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  Good Luck

  From niscoti October 3, 2008

  Hi Again, Sorry I won't get to meet you then, but so glad for you you're back in California, where the weather and the people are a bit warmer. It looks like I'll be going to Germany to have my cervical discs replaced because here, they just fuse them.b They're so far ahead of us here on patient treatment, and my insurance will probably pay most of it. If there's anything I've learned about EDS, it's that you have to be your own best friend in spite of all the friends and family, co-workers and professionals you'll encounter who think they have you pegged as a hypochondriac. I'm fairly certain that history will some day regard 'hypochondriosis' as a bogus and primitive attempt to explain what doctors don't understand. You sound like you really suffer greatly from your pains. I feel for you. I wonder if it's any consolation, but i went through a very rough spell in my late teens and early to mid twenties. It seems like every joint ached all the time, and I bruised at the slightest bump. I had all my moles remeoved because they looked like melanoma, only to find that this is typical with some EDS forks, but that was easy compared to the condescending and patronizing comments of my many doctors through the years. I felt pretty fantastic all through my late twenties, thirties, and even my early forties. I hope you were finally abloe to get that diagnosis. I'm still working on it, believe it or not. y new insurance just kicks in this month and I'll finally be able to see Dr Peter Byers at UW on November 4. He's the man. Google him if you haven;t already done so. Do you mind my asking what you plan to do for a living? I think this may be the most important thing you can do to take some control an minimize the burden of living with EDS. And plese excuse the typos, I 'm losing contriol; of my right hand. Good luck! Niki

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  I’m With You

  From niscoti June 6, 2008

  Hey there jjehle, YOu sound so much like me, it makes me want to reach out and tell you you're not alone. I likve up in Bellingham and am planning to get my doctor to refer me to UW ASAP. I'm a bit older than you - 51, and it's taken this long to get my docs to take me seriously. I just found o9ut I have cervical stenosis and will probably need surgery, but surgery is pretty risky for us EDS folks, and I'm terrified of becoming paralized or iving with even more pain than I now have. It's taken years and 'firing' sweveral doctors, but I think I've finally found one who believes me. In any case, I jsut wanted you to know about the UW othopedic decparttment. They are one of the few centers in the nation that researches EDS and understand the delicate nature of our tender flesh. I'm hoiping they can help me figure out how to get though spine surgery. WEhy don't you check them out?

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