nonacute

[nonacute]

the bitter sweet reality of a famous person being diagnosed with EDS/MCAS/POTS.

I’m so glad people will have more awareness & recognize someone can appear to be fine but struggling medically and that somebody they care about and idolize has these struggles so anybody can. The reality is also that even if a celebrity gets all three diagnoses….these are medically rare & isolating conditions that are difficult to come to & in most cases chronic and lifelong. The fear that everyone’s favorite entertainers’ dx’s are publicly known & that may inspire people to think they are now experts on the condition. Our doctors at times have yet to understand so it’s terrifying to think that people may want to start raising public awareness about something still widely misunderstood in medical spaces. The public already thinks suggesting unsolicited medical, dietary, health, and wellness tips are acceptable & helpful. It’s not. As much as it feels good to be able to identify and feel understood….the statistics & understandings are limited & isolating.

#chronicpain #chronicliving #actually disabled #edslife #ableism #ehlers danlos syndrome #mast cell activation syndrome #postural orthostatic tachycardia syndrome

[nonacute]

Still emotional thinking about the day my EDS diagnosis was confirmed. So many years of medical trauma, gaslighting, misdiagnoses, and learning about my body. It was a difficult journey but I remember crying & feeling so relieved & that everything finally made sense.

#chronicpain #chronicliving #actually disabled #edslife #ehlers danlos syndrome #fibromyalgia #ableism

[nonacute]

tinder with chronic illness be like…….

(he’s a doctor so at least he knows what he’s talking about)

#pots #eds #mcas #chronicliving #chronicpain #actually disabled #edslife #dating

[nonacute]

Me: I don’t stim...ever

Also me: clenches/trembles hands, shakes/rocks back and forth, eyerolls & rapid blinking, bites fingers/skin, cracks/rubs hands, repeats words, walks on tiptoes, bangs head.

Me: why hello there

#actually autistic #autism #autistic women #edslife #actually disabled

[nonacute]

Hey everyone! i'm seriously in need of a wheelchair, as my health has been declining more and more :/

a reblog or just 1$ or 2$ helps lots!

take care of yourselves ^^

here's the link

[nonacute]

turns out I’m autistic

#chronicliving #edslife #autistic women

[nonacute]

MCAS dx confirmed. So validating & one step closer towards taking control of my life.

[nonacute]

Trying really hard not to give up right now. Asdfjkl;

#chronicpain #chronicliving #actually disabled #edslife #overwhelmed #spoonie #i'm tired

[nonacute]

Feeling so depleted...

Just had a horrible experience trying to see a rheumatologist I found on a list of doctors who is EDS aware at an arthritis and osteoporosis Center. I made them aware of my primary and secondary health insurances and they let me know before I made the appointment that they didn’t accept my secondary so I would be responsible for the primary co-pay and I agreed and we made an appointment and I waited months for the appointment just for them to tell me that it’s illegal for them to accept my primary since they don’t accept my secondary and I’ve never been turned away from a specialist for this reason and they couldn’t give me a written policy and refused me care.

[nonacute]

doctors constantly talk about the dangers of high blood pressure but there isn’t as much awareness of how equally as dangerous low blood pressure can be.

#pots #edslife #chronicliving #cripple punk #postural orthostatic tachycardia syndrome

[nonacute]

We didn’t

one of my greatest fears is that we don’t mean as much to you as we do to me

[nonacute]

a breakthrough, maybe?

it felt sooo amazing to have my mother sit down & listen to me talk about why I need to talk about mobility aids & she committed herself to learning & raising others’ awareness of my condition.

#chronicpain #chronicliving #actually disabled #edslife #learnfromhome #support #family

[nonacute]

painz n gainz

tomorrow I get to reconnect with my long lost physical therapist that first identified my EDS. she moved away & I’ve tried other pt’s but I’ve found my way back & I’m willing to wait & go the distance for the right fit. I just know it’s gonna go so well.

#chronicpain #chronicliving #actually disabled #edslife #cripple punk #hypermobile eds #fightingfibro fibromyalgia fms

[nonacute]

I’m not a useless pile of garbage...even if I feel that way sometimes...

[nonacute]

living with a chronic illness is really depressing sometimes. you can do everything right and still hurt. you can make all of your appointments and still be struggling. you can do nothing and feel completely exhausted and defeated. le’sigh..

#chronicpain #chronicliving #ableism #actually disabled #edslife #ehlers danlos syndrome #fighting #cripple punk

[nonacute]

caring is creepy

[nonacute]

Asdfjkl;