![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
so doc has tracked down a pain specialist who is very renown for their knowledge on spinal injuries and disorders. i think this is the first time i've felt hope in a very long time in regards to the awful pain i live through every day. i was starting to think i was insane and making all of this hell up (joey points out that it's pretty hard to fake spinal fractures and herniated/collapsed discs. i say shut up and let me play crazy, heh).
i remember when this all started. i was 12. no one believed me then, and my mom always said it was from being so skinny and having such huge boobs. we couldn't really afford doctors and we were already battling what turned out to be cervical cancer, so my spine took a back seat.
when i was 15 or 16 i remember waking out of a dead sleep because my legs had gone totally numb. i remember trying to shake them, thinking i'd slept wrong and they'd "fallen asleep." gradually over the next 15 minutes they began to tingle and burn, then a heinous pain in my spine that caused me to scream bloody murder. mom rushes in and starts yelling at me for overreacting. sorry mom, but being temporarily paralyzed at 15/16 years old is a bit scary. my stepfather eventually convinced her that i needed to see a doctor just to be sure, and she grudgingly took me, telling me what a faker i was the whole time, telling me i was doing this to get out of school.
the doctor barely spoke english and had me bending every which way. this is when the cracking and popping i've become so accustomed to was starting. bending side to side was producing sickening cracking sounds repeatedly and doc orders an xray, saying she believed i might have some form of juvenile primary chronic progressive arthritis beginning. 7 - 10 business days later i was told that at the ripe old age of 16 i had arthritis in my spine. she said as long as i take care of myself i would be fine, and there was nothing to worry about.
ha.
over the years the problem flared up randomly, sometimes restricting me to a bed for days on end. the simple act of breathing was sometimes too much. i always attributed it to being a stripper, prancing around on ridiculous high heels and hanging upside-down off of poles. i'm not saying that didn't help this along, it more than likely did, just as much as the 10+ years on a skateboard.
in '04 i believe, i slipped in the driveway of where i was living falling flat on my ass. it was hilarious, yes, but pain shot down both legs and i couldn't breathe. a week passed and it was only getting worse, so i went to the hospital where they promptly told me i strained a muscle in my back and gave me some motrin then sent me on my way.
well, the motrin did nothing. i returned to the same hospital a few weeks later after i'd developed a pretty distinct limp from the pain and numbness combo. they then proceeded to tell me i sprained my spine and to alternate cold and warm compresses and take some naproxen. a few weeks later i could barely stand, and wyl literally had to carry me to the bathroom sometimes. eventually he convinced me i needed to go to the hospital and not leave until i had an answer.
the people at the hospital were a little less dickish to me and stopped assuming i was med seeking because at that point i really wasn't very well versed in (legal) narcotics. i could not lay flat, which would make the MRI experience less than ideal, so they gave me some dilaudid. i promptly began laughing really hard and singing to people. once they got me to sit still they put me in the mri tube. this is when we found out i had broken my spine and had been trying to live like that for over a month, being fed motrin and naproxen. we did many types of physical therapy and cortisone shots, all of which were temporary fixes.
as the years passed by the situation only worsened. the fractures healed but new ones formed. we got the majorly herniated disc back into it's spot only for it to harden and eventually collapse christmas eve 2007. more discs have herniated, yoga has helped to keep them in place, but some still pop out, like the one in my neck that caused partial paralysis.
and that's the short version...
i've been longing for over 15 years for some solace, for an end to this pain. i've swallowed more narcotics than i EVER shot when i was a junkie over the years. i've tried everything from aromatherapy to acupuncture to yoga to surgeries upon surgeries to biofeedback, and nothing has been a permanent fix, or really a fix of any kind. the two fusions had obvious results right away when it came to decompressing my spinal cord, but the arthritis, the muscle aches and burning, it's almost like nothing had been done at all.
i *am* grateful for being able to walk normal again, don't get me wrong. the whole being able to use my left arm/hand again for the most part was a cool perk too, but i would like to finally stop crying myself to sleep because of the pain. i would like to be able to curl up with my sweetheart for long periods of time without getting stabbing or shooting pains. i would like to hold him as we fall asleep like i did in the very beginning of our relationship. i'd like to be able to make a quick movement without a sharp pain as a repercussion.
hell, i'd like to just be able to sleep through a night at this point.
so hope... yeah, i'm not a hopeful person. i really don't believe in hope because it hurts so bad when it's dashed, but i'm really wondering if a fresh prospective from a doctor that SPECIALIZES in what's wrong with me might finally offer some help, maybe even an answer. i'm tired of being 28 going on 98.
so here's hoping this asshole can help.
i remember when this all started. i was 12. no one believed me then, and my mom always said it was from being so skinny and having such huge boobs. we couldn't really afford doctors and we were already battling what turned out to be cervical cancer, so my spine took a back seat.
when i was 15 or 16 i remember waking out of a dead sleep because my legs had gone totally numb. i remember trying to shake them, thinking i'd slept wrong and they'd "fallen asleep." gradually over the next 15 minutes they began to tingle and burn, then a heinous pain in my spine that caused me to scream bloody murder. mom rushes in and starts yelling at me for overreacting. sorry mom, but being temporarily paralyzed at 15/16 years old is a bit scary. my stepfather eventually convinced her that i needed to see a doctor just to be sure, and she grudgingly took me, telling me what a faker i was the whole time, telling me i was doing this to get out of school.
the doctor barely spoke english and had me bending every which way. this is when the cracking and popping i've become so accustomed to was starting. bending side to side was producing sickening cracking sounds repeatedly and doc orders an xray, saying she believed i might have some form of juvenile primary chronic progressive arthritis beginning. 7 - 10 business days later i was told that at the ripe old age of 16 i had arthritis in my spine. she said as long as i take care of myself i would be fine, and there was nothing to worry about.
ha.
over the years the problem flared up randomly, sometimes restricting me to a bed for days on end. the simple act of breathing was sometimes too much. i always attributed it to being a stripper, prancing around on ridiculous high heels and hanging upside-down off of poles. i'm not saying that didn't help this along, it more than likely did, just as much as the 10+ years on a skateboard.
in '04 i believe, i slipped in the driveway of where i was living falling flat on my ass. it was hilarious, yes, but pain shot down both legs and i couldn't breathe. a week passed and it was only getting worse, so i went to the hospital where they promptly told me i strained a muscle in my back and gave me some motrin then sent me on my way.
well, the motrin did nothing. i returned to the same hospital a few weeks later after i'd developed a pretty distinct limp from the pain and numbness combo. they then proceeded to tell me i sprained my spine and to alternate cold and warm compresses and take some naproxen. a few weeks later i could barely stand, and wyl literally had to carry me to the bathroom sometimes. eventually he convinced me i needed to go to the hospital and not leave until i had an answer.
the people at the hospital were a little less dickish to me and stopped assuming i was med seeking because at that point i really wasn't very well versed in (legal) narcotics. i could not lay flat, which would make the MRI experience less than ideal, so they gave me some dilaudid. i promptly began laughing really hard and singing to people. once they got me to sit still they put me in the mri tube. this is when we found out i had broken my spine and had been trying to live like that for over a month, being fed motrin and naproxen. we did many types of physical therapy and cortisone shots, all of which were temporary fixes.
as the years passed by the situation only worsened. the fractures healed but new ones formed. we got the majorly herniated disc back into it's spot only for it to harden and eventually collapse christmas eve 2007. more discs have herniated, yoga has helped to keep them in place, but some still pop out, like the one in my neck that caused partial paralysis.
and that's the short version...
i've been longing for over 15 years for some solace, for an end to this pain. i've swallowed more narcotics than i EVER shot when i was a junkie over the years. i've tried everything from aromatherapy to acupuncture to yoga to surgeries upon surgeries to biofeedback, and nothing has been a permanent fix, or really a fix of any kind. the two fusions had obvious results right away when it came to decompressing my spinal cord, but the arthritis, the muscle aches and burning, it's almost like nothing had been done at all.
i *am* grateful for being able to walk normal again, don't get me wrong. the whole being able to use my left arm/hand again for the most part was a cool perk too, but i would like to finally stop crying myself to sleep because of the pain. i would like to be able to curl up with my sweetheart for long periods of time without getting stabbing or shooting pains. i would like to hold him as we fall asleep like i did in the very beginning of our relationship. i'd like to be able to make a quick movement without a sharp pain as a repercussion.
hell, i'd like to just be able to sleep through a night at this point.
so hope... yeah, i'm not a hopeful person. i really don't believe in hope because it hurts so bad when it's dashed, but i'm really wondering if a fresh prospective from a doctor that SPECIALIZES in what's wrong with me might finally offer some help, maybe even an answer. i'm tired of being 28 going on 98.
so here's hoping this asshole can help.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
From:
no subject
From:
no subject
it's been so bad lately i've actually been thinking about taking my doctor up on filing for disability, but that wouldn't change the pain level one bit, i just wouldn't have to go to work. work sometimes actually distracts me from the pain, so i'm not sure that it would be ideal for me to quit, yanno?
From:
no subject
If you do ever get disability, you can still work a certain amount of hours and make a certain amount of money; I forget what the cutoff is. And you can definitely attend school.
From:
no subject
im wondering though, did your doctors inform you that back surgery(ies) may not help? cause thats the scary thing about them. sometimes they dont help or make the problem even worse...im not trying to sound cynical, but its the truth. even before nursing, i knew people suffering from similar issues having this and that surgery that may or may not help at all....and while at the bedside, i cant tell you how many of my patients have had 6, 10, 15etc. back surgeries, and are in constant pain...i dont know what to offer support wise, and im really sorry for that...i know that there are implanted pain pumps available for that sort of thing. but really narcotics are such an awful solution as well...a. you have the people who think youre just drug seeking, and b. tolerance makes people need to take more for relief, and then heaven forbid you dont take them after your body is used to it, and youre in more pain than in the first place...i swear someone needs to come up with a better pain relief system than narcotic based....its such a double edged sword....
ah anyway, again, i wish i could type out a silver bullet here, but...all i can do is read what you have to say and express my empathy.
From:
no subject
i always see people at work coming in for their oxy's or whatever, telling me they've been taking different pain pills for 15 years, and i don't want to be that person. i was reading about a mechanism they implant in your brain as sort of a "pain pacemaker" but i'm not sure i'm particularly into that idea either. ideally, i'd want to be stuck having to do exercises every day for the rest of my life. i already do certain ones for the sciatica that work fairly well in preventing recurrences. now to find something like that for the rest of my spine...