Posted April 12, 2015 Is anyone else here actually on disability? Yes, I am. I get a check in every month... I have to "pay my share" Share this post Link to post
Posted April 13, 2015 I've been labeled with A.D.D. ever since I was a kid. It's both been a blessing to me as well as a curse. It's easy to come up with several ideas and dive into several projects, yet I get overwhelmed easily or lose focus and then things are sometimes left unfinished. I'm only on medication for my depression. I was on Ridlelin (sp?) when I was a kid, but stopped when it was doing far more harm than good. Share this post Link to post
Posted April 13, 2015 I have Sherman's Disease which is the opposite of scholiosis, called kyphosis. It is where your spine curves more up and down than side to side. Also because of an accident when I was little and landing on the head of a railroad tie nail next to my spine the lower 8 inches of my spine my vertebrae are turned to the left. I have arthritis in my right knee and a possible torn miniscus, I suffer from severe migraines. I also have severe hypertension that became chronic from the severe pre-eclampsia I had when I was pregnant with my son. Instead of it going away after he was delivered it remained. It went undiagnosed until I was 26 weeks pregnant. On a side note I am the single Mom of a special needs little boy that just turned 7 years old. He was born 10 weeks early. He has ADHD, Global Developmental Delay, Sensory Processing Disorder, Atypical High Functioning Autism Spectrum Disorder, Childhood Epilepsy and a Chromosome 6 Micro-Deletion (10 genes on one copy of Chromosome 6 at 6q16.1 are missing). The Chromosome 6 Deletion is very rare. Most often no 2 people have the exact same deletion of genes so there isn't a lot of information on what to expect or what it can impact. Most often parents notice the delays and stuff. Kian is a very cute and very smart little boy. And he is learning at a very rapid rate. Share this post Link to post
Posted April 13, 2015 I'm riddled with chronic diseases which makes me very disabled and am currently housebound. They are so numerous even I have a hard time remembering them all. There's no point in me telling you what they are as there are so may of them plus they are mostly extremely rare and unusual. It's particularly unusual especially to have so many rare ones in one go, but I'm soldiering on. Something in me keeps fighting every day. Share this post Link to post
Posted April 13, 2015 I was diagnosed with Aspergers almost three weeks ago. I also have anxiety, depression, and PTSD that interfere with my ability to live. My menstrual cramps are awful, too, but they're only debilitating two weeks out of every month. :/ I probably won't be able to work until that gets taken care of. Share this post Link to post
Posted April 14, 2015 oddinomaly: Have you been checked for endometriosis or Polycystic Ovarian Syndrome (PCOS)? I have both of those along with ovarian cysts. The Dr's actually didn't know how I even got pregnant with my son because they said I shouldn't have been able to. The only other things I suffer from is anxiety and depression (mostly anxiety) and possibly PTSD from what all happened here in Dallas. Share this post Link to post
Posted April 14, 2015 My OB/GYN actually thinks it could be PCOS or endometriosis, but they aren't going to do the surgery because they want to try everything else first. Honestly I want a hysterectomy--I'd be getting one anyway because I'm trans and that's part of my plan to transition--but they won't let me get one because "What if you want kids?!?!? What if you change your mind!!! What if you want children!!! We don't care that it's literally ruining your education and your quality of life, we see you as a brood mare!!! Your value is only as high as how many kids you can produce!!! Ahhhhhh!!!" It's so stressful... Share this post Link to post
Posted April 14, 2015 I have Sherman's Disease which is the opposite of scholiosis, called kyphosis. It is where your spine curves more up and down than side to side. Also because of an accident when I was little and landing on the head of a railroad tie nail next to my spine the lower 8 inches of my spine my vertebrae are turned to the left. I have arthritis in my right knee and a possible torn miniscus, I suffer from severe migraines. I also have severe hypertension that became chronic from the severe pre-eclampsia I had when I was pregnant with my son. Instead of it going away after he was delivered it remained. It went undiagnosed until I was 26 weeks pregnant. On a side note I am the single Mom of a special needs little boy that just turned 7 years old. He was born 10 weeks early. He has ADHD, Global Developmental Delay, Sensory Processing Disorder, Atypical High Functioning Autism Spectrum Disorder, Childhood Epilepsy and a Chromosome 6 Micro-Deletion (10 genes on one copy of Chromosome 6 at 6q16.1 are missing). The Chromosome 6 Deletion is very rare. Most often no 2 people have the exact same deletion of genes so there isn't a lot of information on what to expect or what it can impact. Most often parents notice the delays and stuff. Kian is a very cute and very smart little boy. And he is learning at a very rapid rate. He sounds like a sweetheart Share this post Link to post
Posted April 14, 2015 (edited) some of my disabilities are somewhat self-diagnosed until i get a doctor to check them out and such, but this is my list of problems that i figure i have: (asterisks mean i was diagnosed) ADHD* Depression* Insomnia* PTSD Chronic Fatigue Syndrome Poly-Cystic Ovarian Disorder* Fibromyalgia Dissociative Identity Disorder Ocular Albinism* my mom is similar, except most of hers are diagnosed by doctors minus DID. my brother has an allergy to nickel and he probably has a back problem, and i also have a back problem when i pinched my sciatic nerve last year so i'm just kinda like "wwweeeeeellllllppppp" it's interesting, having disorders. it's hell, but it's interesting. also thank you to Mew_1 who helped me remember that i do, in fact, have a sight problem Edited April 14, 2015 by PoroNyoom Share this post Link to post
Posted April 14, 2015 Well, I'm visually impaired. It's kind of interesting because the doctor we went to when I was little said I wouldn't be able to see anything at all, and yet I can see light, and vague forms of people and objects (though I don't know what it is, it's just like a blur passes in front of me when someone walks across my path). Share this post Link to post
Posted April 14, 2015 My OB/GYN actually thinks it could be PCOS or endometriosis, but they aren't going to do the surgery because they want to try everything else first. Honestly I want a hysterectomy--I'd be getting one anyway because I'm trans and that's part of my plan to transition--but they won't let me get one because "What if you want kids?!?!? What if you change your mind!!! What if you want children!!! We don't care that it's literally ruining your education and your quality of life, we see you as a brood mare!!! Your value is only as high as how many kids you can produce!!! Ahhhhhh!!!" It's so stressful... Yeah.....my insurance won't cover a hysterectomy and when I had my tubal because the doctors said another pregnancy would more than likely kill me (I died twice on the table during the c-section) I was full of endometriosis and they removed it. Well.....when they remove it it creates scar tissue which is just as bad if not worse. Kian is an awesome child. He's a sweetheart and he's just the light of my life. Share this post Link to post
Posted April 14, 2015 Oh, what a cutie! He looks almost like some kids I grew up with. And it sounds like he has a wonderful mom. <3 Yikes. I'm pretty sure our insurance will cover a hysterectomy, it's just that "no doctor will operate on a 17 year old!!! You're too young to have surgery!!!! So what if it's destroying your life!!!!! So what if it's part of your transition plan!!!! CHILDREN!!" from...just about everyone in my life. Share this post Link to post
Posted April 14, 2015 Oh, what a cutie! He looks almost like some kids I grew up with. And it sounds like he has a wonderful mom. <3 Yikes. I'm pretty sure our insurance will cover a hysterectomy, it's just that "no doctor will operate on a 17 year old!!! You're too young to have surgery!!!! So what if it's destroying your life!!!!! So what if it's part of your transition plan!!!! CHILDREN!!" from...just about everyone in my life. They don't like to do them here unless you are at least 40. Medically they should do one on me. Kian is a riot. I try to be the best Mom I can. I am a single parent. It's tough sometimes. Share this post Link to post
Posted April 14, 2015 (edited) Yeah.....my insurance won't cover a hysterectomy and when I had my tubal because the doctors said another pregnancy would more than likely kill me (I died twice on the table during the c-section) I was full of endometriosis and they removed it. Well.....when they remove it it creates scar tissue which is just as bad if not worse. Kian is an awesome child. He's a sweetheart and he's just the light of my life. You're very lucky to have him - and to everyone not wanting kids that's their decision but some of us can't have them. It's breaking my heart I might not be able to as im getting too old, might be going through the menopause and one of my conditions could mean a pregnancy would kill me. QUOTE (oddinomaly @ Apr 13 2015, 07:13 PM) My OB/GYN actually thinks it could be PCOS or endometriosis, but they aren't going to do the surgery because they want to try everything else first. Honestly I want a hysterectomy--I'd be getting one anyway because I'm trans and that's part of my plan to transition--but they won't let me get one because "What if you want kids?!?!? What if you change your mind!!! What if you want children!!! We don't care that it's literally ruining your education and your quality of life, we see you as a brood mare!!! Your value is only as high as how many kids you can produce!!! Ahhhhhh!!!" It's so stressful... I think the docs are only looking out for your best interests when they ward off a hysterectomy. They certainly don't think of women as brood mares, they're looking out for you. Being a mother is the best job in the world and the most beautiful thing one can be - to create life, to carry life within you. To help bring another spirit being to earth. It's a huge life changing operation. Certainly not one I'd want in spite of the pain I'm in through geany problems. Edited April 14, 2015 by RockChick Share this post Link to post
Posted April 14, 2015 Okay, but here's the thing: I'm trans nonbinary, not a woman. I didn't want a uterus to begin with, and I definitely don't feel that children (or at least having them myself) would be in my best interest. Having a uterus alone makes me super duper uncomfortable; a small human inside that uterus would do really damaging things to my mental health. A hysterectomy is part of my plans for transition anyway; I would be getting one eventually regardless of whether or not I was in this situation, it'd just be happening later. I was hoping to hit two birds with one stone by taking care of medical conditions and also checking off a big part of my life goals. Share this post Link to post
Posted April 14, 2015 I didn't want children when I was younger. I didn't start even considering it until I was around 25-26. By the time I hit 30 I really wanted kids and didn't see it happening because I didn't have anyone. I then got married at 31 and had Kian at 32. My thing was I wish I would have had him when I was younger because maybe I wouldn't have had the many many problems I had during the pregnancy. Ultimately you have to do what is right for you. I don't think they would even let you sign a waiver at your age though. I don't even know if that is an option. Share this post Link to post
Posted April 14, 2015 Even tho I'm still able to have a child, I'm not... I have to many health issues/conditions to even consider to have a child. Share this post Link to post
Posted April 15, 2015 I have De Morsiers syndrome or Septo-Optic Dysplacia. As far as I understand it means that a tiny bit of my brain nerves are missing. The disease has been so awfully kind to give me a frail imune system, estrogen problems and a few more Medical conditions that I can't translate Except I'm vision impaired, legally or socially blind as they Call it. Except I see a Whole lot more than just ... nothing. But they can't decide how much I can actually see because I have mustagmus (which means I don't have controll over how my eyes behave, they just flutter around as they wish, but I've found a way around it and normally I don't notice it, except from when I try to and when I'm tired. Then my eyes flutter wildly, making me even more tired But they think I have between 0,1 and 2% eye sight on my left eye and between 0,1 and 5% on my right eye. Share this post Link to post
Posted April 15, 2015 I didn't want children when I was younger. I didn't start even considering it until I was around 25-26. By the time I hit 30 I really wanted kids and didn't see it happening because I didn't have anyone. I then got married at 31 and had Kian at 32. My thing was I wish I would have had him when I was younger because maybe I wouldn't have had the many many problems I had during the pregnancy. Ultimately you have to do what is right for you. I don't think they would even let you sign a waiver at your age though. I don't even know if that is an option. My mom had me in her early thirties too, and almost died. Complications must be more common in older folk... Well, they could, but I would need my parents to do it for me since I'm not yet 18. I know they won't, though, because they don't understand that this whole uterus thing is not working out (and actively destroying my life). Share this post Link to post
Posted April 16, 2015 (edited) I dunno if PCOS would be considered a disability. I have it as well, but it's very well maintained with hormonal medicine. It's not something that can effect how you live your life like anxiety or a severe injury can. Oh yes it can. It does when the pain from your period is so bad that you end up pacing the floor from 1am to 3am so that it stops hurting enough that you can get some sleep because the only alternative is curling up on the floor and screaming and screaming and screaming because over the counter painkillers don't work and it's agony. It does when you're bleeding so much that doing anything more strenuous than walking around the house causes the blood to start flooding so much that you wonder if a blood vessel in your uterus has torn and you're actually haemorrhaging. Not to mention the increase in pain caused by the increased flow. It does when this can last from 16-44 days and nothing stops it. If you have found a hormonal medicine that works that's great for you. I have yet to find one so for me this is a serious disability. Sometimes it's been so bad I've fantasised about stabbing myself in the stomach to severely damage my uterus so they have to take it out because all the doctor's say is "you're so young. We can't do it because you might want kids." Screw that. I'll adopt or get an egg donor if they won't remove my uterus. They seriously think I want to risk passing this on to my daughter(s)/grandaughter(s). Heck no. Edited April 16, 2015 by Cireth Share this post Link to post
Posted April 16, 2015 Bless you, Cireth. That sounds exactly like what I deal with. And thanks for helping me feel less alone. Share this post Link to post
Posted April 17, 2015 (edited) Well, as far as disabilities go, i've had numerous physical therapists and doctors basically tell me i'm a skeletal mess. I've got (and mind you i'm only 21) Retroverted hips Inverted knees Hypermobility (joints bend past the point they should. also called double jointed but it's slightly different...) Possible arthritis (i'll be going in soon to see) "J" Typical Platella Dislocation. It isn't the actual name, but the name my doctor used. Basically, my knee caps say you and completely move out of socket in a J shape around the joint. Flat footed to the point of lolololowhat is an arch Misaligned disk in my back that occasionally decides to pinch the nerve and make me lose feeling in my legs. Possible exercise induced Asthma And then mental wise I've never had anything officially diagnosed, per se, but it's pretty damn obvious that Anxiety is a thing, as is possible depression and maybe some form of Dissociative. I handle most of this stuff pretty well, but it really does get old having to explain to people that while, Yes, I am a bit overweight, the reason I can't do something isn't because of that. It's because my knees / hypermobility / etc literally will not let me do that without the risk of dislocating something. I've dislocated my shoulder picking up a gallon of milk. I've thrown my knee out of socket simply turning the corner on a side walk (and then had to push my knee cap back into socket. Couldn't walk for 3 days without leaning on something / crawl). I'm so tired of people being all "Hey, why not go for a run? You could lose some of that weight?" WHY YES I'D LOVE TO BUT UNFORTUNATELY HYPERMOBILITY OCCASIONALLY CAUSES MY RIB CAGE TO LOCK UP (which sounds scarier than it is. I can still breathe, it just hurts like hell). OH and lets not forget that were it not for birth control I had 10 day long period with cramps so dibilitating that I would be taking easily 12 ibuprofen a day and still be in so much pain my legs would go numb and I'd want to scream. Along with I'd bleed so heavily I'd have to change whatever I was using every 3 - 4 hours and lol what is sleep when you wake up every 2 hours out of terror you bled through? : DDD ....i didnt mean to rant. but i dont talk about what's all wrong with me much because i just feel like i'm complaining -hides- Edited April 17, 2015 by Wandering4Ever Share this post Link to post
Posted April 17, 2015 I'm a product of America, which basically means at just over a quarter of a century old I'm full of disease and unhealthiness. Yay, Monsanto in my food/water from infancy on up, coupled with the great hormones in the milk and the ridiculous amounts of unncessary over-cleaning. -- I have Rapid Cycling Bipolar Disorder. I have Generalized Anxiety Disorder. I have Post Traumatic Stress Disorder. I have Fibromyalgia. Share this post Link to post
Posted April 17, 2015 Everyone who has PTSD, please make sure its not Borderline Personality Disorder. I was misdiagnosed with it for 15 years The symptoms are about the same, but it takes a specialist to verify the difference, though not much they can do about it with me too many different disorders that any meds counteract. On top of that, I have agoraphobia and suffer serious panic attacks from just going to the store. from the BPD I have G.A.D as well, Generalized Anxiety disorder. Insomnia Blind in my left eye from birth Arthritis in my wrist, ankle Loose nerve in back Paranoia, Dyscalculia ( Math dyslexia) Normal Dyslexia Light sensitivity Allergic to tylenol and Latex ( not sure that counts) body overheats easily ( I live in the south and stay inside during the day and anemic) Vampire anyone? Oh and when I start my cycle I get violently sick to where I need have bedrest a week before it starts. Not to mention a few smaller things, so that's about it. I'm trying to disability and my familly thinks I'm faking for attention, if so I hid it from them for 15 years. pretty sure that's not. Share this post Link to post
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