It’s been a while since I posted on here. So many things have happened with my health it’s shitty as fuck my ribs are inflamed headaches are crazy had my 11th spinal tap and now they say I may not have the weird disease they’re confused about my condition.
I want to scream out to the world I started cutting last year I love my body and I’ve done in inconspicuous places and I tried to stop. But my PTSD has been triggered time and time again I just got engaged on Friday and by Sunday I was cutting and I did it again tonight. I did it on my inner thighs so nobody can see it’s like the stretch marks from giving birth to my children. I need to stop this I’ve spoken to my psychiatrist and we’re working on this but it does give somebody’s and then I feel horrible afterwards this is just crazy! I have a degree in clinical psych I’ve done all these papers I can diagnose and I’m so fucked up in the head it’s been five years dealing with these illnesses and now new things coming up when do I catch a break? It could be worse but I’m breaking down I feel defeated I don’t know what to do that’s all I can say for now as my head pound my ribs are swollen and I’m trying to fall asleep. Lord do universe please help me I try to do so much good but I can’t do it for myself I’m not stupid I’m not dumb although I feel it sometimes I’ve been OK but I’m just spiraling….. That’s all I can really say for now my thyroid is Out of wack my glands are swollen so it’s hard to talk just give me a break that’s all I need
Do you use mobility aids?
Once again, attempting to coordinate my medical care
Hi, I finally took the plunge: this is my first post to the Mighty!
Until a year ago, I had *finally* managed to find a team of drs. who communicated with one another and supported me in coordinating my complex medical care. (Like so many of you, I had been misdiagnosed for decades, but was so incredibly relieved and grateful for having come upon a team of drs. who understood my case and dxd me properly.)
Then ... over the past year or so, I learned I have a multitude of additional and rare genetic and congenital health problems. (I've listed some of them below**, because I don't believe the specifics are relevant to my question.)
While my new team of specialists know one another – they're among a literal handful of specialists who treat complex cases such as mine – they are located in different parts of the US, using different EMRs, following different protocols related to HIPAA-compliant access to my medical records, ranging from moderately accessible to almost completely inaccessible with respect to patient portal messaging, etc. etc.
On some level I understand, given the ridiculously short amount of time allocated for each appointment by insurance companies, and, the ensuing post-appt. efforts made / required by many drs to, say, finalize documentation of the visit, prescribe Rxs, tests, procedures, etc. As a result I am filled with gratitude for those drs. who spend more than the 15 minute (or so) allocated appointment time adhered to by most drs.
That said, due to the diversity – in geography, medical record practices (EMRS and patient portals), local/state prescription policies and lab test capacity / availability, etc., etc. – I have not been nearly as successful in coordinating my care of my new crackerjack team of drs.
Does anyone have any advice for me?
Thanks so much!
**In short: while I'd been diagnosed with hEDS, I learned I had all the accompanying septad dxs and then some; multiple primary immune deficiency diseases (PIDDs); autoinflammatory disease; periodic recurring fever (due to a pathogenic variant of a genetic mutation); mast cell disease; chronic bacterial and viral infections; autoimmune diseases; chronic Lyme, Babesiosis, etc. (I was infected for 1.5 years in 1988, and again for a few months only in 2017, before being dx'd ), autoimmune diseases, etc. etc.
#ChronicPain #PrimaryImmunodeficiency #EhlersDanlosSyndrome #JointHypermobilitySyndrome #IIH
#MastCellActivationDisorder #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #DegenerativeDiscDisease #sjogrens #ChronicLymeDisease #LymeDisease #Babesiosis
Been struggling with the pain