I just found out that I was diagnosed with Ehlers-Danlos Syndrome, which nixes out Hypermobility and Undifferentiated Connective Tissue. Down to just five chronic illnesses! I'd make a list of all the wrong diagnoses I've had but it's getting ridiculous so we'll just skip that step. It's taken a total of twelve years from start to finish (theoretically. If we're done with this ridiculous exercise on patience that I don't have.) to get the full picture. We're down to Celiac (autoimmune), Hashimoto's Hypothyroid (autoimmune), POTS (autonomic), Gastroparesis (autonomic) and Ehlers-Danlos Syndrome (autonomic ish? It's a genetic disorder that attacks different things in the autonomic nervous system and collagen. But you go to a Rheumatologist typically for general treatment so it's a little confusing. No this isn't caused by attack T cells gone haywire, basically.).
There are different types of EDS so we need to narrow it down. I'm calling my Rheumatologist tomorrow to talk about it all. Basically it can affect skin, blood vessels, joint flexibility and mobility. Very genetic so my brother and sister need to get checked for it too. The skin bit is it can cause the skin to bruise easily, skin to be more thin and almost translucent (haha, sound familiar? Miss whiter than scar tissue here), blood vessels are small and fragile (making it harder for IVs or blood draws as well as finding a pulse) and in some cases put them at risk of rupturing. The joint bit is hypermobility just more specific. Joints can dislocate fully or partially, joints pop all the time (heh) and you can have connective tissue issues. This disease, from what I've read, is in kind the grey area between autoimmune and autonomic. It's pretty rare (naturally). Yes, it's chronic. Yes, it's genetic. Meaning there is no fix or easy solution, just something you integrate into daily life like any other lifelong illness.
As with all of these illnesses, they're not going to go away. I've gotten some questions lately so sorry if I'm repeating myself. There is a VERY strong chance, and seeing as it's me I'd say it's a guarantee that if I had kids they would have one or more of my illnesses or one that runs in my family. I want to be a mom (in the VERY DISTANT future) but there's no way I'm playing this game again and I'm not putting my mom through it again either. I'm planning on adopting. That's a conversation I'll have to have with whatever guy eventually decides to consider a life with me. Or something I might decide do on my own at some point. No, none of these illnesses are contagious or sexually transmitted. The only way anyone would "catch" these from me would be if they were my child. Or grandchild.
I want the full picture of absolutely everything going on and their ramifications for now, five years down the road and the potential hazards I'll have to keep an eye out for in future. I'm not stopping til this shit is completely locked down. Twelve years. This is ending and it's ending now. This summer I turn 25 and there's no way I'm spending another year playing the rounds with different doctors.
If you couldn't tell I'm a little peeved, sorry. I looked up EDS and there was a pamphlet online. It listed wrong diagnostics for EDS and two of them were, "Growing pains" and "It's all in your head". And this is socially acceptable?? In med school do they literally tell students that it's ok to feed this kind of crap to a sick patient? I've gotten both of those as well as a looong list of auto immune diseases that I've decided are just what they tell people when they frankly have no clue what's going on. I get that EDS is rare. Got it. Check. But since it's a disease that's internationally recognized as real, not to mention serious, maybe if a patient has every single symptom in the book you could consider running the very simple blood test for it instead of lying to cover the fact that you don't care enough about your profession to put in any real effort.
I feel like if I see a new doctor I need to make a print out of everything I have going on, sit them down like a child and watch them read it before they're allowed to touch me. Or poke. Or tase. I know that in some districts they make cops have a taser used on them before they're allowed to carry one. Can they do that with doctors? I know nurses try to follow that idea to an extent, in terms of trying barium, charcoal and other "drinks" some patients have to take for different reasons. It's just a suggestion.
No comments:
Post a Comment