Anger · Health · Primary Progressive MS · Ramblings

When?

Tracy

 Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?

 I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.

 I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal  I don’t know what is.  Fuck you hospice!

 Dr. Kevorkian  knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves.  I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.

 I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day.  Not for me, tomorrow is the same thing, every day for the rest of my life.

 The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.

 I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease.  It’s not basic it’s like living in hell.

I’m off, as I can barely talk without crying anymore. I just want to  have some control over my own life and not die a rotting shell of the person I once was.

Published by Tracy

A day in the life of a mommy, wife, daughter, sister, aunt and friend with Primary Progressive Multiple Sclerosis!

9 thoughts on “When?”

  1. Tracy: Haven’t made a comment in a few years even though I’m on your e mail list. You’ve progressed faster then me but in the not too distant future I’ll be in the same boat and I just wanted you to know that I understand and feel pretty much the same about things. There will be help sometime in the future but it just won’t be for us. The last straw for me is when I can no long fend for myself and someone else has to wipe my butt.

    Sincerely
    Rick

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    1. Thanks for commenting Rick. I don’t think people truly understand what it is to have the severe forms of multiple sclerosis. If anyone ever tells me, be glad it’s not cancer, I’m pretty sure I would punch them in the face. 😉

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  2. I just want you to know, I love you, plain and simple… I honor you everyday, sending you love and prayers… I’m not a believer in the same god as most… but I do believe that like Micheal watches over me, along with my daddy.. your mom.. your sister and your daddy are watching over you.. I wish there was something I could do… just know you are forever loved… always strong.. and so very admired.. love you Trac… always have.. always will 💕

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  4. I have SPMS but at an earlier stage than yours I changed diet and nutrition. It slowed it way down. I eat an anti-inflammatory diet and that decreased pain and increased function. Also, I take Protandim and it gave me back some energy and my mind. Have you tried it? It’s an herbal supplement that tested stronger than Tecfidera for us. I don’t know if you’ve already tried these things, but if not, might be worth it. So sorry life has become so hard.

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  6. God Bless you! My Daddy has MS and is in his last stage. His brain is not there anymore.He has a food peg he can no longer eat or drink with out aspiration! 😩 I pray God eases your pain! And may you live the rest of your life in some sort of peace and comfort! Kristal Nunley

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