TheBendyBunch

Alright. After finally finding a doctor who would chase my symptoms to a diagnosis, I got genetic screening and it turns out I have Hypophosphatasia (HPP).

Anyone else?

I was honestly upset that my diagnosis wasn’t EDS because there’s a community. This is so rare in adults apparently, but I thought that might not actually be the case.

#TheBendyBunch

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#BorreliaTBRF
#Babesiaduncani
#Borreliosisburgdorferi
#PosturalOrthostaticTachycardiaSyndrome
#PainfulBladderSyndome
#IrritableBowelSyndromeIBS
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#HashimotosThyroiditis
#AddisonsDisease
#EBV
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#ChronicIllnessEDS
#HEDS
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain
#ChronicFatigue
#RareDisease
#Community