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#Pain in all my joints #surgeries #hes of course

My feet, ankles, back, thumbs, hands, wrists, hips, lumbar spine, side bones of back have been addressed. They are all deformed in one way or another by this disease. Fusions have been done for the joints that can be fused. Poor outcomes keep coming from any treatments. Now, jaw is failing. I am hoping to find a jaw hEDS maxillofacial surgeon/dentist in Salt Lake City. I hope I will find someone who can stabilize a slip/sliding jaw so I can get two diseased molars pulled. In 1986 a maxillofacial surgeon placed Teflon into both sides of my jaw. It is now failing. As connective tissues in hips and back have worn away, I don’t know what they can do anywhere without connective tissue to hold stuff together. Not shoulders or feet. I am thankful the Teflon helped for so long.
I wish my primary doctor was interested in this syndrome. His job so he says is to just order pain meds. He keeps ordering Percocet. I am at a high dose. 30 mg Percocet. I am a 74 yr old woman living alone with her kitty. I hired a disabled man for $18 an hour to drive me to the dentists and doctors. I am thankful I can afford to get food delivered. What’s goin’ on with all my bendy friends? Do any of you know dental surgeons who might help? Any advice about anything


Why does he (she) after so many years of knowing what I deal with, still act as if nothing is wrong or that I shouldn’t act /feel a certain way?

Do I expect too much? Is it wrong for me to want to be believed and respected? What will
It take for him to “help” and to treat me as his equal even tho most of the time I myself don’t feel equal? Living with these issues really sucks! #Fibromyalgia #sick of being sick #degenerative disc #surgeries #Depression #hormonal issues


My Condition #Depression#Pain#Anxiety

I was in a #CarAccident months ago and its turned my life upside down. I am 11 months into recovery and #struggling more in many ways then the initial #painful months.

My ride-share driver had a seizure one morning on the way to work last March and my life hasn't been the same since. I was #hospitalized for 10 days in inpatient for 11 and have been recovering from home since then. I thought I would be so much further than I am now. It's soul crushing.

I got out alive, barely with 8 #fractures including #surgeries in both of my legs. I was bed ridden for months. On a walker for months. And I still use a cane today. I also #Broke small back bones, my finger and 4 ribs. But whos counting right?

I have moments of happiness that are surrounded with sadness.

I am utterly disappointed in almost everyone around me.

My husband, best friend and Mom have been there for me with open arms. 

They are all that I have. 

And my dog.

I have the clarity to see the true character of the friends I have chosen.

The results are sobering.

I can no longer escape my pain with my old habits. 

I can no longer resort to the things that defined me as me.

I can no longer resort on the tools that relieved my stress my entire life. 

Drinking, drugs, music, people all cause me pain. 

I am at a loss.

I am not happy with my support system today.

I don’t even know what I truly expect from anyone.

If they cared enough to join me in the world I am trapped in. 

Because I am not able to join the world.

I constantly feel alone. 

I feel abandoned.

I feel lost.

When I try to reach out to those around me. 

It just ends in a worse place than it started. 

Because no one really understands. 

No one cares enough to ask, or genuinely check in.

I don't think I can ever forgive them or see them the same. 

The groundhog day that I have been in for months on end. 

I am consumed with so much sadness.

I could break into tears at any moment.

The only moment I get reprieve is when I have medication. 

Enough to ease my pain, calm my mind and give my energy back.   

But it turns on me. 

For every day it gives me joy it gives me twice the pain. 

I have realized how alone in the world I truly am. 

Even tho I am just as alone as I was before. 

For the first time in my life I needed help. 

And even when I begged in tears for months on end it wasn’t enough. 

I have become estranged from my family over the years. 

And I am almost 40 with no children. 

I am questioning what the rest of my life will look like. 

I am afraid that it will feel as alone as the past 11 months have felt. 

I am easily upset, an open wound, vulnerable and unlike myself. 

I appear to be okay sometimes but I am not. 

The quiet asks from you, are actually loud cries. 

My career was taken from me. My health was taken from me. My energy was taken from me. 

My freedom was taken from me. 

My life perspective was taken from me. My happiness was taken from me. 

And I can’t find my way back….