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Old 11-09-2015, 03:49 PM
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ker0pi ker0pi is offline
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Join Date: May 2013
Location: California Coast
Posts: 67
10 yr Member
ker0pi ker0pi is offline
Junior Member
ker0pi's Avatar
 
Join Date: May 2013
Location: California Coast
Posts: 67
10 yr Member
Default Really struggling today

I was diagnosed with relapsing remitting MS in December 2012. At that time I could walk with a cane. I could grocery shop and play with my son.
In the past three years I have slowly gone to crutches and now I use a four wheel Walker and I have to use fully voice activated software for the computer.
My neurologist now thinks that I'm actually secondary progressive, and that I was diagnosed already in the secondary progressive stage. I have not increased my lesion load at all since my initial diagnosis but my disabilities worsen daily.
My neurologist isn't willing to change my diagnosis because she wants me to still be able to try different medications.

Up until the last six months I have managed to stay optimistic, but lately I really feel like I can't do this. I don't know how much longer I'll be able to stay out of a wheelchair. My insurance won't pay for one because the bought me a mobility scooter. The mobility scooter is too cumbersome for me to use inside our home.

My whole family is in therapy at the moment to deal with what is happening to me. I think it was when I started to lose the use of my hands that I really started to feel what this disease is doing to me. I suffer from horrendous muscle spasms. None of the medication I take seems to really help.

I spend most days wishing this was a terminal disease. Then I would know the suffering would end. The thought that I could live like this, and in a worse condition for 30 years scares the hell out of me.

I used to be a long-distance runner and physical activity was how I coped with everything in my life. My therapist describes it is losing my entire sense of self. And she's right. I don't know who I am anymore. I don't know what defines me except my daily struggle with this disease and that is not who I want to be.

How do you cope? How do you reconcile who you once were with who you are today?
__________________
"Nothing has changed, but everything is different" -Hubby's statement after I received diagnosis.

-DX RRMS 12/2013
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