topic Re: Learning to live with EDS in Community Chat

Learning to live with EDS

gloriajean — Sat, 17 Feb 2018 15:08:54 GMT

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.

Re: Learning to live with EDS

dex — Sat, 17 Feb 2018 15:13:49 GMT

@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.

Re: Learning to live with EDS

Bird mama — Sat, 17 Feb 2018 15:19:36 GMT

@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.

Re: Learning to live with EDS

Bri36 — Sat, 17 Feb 2018 15:24:22 GMT

@gloriajean, I'm so happy she found some relief.

Counseling will help her for the ups and down associated with her condition.

Re: Learning to live with EDS

Noel7 — Sat, 17 Feb 2018 16:36:41 GMT

@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.

Re: Learning to live with EDS

Rowan72 — Sat, 17 Feb 2018 17:44:37 GMT

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.

🙏🙏🙏

Re: Learning to live with EDS

IMW — Sat, 17 Feb 2018 18:09:48 GMT

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)

Re: Learning to live with EDS

gloriajean — Sat, 17 Feb 2018 20:33:43 GMT

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.

Re: Learning to live with EDS

cherry — Sat, 17 Feb 2018 20:42:04 GMT

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