My cousin passed away

[yorkieville]

I haven't posted in a very long time. Don't seem to be getting any better. Pain meds keep pain almost manageable, as long as I don't get too active.

But that's not why I am posting today.

My cousin Ervin passed away 3 weeks ago. He lived with MS for 18 years. He was diagnosed at the age of 48, and it advanced quickly, long before any of the new treatments could help him. He was in a wheelchair within 4 years of his dx.

I don't know why I am telling all of you, except maybe to encourage you never to give up.

I believe he survived so long because his wife and children and grandchildren gave him the will to live.

A few of us in the family got together on Easter and that day, there were no tears. We shared happy memories of his life.

Still, he is sadly missed.

Hugs,
Sheila

[yorkieville]

This forum consists of the most wonderful people on the earth, including you. It's family here. And the comfort does ease my pain. Yes, you're right, my cousin was an inspiration, when I am in my deepest pain, and I feel like I want to give up, I think of him and I am reminded of what is important.

I spent about 1 & a half years, only able to sit upright for 20 minutes, the pain in my back was so bad, before a pain management doctor discovered it was coming from the nerves. And I had my days of crying in frustration, and I thought of Erv often and wondered how he managed to live that way, and one day the answer came to me, as I listened to my husband moving around the house, cleaning. He took over without missing a beat. The answer was his wife's love, and their faith.

My husband recently bought me a laptop, so I am able to get on a few minutes a day.
Thanks so much for the prayers & encouragement.

Do you know the day I stopped crying in frustration? It was when I found this group.

[princess73]

WOW! You have so many people on this forum that care! I hope that this eases your pain. I empathize with the pain meds just keeping the pain manageable. Your cousin sounds like an inspiration and you are lucky to have had someone touch your life like he did. Seeing people who are worse off than we are puts things into perspective. My thoughts and prayers are with you. I know it can be hard to get on the computer, but at least keep checking in so we all know how you are doing!

[yorkieville]

amo, Thank you, I have never thought of grief as being a sign that you have loved someone, that is such a nice way to think of it, and it helps me.

Pat, Thank you, I agree, I felt inspired by Erv for so many years. He dealt with his disease so many more years than I have, and his wife, set a true example of what our wedding vows mean,,,"in sickness & in health".

When I got sick, my husband said, "Hon, we've just come to the "in sickness & health part of our vows, that's all".

Thank you for your prayers.

Hugs,
Sheila

[6-paq]

I'm so, so sorry for you and your family's loss.   Your cousin is truely an inspiration to all of us.

You and your family are in my thoughts and prayers.  Special prayers said for you that you may get some relief.

Take care, Pat

[AMO]

dear SHelia,

I am so sorry for your loss. You have loveed your cousin , grief is the sign you have loved very well.  Rememebr your happy times you spent.
Hope you are finding peace. amo

[yorkieville]

Hi, Zilla!

   Oh, how I miss you, too! I am trying to get on here when I can.

   Thank you so much for the condolences.

   I was beginning to get some pain relief from the Ankylosing Spondylitis and the Small Fiber Neuropathy ...my D.O. put me on Valium & Tramadol (generic Ultram) but the bowel problem prevents me from getting better pain relief, because it presses against the spinal column. It's been frustrating...you remember I was started on getting dx'd at University of Chicago, then the bill mess(which is still on-going) so I had been waiting to go back there. In the meantime, I took the proctography report to my G.I. doc and it seemed to go over his head. So, this week I took it to my D.O. & he started me on a bowel program, but it makes the AS worse. But, still I will follow it and report back to him in 4 weeks.

  I'm going to PM you about U of C. It's crazy.

Hugs,
Sheila