I’m so glad to hear that you are starting to feel better and that you have a doctor that listens! I agree with Mackenzie that being in the spoonie community is amazing! I’m still trying to figure out all my health issues that have been happening for years. I haven’t been that lucky to find good doctors most of the time.
I love Mychal the librarian and wish him the best of luck with his next venture and that he can focus on his health.
Dealing with doctors is starting to be a traumatic experience for me, I can’t imagine dealing with the back and forth for years 🥹 I hope you find your answers soon!
I'm glad you're slowly getting better. When you're body betrays you it is so scary. I became disabled at 22 years old, fresh out of college and ready to take on the world! And then BAM! I was hit by the chronic pain/chronic illness bus. Doctors had no idea why and one even told me I may never know. But I refused that answer, I wasn't going to stop looking for answers. FIVE YEARS later I FINALLY got my answer. It didn't fix my problem but it validated my experiences. I was throwing up daily from the pain and one doctor tried to treat me for bulimia! But I knew this wasn't an ED and I kept searching for my answers. Turns out I have hypermobile ehlers danlos syndrome or hEDS. I'm glad you're feeling better and I hope you don't have to deal with your condition for the rest of your life. But my biggest advice is don't stop looking for answers. If you're still having problems keep looking until you have that diagnosis. And yes, always remember you're not alone. The Spoonie community is a wonderful one. Even if you get back to 100% you'll have a unique look into our life experiences. How crappy doctors can be. How ablest our society is. And how it effects us. I'm glad you're feeling better, and can write again! Having one's interests stolen from them is one of the worst parts of being disabled. What I wouldn't give to play basket all again. Stay strong, you're amazing, and thank you for sharing Mychal's story. I'm going to go check out his Twitter!
Omg it’s so wild how one day you can be fine and the next day your world is flipped upside down! I’m so happy you kept pushing and didn’t get discouraged by the misdiagnoses. I wish you could play basketball again 🥺 and it sucks to never know what caused it all. Sending you all the positive energy in the world!
Hello, I'm new to substance but just wanted to let you know that I love your page and the courage it took for you to be open and vulnerable with us! praying you get back to 100% or as close as you can and at good pace! I also wanted to say when the times are hard or rough going that I would love to hear that part of your healing journey too if you are able and willing to share it. community is everything these days 💜
I’m so glad to hear that you are starting to feel better and that you have a doctor that listens! I agree with Mackenzie that being in the spoonie community is amazing! I’m still trying to figure out all my health issues that have been happening for years. I haven’t been that lucky to find good doctors most of the time.
I love Mychal the librarian and wish him the best of luck with his next venture and that he can focus on his health.
Dealing with doctors is starting to be a traumatic experience for me, I can’t imagine dealing with the back and forth for years 🥹 I hope you find your answers soon!
I follow Mychal too. He’s amazing. Depression is hard. 💕
I'm glad you're slowly getting better. When you're body betrays you it is so scary. I became disabled at 22 years old, fresh out of college and ready to take on the world! And then BAM! I was hit by the chronic pain/chronic illness bus. Doctors had no idea why and one even told me I may never know. But I refused that answer, I wasn't going to stop looking for answers. FIVE YEARS later I FINALLY got my answer. It didn't fix my problem but it validated my experiences. I was throwing up daily from the pain and one doctor tried to treat me for bulimia! But I knew this wasn't an ED and I kept searching for my answers. Turns out I have hypermobile ehlers danlos syndrome or hEDS. I'm glad you're feeling better and I hope you don't have to deal with your condition for the rest of your life. But my biggest advice is don't stop looking for answers. If you're still having problems keep looking until you have that diagnosis. And yes, always remember you're not alone. The Spoonie community is a wonderful one. Even if you get back to 100% you'll have a unique look into our life experiences. How crappy doctors can be. How ablest our society is. And how it effects us. I'm glad you're feeling better, and can write again! Having one's interests stolen from them is one of the worst parts of being disabled. What I wouldn't give to play basket all again. Stay strong, you're amazing, and thank you for sharing Mychal's story. I'm going to go check out his Twitter!
Omg it’s so wild how one day you can be fine and the next day your world is flipped upside down! I’m so happy you kept pushing and didn’t get discouraged by the misdiagnoses. I wish you could play basketball again 🥺 and it sucks to never know what caused it all. Sending you all the positive energy in the world!
Hello, I'm new to substance but just wanted to let you know that I love your page and the courage it took for you to be open and vulnerable with us! praying you get back to 100% or as close as you can and at good pace! I also wanted to say when the times are hard or rough going that I would love to hear that part of your healing journey too if you are able and willing to share it. community is everything these days 💜