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27 years living with the MonSter and what I have learned

I have had the MonSter for so long and it’s not going anywhere. I was diagnosed as 24 and there were only the ABC drugs available. Avonex, Betaseron, and Capaxone. My doctor put me on Avonex. I was so young and naive but hey it was only once a week and two weeks on I graduated from a walker to a cane. I was loving life at first. I had to leave my job as a grocery store cashier to nothing at first. I loved not having to work to 27 years retitled in my 50’s. I became allergic to Avonex in April ‘99. I was losing a lot of my hair and became Paraplegic until I switched to Copaxone but I have been in a wheelchair since April of ‘99 when I was 26 and now I am 51 in bed. Only get to up for meals and Special Occasions like when I saw MercyMe and Newsboys at the end of April I this year. My husband and I make too much money for help at yet for some reason I am still RRMS. I am also a very happy person I just need help for my PIRIFORMUS?

  1. I am glad you took the time to share some of your hardwon wisdom after living with MS for many years, .

    I am so sorry you and your husband find yourselves in that weird income space where you make too much to receive affordable home aids, but probably not enough to afford that in-home care out-of-pocket. That's so frustrating and unfair.
    Do you have any help or does your hsuband do most of the caregiving for you? Also, you mentioned your piriformus. Is that muscle in bad shape or giving you lots of pain?

    Best, Erin, Team Member.

    1. my husband does it all and he is getting burn out. My piriformus is really bad. My right leg does not move and when I try moving both legs to bring my feet to my knee I am in a lot of pain. I cannot even roll over in bed anymore.

      1. , I'm sorry. Are your doctors willing to help you address your leg issues? I sure hope so!

        Best, Erin, Team Member.

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