It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32. Kidney stones, kidney failure. Tumors wrapped around my ovaries so badly that I had to have a full hysterectomy at 34.
No one did anything. No doctor I went to even tried to find out why. And I've been begging for help for 28 years. No one has helped. They gaslight me. Ignore my concerns and ask me if I have a psychiatrist. Because who has so much wrong with them? She must be making it up.
Not making it up
So I have hyperparathyroidism, congestive heart failure, ventricular tachycardia, mitral valve regurgitation, a bicuspid aortic valve, thoracic sarcoidosis, and end-stage fibrosis because it wasn't diagnosed for 20 years. The sarcoidosis invaded my heart and scarred it. I also was newly diagnosed with end-stage amyloidosis, diabetes, and a pacemaker defibrillator, and I've had 3 major blood clots on top of arthritis. I also just found out when I went in for glasses that I now have bilateral cataracts and, oh joy, glaucoma!
But wait, there is more
Osteoporosis at 35, a tumor I've been pointing out for 23 years finally was actually seen during a nuclear PET scan looking for something else. But again I'm too sick to operate. A fistula in my stomach. Spinal stenosis. Broke 2 vertebrae in May. Broken leg for 2nd time in the same place (not from a fall). It just broke. Neuropathy. Degenerative disc and facet disease of my entire lumbar spine. All of my teeth fell out at 45 years old from untreated hyperparathyroidism and the osteoporosis it caused. I had a misdiagnosed broken foot (they refused to cast it) and I found out 20+ years later that the top of my excruciating foot pain is because I had a broken foot left untreated and now the top bones on my foot are fused making it very difficult to walk.
I tore my plantar fascia (8 months in a boot.) I lost most of my hair. I now jerk and shake uncontrollably and have been gaslighted for 15 years about it. A neuroimmunologist can see me in March of 2024. Migraines. oh, in May when I broke my vertebrae I found out I'm no longer allowed to take Tylenol or any NSAIDs. I am allergic to 4 nerve meds so doctors insist that I try them again. Why? They nearly killed me.
Not just in my head
OK, so the doctors just walk out of the room leaving me sitting there. I was misdiagnosed with bipolar disorder and took antipsychotics for 23 years. It gave me horrible diabetes and I found out that amyloidosis, hyperparathyroidism, and sarcoidosis have the same mental symptoms. I quit the antipsychotics in January and am now fine. I took a drug for 23 years because it was easier to send me to a psychiatrist than to dig deeper.
I fired all of them 2 days ago. Every one of them. Palliative care is coming out to set things up for me. I thought the hardest thing would be walking away from doctors who weren't treating me for anything but fluid pills and diabetes meds. I found out what was worse was that I had been begging for help and no one listened until I ended up in a hospital in critical or intensive care. And wow! She wasn't making it up!
No more tests
I've had 3 PET scans 4 MRIs, a liver ultrasound, 5 CTs, and over 100 blood tests (I shit you not) since July. I've been to between 5 and 10 doctor appts and/or procedures a week since mid-July. I have 3 surgeries scheduled for December. 30 + appts between now and mid-January. I called them all up and canceled. No matter what they've found out in the last 6 months, it's always the same answer: "So sorry, the damage has been done. No treatment. We'll just keep an eye on it until it gets worse." NOPE! DONE. NO MORE.
So yeah the worst thing is realizing that the sources I went to for help never helped. They just charged $600 a visit for maybe 10-15 min? They're rich. Adding it all up Including the $250k for 2 pacemakers, the doctors and hospitals have benefitted nearly 3 million dollars off my insurance and I'm dying at 56 years old.
Because of so many misdiagnoses and gaslighting, I'm beyond angry. I ended up in the hospital so many times because doctors ignored me until I had a physical emergency and they had to treat me because I was critically ill. No one had my back. No one cared. I now realize it was always just me reaching out for help to who I thought could help and that I was wrong. It was a delusion. I've been sober for 36 years and I now have to start taking morphine for the pain because I can't even sleep for days because of the pain and there's nothing else. All other meds have been taken away.
Trying to find acceptance
I'm going to die. It's really going to happen and I'm scared shitless. All the friends I thought I had? They left long ago. Family? Them too. My business? Gone. My life partner? He started drinking after 10 years of sobriety because it was just too much for him. I let him go because it was killing me to watch him suffer over my illnesses. I've lost everything.
I give up. I've been sobbing for 3 days since I made my decision to fire my doctors. I'm just tired. I really just want to be left alone. I want to play with my cats. As soon as my motorized wheelchair arrives, I'll go to accessible parks. I'll take a train to Washington DC and see all of my favorite art museums. Get a motel room on the highest floor with a balcony overlooking the beach and sit out there and smell the salt air and feel the warmth of the sun on my cheeks. I have done nothing fun for 20+ years. Because I've been so sick and in so much crippling pain with no treatment.
The damage is done
Thanks for reading this. I hope yet, I don't wish, that someone can relate. The worst part about this is that it's all true and there's nothing to be done. Literally, I take an antidepressant, fluid meds, and diabetic meds. (And potassium, magnesium, iron, and b12 and curcumin of my own research and desperation...it has helped a little) but nothing else. My heart is too weak for even heart meds. Sarcoidosis has destroyed 3/4 of my lungs with scar tissue and scarred up my heart, but it's not active. No treatment. Damage is done.
I wish I had some hope to share or words of wisdom, but I have none. Just 28 years of wasted life and excruciating pain. It has always been just me. That is the tragedy of it. That's why so much grief. I'm giving myself till Monday (3 days) to grieve and cry and then will do my best to let it go. To begin to heal. To be done with clawing and begging for help that never came. To find some peace before I die.
My wish for others
I wish everyone a good doctor. People who help ease your pain. For a family that doesn't leave. For friends who are true and see you through everything. I wish for all the things I've wanted in my life for you to have. I wish you peace in the middle of the storm. Don't give up. Don't take no. Turn in gaslighting doctors. Try to find happiness; grab any little tiny bit of it that you can. And in the end, if it turns out like my story, comment on my story. I don't know if I can do anything but listen, but to be heard is golden. To be acknowledged.
Take care, everyone!
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