Hypophosphatasia

#BipolarDisorder #CPTSD #PTSD #Anxiety #EhlersDanlosSyndrome #Hypophosphatasia #badvibes #Depression

I was diagnosed with Hypophosphatasia three years ago...I never thought it would be so hard to find doctor's who knew what the hell HPP was. Then I got diagnosed with Ehlers-Danlos... Where it's near to impossible to find doctor's who know what it is and if they do, they have no desire to treat you.
With EDS comes Post Orthostatic Tachycardia Syndrome aka POTS, which causes dizziness due to a spike or decrease in blood pressure.
After getting denied to my hospitals Rheumatology department to see a doctor for POTS today, I asked my daughter's POTS doctor at her appointment to steer me in a good direction for a doctor.
He automatically understood the challenge I was having and apologized for not being able to accept adult patients. The one doctor that I could see he said is about a two hour trip for me.
I called them anyway and was told he had an 18 month long waiting list! I'm not surprised as this seems to be the case when you have "rare" disorders, but I still felt defeated.
I, of course, put my name on the waiting list... What other options do I have?
And there is the problem people. We have no other options but to wait... And waiting for the majority of us can be dangerous. Most my days lately are spent getting dizzy, some days are bad enough that I almost faint. I wonder... How do I wait 18 months before I can have a specialist help me?
Not only do we have to deal with the waiting game, but no one acknowledges the trauma that rare and chronic patients have to endure. We are treated like pariahs in the medical community, treated as if we're a burden.
Why aren't there more specialists and informative doctor's for rare diseases? Why isn't there better care for us? Don't we matter too? How do we educate more doctor's?#EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Hypophosphatasia #RareDisease #ChronicIllness #Doctors #Defeated #CPTSD

#Hypophosphatasia #HypermobileTypeEDS #bestill #BipolarDisorder #Healing

This month has been hard on me so far, with my 37th birthday approaching and knowing I'm not anywhere near where I wanted to be in my life right now. Chronic Illness took me off track years ago and I'm having a rough time figuring out what my future looks like from here. So if you're feeling this way too, if you're struggling to hold it together right now, just know you aren't alone💙 #ChronicIllness #Bipolar2Disorder #EhlersDanlosSyndrome #Hypophosphatasia #RareDisease