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Looking for Support Group in Edmonton for Myself & Husband.

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Old 10-06-2017, 02:48 PM   #1
Katrina Huhtala
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Default Looking for Support Group in Edmonton for Myself & Husband.

Hello,
My name is Katrina and I am looking for someone or support group for spouses and family that are living with someone whom lives with pain. My husband was diagnosed with Chiara Malformation back in 2000.
My husband and I have been together for 19 years, and I have known and understood that my husband has headaches, he has gone for 2 decompression surgeries ( at least 16 years ago), I know that he has this disease, but reality has set in, within the last couple of months as he has "admitted to having the disease". I hope someone may understand, for 19 years we knew, but reality has hit us hard, well myself hard. Lots of changes coming in the next year....
How am I suppose to help my husband from this day forward, I know that he needs to be in a calm surrounding, have no commitments, be able to do what he needs when he needs, but how can we be married then? I will never leave my husband, he is my best friend, my soulmate, my confident, my rock. He has also been told that he will have to have his neck fused as well, as he was not tested for EDS before the first surgery and we believe what is happening is that the scar tissue is taking over his spinal column and making it smaller, it is know at 8mm round, also disc degenerative disorder, arthritis and bulging disc's .
I guess, I am hoping that someone may be able to suggest a good counsellor in Edmonton, I am thinking a regular counsellor would not understand what it is like to live with someone that lives in pain, so I am thinking that I should find a support group?
If anyone has any advice for me, I would truly appreciate it. I love my husband to the moon and back, I want to make life as easy as possible for him, but at the same time, I do not live in pain, we do want to spend the rest of our lives together, and I understand that I have to make sacrifices, and that I have to compromise, I understand all of that in my head, My heart though ..... wants to know what it is like to live a "normal" life. I do not mean to offend anyone with that statement.
I hope everyone has a fantastic day and a very relaxing Thanksgiving weekend
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PamelaJune (10-07-2017)
Old 10-06-2017, 07:16 PM   #2
kiwi33
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Hi Katrina

Welcome to NeuroTalk .

I hope that you will find the community as knowledgeable and supportive as I have.

I am sorry to read about your husband - I see that you have posted in the Caregivers Support forum. You could also post in the Chiari forum (https://www.neurotalk.org/forum71/) - members could offer you specific suggestions as to how to support your husband there.

Best wishes.
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Katrina Huhtala (10-11-2017)
Old 10-14-2017, 06:08 AM   #3
John Nevro User
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Quote:
Originally Posted by Katrina Huhtala View Post
Hello,
My name is Katrina and I am looking for someone or support group for spouses and family that are living with someone whom lives with pain. My husband was diagnosed with Chiara Malformation back in 2000.
My husband and I have been together for 19 years, and I have known and understood that my husband has headaches, he has gone for 2 decompression surgeries ( at least 16 years ago), I know that he has this disease, but reality has set in, within the last couple of months as he has "admitted to having the disease". I hope someone may understand, for 19 years we knew, but reality has hit us hard, well myself hard. Lots of changes coming in the next year....
How am I suppose to help my husband from this day forward, I know that he needs to be in a calm surrounding, have no commitments, be able to do what he needs when he needs, but how can we be married then? I will never leave my husband, he is my best friend, my soulmate, my confident, my rock. He has also been told that he will have to have his neck fused as well, as he was not tested for EDS before the first surgery and we believe what is happening is that the scar tissue is taking over his spinal column and making it smaller, it is know at 8mm round, also disc degenerative disorder, arthritis and bulging disc's .
I guess, I am hoping that someone may be able to suggest a good counsellor in Edmonton, I am thinking a regular counsellor would not understand what it is like to live with someone that lives in pain, so I am thinking that I should find a support group?
If anyone has any advice for me, I would truly appreciate it. I love my husband to the moon and back, I want to make life as easy as possible for him, but at the same time, I do not live in pain, we do want to spend the rest of our lives together, and I understand that I have to make sacrifices, and that I have to compromise, I understand all of that in my head, My heart though ..... wants to know what it is like to live a "normal" life. I do not mean to offend anyone with that statement.
I hope everyone has a fantastic day and a very relaxing Thanksgiving weekend
I am going to be 60 and have been in what is called "Intractable Pain" for most of my life. You just being there means so much. If he knows you will never leave, you are helping out so much more than you could possibly know.

If you need counseling, get it, but be mindful, as many of these people have no idea of what they speak of. Sounds corny, but after 3 near death experiences, I've laid it all out to Christ, and pray as my stream of consciousness. A lot of this involves listening, and then learning when I am stressing my wife out too much and need to carry that cross by myself. Not much to offer, but continue to continue, day by day, hour by hour, sometimes, moment by moment. In the long run, the only thing we can offer anyone in this world is love, that is the part we offer. The greatest achievement of mankind, if there turned out to be nothing. I do believe there much goodness that await us in truth though.

My being a Christian alone has not eased my pain, but I can understand it, and not react to it, which is half the battle. I let it ride over me like waves. Nothing works all the time, not even most of the time, the reality of this situation.
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ger715 (10-14-2017)
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