#chronicallyill

#Repost @rarediseasepatient
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Some of us need #narcotic #painmanagement just to live in our own bodies, because our #pain is so severe. This makes the one-sided #media hype about the #opioidcrisis dangerous and damaging to us, because it makes this prescription #medication more difficult to obtain from scared doctors and hospitals, even from pain-management specialists. Finding a pain-management #doctor who is comfortable managing a #patient with narcotic medication, even when no other treatment has been effective, is increasingly difficult, and may sometimes be impossible. #ChronicPain patients who can’t find help for pain are at risk for #suicide.
If you are in pain, you have the right to medical intervention. If you are a member of the media, you have a responsibility to report with balance and accuracy. If you are a doctor, you have a duty to treat patients with the appropriate medication for each patient’s needs, not your own, even if that means managing a narcotic.
www.practicalpainmanagement.com/pain/other/ehlers-danlos-syndrome-emerging-challenge-pain-management
#EDS #EhlersDanlosSyndrome #Awareness #RareDisease #RareDiseases #ChronicIllness #ChronicallyIll #Genetics #GeneticDisorder
Please help: www.gofundme.com/HOPE-for-a-RareDisease-Patient
https://www.instagram.com/p/B57ErGZpYNf/?igshid=29leb9vzy92x

#okapistrong
#Repost @perpetual.reflections
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I no longer support the ehlers danlos society. A few reasons are featured in these images from @hell.on.wheelsxx and @livs.journal but more info is in @hell.on.wheelsxx ’s blog post which I’ve linked in my bio!!! This is only the tip of the iceberg.
They tightened criteria for HEDS without proper research and left a large group of patients with major life altering symptome and no diagnosis.

They don’t do much to advocate for the lesser known forms of EDS other than HEDS and CEDS
They endorse phsyicians as “experts” who openly call eds A PSYCHOGENIC DISORDER.
And so, so much more. Their expensive studies paid for by donations are NOT going to actually benefit the community and do nothing to improve our quality of life. This is reminiscent of autism speaks and as we #wearredinstead for autism, i will not be supporting the ehlers danlos society. .
I’ll post more info as it comes to me.
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#ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #hypermobileehlersdanlossyndrome #eds #ehlersdanlos #ehlersdanlossociety #vasculareds #chronicillness #chronicallyill #spoonie
https://www.instagram.com/p/B40EkGUJMSw/?igshid=109rqztr7tdbs

A #selfie before the ER for hydration from POTS and hopefully some pain meds for my Chrons flare-up. *crosses-fingers emoji* #sicklife #invisibleillness #spoonie #chronicallyill #edsgrrrls (at Park Ridge, Illinois)