Migosh, sama, this was 2 and a half years ago, but you look so different! ^_^ Trying to keep up my spoons, to stay positive and not give up. Things are pretty hard right now but you're an inspiritation. As you might say "I will not let this thing beat me" xXx
I not sure I agree so much with this video. It seems a little extreme, but I have rejected everything any doctor ever told me about my body and I am one of the most physically active people I know. At first when I found out, I felt the same way; the doctors told me my body should hurt so my body hurt, when they said I could die I thought I was dying. When I woke up and told myself I was done with that and meditated on every positive thought I could have about my body, it responded.
I have one of the most extreme cases of ehlers danlos I have ever seen, and it doesnt inhibit me from doing anything anymore. I kickbox, rock climb, mountain bike, dance and would do none of these things if following doctors orders. Ironical, if I go in for a check up and dont mention my ehlers danlos I am told to be in immaculate shape, but if I tell them all the sudden I am a train wreck waiting to happen.
Your mind controls your body, not a doctor, but if they tell you something long enough, you might just start to believe it. Also, I would suggest looking into vegan diets. When I went vegan what little bit of pain I had left. On a vegan diet you intake a lot of calcium and potassium, which is great for your muscles and bones. Furthermore, you take out many stagnant substances. It would make a huge difference in the way you feel. I wish you the best of luck!
I must be crazy LOL I have EDS Classical Type 1 w/vascular issues as do all 5 of my children. I know my body well know my limitations but ignore them all the time. I never stop to think should I go somewhere or do something due to my EDS. My husband does :)but I ignore it! I may let the laundry I wash sit in the basket for days because I know if I fold it I will pay the price for a few days in my shoulders, but I draw the line at stopping me from going places. I rather just pay the price in pain
Sama this is my favorite EDS video. So many of us give up and get discouraged. I always think of this video when i feel like giving up or im discouraged and it really helps. So thanks for making this inspiring video.
I've watched all your EDS videos with enjoyment. Lovely you are sharing how this debilitating disease affects us all. I've had a diagnosis of EDS 3 years ago and have had 'your imagining it', 'stop faking' it etc., all the usual rebukes that we get. If we all shouted and shared how hard it is and made the medical community even try to understand then we've gone a long way. Keep it up. You're not alone.
Thank you so much for your positive comment! It's definitely a doozy of a disorder. But if I've made it this far, I'll probably make it the rest of the way through the life cycle, and probably on a good note. :)
I think it's important to me to remember that the original dx comes from the medical community, two scientists who cared enough to research why these things were happening. I do feel I owe them my progress and my gratitude. :) Be well!
thanks for the sweet message! i think that's something everyone could benefit from. one problem i have is pushing myself even though i'm hurting. it's good to remember that resting is ok :) keep the videos coming!!!
Hi! Thanks for your comment! Yes, pushing the limit is such a crapshoot, I agree. I am *constantly* asking myself, "am I going to regret this tomorrow?" I figure that, if I have to ask, I should ease up a little. Thanks for your encouragement! It means a lot to me.
my doctor said I probably have eds and marfans, I have had problems with my pelvis and hips popping out of place for year but never knew why. I'm still waiting for a definite, How long did it take you to find out ?
I'm still waiting for a definite. My doctors 1st kept saying it was wear and tear arthritis. Starting at 16years old. WEAR and TEAR!but now Im older and their taking me more serious this year. But still no definite anwers
well I have the eds type III, I saw Dr Pyeritz of the genetics department of University of Penn. Now its just hard finding a good physical therapist that wont make it worse.
Yep, and if they don't know EDS, and you're not sure how to explain it to them, if I were you I'd move on. Until you know enough to advocate for yourself AND you feel strong enough, find a provider that will teach you and help you grow. I got extremely lucky, it all fell into place at the same time. I wish you the best, and challenge you to be fiercely selective on your journey. Stay in touch, ok? :)
Well, sometimes you don't need a dx to treat the symptoms. Though arthritis and EDS treatments are polar opposites, a good PT/OT will know the mid-range to help you gain control until you have more definitive answers. Thank you so much for sharing your story. Good luck!
Well the Land therapy was the worse for me. I tried to give my pt information on eds but she still had me lifting weights and doing squats. My pelvis is really bad and it pops out everyday and it will stay out for a week or more even when I get adjusted. My pt pushed me to do my therapy anyway after that I was in the hospital for three days. Water therapy didn't work either the rotations made it worse too. I already use a wheelchair when my pelvis is out . my body have spasms causing numbness.
Migosh, sama, this was 2 and a half years ago, but you look so different! ^_^ Trying to keep up my spoons, to stay positive and not give up. Things are pretty hard right now but you're an inspiritation. As you might say "I will not let this thing beat me" xXx
mercuryneedle 4 months ago
apply the take your time now!!!! :)
vivisonga1111 1 year ago
@vivisonga1111 I can't, I'm busy! ;)
ufo8mykat 1 year ago
I not sure I agree so much with this video. It seems a little extreme, but I have rejected everything any doctor ever told me about my body and I am one of the most physically active people I know. At first when I found out, I felt the same way; the doctors told me my body should hurt so my body hurt, when they said I could die I thought I was dying. When I woke up and told myself I was done with that and meditated on every positive thought I could have about my body, it responded.
AnatomyofaDiary 2 years ago
I have one of the most extreme cases of ehlers danlos I have ever seen, and it doesnt inhibit me from doing anything anymore. I kickbox, rock climb, mountain bike, dance and would do none of these things if following doctors orders. Ironical, if I go in for a check up and dont mention my ehlers danlos I am told to be in immaculate shape, but if I tell them all the sudden I am a train wreck waiting to happen.
AnatomyofaDiary 2 years ago
Your mind controls your body, not a doctor, but if they tell you something long enough, you might just start to believe it. Also, I would suggest looking into vegan diets. When I went vegan what little bit of pain I had left. On a vegan diet you intake a lot of calcium and potassium, which is great for your muscles and bones. Furthermore, you take out many stagnant substances. It would make a huge difference in the way you feel. I wish you the best of luck!
Aaron Hicks
AnatomyofaDiary 2 years ago
Great video! Thanks for the uplifting message. I love your attitude!
angelEDSer 2 years ago
I must be crazy LOL I have EDS Classical Type 1 w/vascular issues as do all 5 of my children. I know my body well know my limitations but ignore them all the time. I never stop to think should I go somewhere or do something due to my EDS. My husband does :)but I ignore it! I may let the laundry I wash sit in the basket for days because I know if I fold it I will pay the price for a few days in my shoulders, but I draw the line at stopping me from going places. I rather just pay the price in pain
rprimeau95 2 years ago
Sama this is my favorite EDS video. So many of us give up and get discouraged. I always think of this video when i feel like giving up or im discouraged and it really helps. So thanks for making this inspiring video.
BuddyBoy091994 2 years ago
That means so much to me, thank you!
ufo8mykat 2 years ago
Your welcome :)
BuddyBoy091994 2 years ago
I've watched all your EDS videos with enjoyment. Lovely you are sharing how this debilitating disease affects us all. I've had a diagnosis of EDS 3 years ago and have had 'your imagining it', 'stop faking' it etc., all the usual rebukes that we get. If we all shouted and shared how hard it is and made the medical community even try to understand then we've gone a long way. Keep it up. You're not alone.
Shandy1bob2 2 years ago
Thank you so much for your positive comment! It's definitely a doozy of a disorder. But if I've made it this far, I'll probably make it the rest of the way through the life cycle, and probably on a good note. :)
I think it's important to me to remember that the original dx comes from the medical community, two scientists who cared enough to research why these things were happening. I do feel I owe them my progress and my gratitude. :) Be well!
ufo8mykat 2 years ago
thanks for the sweet message! i think that's something everyone could benefit from. one problem i have is pushing myself even though i'm hurting. it's good to remember that resting is ok :) keep the videos coming!!!
nopedamnit 3 years ago 2
Hi! Thanks for your comment! Yes, pushing the limit is such a crapshoot, I agree. I am *constantly* asking myself, "am I going to regret this tomorrow?" I figure that, if I have to ask, I should ease up a little. Thanks for your encouragement! It means a lot to me.
ufo8mykat 3 years ago
thanks for that I need to learn to take my time and not let this get the best of me.
oliphant76 3 years ago 2
Thank you so much for your message! Definitely don't give up, ever. You never know how incredible you will become if you give up, right?
ufo8mykat 3 years ago
my doctor said I probably have eds and marfans, I have had problems with my pelvis and hips popping out of place for year but never knew why. I'm still waiting for a definite, How long did it take you to find out ?
oliphant76 3 years ago
I'm still waiting for a definite. My doctors 1st kept saying it was wear and tear arthritis. Starting at 16years old. WEAR and TEAR!but now Im older and their taking me more serious this year. But still no definite anwers
knowledgeaboveall 2 years ago
well I have the eds type III, I saw Dr Pyeritz of the genetics department of University of Penn. Now its just hard finding a good physical therapist that wont make it worse.
oliphant76 2 years ago
Yep, and if they don't know EDS, and you're not sure how to explain it to them, if I were you I'd move on. Until you know enough to advocate for yourself AND you feel strong enough, find a provider that will teach you and help you grow. I got extremely lucky, it all fell into place at the same time. I wish you the best, and challenge you to be fiercely selective on your journey. Stay in touch, ok? :)
ufo8mykat 2 years ago
Well, sometimes you don't need a dx to treat the symptoms. Though arthritis and EDS treatments are polar opposites, a good PT/OT will know the mid-range to help you gain control until you have more definitive answers. Thank you so much for sharing your story. Good luck!
ufo8mykat 2 years ago
Well the Land therapy was the worse for me. I tried to give my pt information on eds but she still had me lifting weights and doing squats. My pelvis is really bad and it pops out everyday and it will stay out for a week or more even when I get adjusted. My pt pushed me to do my therapy anyway after that I was in the hospital for three days. Water therapy didn't work either the rotations made it worse too. I already use a wheelchair when my pelvis is out . my body have spasms causing numbness.
oliphant76 2 years ago
Oh, about 20 years... give or take. ;)
ufo8mykat 2 years ago
I like your EDS videos. May I link this from my blog?
noedir 3 years ago
Definitely! Thanks for your comment!
ufo8mykat 3 years ago