Today I feel a bit defeated.
I have a lot of health problems. I keep going to a doctor and reassessing where I am, basically. if anything has gotten worse; what we have or have not tried.
It's kind of been a mystery, what is going on, "officially". I've had a diagnosis of MCTD- it's not important the specifics, but it's a pain in the butt* connective tissue disorder.
*[haha- at first i forgot the word "butt", I noticed]
My presentation of symptoms most matches RA, but the labs don't exactly support it consistently. I have been constantly frustrated and disappointed. Told over and over there is nothing more that can be done.
The biggest frustrations come from doctors who don't actually take all of my symptoms into account, and therefore block possible trials of meds that could actually help.
Example: diagnosing a patient with stress headaches after they have already unsuccessfully and fully trialed every medication for stress headaches. Then you tell them that you will not prescribe any treatment that is not indicated for stress headaches specifically, een though there might be treatments available for head pain and similar syndromes/ disorders which have overlapping symptoms with those of stress headache.
So... this is pretty much which has happened. Sort of [it's a bit more frustrating, I explain further]
I actually predicted that it would a while ago and I was HOPING I was wrong.
I have been blocked from treatments before- told "there is nothing else we can offer you". Every time this happens it's like my heart just melts to the floor, slinks to the closest wall, and slumps against it like the loneliest saddest drunk you have ever seen.
This has happened over and over and over.
The kicker now is that I have tried every medication and am attempting to pursue other treatments as well- but I am in so much pain that doing things like PT... I don't even know how that's going to work.
They are now diagnosing me with fibromyalgia, even though I have tried pretty much ever fibromyalgia treatment and not been able to tolerate any of them [this is something we specifically addressed today and something my doctor said himself]. They refuse to attempt anything not specifically indicated for fibromyalgia, even though there are medications that are indicated for some of my most severe symptoms- which haven't been helped by the fibro meds even when I could tolerate them for long enough to tell. Know why? Because my most severe symptoms don't match up with fibromyalgia...
But, they refuse to prescribe me anything other than that which is indicated for fibromyalgia...
so... "there is nothing more [they] can offer me".
I asked for xrays again of extremities since the last time I had them was about two and a half years ago and things have gotten much worse- they sloooowly explain to me that it doesn' make sense to xray for fibromyalgia. I... I can't even...
["why is it? because it is. Is it? It is. Why is it? because it is..."]
By putting fibromyalgia on my record and halting investigation though, as a young female with no college degree, a psych history, no ability to work or go to school? They have kind of sentenced me to remain in the position I am socioeconomically. Not one hundred percent- no, small miracles happen.
But we are topping high 90-something percent here. I kind of have the idea that if I already had this stuff it would be seen more worth while to "push the envelope" in terms of what they are willing to try for treatment. I will never actually know if that is true or not, so I'll have to eventually get that idea out of my brain.
So... I mean today my heart slid into a mouse hole and it's refusing to even discuss the issue unless it gets an endless supply of tequila, basically. After recovering from hangover, it may have other demands. I have no tequila, and don't feel like sticking my hand into a dark rodent home.
So, there we are right now.
*sigh*
This is getting old. We just had a whole conversation about revamping my treatment plan... I had really really high hopes.
Eventually a heart just WON'T re-mend.
haha it's going to be all duct tape soon!
I have a lot of health problems. I keep going to a doctor and reassessing where I am, basically. if anything has gotten worse; what we have or have not tried.
It's kind of been a mystery, what is going on, "officially". I've had a diagnosis of MCTD- it's not important the specifics, but it's a pain in the butt* connective tissue disorder.
*[haha- at first i forgot the word "butt", I noticed]
My presentation of symptoms most matches RA, but the labs don't exactly support it consistently. I have been constantly frustrated and disappointed. Told over and over there is nothing more that can be done.
The biggest frustrations come from doctors who don't actually take all of my symptoms into account, and therefore block possible trials of meds that could actually help.
Example: diagnosing a patient with stress headaches after they have already unsuccessfully and fully trialed every medication for stress headaches. Then you tell them that you will not prescribe any treatment that is not indicated for stress headaches specifically, een though there might be treatments available for head pain and similar syndromes/ disorders which have overlapping symptoms with those of stress headache.
So... this is pretty much which has happened. Sort of [it's a bit more frustrating, I explain further]
I actually predicted that it would a while ago and I was HOPING I was wrong.
I have been blocked from treatments before- told "there is nothing else we can offer you". Every time this happens it's like my heart just melts to the floor, slinks to the closest wall, and slumps against it like the loneliest saddest drunk you have ever seen.
This has happened over and over and over.
The kicker now is that I have tried every medication and am attempting to pursue other treatments as well- but I am in so much pain that doing things like PT... I don't even know how that's going to work.
They are now diagnosing me with fibromyalgia, even though I have tried pretty much ever fibromyalgia treatment and not been able to tolerate any of them [this is something we specifically addressed today and something my doctor said himself]. They refuse to attempt anything not specifically indicated for fibromyalgia, even though there are medications that are indicated for some of my most severe symptoms- which haven't been helped by the fibro meds even when I could tolerate them for long enough to tell. Know why? Because my most severe symptoms don't match up with fibromyalgia...
But, they refuse to prescribe me anything other than that which is indicated for fibromyalgia...
so... "there is nothing more [they] can offer me".
I asked for xrays again of extremities since the last time I had them was about two and a half years ago and things have gotten much worse- they sloooowly explain to me that it doesn' make sense to xray for fibromyalgia. I... I can't even...
["why is it? because it is. Is it? It is. Why is it? because it is..."]
By putting fibromyalgia on my record and halting investigation though, as a young female with no college degree, a psych history, no ability to work or go to school? They have kind of sentenced me to remain in the position I am socioeconomically. Not one hundred percent- no, small miracles happen.
But we are topping high 90-something percent here. I kind of have the idea that if I already had this stuff it would be seen more worth while to "push the envelope" in terms of what they are willing to try for treatment. I will never actually know if that is true or not, so I'll have to eventually get that idea out of my brain.
So... I mean today my heart slid into a mouse hole and it's refusing to even discuss the issue unless it gets an endless supply of tequila, basically. After recovering from hangover, it may have other demands. I have no tequila, and don't feel like sticking my hand into a dark rodent home.
So, there we are right now.
*sigh*
This is getting old. We just had a whole conversation about revamping my treatment plan... I had really really high hopes.
Eventually a heart just WON'T re-mend.
haha it's going to be all duct tape soon!
