Thank you. I was born missing part of my heart, and ableism is just not talked about enough. I really needed to hear this today. It’s so easy to be compared to other people, and have them say ‘this person can do this, why can’t you?’ It gets to me so bad sometimes. And when we’ve done this before we know when something is wrong. There are so many times I’ve gotten far worse because nobody listened when I knew something was wrong. So thank you for giving us a voice.
So sorry I take pain meds everyday for 7 years what people don't realize when you are in extreme pain it only takes the edge off slightly and like you said helps me get out of bed because we have been on so long it doesn't work as good as it use to but it still helps ❤ Sending you hugs from MI
Your story is incredible. My heart goes out to you as a fellow Spoonie. You are not alone. I have been in chronic pain since I was 21...i am now 32. It is INCREDIBLY difficult to not be able to be physically active , especially being young and being a former athlete. I know the mental struggle all too well. Xox
Thank you for sharing your story to us. All my love towards you. Don't give up keep going... look at it, this way you're not an a wheelchair. So "thank God " . I am fighting everyday with fibromalgia . Yes i used to be very active in sport's ice hockey, basketball, baseball you name it. And on top of that I also gone throw back surgery having three herniated discs the doc toke two out and one is not touching my spinal cord so he decided to leave the one in. So hey am looking at it as positive as I can. Not being an a weel chair thank God. Still being as active as by working, driving swimming as much as I can do , hey still enjoying life and I'm not giving up just looking forward in life. Your beautyfull and I see that you're a very strong person smart, and intelligent.
I'm amazed to hear your story, and am moved by what you share. I also danced ballet, and was very active until my condition eroded my ability to walk. I too went through some of the proceedures you mentioned, and suffer chronic pain. I have been considering decompression surgery. Yet the idea that it could potentially leave me in more pain is unbearable. I relate deeply with so many things you have shared. I wish I had the courage to share my experience on social media like you have, and find your sharing to be so very courageous. I subscribed, hoping to hear more about your story. I find wonderful outlets in my artistry and passion for literature. My sweet kitty can sense when pain levels rise, and often comes to snuggle and purr at just the right time. It's amazing, and very soothing. I appreciate your candid sharing in this video. It helps to know we are not alone in this challenging battle.
I never know the "right things" to say, but I just want to let you know my heart sincerely goes out to you. I can't imagine all you've had to deal with! You are absolutely beautiful, your smile could light up a room, and you are EXTREMELY well spoken (and you obviously like cats and anyone that likes cats is good in my book lol)! Take care of yourself and hugs from North Carolina =)
You are extremely brave. I have whats called an atypical facial neuralgia. All of my teeth hurt 24/7 and I am on lots of meds. We, the chronic pain sufferers are in a tought spot. But I hope and pray that one day, they'll be able to find a solution for us.
Lost story short. It's been almost 3 years since but my wife. And something told me to look up disability stories and I found yours. Thank you so so much you are brave times ten just for making the video. I know how hard it is to relive it when you tell your story. You make me feel not alone. Crazy cause I don't know you but people sometimes just how it is to go every day 24/7 with a disability. Sorry for commenting you up it just you made a video like know other. The most positive video I've
Bless your heart ❤️ for sharing your story. You have given me a little hope 🙂 I’m in the beginning stage of Apply for disability. It really hurts when people look at you like your and they don’t see the disability on the outside. So they assume I’m just lazy or if I changed my diet I would be fine. I have lost so many relationships with boyfriend family members and friends. Not to mention jobs. I have a sleep disorder. I can go two or three days without any sleep. I have no quality of life at the moment. Praying that will change one day soon. Sending you love & prayers 😇
You're a brave woman I'm 59 was active cyclist a year and half ago my Dr noticed my left hand had mild atrophy he thought it was Carpal Tunnel went for a barrage of test's after a nerve test it was determined that I had CMT a disease that basically kills the nerves that control you're muscles which in time the muscle wastes away and atrophy in all it's glory starts in you're feet works up affects you're legs hands I'm left handed and that hand is my worst last Summer was a nightmare because this disease also affects you're balance I had many falls rolled my ankle displaced my Fibia 4MM and pretty much left it because I live alone and couldn't be not able to drive no pain thank's to the disease it's pretty numb my feet and ankles so it never bothered me had to start using a cane this disease rob's you of you're dignity you're brain is unaffected so basically you get to watch yourself waste away the only light recently got fitted for braces and am able to walk without the cane after hearing you're story I was truly moved you're a strong woman make's me feel small hearing what you've been through my only comfort is that it happened now in my 50's which wasn't the case for you. I wish you all the Best in you're Brave fight God Bless.
Thanks for being so brave and sharing your life with all of us. I'm gathering courage to start my channel. I know exactly how you feel. I also have a several spine conditions.
Dear Izzy, you are a brave lady for sharing your story. The tears are needed sometimes but you also have a beautiful smile. I also have a disability with my spine a problem from birth that really caused problems in my 40’s. as a separate issue I had an L5 S1 spinal fusion artificial disc. And another surgery to free my sciatic nerve. I life with chronic pain caused by the spinal fluid not running correctly for years. My hips and legs I can’t walk far or stand for long. I was a registered nurse and had to retire early and I no longer drive because I don’t feel safe due to the amount of narcotic and other drugs I take. I don’t look sick either,people wander why I don’t work and I had to fight to obtain a disability pension. The pain and conditions rob you of so much and sometimes I just have to go back to bed. I try to be strong and use energy to put on the I’m ok face. I try to find some good in every day and be positive if I’m feeling down I try and pamper myself in some way. I hope explaining my story helps you stay strong. I’m a good listener if you want to message me. ❤️
hi there! I just wanted to say thank you for this video. I randomly came across it in my recommendations and I'm so glad I did. I am disabled as well, but in a much different way. Even though I can't relate exactly to what you have been through and continue to go through, I can say that I understand and relate very much to how your disability and what other's say makes you feel. You yourself are so strong and brave. I don't know if you have any social media links where I can connect with you but you can find mine on my channel - I'd love to be in touch. Stay strong and keep doing your thing! You're beautiful through and through. Thanks again for sharing. - Dini :)
Very toughing video! I also have problems in the sacral/lumbar level. Even if I can walk pretty well, I have severe problems controlling my bladder, it is a really invalidating effect. Even if I don't have any pain, it is an hygienic problem and an humiliating situation at such a young age. I hope you create some videos about bladder control and what are your experiences and suggestion to manage a leaky bladder.
Hey, Sandra! First, I would like to thank you so much for watching my video. I wish I could offer some sort of advice or "life hack," for lack of a better word, when it comes to bladder leakage, but I don't experience that side effect. I have almost the opposite problem where, when my nerve pain gets worse, I find it difficult to empty my bladder. This may be residual from an incident at the hospital where my bladder was paralyzed or it could be its own thing. I do know that there were just some new incontinence supports released that work similar to tampons, but their construction helps to cinch off the urethra a bit leading to better control. You may want to give those a try if you haven't already. And I'm sure I don't need to say this, but I'm going to cover my bases anyway, you may want to bring this to your doctors' attention and if you don't already see a urologist, it may be time to. Best of luck on your journey.
Thank you. I feel that way everyday felt I was the only one in the world who knew this struggle. My disability hasn't went threw I lost my job because of my disability so of course no money and no way to get money for my doctors bills. 5 kids. A wife. A passion for life. But feels like I could do better for them, you know what I could be right now. I had colon cancer stage 3 and after my surgery I had a very bad experience with transportation at the hospital. I even up getting at infection
I was not born with it and only ever noticed anything really until I was about 16 or 17. When I was 10 though it was though, that I had some back problems but nothing showed up. I was not finally diagnosed until I was 42 about 8 years ago.
I feel your pain I hate it when people think they understand what we go through even Dr have literally told me that I needed to get off my ass and walk & throw my ♿️ in the dumpster otw out & this was before I could even use my legs but the quack didn’t even do a exam on me just looking at me because of my age now I have Dr ptsd And have to have my mom in the room to keep for haveing a panic attack Keep fighting sister keep fighting
I had stenosis, sciatica,disc disease and I had 2 back surgeries and I had decompression surgery same day surgery L4,L5,S1 and I had a bone spur I have no pain as of august 12,2012. I had PT,accupuncture, heavy pain pills liked vicodin,neurontin,tylenol. I am off of all pain meds and I had PT only.
Jenny my name is dandy and I also have a disability and I do care about other people have disabilities in my educate themselves and I strongly suggest maybe to get together and get to know each other and encourage each other to be better set self accuracy and teach other people entirely Dan
I have a same thing of my back. Scoli... I don't know how to spell it. I do have that problem but it's not a huge thing and of course such as small memory, talking problem, understand problem. But I look like a normal person but they don't understand that I am disabled. Lot of people tell me that I have a Russian ascent but no I am not a Russian. Good thing is that I can get money every month of disability and help to live a life. Good thing there are some schools where I can learn and for disabled people. My life is a easy a Lil but sometimes it's just hard life. Also never had a gf and no one wants me. I am 18 and it's been 18 years being single. Some years later I might move to another country and hope get a better life
Causing them to remove 6 staples from my incision on my stomach. My jv pumps was going into my gallbladder causing unbearable pain and on top of that I had got bitten by a spider. I couldnt lay on my back causing me to heal in a C like form. Worst time of my life. No bowl movement before I left the hospital or colonoscopy. They told me the pain that I wasn't supposed to be feeling was all in my head. I knew they just didn't want to work work on me anymore because I didn't have insurance.
![COMING OUT AS DISABLED | My Visible and Invisible Disability [CC]](http://i.ytimg.com/vi/RxNWV8Kg_GY/mqdefault.jpg)
Thank you. I was born missing part of my heart, and ableism is just not talked about enough. I really needed to hear this today. It’s so easy to be compared to other people, and have them say ‘this person can do this, why can’t you?’ It gets to me so bad sometimes. And when we’ve done this before we know when something is wrong. There are so many times I’ve gotten far worse because nobody listened when I knew something was wrong. So thank you for giving us a voice.
So sorry I take pain meds everyday for 7 years what people don't realize when you are in extreme pain it only takes the edge off slightly and like you said helps me get out of bed because we have been on so long it doesn't work as good as it use to but it still helps ❤ Sending you hugs from MI
Your story is incredible. My heart goes out to you as a fellow Spoonie. You are not alone. I have been in chronic pain since I was 21...i am now 32. It is INCREDIBLY difficult to not be able to be physically active , especially being young and being a former athlete. I know the mental struggle all too well. Xox
Thank you for sharing this story. I'm so glad that you are here and sharing with us. Much love.
Thank you for sharing your story to us. All my love towards you. Don't give up keep going... look at it, this way you're not an a wheelchair. So "thank God " . I am fighting everyday with fibromalgia . Yes i used to be very active in sport's ice hockey, basketball, baseball you name it. And on top of that I also gone throw back surgery having three herniated discs the doc toke two out and one is not touching my spinal cord so he decided to leave the one in. So hey am looking at it as positive as I can. Not being an a weel chair thank God. Still being as active as by working, driving swimming as much as I can do , hey still enjoying life and I'm not giving up just looking forward in life. Your beautyfull and I see that you're a very strong person smart, and intelligent.
I'm amazed to hear your story, and am moved by what you share. I also danced ballet, and was very active until my condition eroded my ability to walk. I too went through some of the proceedures you mentioned, and suffer chronic pain. I have been considering decompression surgery. Yet the idea that it could potentially leave me in more pain is unbearable. I relate deeply with so many things you have shared. I wish I had the courage to share my experience on social media like you have, and find your sharing to be so very courageous. I subscribed, hoping to hear more about your story. I find wonderful outlets in my artistry and passion for literature. My sweet kitty can sense when pain levels rise, and often comes to snuggle and purr at just the right time. It's amazing, and very soothing. I appreciate your candid sharing in this video. It helps to know we are not alone in this challenging battle.
I'm a disabled actor and singer from the UK, your video is awesome!
I never know the "right things" to say, but I just want to let you know my heart sincerely goes out to you. I can't imagine all you've had to deal with! You are absolutely beautiful, your smile could light up a room, and you are EXTREMELY well spoken (and you obviously like cats and anyone that likes cats is good in my book lol)!
Take care of yourself and hugs from North Carolina =)
You are extremely brave. I have whats called an atypical facial neuralgia. All of my teeth hurt 24/7 and I am on lots of meds. We, the chronic pain sufferers are in a tought spot. But I hope and pray that one day, they'll be able to find a solution for us.
Your story is incredible amazing video
Thank you for sharing your story because I needed you. You have changed my life.
Lost story short. It's been almost 3 years since but my wife. And something told me to look up disability stories and I found yours. Thank you so so much you are brave times ten just for making the video. I know how hard it is to relive it when you tell your story. You make me feel not alone. Crazy cause I don't know you but people sometimes just how it is to go every day 24/7 with a disability. Sorry for commenting you up it just you made a video like know other. The most positive video I've
Bless your heart ❤️ for sharing your story. You have given me a little hope 🙂 I’m in the beginning stage of Apply for disability. It really hurts when people look at you like your and they don’t see the disability on the outside. So they assume I’m just lazy or if I changed my diet I would be fine. I have lost so many relationships with boyfriend family members and friends. Not to mention jobs. I have a sleep disorder. I can go two or three days without any sleep. I have no quality of life at the moment. Praying that will change one day soon.
Sending you love & prayers 😇
Bless you, you are an inspiration, I too live with chronic pain. Keep inspiring us. With love
I hate when MRIs are wrong and they say everything is normal when even during it you know something is wrong
You're a brave woman I'm 59 was active cyclist a year and half ago my Dr noticed my left hand had mild atrophy he thought it was Carpal Tunnel went for a barrage of test's after a nerve test it was determined that I had CMT a disease that basically kills the nerves that control you're muscles which in time the muscle wastes away and atrophy in all it's glory starts in you're feet works up affects you're legs hands I'm left handed and that hand is my worst last Summer was a nightmare because this disease also affects you're balance I had many falls rolled my ankle displaced my Fibia 4MM and pretty much left it because I live alone and couldn't be not able to drive no pain thank's to the disease it's pretty numb my feet and ankles so it never bothered me had to start using a cane this disease rob's you of you're dignity you're brain is unaffected so basically you get to watch yourself waste away the only light recently got fitted for braces and am able to walk without the cane after hearing you're
story I was truly moved you're a strong woman make's me feel small hearing what you've been through my only comfort is that it happened now in my 50's which wasn't the case for you. I wish you all the Best in you're Brave fight God Bless.
Thanks for being so brave and sharing your life with all of us. I'm gathering courage to start my channel. I know exactly how you feel. I also have a several spine conditions.
Dear Izzy, you are a brave lady for sharing your story. The tears are needed sometimes but you also have a beautiful smile. I also have a disability with my spine a problem from birth that really caused problems in my 40’s. as a separate issue I had an L5 S1 spinal fusion artificial disc. And another surgery to free my sciatic nerve. I life with chronic pain caused by the spinal fluid not running correctly for years. My hips and legs I can’t walk far or stand for long. I was a registered nurse and had to retire early and I no longer drive because I don’t feel safe due to the amount of narcotic and other drugs I take. I don’t look sick either,people wander why I don’t work and I had to fight to obtain a disability pension. The pain and conditions rob you of so much and sometimes I just have to go back to bed. I try to be strong and use energy to put on the I’m ok face. I try to find some good in every day and be positive if I’m feeling down I try and pamper myself in some way. I hope explaining my story helps you stay strong. I’m a good listener if you want to message me. ❤️
You are so brave and have gone through so much more than me. Thank God I don't have any pain.
hi there! I just wanted to say thank you for this video. I randomly came across it in my recommendations and I'm so glad I did. I am disabled as well, but in a much different way. Even though I can't relate exactly to what you have been through and continue to go through, I can say that I understand and relate very much to how your disability and what other's say makes you feel. You yourself are so strong and brave. I don't know if you have any social media links where I can connect with you but you can find mine on my channel - I'd love to be in touch. Stay strong and keep doing your thing! You're beautiful through and through. Thanks again for sharing.
- Dini :)
Well done. You are an inspiration.
I just want you to know I think you are awesome!
You are an actual miracle ❤️
Well done to your, mother. My sister partially diagnosed me with Muscular Dystrophy.
God bless you. Great video very inspirational, how are you now? Hope doing better 🙏 x
People don’t understand that with the pain you don’t feel wonky taking the pain meds.
she's beautiful.
I truly hope things get better, pulling for you.
Very toughing video! I also have problems in the sacral/lumbar level. Even if I can walk pretty well, I have severe problems controlling my bladder, it is a really invalidating effect. Even if I don't have any pain, it is an hygienic problem and an humiliating situation at such a young age. I hope you create some videos about bladder control and what are your experiences and suggestion to manage a leaky bladder.
Hey, Sandra! First, I would like to thank you so much for watching my video. I wish I could offer some sort of advice or "life hack," for lack of a better word, when it comes to bladder leakage, but I don't experience that side effect. I have almost the opposite problem where, when my nerve pain gets worse, I find it difficult to empty my bladder. This may be residual from an incident at the hospital where my bladder was paralyzed or it could be its own thing.
I do know that there were just some new incontinence supports released that work similar to tampons, but their construction helps to cinch off the urethra a bit leading to better control. You may want to give those a try if you haven't already. And I'm sure I don't need to say this, but I'm going to cover my bases anyway, you may want to bring this to your doctors' attention and if you don't already see a urologist, it may be time to.
Best of luck on your journey.
Thank you. I feel that way everyday felt I was the only one in the world who knew this struggle. My disability hasn't went threw I lost my job because of my disability so of course no money and no way to get money for my doctors bills. 5 kids. A wife. A passion for life. But feels like I could do better for them, you know what I could be right now. I had colon cancer stage 3 and after my surgery I had a very bad experience with transportation at the hospital. I even up getting at infection
truly touching story! you are so strong !
I was not born with it and only ever noticed anything really until I was about 16 or 17. When I was 10 though it was though, that I had some back problems but nothing showed up. I was not finally diagnosed until I was 42 about 8 years ago.
thank you. ❤️
I feel your pain I hate it when people think they understand what we go through even Dr have literally told me that I needed to get off my ass and walk & throw my ♿️ in the dumpster otw out & this was before I could even use my legs but the quack didn’t even do a exam on me just looking at me because of my age now I have Dr ptsd
And have to have my mom in the room to keep for haveing a panic attack
Keep fighting sister keep fighting
I am sorry about what happened.
💜💚💜💚
💚💜💚💜
💜💚💜💚
💚💜💚💜
I had stenosis, sciatica,disc disease and I had 2 back surgeries and I had decompression surgery same day surgery L4,L5,S1 and I had a bone spur I have no pain as of august 12,2012. I had PT,accupuncture, heavy pain pills liked vicodin,neurontin,tylenol. I am off of all pain meds and I had PT only.
Kathy Wood Could you please share what helped to alleviate your pain? I hope you are still pain free. Thank you.
Thanks for sharing. God bless.
You know my little girl, You're Brave.
Jenny my name is dandy and I also have a disability and I do care about other people have disabilities in my educate themselves and I strongly suggest maybe to get together and get to know each other and encourage each other to be better set self accuracy and teach other people entirely Dan
I have a same thing of my back. Scoli... I don't know how to spell it. I do have that problem but it's not a huge thing and of course such as small memory, talking problem, understand problem. But I look like a normal person but they don't understand that I am disabled. Lot of people tell me that I have a Russian ascent but no I am not a Russian. Good thing is that I can get money every month of disability and help to live a life. Good thing there are some schools where I can learn and for disabled people. My life is a easy a Lil but sometimes it's just hard life. Also never had a gf and no one wants me. I am 18 and it's been 18 years being single. Some years later I might move to another country and hope get a better life
Causing them to remove 6 staples from my incision on my stomach. My jv pumps was going into my gallbladder causing unbearable pain and on top of that I had got bitten by a spider. I couldnt lay on my back causing me to heal in a C like form. Worst time of my life. No bowl movement before I left the hospital or colonoscopy. They told me the pain that I wasn't supposed to be feeling was all in my head. I knew they just didn't want to work work on me anymore because I didn't have insurance.
Watched. You are brave!!!
Very good nurse.
Keep fighting
You poor darling. Xx
Ok this is off topic but who else got distracted by the adorablee 🐈 cat awee
I know how u feel I been down same road
0 is very small.
What can i say , omg ,how awful
Was the hospital sued for such carelessness?