Thank you for sharing, Katie! I just found your channel and I can relate so much. I have hEDS which in my case is accelerating fast. I have no idea what the future holds, and it's hard to lose control over your body and have no cure or reliable treatment. I didn't have that many mental health issues until my physical health rapidly declined. I used to be a strong woman, but now all i feel is weak and powerless. I hope they find a cure soon for all of us. xoxo
I can relate to what you are saying. I have eds and each day there's some pain, new symptom. I just want to travel and live life in an adventurous way.
I've gone to the ER so many times since my stroke and open heart surgery where nothing was wrong and I've even gone in thinking I had a bowel perforation!
Here's a link to MUSC. They are conducting clinical trials for different types of EDS. They feel they are getting close to a cure....keep having faith! It might come in time for us.
Thanks for your thoughts . I’m hiking this Montain like you because I’ve diagnosed with vEDS 18 months ago . Still assuming all this , trying to enjoy what I like, although one of them is cycling and it is not entirely compatible. Keep going on ! Greetings from Spain .
mountain :) I don’t have VEDS myself (my provisional diagnosis is hEDS), but I subscribed a while ago to learn more about it so that I could help people on reddit who had questions about vascular type. I listen to the podcast too and have learned so much from you and your friends (both facts about VEDS and just great life advice in general) ❤️ I think it’s so important to talk about how physical conditions can interact with our mental health.
How does the emergency room treat you when you've suspected there is a problem that needs addressing? Is medical gaslighting a thing you experience still, or do they have file with your information available and an alert set when you show up?
Hi there! It continued to be a problem when I lived in Florida to an extent. I’ve since moved back to Washington to be closer to an expert center and have had much better experiences. I do have an alert in my file for when I show up in the emergency room. My doctor used the instructions available by The VEDS Movement. In addition, I have my vascular surgeons phone number and she has been an incredible help in emergencies by calling the hospital ahead of my arrival. Emergency care is a challenge for people with VEDS still for sure.
I recently got diagnosed with it, it was passed down from my moms side she passed away after I was born because an artery blew in her heart I always blamed myself for it but then I realized she had VEDS too I was heartbroken when I heard about it, it was like everything I had ever dreamed of doing was out the window, trampoline parks, roller coasters, basically everything adventurous my parents just don’t realize how much it hurts being diagnosed with VEDS was the best and worst thing that ever happened to me, I got closure that I wasn’t the reason my mom died but I got everything I ever dreamed of taken away I understand everything that you are going through honestly I hate it because if I say I got hit in gym and it hurts my stepmom goes well got to go to the hospital I hate it so much but I guess this is the lifestyle I have to get used to
I’m so glad you got closure and could stop blaming yourself for her death. It’s such a hard diagnosis to deal with for sure. Sending you all the love ❤️
Hey Domen! Thanks for watching the whole video :) I did a video a few years ago about my experience with VEDS and tattoos/piercings. Hope this helps! It might be dated. ua-cam.com/video/DV0tzI05_qE/v-deo.html
I completely understand you, I wished, since I wanted to have a baby and suffered an abortion, and after with my babies and kids, that we were transparent and could see our inside perfectly, with no need of radiation, or any other test, not even needing to go to a a doctor. Your idea of mirror is very good, maybe one day humans will have it ;P. Lots of love, you are very strong and I always learn so mucho from you. You are doing great in your situation and hope you live a long and happy life.
Have you ever tried hypericum or St Johns wort it’s a natural antidepressant? I have had the B12 deficiency too, it’s something that’s essential to coating the neural sheath so our pain will be worse too
Best wishes for 2024, Katie. ✌️🤗❤️
Thank you for sharing, Katie! I just found your channel and I can relate so much. I have hEDS which in my case is accelerating fast. I have no idea what the future holds, and it's hard to lose control over your body and have no cure or reliable treatment. I didn't have that many mental health issues until my physical health rapidly declined. I used to be a strong woman, but now all i feel is weak and powerless. I hope they find a cure soon for all of us. xoxo
Sending you so much love ❤️ I hope they do too
Thanks for sharing :)
Keep it up, you are dealing with it in a way so many people wouldn't be able to.
Thank you ❤️
I can relate to what you are saying. I have eds and each day there's some pain, new symptom. I just want to travel and live life in an adventurous way.
I've gone to the ER so many times since my stroke and open heart surgery where nothing was wrong and I've even gone in thinking I had a bowel perforation!
VEDS is a really hard and scary thing to deal with ❤️
Here's a link to MUSC. They are conducting clinical trials for different types of EDS. They feel they are getting close to a cure....keep having faith! It might come in time for us.
Thanks for your thoughts . I’m hiking this Montain like you because I’ve diagnosed with vEDS 18 months ago . Still assuming all this , trying to enjoy what I like, although one of them is cycling and it is not entirely compatible. Keep going on ! Greetings from Spain .
So sorry you were diagnosed with this too! Keep going too friend! Cool to hear from you in Spain :)
mountain :) I don’t have VEDS myself (my provisional diagnosis is hEDS), but I subscribed a while ago to learn more about it so that I could help people on reddit who had questions about vascular type. I listen to the podcast too and have learned so much from you and your friends (both facts about VEDS and just great life advice in general) ❤️ I think it’s so important to talk about how physical conditions can interact with our mental health.
Thank you, Shae! ❤️
How does the emergency room treat you when you've suspected there is a problem that needs addressing? Is medical gaslighting a thing you experience still, or do they have file with your information available and an alert set when you show up?
Hi there! It continued to be a problem when I lived in Florida to an extent. I’ve since moved back to Washington to be closer to an expert center and have had much better experiences.
I do have an alert in my file for when I show up in the emergency room. My doctor used the instructions available by The VEDS Movement. In addition, I have my vascular surgeons phone number and she has been an incredible help in emergencies by calling the hospital ahead of my arrival.
Emergency care is a challenge for people with VEDS still for sure.
Katie, thank you for what you have shared with us.
Gosh you hit it all on the head. I’m on the same level. I relate 110% !
I recently got diagnosed with it, it was passed down from my moms side she passed away after I was born because an artery blew in her heart I always blamed myself for it but then I realized she had VEDS too I was heartbroken when I heard about it, it was like everything I had ever dreamed of doing was out the window, trampoline parks, roller coasters, basically everything adventurous my parents just don’t realize how much it hurts being diagnosed with VEDS was the best and worst thing that ever happened to me, I got closure that I wasn’t the reason my mom died but I got everything I ever dreamed of taken away I understand everything that you are going through honestly I hate it because if I say I got hit in gym and it hurts my stepmom goes well got to go to the hospital I hate it so much but I guess this is the lifestyle I have to get used to
I’m so glad you got closure and could stop blaming yourself for her death. It’s such a hard diagnosis to deal with for sure. Sending you all the love ❤️
Mortality... Man, are you reading my mind?
My thoughts exactly 💯.. Thanks for sharing.
Mountain. Next video: are tattoos and veds compatible;).
Hey Domen! Thanks for watching the whole video :) I did a video a few years ago about my experience with VEDS and tattoos/piercings. Hope this helps! It might be dated. ua-cam.com/video/DV0tzI05_qE/v-deo.html
Hang in there Katie. You are doing incredible work of bringing awareness of the crazy disease/condition 🤪 👏
Thank you for this! Perfectly explained the mental aspect of life with veds.
I feel just like you, I have TIA'S occasionally and it scares that shit oughta me!
Mountain
Thanks for sharing! Tons of good advice!
I completely understand you, I wished, since I wanted to have a baby and suffered an abortion, and after with my babies and kids, that we were transparent and could see our inside perfectly, with no need of radiation, or any other test, not even needing to go to a a doctor. Your idea of mirror is very good, maybe one day humans will have it ;P. Lots of love, you are very strong and I always learn so mucho from you. You are doing great in your situation and hope you live a long and happy life.
Have you ever tried hypericum or St Johns wort it’s a natural antidepressant? I have had the B12 deficiency too, it’s something that’s essential to coating the neural sheath so our pain will be worse too
I have not tried those. Have you?