Regardless of everything, the bottom line is EDS is not a 'designer disease' like so many currently getting a lot of attention - which means a rare disease is just becoming rarer in the eyes of a medical community which the almighty dollar means more than truly helping someone in need of their help. I have noticed time & time again, that for the doctors that do 'know of' EDS (doesn't mean that actually know it), they rather tend to sweep it entirely under the rug than have anything to do with it . . . once you see those eyes glazing over, it's a hint for you to move on to hopefully finding another doctor whom has some 'real experience' with it.
It absolutely sickening to me, that there are so many people from other countries that come to the "States" for medical treatment of difficult diseases, yet here we are sitting literally helpless staring into our own backyard & most no one could care less.
I know that if I weren't proactive, I wouldn't be getting anywhere . . . though I guess I'm getting nowhere fast now too. I have had my entire life wiped clean off of the slate for supposed spinal injuries/ conditions that have nothing to do w/ EDS (yet I say they have everything to do with the spinal instability & it's only obvious when you have a disease where all the collagen is deteriorating in your body - which was already weakened from the day you were born- that it has everything to do w/ problems the 'normal' population never has to deal with until they're old & grey.
I have lost everything, I have no quality of life & scream in pain every time I move from a spine that has collapsed, has severe spinal nerve & cord compression, etc. and now have become completely incontinent b/c of - not to mention what my immune system & autonomic system are going through or the fact that I can't feel most of my limbs, & have lost the use of many of them so far leaving me literally crippled & dependant upon my service dog & others - and I know more's to come. YET, every single specialist I have ever been to will not touch me w/ a 10 foot pole. Oh yeh, they agree I need emergency decompression surgery & my entire spine fused - but EDS is too 'scary' - so they just pump me full of narcotics & stick me w/ spinal injections 1-2x every single month (the 'average' person is only 3-4x a YEAR) - so I have NO doctor at all, except for my pain mgt dr. That's it. They just don't care to be involved - there's too many risks . . . for them ($ wise). Sickening!
I think I said it best to one doctor . . . "I thought your oath was to do no harm?" He agreed with me. "Well, your JUST LEAVING ME like this is doing exactly that - you know it & I know it - so why are you doing that?" As you can imagine, it went dead silent . . . he had no justifiable answer.
This is exactly the type of thing that happens over & over (I've been doing it for 18 yrs w/ the EDS, 4 yrs now w/ my spine. I still have no dr., nor can I find anyone that remotely knows anything about the disease. There is no cure/ treatment & they just leave it at that - always giving me that excuse. Hey, I'm not looking for a miracle worker, but I would appreciate finding just ONE doctor that would take the time to at least 'try' to help in any little way vs. sweeping it under the rug. I have been told that it takes too much time, too much effort & they don't get paid enough money for it WHEN they have plenty of other 'textbook' patients that they can see 10x as much in the same amt of time (= bigger $).
So what is left for us to do? Something needs to really be done in this country w/ the medical profession taking a bigger role in helping those 'helpless' diseases - such as EDS. Research doesn't do a damn thing, except tell us what we already know . . . I know what my symptoms are - I know the next type's symptoms are - now what? WHEN IS someone going to take a STAND so that our voices are heard? They need to refocus their priorities b/c a geneticist (the only ones who know this disease the most) isn't going to do a damn thing to help me right now while I'm suffering & watching my body rapidly & literally fall apart in front of my eyes each & every day - while all I can do is lie here helplessly.
Really, what do you do when ever doctors don't care about you? I keep pluggin' away, hoping to find that 'one' . . . but the more of these new dr.s that graduate from med school seem to be focused more on the $ than truly making a difference. Something needs to change. I don't know exactly what to do, but maybe if EDS was brought more into the public light?
Sorry guys . . . having a bad couple of weeks here. I'm not boo hooing here, it's just that I'm soooo ticked off at the blatent irresponsibility of the medical community in general when it comes to all people in URGENT need of medical care. I don't want to read anymore about EDS, I don't want to learn, etc. I know it all, I've lived it all . . . I just want some medical attention for us all - whether or not it fixes our problems isn't necessarily as meaningful as finding someone that will just TRY.
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Regardless of everything, the bottom line is EDS is not a 'designer disease' like so many currently getting a lot of attention - which means a rare disease is just becoming rarer in the eyes of a medical community which the almighty dollar means more than truly helping someone in need of their help. I have noticed time & time again, that for the doctors that do 'know of' EDS (doesn't mean that actually know it), they rather tend to sweep it entirely under the rug than have anything to do with it . . . once you see those eyes glazing over, it's a hint for you to move on to hopefully finding another doctor whom has some 'real experience' with it.
It absolutely sickening to me, that there are so many people from other countries that come to the "States" for medical treatment of difficult diseases, yet here we are sitting literally helpless staring into our own backyard & most no one could care less.
I know that if I weren't proactive, I wouldn't be getting anywhere . . . though I guess I'm getting nowhere fast now too. I have had my entire life wiped clean off of the slate for supposed spinal injuries/ conditions that have nothing to do w/ EDS (yet I say they have everything to do with the spinal instability & it's only obvious when you have a disease where all the collagen is deteriorating in your body - which was already weakened from the day you were born- that it has everything to do w/ problems the 'normal' population never has to deal with until they're old & grey.
I have lost everything, I have no quality of life & scream in pain every time I move from a spine that has collapsed, has severe spinal nerve & cord compression, etc. and now have become completely incontinent b/c of - not to mention what my immune system & autonomic system are going through or the fact that I can't feel most of my limbs, & have lost the use of many of them so far leaving me literally crippled & dependant upon my service dog & others - and I know more's to come. YET, every single specialist I have ever been to will not touch me w/ a 10 foot pole. Oh yeh, they agree I need emergency decompression surgery & my entire spine fused - but EDS is too 'scary' - so they just pump me full of narcotics & stick me w/ spinal injections 1-2x every single month (the 'average' person is only 3-4x a YEAR) - so I have NO doctor at all, except for my pain mgt dr. That's it. They just don't care to be involved - there's too many risks . . . for them ($ wise). Sickening!
I think I said it best to one doctor . . . "I thought your oath was to do no harm?" He agreed with me. "Well, your JUST LEAVING ME like this is doing exactly that - you know it & I know it - so why are you doing that?" As you can imagine, it went dead silent . . . he had no justifiable answer.
This is exactly the type of thing that happens over & over (I've been doing it for 18 yrs w/ the EDS, 4 yrs now w/ my spine. I still have no dr., nor can I find anyone that remotely knows anything about the disease. There is no cure/ treatment & they just leave it at that - always giving me that excuse. Hey, I'm not looking for a miracle worker, but I would appreciate finding just ONE doctor that would take the time to at least 'try' to help in any little way vs. sweeping it under the rug. I have been told that it takes too much time, too much effort & they don't get paid enough money for it WHEN they have plenty of other 'textbook' patients that they can see 10x as much in the same amt of time (= bigger $).
So what is left for us to do? Something needs to really be done in this country w/ the medical profession taking a bigger role in helping those 'helpless' diseases - such as EDS. Research doesn't do a damn thing, except tell us what we already know . . . I know what my symptoms are - I know the next type's symptoms are - now what? WHEN IS someone going to take a STAND so that our voices are heard? They need to refocus their priorities b/c a geneticist (the only ones who know this disease the most) isn't going to do a damn thing to help me right now while I'm suffering & watching my body rapidly & literally fall apart in front of my eyes each & every day - while all I can do is lie here helplessly.
Really, what do you do when ever doctors don't care about you? I keep pluggin' away, hoping to find that 'one' . . . but the more of these new dr.s that graduate from med school seem to be focused more on the $ than truly making a difference. Something needs to change. I don't know exactly what to do, but maybe if EDS was brought more into the public light?
Sorry guys . . . having a bad couple of weeks here. I'm not boo hooing here, it's just that I'm soooo ticked off at the blatent irresponsibility of the medical community in general when it comes to all people in URGENT need of medical care. I don't want to read anymore about EDS, I don't want to learn, etc. I know it all, I've lived it all . . . I just want some medical attention for us all - whether or not it fixes our problems isn't necessarily as meaningful as finding someone that will just TRY.
June 6, 2009 - 6:27amThis Comment
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