Dystonia

Hi, my name is Topkatw. I'm here because I live with a rare affliction called Orthostatic Dystonia. I want to see if there are others here living with it and share thought, ideas, and tips for a better life.

#MightyTogether

I know Thymoma is rare. It was clear that my ER doctor was blowing me off when initially my numbers didn’t cause any concern. I waited, did more tests, then one of the tests results required that I get a ct scan, I hate that thing and the contrast but I know it’s there for my benefit. But where is the actual benefit? If it shows off a brand spanking new tumor the treatment is another sternotomy. And if nothing of concern shows up I’m still underserveilance by the medical team that directs my care.

So being blown off by the ER Dr wasn’t an issue for me. I’m confident that my medical records require diligence and respect by the consistent comment: “You’ve been through a lot.” To which I just usually nod yes, quietly.

After hours, I arrived at the ER at 5 in the morning and it’s the afternoon now, I am still here waiting (and ready) to go home. I already started removing the tape from my IV because I know how. (I used to work an emergency medicine)

The surprising thing is the fact that The Doctor Who blew me off initially, actually acknowledged his behavior and mentioned how easy it was to assume based on normal test results. I SO appreciated and respect that, as a human being!! He could have acted like all was well and never acknowledged his behavior choice. It’s super cool to be treated humanely when your own body disrespects you with a movement disorder called Segmental Dystonia or can grow tumors in places that threaten your life…..just sayin’.

Now I am riding home in an ambulance simply feeling grateful. There was no tumor growing in my mediastinum today and I will leave tomorrow to it’s own devices. :)

Have a great week.

#MedicalZebra #RareDisease #graditude

Hi, my name is Mandaloo.

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #Migraine #Fibromyalgia #PTSD #ADHD #Grief #Dystonia #sensoryverload #Isolation #Loneliness #alone #hypervigilant
Lastly looking for connection, with others, talking to myself isn't helping, when I made the decision to stay home and focus finally on myself, learning to love myself, set boundaries, trying to figure out who I really am, for at least 30yrs, I was a people pleaser, didn't know that I could have boundaries, and I love my mom,but I went through hell, she passed away in 2013, and I was 36yrs old, and actually until around 2015, at 38yrs old,I finally got courage to stand up for myself and I finally felt like I was an adult. But I'm stuck in a way of still trying to figure out who I really am, what do I actually like, or rather find and be my true #weirdautenicself

#Chromosome #Dystonia #develomentaldelay #delayHi, my name is Melanierae18. I'm here because my 13 month old daughter has a developmental delay and a 4p16.1 chromosonal duplication, I would like to learn more about this group of duplications because there is little studies on them. There is barely any studies on my daughter's duplication which makes it difficult to understand what she is going through.
#studies #Understanding