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So I’m marked as a “true Ehlers patient” by my doctors

Hurray for having a severe case!

when my surgeon got into my shoulder he was freaked out at how insanely thin my tissue is.

Anyway, 7 1/2 hour surgery is 2 1/2 weeks past and I can coherently hold a conversation and walk on my own, but I still can’t shower alone… lame. No movement in my arm for 8 weeks (about 5 from now)

But I’m okay :) yup

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  • #spoonie #ehlers danlos syndrome
  • 3 hours ago
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EDS thing or do I just have a mean body?

Pain medicines don’t work on my like they should. Ever. I’m taking oxycodone 10 mg every 4 hours, oxycontin (slow release oxycodone) 20 mg every 12 hours, plus valium (a muscle relaxant)every 6 hours and none of it does anything. Except for the occasional help from the valium. But oral medicines don’t metabolise correctly or something because I don’t notice a difference on or off of them but I take them in good faith. I also have very bad reactions to a lot of medications…
Here I am in absolutely excruciating pain and I’m on some of the strongest drugs

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  • #spoonie #My body is terrible to me
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  • Anonymousdo you work or go to school?
  • morespoonspls

    I’m actually still in highschool! So yes, I’m planning on graduating early and then going to college to make in either anatomy or psychology, then medical school

  • 《Connective Tissue Issues》

    I meant major in anatomy or psychology, sorry!

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  • jetchickwithmctdSorry, I remember now, ED and POTS. Hows you shoulder feeling?
  • I have EDS, POTS, and literally at least 20 other things, yes, good job :) my shoulder is sore but okay, it’s still completely immobilized for another 7 weeks, but it’s ok thank you for asking!

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  • 4 days ago
  • Anonymousdo you work or go to school?
  • I’m actually still in highschool! So yes, I’m planning on graduating early and then going to college to make in either anatomy or psychology, then medical school

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  • acrossthecitysteamandlightFavorite horror film (if any)?
  • Hmm. I don’t watch horror since I can’t handle it most of the time (especially paranormal things or violence) but I like The Woman in Black I suppose!

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  • AnonymousYou're such a lovely and amazing person.
  • Oh my goodness thank you so much. I needed that thank you lovely anon

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  • 5 days ago

It’s been a really rough day guys…

Could you ask me questions please in my inbox? Anonymous or not, I don’t mind

I will answer anything (well almost) you ask me!

Thank you in advance♡

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  • #bad day #physical pain #mental pain #ugh #help a spoonie out
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When I feel like passing out in public but don’t want anyone to notice…

thischroniclife:

I try to be all subtle like…

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When I can tell weather changes by the amount of pain in my joints…

thischroniclife:

I’m like…

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And everyone else is like…

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