He feels trapped. He says if he goes out and gets a job we would have to pay someone to take care of me and it would be a wash.
    He is quite the handyman. (He practically built our house.) The house needs some work but he is very capable of doing it. Unfortunately our insurance company thought it was taking too long and cancelled our policy. At this point we don't have a mortgage so we are probably going to go without. Again, he says he feels trapped - can't sell until fixed up and can't find time to do the work.
    I feel like such a burden but he tells me I am not. I feel I am holding him back. He says it is other things.
    I know he loves me. I just wish I could do more.
    Sorry for the long rant. I needed to vent to someone who might understand.
    And if course, it is now time to deal with healthcare.

    #2
    Hi newme- you can rant all you want here! I'm sorry you have found yourselves in this situation.

    I don't know if you have senior status yet, but there is financial assistance available for you if you are. It's called Paying for Senior Care. (Our goal is to help families find the means to pay for senior care by providing objective information and interactive tools on our ad-free, easy-to-use and comprehensive website.)


    The Eldercare financial assistance locator https://www.payingforseniorcare.com/...ator_tool.html has this to say:

    "Over 400 programs provide financial assistance for elder care. Help comes from federal, state, and local governments, the VA, non-profits, private organizations, and as many as 50 other agencies. The large number of sources and different and often conflicting qualification rules makes determining one's eligibility a challenge."

    The link has a confidential questionnaire to send in to see if you qualify.

    Maybe by applying, you can have assistance at home while your husband works. I hope something works out for the both of you. Kudos for your husband who is so loving and willing to help you! Please take care and try not to stress
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Rant away anytime. I am sorry you find yourself in this situation. I can imagine the stress and frustration you must be feeling. It sounds like you have a very caring and loving husband. When you love someone, choices made never feel like burdens. He sees his wife, not the wheelchair. A true blessing.

      Nor sure where you live. Can you reach out to church or volunteer orgs to see if you could get coverage for a few days a week? If you could get shifts covered in a 2-4 hour window, maybe your husband could get a part time job to bring in some extra money to support the repairs?

      Another option - maybe you could check with the local MS chapter and see if any volunteer orgs that will do repairs for disabled homeowners? While your husband can do it, this may be another avenue to get a few items checked off.

      Sometimes, there are people in our lives that want to help, but just not sure what is needed. For many reasons, it is hard to ask.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Thank you for letting me rant. If I were on the other side of this, I would probably be offering similar advice.

        We are very blessed. I know there are people who would be happy to help us out. Sometimes we struggle with wanting to be too independent.

        I have not reached the age of "senior" yet, but it is rapidly approaching. We are very active in the church. In fact this is one if the things that takes DH time and another of those things that make him feel trapped.

        As my new go to saying is "we will get there" and I need to listen to myself.

        Comment


          #5
          Originally posted by newme View Post
          Where to start...
          I have been diagnosed with MS for 12 years. I have never had a "knock you on your butt" exasterbation but have had several neuros tell me I definitely had RRMS. About 11 years ago, I had a neurologist who said I was SP so basically I wasn't diagnosed until I reached that stage. My first doc, who diagnosed me,said he was surprised I was walking and functioning, based on my MRI. Fast forward to now. I use a wheelchair for almost all movement (although I give myself a high five when I can shuffle to the bathroom).
          Well, the stress level in me has skyrocketed the last few days.
          My hubby does a great job taking care of me. I really can't do much anymore. He does all the things from trimming the trees to cooking dinner. Honestly, most days I feel totally worthless. He does some freelance work from home but this year it has been almost nothing.
          He feels trapped. He says if he goes out and gets a job we would have to pay someone to take care of me and it would be a wash.
          He is quite the handyman. (He practically built our house.) The house needs some work but he is very capable of doing it. Unfortunately our insurance company thought it was taking too long and cancelled our policy. At this point we don't have a mortgage so we are probably going to go without. Again, he says he feels trapped - can't sell until fixed up and can't find time to do the work.
          I feel like such a burden but he tells me I am not. I feel I am holding him back. He says it is other things.
          I know he loves me. I just wish I could do more.
          Sorry for the long rant. I needed to vent to someone who might understand.
          And if course, it is now time to deal with healthcare.

          I have to say that I can relate to a lot of things that you said in your post. This last year has been a rough one for myself as well. Are you receiving disability and if so you may be able to get in home care or a CNA for to come over and help you out with the stuff that you need and then your husband can get a job. If you are not legally married then they might pay him to take care of you.

          Comment

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