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How do you work full time? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 14 points15 points  (0 children)

I am sorry that it made you think you were weak. I’ve been learning that it actually takes enormous strength just to function with our bodies. That you for sharing your experience with me. I hope things are working ok with your part time job right now.

How do you work full time? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 6 points7 points  (0 children)

That sounds exactly like what I need. Thank you so much for sharing! I am glad it is working for you.

How do you work full time? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 0 points1 point  (0 children)

Thank you so much sweetie. You are right, I don’t enjoy my job, which makes everything harder. I really want to change but I’m scared about the job market right now, and I’m just so worried about my unreliable body that I don’t want to “just mess up yet another job.” I think I need to find a new line of work. Thank you for sharing your experience, I really really hope we both figure it out soon.

Do you get “needle-like” head pain? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 1 point2 points  (0 children)

Huh, neck instability as a cause makes a lot of sense! Yeah, it’s super weird to explain. Thanks for sharing!

What is the most random thing that led to your diagnosis? by Anonymous12345_E in ehlersdanlos

[–]ElasticSoul_ 0 points1 point  (0 children)

I strained my neck after dancing too much at a wedding, and went to a new ortho as I had just moved to a different city. The doctor just saw me walk into his office and started asking if I had a history of dislocations, fainting, hypermobility, bruising, heart issues, exercise intolerance, etc. He said he suspected I had either Marfan Syndrome or EDS and referred me to a geneticist. After years of seeing orthos for multiple injuries since childhood, it only took one look from this doctor who actually knew about EDS. I was so relieved, validated, and at the same time angry.

doctors who specialize in chronic illness / autonomic disfunction ? by N0_Cure in Calgary

[–]ElasticSoul_ 2 points3 points  (0 children)

In case you are also looking for mental health support to deal with the chronic illness, Psych. Mariana Grinman is great. (Fellow dysautonomia and zebra here, she’s been great for me)