Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Thank you so much sharing your story, so similar to my own. Still waiting for an rhuematologist who recognises types of EDS as I display Marfan & classical symptoms too. I hope you're now getting the support and compassion needed by medical staff.
EDS has taken everything from me. I live with constant, 8-9/10 pain with medication. I have dislocation of multiple joints daily, and have to reduce them myself. It has taken my movement, my health, my career, my teeth, my enjoyment of everything. Thanks for sharing your story.
Retraining myself self to move forward to my new norms . I get down on things once in awhile but now I just celebrate every little miracle about myself that I still am able to breathe and smile, and learning to be mindful of my activities has been a game changer . Finding my strengths and management of my weaknesses has given me more hope than before. I also feel like the doctors are finally taking me serious . We all have to keep each other up and try to help share the fact that we are not alone . There are so many wonderful support groups out here on the internet . Such a blessing to learn new hacks and meet with others who have learned to keep living .
I’m so sorry you are going thru this !!!! I was at that point about 2 years ago . I am always here if you need to have someone to chat with or vent to . We can swap our shared victory or the small obstacles and learn to get past or not be plowed down by the more difficult things we have to face . It’s lonely sometimes to not have others who understand completely what you are saying. Love to you and light for hope ! I hope we can chat sometime
Thanks for sharing your story Faith. So sorry to hear you've been through so much. I applaud you for being so proactive in taking care of yourself, mind, body and soul and thank you for raising awareness of EDS. Your attitude in the face of such adversity is truly inspirational. Wishing you everything you wish for yourself and more as you move forward in your life. Sending good vibes from Ireland! X
Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
My Neurologist visually noticed symptoms with EDS and due to all my random bruising ans stretch skin and lose joints, was sent across the country for testing. 3yrs later and I have still not found a dr who says they can genetically test me.... Im still trying to be confirmed and in the mean time I have been in the er and hospital 5 times in 6 mos. I had Superior mesenteric artery syndrome not due to weight loss and slowed gastric emptying.... I still cannot eat right. Oh and I had the same kind of issues with drs and no one believing how much pain I was in. Ort the dietary struggle... it literally hurts to eat sometimes and family used to just say I was having an eating disorder (without confirming it). I love food but cannot eat it sometimes. Hello ensure.... im glad you got answers and confirmed. It's so much harder and more dangerous to not have the genetic confirmation. New drs doubt you, give you meds that literally cause vascular ruptures (all the bruising) don't take ciproflaxcine or anything with flaxcine in the name.... it is geneticly un compatible with EDS! Keep strong. I pray your pain becomes manageable and relief.
Go Blue! I went to UofM for undergrad and still live in the area. If you’re ever looking for a fellow zebra (I have hEDS) to talk to, feel free to reach out. ☺️
Sending you Love Faith❤
Isn’t it amazing how effect gaslighting is before diagnosis!
I’m so glad you went to the hospital and are on a treatment plan. I hope you do well!
Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Thank you so much sharing your story, so similar to my own. Still waiting for an rhuematologist who recognises types of EDS as I display Marfan & classical symptoms too. I hope you're now getting the support and compassion needed by medical staff.
EDS has taken everything from me. I live with constant, 8-9/10 pain with medication. I have dislocation of multiple joints daily, and have to reduce them myself. It has taken my movement, my health, my career, my teeth, my enjoyment of everything.
Thanks for sharing your story.
You're not alone with this.. Try to get as much joy as you can out of every moment you feel okay
@@andethidialbubabibub3261 that’s all we can do !! I have learned to , LET GO OF MY ISSUES OF LOSS OF MY PHYSICAL BODY AND MENTAL HEALTH .
Retraining myself self to move forward to my new norms . I get down on things once in awhile but now I just celebrate every little miracle about myself that I still am able to breathe and smile, and learning to be mindful of my activities has been a game changer . Finding my strengths and management of my weaknesses has given me more hope than before. I also feel like the doctors are finally taking me serious . We all have to keep each other up and try to help share the fact that we are not alone . There are so many wonderful support groups out here on the internet . Such a blessing to learn new hacks and meet with others who have learned to keep living .
I’m so sorry you are going thru this !!!!
I was at that point about 2 years ago . I am always here if you need to have someone to chat with or vent to . We can swap our shared victory or the small obstacles and learn to get past or not be plowed down by the more difficult things we have to face . It’s lonely sometimes to not have others who understand completely what you are saying. Love to you and light for hope ! I hope we can chat sometime
Hang in there !
Thanks for sharing your story Faith. So sorry to hear you've been through so much. I applaud you for being so proactive in taking care of yourself, mind, body and soul and thank you for raising awareness of EDS. Your attitude in the face of such adversity is truly inspirational. Wishing you everything you wish for yourself and more as you move forward in your life. Sending good vibes from Ireland! X
Hello 🥰 just popping on to say hi and let you know that I set up my RUclips channel to raise awareness for EDS and other chronic illnesses that I have ! Just uploaded my first video 🥰 if you felt like checking it out and maybe subscribing that would honestly mean the world 🥰🥰🥰xx
Thanks for your story. Sounds same like my daughter story. Stay strong
My pleasure. I will, and the same for you and your daughter, stay strong!
You're kinda lucky being diagnosed immediately (you say it's late, you waited for a few yrs, that's not long) . Stay strong!
My Neurologist visually noticed symptoms with EDS and due to all my random bruising ans stretch skin and lose joints, was sent across the country for testing. 3yrs later and I have still not found a dr who says they can genetically test me.... Im still trying to be confirmed and in the mean time I have been in the er and hospital 5 times in 6 mos. I had Superior mesenteric artery syndrome not due to weight loss and slowed gastric emptying.... I still cannot eat right. Oh and I had the same kind of issues with drs and no one believing how much pain I was in. Ort the dietary struggle... it literally hurts to eat sometimes and family used to just say I was having an eating disorder (without confirming it). I love food but cannot eat it sometimes. Hello ensure.... im glad you got answers and confirmed. It's so much harder and more dangerous to not have the genetic confirmation. New drs doubt you, give you meds that literally cause vascular ruptures (all the bruising) don't take ciproflaxcine or anything with flaxcine in the name.... it is geneticly un compatible with EDS! Keep strong. I pray your pain becomes manageable and relief.
Great job faith 👏
Thank you, Tara!
💙💙💙
Ginsing latte cannot stress drinking that stuff it is amazing!
I will have to try that out.
Go Blue! I went to UofM for undergrad and still live in the area. If you’re ever looking for a fellow zebra (I have hEDS) to talk to, feel free to reach out. ☺️
I’m in Adrian.
@@ldsjen0227 I’m in Waterford, but totally fine with a drive!
@@thegastroparesisgoofball1030 That's really not far at all.
Oh wow, Go Blue! Thank you, I will reach out. I have been especially looking for more fellow zebras in MI.
I live in Adrian. May I ask who you see?
I house bound due to pain