I get a bit depressed any time I’m away from the other Buddhists. I mean, it’s exhausting for me mentally and physically to chant for 6 hours on Sundays. That was just today. Its normally 2 hours and even then I feel I’m about to pass out. My disabilities get in the way of everything in life. The worst part is when you’re poor, you can’t get anyone to say you’re disabled, because they don’t want you to get any benefits. A middle class or rich person who went through what I went through would have been handed a wheelchair from day 1. I was basically kicked out of the hospital and told that I’d be alright. Anyone else living with the pain I’m I would kill themselves just because of that alone. I can’t even go shopping for myself because I need a wheelchair and t he cheap ass stores I go to don’t have wheelchairs and aren’t accessible anyway. You’d have to be rich to be disabled, because only the fancy newer condos have elevators, feels like 95% of housing in Chicago isn’t acessible. My hands go panfully numb all the time and I can’t breathe to keep up with chanting as fast as everyone else does it. I have obvious nerve damage and nerve issues but I can’t do anything about it beyond take a nerve pill which doesn’t seem like it does shit for me anymore. I’ve been living with it for 17 years. A friend of mine who had her back injury only a year ago whose parents are rich gets the best care and gets to be declared disabled but I dont. Being poor, my doctors not even allowed to diagnose me with fibromyalgia though he thinks I have that among pinched nerves. Our hands are tied as you can only have one GP so you have to choose between being on hormones or getting other healthcare. So in that case, being transgender and disabled and poor is a tri-fold screw over. I’ve been trying to fight my pain all this time, thinking I’d beat it eventually. But days like today I feel like I’m going to drop dead because I’m in so much excruciating, agonizing, unimaginable pain that I just can’t take. Enough to make you want to die.
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Geez, I have no idea how you do this. Nerve pain is HELL, (and from what I’ve heard, so is Chicago; I hope one day you might be able to move away to somewhere kinder.) and you’re a freaking superhero for enduring that on top of everything else.
My heart hurts for you. You are so strong for being able to endure all of that even though you are obviously in much pain, I sure as hell know I couldn’t. I really, truly hope your situation gets better. I hate the way our country’s health system works. ugh. Makes me so angry. I want you to know that I’m rooting for you. I hope your devotion to your religion brings you comfort.
Right about our BS healthcare system. Me and my friend have both had lower back injuries. Mine, 17 years ago, hers, 1 year ago. Me, poor, no insurance at the time (I have it now that I live in a state that gives med cards to the poor), while she, while not rich, her parents are, and have stepped in to pay the bills. She says she has seen specialists that are known to be in the top 5 best in the world. She’s legally disabled. She’s officially diagnosed. She’s having surgery (oddly not on her back but elsewhere to improve her breathing first). Me, I’m just forced to suffer and carry on, not being recognized as disabled. My mom’s not rich, but lucked out with an employer who pays for insurance. She gets anything she needs. So did my grandma, who paid for her insurance yet wasn’t rich either. It’s all about who has the money. Obamacare doesn’t give us poor people the same level of access. No, we have the same level of access as we did before the mandate, which is the bare minimum of care.
Thanks, both of you. I know I’m stronger than most, but maybe my pain tolerance still isn’t what it should be, because a lot of people expect me to do more than I can, and insist that I need to just ‘work it out’. I had a back injury when I was 20, a month before turning 21. I couldn’t walk for several months, then got physical therapy for several more months which was basically just being forced to walk on treadmill for hours. I think the numbness in my hands is from the testosterone, since that is a new thing. The sciatica symptoms, severe back pain, numbness in the legs and blacking out/seizures were from the time of recovery and being able to walk again. The numbness and pain in my hands came after my arms bulked up from the testosterone. My theory is that the thickening of my biceps and triceps has pinched some nerves and is what’s causing me pain in my hands. Even my doc says a back injury wouldn’t be what’s affecting my hands so that nerve issue has to be more local. SIGH.
@disgusting Your post is very heart wrenching. So much pain for one person, too much. I admire you for hanging on and keeping up the fight. Seriously hope your future holds something amazing.
I’d like to share with you some of my experience and knowledge. Your doctor is WRONG. Flat out WRONG! I am guessing your doctor is not a pain specialist or neurologist and for that reason would be oblivious to specialized education regarding pain. The sensation in your hands would happen regardless of testosterone and muscle growth. What you are experiencing is the natural progression of any pain but especially nerve pain. The most basic explanation is this, if you trigger and activate pain receptors for a prolonged amount of time – eventually they just won’t shut off. The pain spreads, especially to hands, legs and skin. Here is the article on wikki
https://en.wikipedia.org/wiki/Allodynia
(for those of you reading this, this hypothesis is easy to prove and record for physical pain but researchers are now wondering if the same hypothesis can be applied to emotional pain – if it doesn’t get shut off at some point, does it self replicate??..interesting)
This diagnosis of Allodynia changed my life! I used to scream when i took a shower. Felt like a crazy person every time i had to tell a doctor my skin hurt. They looked at me like i was insane. Finally found a doctor who not only understood but was pretty much able to tell me everything weird i had ever felt was “totally normal” It was the most amazing feeling – not being crazy. I hope this knowledge might help you some.
why can’t i post a comment?
Finally, I can post again! @Disgusting- I have nerve pain from an auto injury stemming from my spine that affects my legs and hands (and everything in between). I’m “disabled” and I think you and I have a lot of things in common- from doctors and people in general dismissing everything we say, to the level of medical care you receive, or not receive, due to being poor.
I’ve ranted and ranted about all this to people and all I’ve gotten was “you’re crazy, and it’s all in your head” bs from people. I’ve recently in the last few years met some local people in my chronic illness support groups who have also gone through what I’ve gone through (different ailments, but same sh*tty care) and it wasn’t till then that I finally felt vindicated- that it wasn’t just me. That finally I’ve met others like me. Now, I don’t go to the groups anymore because, well, everyone is too sick to meet up -_-‘ so these groups eventually close.
Anyhow, if you would like to have someone to talk to who understands what you’re going through, and to rant and rage against the unfairness of it all, let me know. We can be like pen pals (email pals). If you want. 🙂
Wow, I feel fortunate to have people who understand and know what I’m talking about. I’ve had doctors flat out say nothing is wrong, to my family saying I wouldn’t have had pain to begin with (at the time of injury) if I had not been overweight. ?!?! Like, seriously?!? Because I’ve known skinny people who can barely walk and 600lb-ers that walk with no pain at all! Yeah I was like 240 in high school after lifting weights and putting on a good 60lbs of muscle. I found out I was stronger than average and I loved it. But a doctor actually did this to me. An anesthesiologist tried to cut a peep hole in my back to see down to my spine to see where to put a needle in for a spinal tap and fucked up royally. He couldn’t see anything and tore the shit out of my lower back. In WV they make you sign a paper that says you can’t sue even if you die and you have to accept whatever they want to do to you, or else I would have been let go and left for nature to take its course, which probably would have been pretty bad. But anyway, I constantly have friends telling me that it’s mind over matter and if I just make myself walk more, I’ll get better. What I’m afraid of is blacking out or having a seizure in the city where I’d surely get robbed of everything I’ve got. This isn’t hicksville where people find you on Facebook to return the things you lost while you were incapacitated. (Yes that really happened) which is why I don’t push myself because if I do, I know what happens! But people think I’m just a lazy fat ass who won’t get off my ass and move. But anyway, I’m so glad you two understand and believe me about my nerve pain, numbness, and past black outs.
We totally hear you and of course believe you! Damn doctors, some of them! Grrrrr. Anytime you need to talk to someone about it, there are lots of people here who understand
I just read the wiki and my skin doesn’t hurt and it doesn’t hurt me to be touched. That is scary as hell though, because I never want it to be to where I couldn’t handle being touched. I am itchy all over but I’ve been told that’s my dry skin. Nothing helps that either. But I’ll scratch myself raw, especially on my hands. Anyway, I guess that makes sense, about the pain never shutting off. I wish it would because I’ll never get ahead. Like today at work, my boss thought I wasn’t willing to step up into a leadership role and I’ve been wanting this for a long time, but I can’t stand up for an hour to lead a meeting, I just cant. What do people in wheelchairs do? Just collect $600 a month and say to hell with ever working or achieving anything??? 🙁