My home health nurse just left after attempting to access my port twice and failing both times. I’ve got to have another nurse come out and try. This is happening every other week. My doctor approved my port for my fluid infusions because I have almost no vein access and it always takes multiple attempts (even with the ultrasound team) to start an IV.
I was really hoping that the port would help prevent multiple sticks.
I’ve heard about products like the “Amanda Stabilizer” from BD that can help prevent multiple stick attempts but I have no idea how to go about getting them. My medical supply company can’t even get me a lower profile Huber needle.
My doctor suggested that I’ll probably eventually have to learn to access my port myself but if multiple medical professionals frequently have issues doing it, I don’t have a lot of faith that I’d be able to do it. #EhlersDanlosSyndrome #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Port
So, after insisting that I did not have joint laxity/instability the first time my physical therapist (who specializes in chronic pain and always screen's for hEDS)- I finally realized that I do meet most of the diagnostic criteria. Some of the issue was me being taught to ignore the constant pain as a child and minimizing my symptoms. My PT and I reviewed the diagnostic criteria that she could check and I'm within 1 point of a diagnosis. She said that means we will definitely address hypermobility in our sessions. Next step is talking to my primary doctor about referral to a geneticist.
Even without the genetic conformation or an official diagnosis, EDS explains so much about my experience of pain, medical complications, mental health, and even dental issues. I know it wasn't all in my head before- but somehow that's so much more real to me now. It's not a defect in my character (which it never was anyway but sermed like because the tests always came back "normal"), it's a physical problem that makes the everyday so much more challenging.
Just so relieved to potentially have so many answers to questions I was afraid to ask. My symptoms haven't changed- but knowing more about why seems to make them a bit easier to manage.
Thanks for reading my ramblings. Looking forward to more information and a deeper understanding of what this condition means for me and how I choose to live my life going forward.
#HypermobilitySyndrome #PTSD #Fibromyalgia #ChronicFatigueSyndrome #PolycysticOvarySyndrome #OrthostaticHypotension #Migraine #longcovid #Dysautonomia
I haven’t talked about it too much yet, but I was diagnosed with lupus in July. I walked out of that rheumatology appointment feeling absolutely beside myself. Why had no one ever suspected that condition? Why did I have to go so many years before a specialist took enough time to help me piece the symptoms together? I’ve been presenting with symptoms for over a decade! 😅
I definitely have not accepted the diagnosis yet, in fact I’ve been bucking pretty hard against it, but I know that talking about it — especially here — will be a huge step for me in healing and moving forward. (Does this officially make me a Lupus Groupie? I think it does!)
As soon as I was diagnosed, my mom purchased some fun patterned compression socks for me. I didn’t realize how much they’d help me or how much I was swelling and didn’t even realize I was losing feeling in my calves/feet. One brand I’ve discovered is Comrad and ooooooh, their cozy compression socks are SO good.
🧦 P.S. You can shop them here (yes, they’re a little pricey but I consider it an investment in my health 💯): www.comradsocks.com/collections/cozy
Hi, my name is Kaelei. I've been diagnosed with a primary mitochondrial disease (complex one) sick sinus syndrome, hypoglycemia dysautonomia, pots, Brugada syndrome, recipe, PTSD, generalized anxiety disorder, depression, migraines seizures, acquired ADHD
#MightyTogether #PTSD #Depression #ADHD #Migraine #PTSD #GeneralizedAnxietyDisorder #Dysautonomia #Gastroparesis #BrugadaSyndrome #PanicDisorder #MitochondrialDisease #RestlessLegsSyndrome #Hypoglycemia #Grief
Hello! I’ve been diagnosed with ehlers danlos syndrome. I believe my disease doesn’t define me and I’m trying to live according to that mindset (also acknowledging and embracing my illness)
I’ll be happy to exchange some useful tips and also chat with people that is living something similar 🤍