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My cousin passed away

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
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Avatar universal
Hi, Maggie.

  Thank you so much for your condolences.

  Hugs,
  Sheila
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Avatar universal
Hi, Suzanne.

   It is nice to meet you now. I have been off-line for quite some time, due to severe pain.
But it is good to come 'home' again, even when I can't be here, long.

  Thank you so much for your condolences and prayers.

  Hugs,
  Sheila
Helpful - 0
Avatar universal
Hi Sheila,

I haven't "met" you, but I would like to step forward from the sidelines to offer you my sincerest condolences. I will keep you all in my prayers.

Sincerely,
Suzanne
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Avatar universal
Oh, Elaine, the love of my family here, touches me to my very soul. For without all of you, I would still be in bed, crying and depressed.

Please insist your husbands doctors monitor him, carefully. My cousin had 'drop foot' for four years before they diagnosed him. One thing I have learned, we have to be pro-active in our health care. We cannot ever stop searching for the diagnosis.

My cousins wife is one of the people in my life, that I most admire. She took care of him, herself, with never a complaint. Lifting him from bed to his wheel chair, bathing him, feeding him, the whole nine yards. I am so grateful she is part of our family.

I hope and pray, I am following in his footsteps. I want to leave my family, the same example.

Hugs,
Sheila
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Avatar universal
Just wanted to give you my condolences on your loss also. But he is not gone as long as he is remembered, as you do with your words and love.  Maggie
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Avatar universal
Hi, Lynette.

  Thank you so much for your condolences. And thank you esp. for the prayers.

  Hugs,
  Sheila
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Avatar universal
Hi, Jo.

   Yes, you are right, my cousin was a giver, and a teacher, and I am glad that it helps our family here.

   I'll tell you something.....there were times, during our 34 years of marriage, I wasn't sure my husband loved me...he was busy, wrapped up in work, and we lived parallel lives at times. But, when I got sick, 2 years and 5 months ago, I realized, I think, for the first time, the full extent of his commitment to me. So, maybe this happened to me for a reason. Still, sometimes, it is frustrating that I am unable to do all the things I used to do that made us a team. But someone said to me recently, "That's marriage".

   God Bless You, too.

  Hugs,
  Sheila
Helpful - 0
Avatar universal
Hi, Ada.

   I'm so glad you feel the same way. I feel my family here, saved my sanity, as well, as my life.

  Thank you for your kind thoughts about my cousin.

  I think we are blessed to have our husbands. I had worried about the cost of a laptop, on top of all my medical bills, but he said, "Think of it as part of your therapy, you need your family in the MS group".

  Ada, you are in my heart, too.

Love & Hugs,
Sheila
Helpful - 0
Avatar universal
I hope you know how much you are loved by the people on this forum..It is so apparent by reading the posts.

Your cousin's story touched me since my husband was 47 when he started having problems and now is still un-diagnosed at age 50, but has spasticity in both legs and pain.

Your cousin's wife is a special woman and you are following in your cousin's footsteps with your courage and faith.

Thanks for posting,
Elaine


Helpful - 0
307874 tn?1242755798
I am so sorry for the loss of your cousin.  Of course he will be missed so much.  I will keep him and your family in my prayers.  Lynette
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333021 tn?1207759633
Hi Sheila

I am so sorry for your lose,.  This man, your cousin was such a giver , and a teacher.  First to you and your families and now you pass it on to us .  

Many of you have wonderfully supportive spouses or significant others..   The love and trust you must have in one another is heart warming, to say the least.                  

God bless you all

  Jo

Helpful - 0
393986 tn?1303825975
Hey Sweetie, I feel the same way about this forum too.  This group has literally saved my life.

I am sorry about your cousin, I am thinking of you and your family, Sheila.  It is wonderful about our spouses, mine had bought me a laptop too so I could be comfortable while seeking answers in cyber space.

Your in my heart, Sheila.

With Love,

Ada
Helpful - 0
Avatar universal
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.
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Avatar universal
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!
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Avatar universal
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
Helpful - 0
230625 tn?1216761064
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
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Avatar universal
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
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Avatar universal
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
Helpful - 0
220917 tn?1309784481
Hey, Sweet One~

How I miss you.  I am so very sorry to hear of your family's loss.  Their strength and love show in the ceremonies you've described.  How lovely.  I'm happy Ervin is feeling no pain now.

Now, about you~ It hurts me so deeply that you are still having no relief.  I'm so sorry.  I'm glad the Spring is at last here, with all God's creation promising beauty.  I hope you are able to get some sunshine on your face and enjoy some little moments.

Take care of yourself, and know you are cared about.

Love and gentlest hugs,

Zilla*
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Avatar universal
Thank you, Kristin.

Hugs,
Sheila
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Avatar universal
Carol, thank you so much. Ervin is missed, but we are also so happy to know he is out of pain now. His funeral was so beautiful. First, we had a prayer service at the funeral home, then a mass in his church, and then, a grave site ceremony. At the end, we each took a handful of rose petals and dropped them gently on his coffin. It was covered.
Hugs,
Sheila
Helpful - 0
228463 tn?1216761521
I am so sorry for your loss.  You and your family are in my thoughts and praysers!

Love and Hugs,
Kristin
Helpful - 0
199882 tn?1310184542
Honey, I'm so sorry about your Uncle.  We all know what it's like to loose a loved one and we also feel the pain with you.  I know it's scary when any of us hear of someone dying due to complication of MS.  We could also get hit by a bus tomorrow.  Everyone dies, that's just a fact of life, but it sure doesn't make it any easier to deal with when that someone is your loved one.

Your dear Uncle is probably walking around and doing all the things he hasn't been able to for the past years.  What we can do for you is give you our love and prayers.   I wish I lived closer just so I could be there for you when he is laid to rest.  Hang in there honey, and remember that we are with you in spirit.  

I'll be praying,
Carol
Helpful - 0
Avatar universal
Hello, my extended family, new people that I don't know but consider new family members, old friends. Please bear with me, my mind doesn't seem to be so clear these days, due to  meds.

I thank all of you for your kind thoughts. Please know, I keep each and every one of you in my prayers.

Quix, Neuro has no more ideas. But, it is definitely 2 things: #1. Ankylosing Spondylitis, lots of complications with it, and D.O. feels that the pain causes muscle spasms that  cause the nerves in my  spine to sting & burn. Spinal column often feels like glass is being ground into it. So, I am drugged. LOL #2. Small Fiber Neuropathy

Down to 84#s now. Anyone got 10 they'd like to get rid of? :)

The third thing is still un'dx'd and that is this complete loss of bowel function, and it irritates the AS. (Pardon the pun) Last bowel program, failed, so beginning a new one. I fear, if this one fails, I am headed for colostomy. Seems to have the symptoms of a "Neurogenic Bowel".

I'll be back as soon as I can.

Hugs,
Sheila
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