Complex Regional Pain Syndrome

It's sad that we have to worry about being gaslighted by our doctors and the people who are supposed to care.

I was worried after my tilt table test because how the nurse described it, basically it's the cardiologist personal interpretation when reading it. Not that I wanted a POTS diagnosis but any diagnosis is validation of what I have been experiencing.

Today I was validated, all the falls and light-headedness, dizziness make sense now. They suspected it and tossed the diagnosis around. - I have POTS.

It's a weight off my shoulders in I know what's going on but in another way it's a darkness I'm walking in to. I have so many questions.What does my future life look like with POTS and CRPS?

Will I lose my independence for good? No more long walks alone because I could pass out? Am I wheelchair bound because I could fall and seriously injure myself?

#POTS #CRPS #Stroke

It's sad that we have to worry about being gaslighted by our doctors and the people who are supposed to care.

I was worried after my tilt table test because how the nurse described it, basically it's the cardiologist personal interpretation when reading it. Not that I wanted a POTS diagnosis but any diagnosis is validation of what I have been experiencing.

Today I was validated, all the falls and light-headedness, dizziness make sense now. They suspected it and tossed the diagnosis around. - I have POTS.

It's a weight off my shoulders in I know what's going on but in another way it's a darkness I'm walking in to. I have so many questions.What does my future life look like with POTS and CRPS?

Will I lose my independence for good? No more long walks alone because I could pass out? Am I wheelchair bound because I could fall and seriously injure myself?

#POTS #CRPS #Stroke

What do you do when you're tired of being poked and examined? I just want to cancel all appointments and say enough. The amount of appointments and tests coming up is overwhelming.

I'm worried they'll gaslight me with this, "well tests are normal...are you seeing a therapist?"

Okay dude my tests may be normal but my depression isn't causing my blood pressure to drop or the gastro bleeding...

I need a break from life.

The little happiness I've had in my 38 years is not even a half percent worth the physical, emotional pain and heartache I've experienced and it just keeps piling up. This isn't a gift, it's hell.

( please no religious replies. Thanks.)

#CRPS #POTS #Stroke #MDD #Gaslightling #exhaustion #givingup

What do you do when you're tired of being poked and examined? I just want to cancel all appointments and say enough. The amount of appointments and tests coming up is overwhelming.

I'm worried they'll gaslight me with this, "well tests are normal...are you seeing a therapist?"

Okay dude my tests may be normal but my depression isn't causing my blood pressure to drop or the gastro bleeding...

I need a break from life.

The little happiness I've had in my 38 years is not even a half percent worth the physical, emotional pain and heartache I've experienced and it just keeps piling up. This isn't a gift, it's hell.

( please no religious replies. Thanks.)

#CRPS #POTS #Stroke #MDD #Gaslightling #exhaustion #givingup

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#LymeDisease #AngelmanSyndrome
#MultipleSclerosis
#AtrialFibrillationAndStroke #Anxiety #ChronicFatigueSyndrome #ALSLouGehrigsDisease #LearningDisabilities #ComplexRegionalPainSyndrome

Tina Morales – Miami, Florida

Lost: Her Father, Joaquin (diagnosed at 55, died at 63)

Joaquin Morales was a Cuban chef who made magic from spices and smoke. ALS silenced his kitchen, then his hands, then his lungs.

Tina, his only daughter, was just starting her medical internship when he got diagnosed. She moved back home, sacrificing her career to care for him. Every dish he used to cook, she learned to prepare — but he could never taste them again. He had to be fed by tube.

One night, during a family party, her father cried silently as he watched everyone eat his signature paella. Tina noticed, walked to him, and whispered, “I’ll make it again when you can eat it in heaven.”

He blinked twice. Yes.

When he passed, Tina held a cooking class in his name, serving his final dish to a room full of strangers, with a note: “This is the flavor of a man who couldn’t speak, but taught love in every bite.”
#MultipleSclerosis #MedullarySpongeKidney #CharcotMarieToothDisease #DuchenneMuscularDystrophy #DownSyndrome #AlzheimersDisease #ParkinsonsDisease #ALSLouGehrigsDisease #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigueSyndrome #ComplexRegionalPainSyndrome

So July 8th- 14th I was in the hospital, my last 48 hours there I saw 3 different doctors who were going to decide if I went home to unsafe environment or if they'd keep me there longer.

So finally last day there the newest doctor decided because hospital policy he'd discharge me even though I lived alone and was experiencing frequent falls, I fell that morning in the hospital. He refused to listen to my nurse who felt I wasn't ready to be discharged. He told me that not having help at home wasn't a hospital problem, it was a social problem, blaming hospital policy for his decision. He told me I could appeal his decision and I'd go to another unit and would not receive any further treatment or care, I'd just take up space in the hospital.

I chose not to appeal even though I was scared going home alone and was in tears ..My nurse was in tears and trying her best to get the doctor to listen to her. She told me I have a really bad feeling you're going to end up back here with severe injuries that we could have prevented.

This asshole recommended therapy and counseling in my discharge papers because I felt unsafe to be home alone because of my current health issues.

My primary Dr was pissed and even though she works for the same company, said I have a case of malpractice against the hospital.

#POTS #Stroke #CRPS #MDD

So July 8th- 14th I was in the hospital, my last 48 hours there I saw 3 different doctors who were going to decide if I went home to unsafe environment or if they'd keep me there longer.

So finally last day there the newest doctor decided because hospital policy he'd discharge me even though I lived alone and was experiencing frequent falls, I fell that morning in the hospital. He refused to listen to my nurse who felt I wasn't ready to be discharged. He told me that not having help at home wasn't a hospital problem, it was a social problem, blaming hospital policy for his decision. He told me I could appeal his decision and I'd go to another unit and would not receive any further treatment or care, I'd just take up space in the hospital.

I chose not to appeal even though I was scared going home alone and was in tears ..My nurse was in tears and trying her best to get the doctor to listen to her. She told me I have a really bad feeling you're going to end up back here with severe injuries that we could have prevented.

This asshole recommended therapy and counseling in my discharge papers because I felt unsafe to be home alone because of my current health issues.

My primary Dr was pissed and even though she works for the same company, said I have a case of malpractice against the hospital.

#POTS #Stroke #CRPS #MDD

I stopped quilling almost 2 years ago due to my #CRPS but am remembering how relaxing it was and how much I enjoyed making things. Bought a new kit and going to try my hand at it again this weekend.

#crafts #CRPS #POTS #Stroke #MDD #paperquilling