Friday, 1 April 2011

Tell me your story

 I am looking for people who want to share their stories of living with EDS and/ or Gastroparesis. Why not be brave and email me with your own mini blog. Or you could leave a note about yourself in the comments box. It would be great to hear from anyone out there. I also welcome messages of advice and tips for staying well. Really...what ever you want to say, you now have a place to say it. I will post all suitable entries in the "Your Stories" section, so together we can have our say!


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  1. Hey, I have a blog where I am discussing living with EDS- feel free to link to it, check it out or comment.

  2. I'm currently living with EDS. Undiagnosed all of my life, but struggling until I was eventually diagnosed as type 3 in December. Please help to publicise my run (silly silly me!!) to help raise funds for the support charity. It's a great cause and brilliant site for stories, information and help. I couldn't walk until I was 4 - doctors said I was slow.
    I couldn't do PE at school - doctors said I was lazy. I couldn't climb stairs at 17 - doctors said I was fat and lazy...
    When taking 8-12 tramadol a day and using crutches (prescribed, although Drs were 'sure' that there was nothing wrong with me) I asked to see an Ehlers Danlos specialist after meeting a very cool lady with my symptoms and a diagnosis.
    Diagnosed in December, living a relatively normal life now.
    Check out and

    Dawnie. X

  3. Hey, found your blog off the EDS forum! I have EDS type III and this is my blog:

    Thanks :D
    Steph x

  4. You can find my blog at
    Feel free to link :)

    I hope that the diagnosis gave you some much needed answers and that you can give it a place in your life soon. My thoughts are with you!

  5. My story is on my blog which you can find here

    I am 37 and was diagnosed last month. I am in pain every single day.

  6. Hey hun, read your blog today, sounds horrific babe x Glad to see that you find some comfort in sharing with others like myself...keep up the good work xxx

  7. hello, found you through a twitter search for people tweeting about EDS. I have a blog which covers many aspects of my life but there is some health-related stuff there. If you're interested we could talk in more detail maybe, good luck!

  8. I've had health problems and pain all my life, which doctors have often dismissed and made me feel like a hypochondriac. I was diagnosed with fibromyalgia in my late twenties, and not until last year, at age 38, was I finally diagnosed with Ehlers Danlos Syndrome. I look forward to following your blog... feel free to check out mine as well!

  9. Hey!
    I changed the URL of my blog - it used to be but I've changed it to - the name had more meaning to me and yeah, I altered it!

    Thanks xxx

  10. Just diagnosed with gastroparesis on 12.22.11. Type 2 diabetic. The pain, nausea, belching, etc. etc are awful and NO ONE understands! Not even the docs. Been off work for three months and STD runs out soon. Not sure where to turn next. When I was told I had it and needed reglan (sp?) it was like being told to take an aspirin for a headache. This sucks!

  11. I was diagnosed with GP about 4 years ago. Shortly after trying all the different meds with no help just bad side effects, especially the reglan (!), I was sent to a surgeon for a pacer. Now he keeps telling me that it's only meant to stop the vomiting, which I have never gotten, so why did he put it in then? I go for adjustments and have it checked every few months and always says well it's not meant to control the nausea just the vomiting. Okay, so I'm stuck with this machine that won't allow me to get MRI's if needed because you guys decided to experiment? Is that what it is?
    Been in and out of hospital, as we all have, had a feeding tube for 5 months and after being able to maintain and actually put on a few pounds that was removed. Now I'm back to reaching the point where they will put the jtube back.
    I also have chronic pain in the left side that no test has been able to locate a cause for. Pain Doc wants me to try an implant to try and control the pain to get me off the meds so maybe my tummy will work better. But, of course, insurance denied the catscans of the spine as medically unnecessary. Once I get feeling better, I've got to go to all the docs I've seen and get my records to file a grievance to get the scans done. Then probably have to fight to get the implant trial.
    While this was going on, GP doc wants to do endoscopy with botox injection, denied. So my local gi said it can be done here instead of Philly so he filed to get it done...nothing yet. Figure it will once again be denied. So, day by day, or minute by minute, my life can go from smiling and able to do something to bent over in severe pain or nausea so bad you can't see straight!!
    Have a mobility scooter borrowed from someone and flipped it the other day. Nice bruising!!! Very colorful. Reminds me of a piece of stained glass I once bought to make something out of. Need a new one, a four wheel Osprey from Scooter Store!! But not in the budget. I splurged and ordered me a pair of pants that I hope will stay up and not fall off as I walk!!! Scooter, not going to happen no matter how much I hope. Even if I did get it, then I'd need a hook up for the back of my car to get it anywhere other than local.
    Just like GP, if it's not one thing, it's another. Mostly medical bills right now with hospital stays and ED visits.
    I do get a small amount from disability. Not very much as most of the time I was a stay at home mom. Not that I'll ever regret that!
    Learning to take things as they come, though I do have melt downs and cry like there's no tomorrow. I try to talk to others who are dealing with problems hoping that perhaps by talking with them, my problems will move to the rear and let me help someone else for a change.
    I do very little housework anymore, the pain gets in the way, as does the weakness.
    My poor hubby works full time, does housework, laundry, walks the dogs when he has a chance, bathes them, etc. While I feel guilty about letting him do it all. Guilt is a big part of my life.
    So, this is my life to this point. I am no longer the one who people can rely on to get them to doctors or shopping or visiting, instead it's me hoping someone may help me. Not too much help coming my way from family as they are all so busy, one really, really good friend even took me to ED and sat there until hubby got there.
    Physically and mentally drained, not to mention monetarily tight.
    But, I am still here so there is still hope. I try to hang on to that.

  12. yeah the reglan had led to lawsuits I seen a year or two ago.... I'm glad I didn't have good luck with it at the time... but all these drugs who know the effects till later right. My illness occurred in Oct. 2003 and lasted about 3 months or so ONLY but about a year of getting the system back up and up more and more very slower to be able to eat good.(my deepest heartfelt empathy's to all of you suffering.) I still have the excess belching and weird bouts now and then though. So mysterious as to WHYYYYY


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