Autumn, I don't know when I can say here, except one small thing. You're angry because for all of your life, you've been able to understand and be honest about what you can't change, but now having firm proof that the biggest struggle in your life was preventable and was disregarded, that's a pain very few people now and I know the fight is long and difficult. I myself struggle with an immune deficiency that can put me out at any time for any reason. I keep being told that there is a cure and that we are a year away two years away but I never get that phone call and yeah I have to be careful around every single person that I meet, during the pandemic, I worked in urgent care and I was constantly afraid of passing away from Covid because my immune system is just that weak. I live in the fear differently than you do but I understand the pain of not being heard. Thank you for sharing more of your story, and reminding me that bravery can only continue even in the face of anger and fear.
Thank you for your openness and I am sorry you know this pain so well. I know we have my doctors constantly saying maybe in the next few years we will have something that'll prevent things from getting worse but, like you said, that call never comes. It's very different conditions and circumstances but a similar shit. And you're right, not a lot of people know this pain. I'm glad I could help add to the visibility in someway. Thank you for the love I appreciate it
@@autumnskylardoeseverything not a problem. As long as you have the strength and enjoy it, keep being that creative force. It opens a lot of people’s eyes.
I have a history of back issues that have only recently caused me neurological damage. A few years ago I herniated a disc, combined with a diagnosis of stenosis this put a lot of pressure against my L5 nerve root and has caused mild, but seemingly permanent nerve damage. I was in the ER with the most excruciating pain I’ve ever felt going down my right leg and into my foot and my toes. My doctor gave me opioid pain meds and gabapentin at first, but they gave me such a mental fog I had to stop taking them. After a year of daily pain, numbness and tingling, bolts of lightning in my toes, burning sensations and mild loss of function in my toes, my doctor tried to refer me to a podiatrist. Yeah a foot doctor. Basically his way of saying “whatever, I give up. Let’s get this guy out of here.” That was almost 4 years ago and I’m still in pain every day. Not as intense as it used to be, but it’s still there and it keeps me from doing the things I used to take for granted. I have little faith in doctors and I hate hospitals and the American healthcare system. It’s a scam. Wish I had encouraging words.
Sadly is occur once again. Will be updating soon but major issue happen again and doctors blaming me. Convinced most doctors don't really care for patient more about check. So sorry you know this pain
@@autumnskylardoeseverything I do understand. And I agree. I think in the 90s doctor's were more likely to really care about their patients. Today...it's simply ego, status, and paycheck. I have a chronic illness that my doctor all but told me he thought was in my head and that he wasn't going to help me.
Please stay positive and never give up my dear. Hope you have a wonderful day. Don't the rage take you to a dark place, you are a Ray sunshine and joy xxx
You know what, considering everything you are a lot more grounded in reality than a lot of people. I know what you mean exactly with the constant fight. I was lucky my chiari surgery went well but it did take a few years to recover from that and its not perfect but I cope better now with it, the EDS though bleh. I was the same. I trusted my GP's but if Id left it down to them Id never even have a diagnosis, back then I still had some energy to fight but 10 years later not so much. I avoid visiting the doctor these days. I just feel like right now I don't have the energy or inclination even though there are a few things to get sorted. I get what you mean too about the rage. I wish I could physically go insane and get it all out my sytem but I can barely punch my pillows into shape so..... Its hard though. I feel as if because my time, energy everything is so much more limited I feel like I am frantically trying to do everything. Keep your chin up, you have got through so much already!
Omg EXACTLY! If we'd listened to the people who told us they knew best us in the rare disorder community would be even worse off. It is a lesson in listening to yourself and your body, but it's so challenging when doctors told you for years that they know better. It's relearning to trust your body. I hope in time more doctors have the knowledge to help others get these necessary diagnosis sooner to prevent permanent damage. And omg yesss feeling that the desire to punch everything but 0 strength xD
![How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]](http://i.ytimg.com/vi/qxGQ9UMHKBk/mqdefault.jpg)
![How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]](/img/tr.png)
Autumn, I don't know when I can say here, except one small thing. You're angry because for all of your life, you've been able to understand and be honest about what you can't change, but now having firm proof that the biggest struggle in your life was preventable and was disregarded, that's a pain very few people now and I know the fight is long and difficult. I myself struggle with an immune deficiency that can put me out at any time for any reason. I keep being told that there is a cure and that we are a year away two years away but I never get that phone call and yeah I have to be careful around every single person that I meet, during the pandemic, I worked in urgent care and I was constantly afraid of passing away from Covid because my immune system is just that weak. I live in the fear differently than you do but I understand the pain of not being heard. Thank you for sharing more of your story, and reminding me that bravery can only continue even in the face of anger and fear.
Thank you for your openness and I am sorry you know this pain so well. I know we have my doctors constantly saying maybe in the next few years we will have something that'll prevent things from getting worse but, like you said, that call never comes. It's very different conditions and circumstances but a similar shit. And you're right, not a lot of people know this pain. I'm glad I could help add to the visibility in someway. Thank you for the love I appreciate it
@@autumnskylardoeseverything not a problem. As long as you have the strength and enjoy it, keep being that creative force. It opens a lot of people’s eyes.
I have a history of back issues that have only recently caused me neurological damage. A few years ago I herniated a disc, combined with a diagnosis of stenosis this put a lot of pressure against my L5 nerve root and has caused mild, but seemingly permanent nerve damage. I was in the ER with the most excruciating pain I’ve ever felt going down my right leg and into my foot and my toes.
My doctor gave me opioid pain meds and gabapentin at first, but they gave me such a mental fog I had to stop taking them. After a year of daily pain, numbness and tingling, bolts of lightning in my toes, burning sensations and mild loss of function in my toes, my doctor tried to refer me to a podiatrist. Yeah a foot doctor. Basically his way of saying “whatever, I give up. Let’s get this guy out of here.”
That was almost 4 years ago and I’m still in pain every day. Not as intense as it used to be, but it’s still there and it keeps me from doing the things I used to take for granted. I have little faith in doctors and I hate hospitals and the American healthcare system. It’s a scam. Wish I had encouraging words.
Preach it sister... this has been my issue with my doctor as well.
Sadly is occur once again. Will be updating soon but major issue happen again and doctors blaming me. Convinced most doctors don't really care for patient more about check. So sorry you know this pain
@@autumnskylardoeseverything I do understand. And I agree. I think in the 90s doctor's were more likely to really care about their patients. Today...it's simply ego, status, and paycheck. I have a chronic illness that my doctor all but told me he thought was in my head and that he wasn't going to help me.
Please stay positive and never give up my dear. Hope you have a wonderful day. Don't the rage take you to a dark place, you are a Ray sunshine and joy xxx
I'm doing my best to look past that anger and focus on the little joys of each day.
God bless you sister ❤
You know what, considering everything you are a lot more grounded in reality than a lot of people. I know what you mean exactly with the constant fight. I was lucky my chiari surgery went well but it did take a few years to recover from that and its not perfect but I cope better now with it, the EDS though bleh.
I was the same. I trusted my GP's but if Id left it down to them Id never even have a diagnosis, back then I still had some energy to fight but 10 years later not so much. I avoid visiting the doctor these days. I just feel like right now I don't have the energy or inclination even though there are a few things to get sorted.
I get what you mean too about the rage. I wish I could physically go insane and get it all out my sytem but I can barely punch my pillows into shape so..... Its hard though. I feel as if because my time, energy everything is so much more limited I feel like I am frantically trying to do everything. Keep your chin up, you have got through so much already!
Omg EXACTLY! If we'd listened to the people who told us they knew best us in the rare disorder community would be even worse off. It is a lesson in listening to yourself and your body, but it's so challenging when doctors told you for years that they know better. It's relearning to trust your body. I hope in time more doctors have the knowledge to help others get these necessary diagnosis sooner to prevent permanent damage.
And omg yesss feeling that the desire to punch everything but 0 strength xD
Prayers.
Thank you 💓
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