You did a wonderful speech reaching out to your educate about the effects of illness and isolation. You are right people bore of,our pain fast... are you still sick? It can be so cruel not to enjoy life's simple pleasures while the world rushes by. I have had CFS for over 20 yrs and the internet/ social media has saved my life too. I have made wonderful friends that leave my old ones for dead. I am sure you will eventually go onto greater things.
I find it difficult to understand how anyone could give this a thumbs down. As a chronic illness warrior myself who was bedbound much if 6 months, I think you have a wonderful and courageous talk. I am aware of how much energy It probably took for you to stand on that stage and talk for almost 20 minutes. I could tell you were getting tired towards the end. thank you.
I loved your talk! I've been very isolated with my rare illness. it is so very painful. Your voice is wonderful and helps me and SO MANY OTHERS! LOVE the Gallery of Us!!! Awesome! Social media has helped me IMMENSELY!!!! It is critical for my sanity, so I have discovered!!! I feel a happiness at times, because of it, I thought was forever lost in the PAIN of isolation that so brutally compounds the extreme pain of my illness. LOVE that you are so very intelligent, eloquent with your words and productively empathic!!! I struggled terribly as a college English major being very sick all the time too. I hope you continue spreading your comfort and insight with all of us spoonies, Lymies ....and educating the unwittingly cruel world too!!! Thank You!!!
Omgosh someone alone like me 😔 I’m being discarded by my choir because I miss practice. I cry and tell them my story and they don’t care. I was actually told that I’m left out because I’m not as dedicated. My only friends are online. If internet costs go up I’ll be alone in the world except for my caring husband. Thank you. I’ll reach out
Crystal K. I understand exactly how you feel, being diagnosed with fibromyalgia and chronic fatigue after hit and run , hit by a illegal car by illegal immigrants also, I have Chronic kidney disease, severe fatigue, anterior hypopituitism, disorder, thought from head& neck injury accident caused. and adrenal deficiencies, also perineuroraphy desease, diagnosed by emg, but foot surgeon said I have foot and calf deformity inherited desease called Cmt, I don't know because my drs refused to look outside the box , that being the label fibromyalgia, I have been dehydrated off and on for yrs now. I usually deal with it by being bedridden taking electrolytes until I'm better, but sometoimes I end up in hospital, I was on hgh, testosterone, and other hormones, it wasn't a cure but I was able to participate more in life, i felt physically strong. But My insurance no longer accepted my dr. Its been 3 years now. I'm basically house ridden, I tried calling my medical for help. Telling them I need a case worker to help me find the right drs and etc, I explained how ill I was, My answer was we only help those who help theirselves, I felt like I was slapped in my face. I finally was able to make appt, but was so sick with bladder infection, and dehydration. I missed it, plus honestly I panic going alone to drs appt. I want genetic testing so bad, to get a real diagnosis, fibromyalgia does not cause conditions like mine. My heart identifies with how little respect for people with (fibro and chronic fatigue,) thier illness commands, last time I went to primary that I used for 15yrs The dr told me "To go home grieve my old self, then to bury her, and get over it because I would never be her again. I need to accept myself as i am now. She had a point, but she crushed any hope I may of had. She took away my sence of dignity, with her insensitive remark. I never went back, and even though I know I need to see drs I just feel scarred. More by the way I was treated than what desease I may or may not have. I'm disabled have been since 44 yrs I'm 56, I'd never thought I would end up this way? I never thought being disabled would feel so degrading. Even now ssdi wants me to go to there dr and prove my illness, because MY dr didnt return their paperwork on time. I know that their are people crazy enough to think disability is a good option, especially since they had welfare reform. But thats not me it never was, don't treat me like that, please Its hard enough being ill, never mind being judged as lazy, all forms of testosterone levels are of 79 yr old woman My dr said. I just want help: but what I found was a consistant lack of resources, caring, sensitivity, that disabled people deal with every day , most of us are alone. its the real sin. RITA
Sissy Shaw oh my gosh I can identify with this so much. Thank you for sharing. Yea I actually got disability right away because I had anorexia bulimia so severely. I can't keep my food down because my stomach burns from anything I eat. Part of ME I found out. Or it can be. But yeah for some reason Social security is not recognizing ME as a disability. I believe though if a diagnosis is made, a case can be developed and especially if combined with the Fibro and the rest it'll be a good case. I'm extremely grateful for the ssdi but I believe people think that it's not a necessity but it is. We need it. It's not enough, but it's a lifeline when we can't work. Society likes to shame us but they don't know. There's more RUclips videos on disability shaming that get me through. Thank God for RUclips! I'm on Facebook Crystal Ann Kinsley if you want to connect with me :) many blessings through the pain
Great talk, thank you! I am a chronic Lyme warrior, myself. I have had it since I was 5, not diagnosed until I was 35. Just started treatment a bit over a year ago. Just starting to use those hashtags 😊
Hi madeline (hope I got this right) yup ur onto it I have lymes and I want to say ty 4 getting up on that stage for all of us who suffer YOUR AMAZING !! I could see u were really struggling to stand and wow you did such a courageous speech (btw in a good way and flip side not so good way I think mostly it was us lymes lol that would have seen how difficult this was for you!). I with frustration find it so very hard to look at even this iPod & writing is even more of a challenge however I really just wanted to say THANK YOU !! & hope that the other person below my comment will find you and your social media train & I so wish I can join u all one day love light and to better days and moments xo feef
you cant be acknowledged if you arent diagnosed. you dont need expensive treatments if you arent diagnosed. ive had doctors say i LOOKED fine and left it at that. i LOOKED fine, even though i had 2 ruptured discs with enough spinal pressure to make it tough to walk, breathe, and literally not be able to lift a coffee cup with my dominant arm. id say its unbelievable, but........ im to the point where i think they dont want to diagnose people. been fighting for 16 years
I imagine the thumbs down were only careless mistakes !!!! I have tremors at times and have accidentally hit it....but always corrected it. I can imagine that on one of my very bad days I may not have noticed the mistake. I truly doubt that ANYONE knowingly accidrntally did and didn't correct it!!! ABSOLUTE A+ TALK!!!!!⭐💛💜🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹
I have it since my childhood and also got treated for it very early after the tick-bite and I still have it today with 22. This bacteria is just savage...
All of my surgeries I have had due to what my team says is a genetic disorder. Being in the hospital away from my family and friends. I have had to be isolated again away from family and friends due to the pandemic since I am high risk for COVID due to my chronic illnesses.
Awww, such a great talk!
As an invisible illness survivor I understand the loneliness. I am glad you found your tribe.
You did a wonderful speech reaching out to your educate about the effects of illness and isolation. You are right people bore of,our pain fast... are you still sick? It can be so cruel not to enjoy life's simple pleasures while the world rushes by. I have had CFS for over 20 yrs and the internet/ social media has saved my life too. I have made wonderful friends that leave my old ones for dead. I am sure you will eventually go onto greater things.
I have found social media,is the only place to find people with the same issues and experiences.
I have fibromyalgia and I understand her... I can also feel the pain in her voice.
same
Same here. It's always so new to us. The constant adaptation to new challenges is exhausting.
I find it difficult to understand how anyone could give this a thumbs down. As a chronic illness warrior myself who was bedbound much if 6 months, I think you have a wonderful and courageous talk. I am aware of how much energy It probably took for you to stand on that stage and talk for almost 20 minutes. I could tell you were getting tired towards the end.
thank you.
GOD could post the secret mix of herbs to cure ALL disease and some axxhole would STILL hit the thumbs down.
I loved your talk! I've been very isolated with my rare illness. it is so very painful. Your voice is wonderful and helps me and SO MANY OTHERS!
LOVE the
Gallery of Us!!!
Awesome!
Social media has helped me IMMENSELY!!!!
It is critical for my sanity, so I have discovered!!! I feel a happiness at times, because of it, I thought was forever lost in the PAIN of isolation that so brutally compounds the extreme pain of my illness.
LOVE that you are so very intelligent, eloquent with your words and productively empathic!!!
I struggled terribly as a
college English major being very sick all the time too.
I hope you continue spreading your comfort and insight with all of us spoonies, Lymies ....and educating the unwittingly cruel world too!!!
Thank You!!!
Omgosh someone alone like me 😔 I’m being discarded by my choir because I miss practice. I cry and tell them my story and they don’t care. I was actually told that I’m left out because I’m not as dedicated. My only friends are online. If internet costs go up I’ll be alone in the world except for my caring husband. Thank you. I’ll reach out
Crystal K. I understand exactly how you feel, being diagnosed with fibromyalgia and chronic fatigue after hit and run , hit by a illegal car by illegal immigrants also, I have Chronic kidney disease, severe fatigue, anterior hypopituitism, disorder, thought from head& neck injury accident caused.
and adrenal deficiencies, also perineuroraphy desease, diagnosed by emg, but foot surgeon said I have foot and calf deformity inherited desease called Cmt, I don't know because my drs refused to look outside the box , that being the label fibromyalgia, I have been dehydrated off and on for yrs now. I usually deal with it by being bedridden taking electrolytes until I'm better, but sometoimes I end up in hospital,
I was on hgh, testosterone, and other hormones, it wasn't a cure but I was able to participate more in life, i felt physically strong.
But My insurance no longer accepted my dr. Its been 3 years now.
I'm basically house ridden, I tried calling my medical for help.
Telling them I need a case worker to help me find the right drs and etc, I explained how ill I was,
My answer was we only help those who help theirselves,
I felt like I was slapped in my face.
I finally was able to make appt, but was so sick with bladder infection, and dehydration. I missed it, plus honestly I panic going alone to drs appt.
I want genetic testing so bad, to get a real diagnosis, fibromyalgia does not cause conditions like mine.
My heart identifies with how little respect for people with (fibro and chronic fatigue,) thier illness commands, last time I went to primary that I used for 15yrs
The dr told me "To go home grieve my old self, then to bury her, and get over it because I would never be her again.
I need to accept myself as i am now.
She had a point, but she crushed any hope I may of had.
She took away my sence of dignity, with her insensitive remark.
I never went back, and even though I know I need to see drs I just feel scarred. More by the way I was treated than what desease I may or may not have.
I'm disabled have been since 44 yrs I'm 56, I'd never thought I would end up this way?
I never thought being disabled would feel so degrading.
Even now ssdi wants me to go to there dr and prove my illness, because MY dr didnt return their paperwork on time.
I know that their are people crazy enough to think disability is a good option, especially since they had welfare reform.
But thats not me it never was, don't treat me like that, please Its hard enough being ill, never mind being judged as lazy, all forms of testosterone levels are of 79 yr old woman My dr said.
I just want help:
but what I found was a consistant lack of resources, caring, sensitivity, that disabled people deal with every day , most of us are alone.
its the real sin. RITA
Sissy Shaw oh my gosh I can identify with this so much. Thank you for sharing. Yea I actually got disability right away because I had anorexia bulimia so severely. I can't keep my food down because my stomach burns from anything I eat. Part of ME I found out. Or it can be. But yeah for some reason Social security is not recognizing ME as a disability. I believe though if a diagnosis is made, a case can be developed and especially if combined with the Fibro and the rest it'll be a good case. I'm extremely grateful for the ssdi but I believe people think that it's not a necessity but it is. We need it. It's not enough, but it's a lifeline when we can't work. Society likes to shame us but they don't know. There's more RUclips videos on disability shaming that get me through. Thank God for RUclips! I'm on Facebook Crystal Ann Kinsley if you want to connect with me :) many blessings through the pain
Great talk, thank you! I am a chronic Lyme warrior, myself. I have had it since I was 5, not diagnosed until I was 35. Just started treatment a bit over a year ago. Just starting to use those hashtags 😊
Hi madeline (hope I got this right) yup ur onto it I have lymes and I want to say ty 4 getting up on that stage for all of us who suffer YOUR AMAZING !! I could see u were really struggling to stand and wow you did such a courageous speech (btw in a good way and flip side not so good way I think mostly it was us lymes lol that would have seen how difficult this was for you!). I with frustration find it so very hard to look at even this iPod & writing is even more of a challenge however I really just wanted to say THANK YOU !! & hope that the other person below my comment will find you and your social media train & I so wish I can join u all one day love light and to better days and moments xo feef
It's difficult when you go undiagnosed
you cant be acknowledged if you arent diagnosed. you dont need expensive treatments if you arent diagnosed. ive had doctors say i LOOKED fine and left it at that. i LOOKED fine, even though i had 2 ruptured discs with enough spinal pressure to make it tough to walk, breathe, and literally not be able to lift a coffee cup with my dominant arm. id say its unbelievable, but........ im to the point where i think they dont want to diagnose people. been fighting for 16 years
I imagine the thumbs down were only careless mistakes !!!! I have tremors at times and have accidentally hit it....but always corrected it. I can imagine that on one of my very bad days I may not have noticed the mistake.
I truly doubt that ANYONE knowingly accidrntally did and
didn't correct it!!!
ABSOLUTE A+ TALK!!!!!⭐💛💜🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹🌹
This is so validating. I find tremendous support from my online support group!
Thank you.
Powerful
I have it since my childhood and also got treated for it very early after the tick-bite and I still have it today with 22. This bacteria is just savage...
Young people should learn a lot more in schools. Lyme for example is so little known.
My drs can't agree whether or not I have LYME or Psoriatic Arthritis.... Leaves me NO WHERE.
A good rheumatoid ologist is hard to find I've been there, hope they give you proper diagnosis and a right medicine cocktail that helps you out 🙏
All of my surgeries I have had due to what my team says is a genetic disorder. Being in the hospital away from my family and friends. I have had to be isolated again away from family and friends due to the pandemic since I am high risk for COVID due to my chronic illnesses.
Kind of!
True
I'm part of the 24%
i can barely hear you I'm on headphones and its at 100%