Might sound a little 'sick', but in some ways (not all), you can also consider yourself lucky. I have had the most horrible manifestations from EDS all my life, but have always adjusted to them until . . . I woke up one morning only to have any life I've ever known completely gone forever from nothing more than just waking up.
I completely agree with the medical community in general is lacking in a generation where care is all about the almighty buck. After I was originally diagnosed w/ EDS (at the age of 14), it took me approx 18 years to ever find anyone that could medically re-confirm my diagnoses - so I had paperwork to present to all the others who obviously have zero knowledge about the disease or its devastating effects. I have never run into so many uneducated, and even unmotivated 'medical professionals' in my life. Unfortunatley for me, that was as far as I got - since it's near impossible trying to find anyone to monitor/ manage me with any sort of expertise on the disease (that they haven't gotten off of the internet - which is overly obvious once they walk in the door & start poking/ prodding). I have been actually told by dr.s that they have no time (and are actually losing money) by seeing me since I/ my history is too time consuming & they had more patients (e.g. textbook cases) that they could see in volume. It was suggested I go to a medical institution where they have more time to research, etc. & take their time - have been through several only to be told that they have absolutely no idea of what to do w/ me (surprise, surprise)
Well anyhow, that one lovely morning that was the last day of the only life I've ever known/ lived, my spine became the next victim of this no cure/ no treatment disease. Aside from the plethera of manifestations, it seems that my entire spine is rapidly degenerating - at an even faster rate than the rest of my joints, tissue, etc. So now I spend most of my days bed ridden, staring at the same 4 walls, sleeping from all the narcotics that barely even touch the chronic severe pain or staring at the stupid tv (that I absolutely cannot take anymore). Oh, did I forget to mention that the 20 different spine specialists (they usually sweep any true understanding of EDS under the rug), have all concurred that I need a full spinal fusion (from neck, down) - yet I'm inoperable due to the EDS. Nothing like a catch 22 to mix things up a bit! I am completley incotinent, have lost feeling/ use of many of my extremities, & have so many other mechanical & spinal nerve damage than I even care to think about. My autonomic system is going haywire - effecting my heart, breathing, etc., have all the fun edema, vasculits (which is another serious issue w/ most of us), etc. etc. etc. plus all sorts of actual spinal cord compression from either lax vertebrae (of the ones that haven't collapsed yet) oh, whatever . . . it is so overconsuming that I just can't even think about it anymore
But I guess my point is, it can always get worse. I know there are people out there that are even worse than me. So all we can do is just keep pluggin' away & do whatever we've got to do to get through the day - right? Sometimes I get angry when my body doesn't work the way it should, but for whatever weird reason - I never get depressed. Just keep pluggin' away - try to find that one specialists (who is God knows where) that might actually be able to do something. It is beyond frustrating, but don't ever let it get to you. Stay proactive. When they say no, you turn around and look somewhere else for the RIGHT answers.
In this day of designer diseases (e.g. the ones that everyone has turned into a lifelong cause to help), it's a real shame that other really serious & potentially life threatening diseases are so far from the minds of the medical community. We EDSers have all been through it, and keep going through it - doctors who have never heard of the disease, nevertheless know what to do w/ you while you're standing in front of them. Medicare doesn't exactly help either (know your plight there) - bad enough that I get substandard treatment b/c they don't want to pay for anything (b/c we don't fit the 'normal' mold) You just have to keep pluggin' away . . . and try your best not to let it all get to you. I always say sh*t happense, and it usually happens to me . . . but at least I'm glad that is me & not someone else that I love (who would never be able to handle it), ya know? Just keep pluggin' away & have faith that somewhere, somehow, some day you'll run into the right person who will be able to help make some difference in your life and your condition(s). That's about all any of 'us' can do.
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Might sound a little 'sick', but in some ways (not all), you can also consider yourself lucky. I have had the most horrible manifestations from EDS all my life, but have always adjusted to them until . . . I woke up one morning only to have any life I've ever known completely gone forever from nothing more than just waking up.
I completely agree with the medical community in general is lacking in a generation where care is all about the almighty buck. After I was originally diagnosed w/ EDS (at the age of 14), it took me approx 18 years to ever find anyone that could medically re-confirm my diagnoses - so I had paperwork to present to all the others who obviously have zero knowledge about the disease or its devastating effects. I have never run into so many uneducated, and even unmotivated 'medical professionals' in my life. Unfortunatley for me, that was as far as I got - since it's near impossible trying to find anyone to monitor/ manage me with any sort of expertise on the disease (that they haven't gotten off of the internet - which is overly obvious once they walk in the door & start poking/ prodding). I have been actually told by dr.s that they have no time (and are actually losing money) by seeing me since I/ my history is too time consuming & they had more patients (e.g. textbook cases) that they could see in volume. It was suggested I go to a medical institution where they have more time to research, etc. & take their time - have been through several only to be told that they have absolutely no idea of what to do w/ me (surprise, surprise)
Well anyhow, that one lovely morning that was the last day of the only life I've ever known/ lived, my spine became the next victim of this no cure/ no treatment disease. Aside from the plethera of manifestations, it seems that my entire spine is rapidly degenerating - at an even faster rate than the rest of my joints, tissue, etc. So now I spend most of my days bed ridden, staring at the same 4 walls, sleeping from all the narcotics that barely even touch the chronic severe pain or staring at the stupid tv (that I absolutely cannot take anymore). Oh, did I forget to mention that the 20 different spine specialists (they usually sweep any true understanding of EDS under the rug), have all concurred that I need a full spinal fusion (from neck, down) - yet I'm inoperable due to the EDS. Nothing like a catch 22 to mix things up a bit! I am completley incotinent, have lost feeling/ use of many of my extremities, & have so many other mechanical & spinal nerve damage than I even care to think about. My autonomic system is going haywire - effecting my heart, breathing, etc., have all the fun edema, vasculits (which is another serious issue w/ most of us), etc. etc. etc. plus all sorts of actual spinal cord compression from either lax vertebrae (of the ones that haven't collapsed yet) oh, whatever . . . it is so overconsuming that I just can't even think about it anymore
But I guess my point is, it can always get worse. I know there are people out there that are even worse than me. So all we can do is just keep pluggin' away & do whatever we've got to do to get through the day - right? Sometimes I get angry when my body doesn't work the way it should, but for whatever weird reason - I never get depressed. Just keep pluggin' away - try to find that one specialists (who is God knows where) that might actually be able to do something. It is beyond frustrating, but don't ever let it get to you. Stay proactive. When they say no, you turn around and look somewhere else for the RIGHT answers.
In this day of designer diseases (e.g. the ones that everyone has turned into a lifelong cause to help), it's a real shame that other really serious & potentially life threatening diseases are so far from the minds of the medical community. We EDSers have all been through it, and keep going through it - doctors who have never heard of the disease, nevertheless know what to do w/ you while you're standing in front of them. Medicare doesn't exactly help either (know your plight there) - bad enough that I get substandard treatment b/c they don't want to pay for anything (b/c we don't fit the 'normal' mold) You just have to keep pluggin' away . . . and try your best not to let it all get to you. I always say sh*t happense, and it usually happens to me . . . but at least I'm glad that is me & not someone else that I love (who would never be able to handle it), ya know? Just keep pluggin' away & have faith that somewhere, somehow, some day you'll run into the right person who will be able to help make some difference in your life and your condition(s). That's about all any of 'us' can do.
June 3, 2009 - 7:00pmThis Comment
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