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02-17-2018 10:08 AM
My daughter bought herself a collapsble office chair that she can take to restaurants and last night used it for the first time, it worked! No pain and she could enjoy being there with her husband and twins. Now she can also use it to eat at the table. She can only sit in a regular chair for 5 min. She is also going to grief counseling. Seems to help. All this is recommended by her specialist. Her next appt. with her is in April.
02-17-2018 10:13 AM
@gloriajean I am happy for your daughter to have found a way to go out for dinner and be pain free.I don't know what EDS is but I am sorry she has to be in pain...tough on the whole family when someone you love is ill.
02-17-2018 10:19 AM
@gloriajean My eldest sister passed away quite unexpectedly at home in December 2016.
While it wasn't Guillain-Barre that took her life, she received that diagnosis out of the blue in the spring of 2016.
My sister was older (60) than your beloved daughter, however the challenge was the same. When you have a debilitating illness it's not easy to reconcile that you can have and participate in life, it just involves some workaround and is different.
There is a grief that comes with that and I am so happy that your beloved daughter is taking advantage of the grief counseling and is open to suggestions that will allow her to continue to participate in life.
02-17-2018 10:24 AM
@gloriajean, I'm so happy she found some relief.
Counseling will help her for the ups and down associated with her condition.
02-17-2018 11:36 AM
@gloriajeanwrote:My daughter bought herself a collapsble office chair that she can take to restaurants and last night used it for the first time, it worked! No pain and she could enjoy being there with her husband and twins. Now she can also use it to eat at the table. She can only sit in a regular chair for 5 min. She is also going to grief counseling. Seems to help. All this is recommended by her specialist. Her next appt. with her is in April.
Hi @gloriajean
I'm so glad your daughter found a chair that works for her!
There are also braces available that might give her the support she needs.
02-17-2018 12:44 PM
I am so happy that your daughter is finding solutions that will help her deal with the difficult diagnosis, and the ongoing various challenges she faces, @gloriajean. What a blessing that these chairs are available.
I'm sure your positive spirit is a constant source of comfort and inspiration to her, too.
🙏🙏🙏
02-17-2018 01:09 PM
It is wonderful that your daughter is being proactive, this and a supportive family, especially husband,can make all the difference.
This will give strength and hope- she and her family are in my thoughts. (That includes you)
02-17-2018 03:33 PM
Thank you for your posts, and prayers, too! Prayers are always appreciated, we are there with here about 4 days a week taking care of her twin girls, 1 1/2 year old. She is a professor at our college, but this semester only doing on line classes because of her pains.
02-17-2018 03:42 PM
They will be able to help her ,be as comfortable as possible. I know it won't change anything, but it will make her life easier
God bless all of you
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