National Invisible Chronic Illness Week
Alerted by Steph, I have discovered, and am here to announce (in a very tired voice, no doubt, and as soon as I take some more Tylenol Cold), that it is...
National Invisible Chronic Illness Week!
It would be easy for me to expound/rant upon this concept, but you know what? I just don't have the spoons for that right now. So, intead, I'm just going to copy/paste my "what is wrong with Rhi physically" laundry list behind a cut, and if you're not one of those who has already digested it in the past, then that aught to give you enough to chew on for a little bit. Just think about this -- even if you're one of the few who not only knows the truth, but grasps it...for each of you, there are 20 people who, "Know [I] have something wrong with me, but aren't really sure what"...and for each of those 20, there's 100 who have no idea I go through the generally recognized-as-challenges challenges of life, with anything but perfect health and ability. Let's not even get into the people who assume not only that I don't have any disabilities, but assume I can't have any, because of X, Y, or Z. And then, just think again...there are a lot of people like me out there. Even if you're one of us...you probably don't know about most of the others.
Good e'en...I'm Rhiannon. While not all my disabilities are invisible (if you're paying attention), they don't have big neon signs, either.
I suppose on that account, I should contextualize myself. I'm someone who lives life with the "Spoon Theory", and if you don't know what that is yet, then I'll happily link and explain, because it's a great explanation tool for those with lupus, fibromyalgia, cancer patients, those with arthritis or other chronic disorders that leave one tired and pained all the time. Anyway.
I...don't actually know if I'm legally blind, or not. I'm extremely myopic and astigmatic, so my unaided eyesight amounts to the effect of looking through several sheets of wax paper, into a funhouse mirror, unless something is 2-3 inches from my face. I see smudges of color and vague shapes, and generally judge by that, and motion, my other senses, and physical memory. If I have my glasses but they are slightly crooked (so slightly you can't tell by looking at them on my face), I can see more or less clearly, but the funhouse mirror effect really kicks in, because the angles are all funky on things that otherwise seem clearly defined. So, for example, I'd be unable to walk if I glanced down, because the floor would look to be knee-level on one side, and several yards below my foot, on the other side.
I've got a herniated disk in my back, which also has mild scoliosis. I've got Raynaud's Syndrome, a circulatory disorder of the extremities...which basically means my circulation sucks, everywhere except my torso. That is enough so the case that I can't give blood in the normal fashion, because by the time enough blood got back into my arm, cells would be dying and veins collapsing. At its mildest, my hands are cold and clammy. At its worst, they can be freezing cold to the touch, purple, completely numb and stiff to the elbow. I've got Irritable-Bowel Syndrome, and (mostly food-related, some topical, a few breathing, and a smattering of random) allergies and intolerances up the wazoo. Most of what I can eat is grains and meat (bird and beast). I suffer from migranes, and at times, insomnia. In the past I have had ulcers, and without birth control, I form ovarian cysts with nearly every cycle.
I've also got mitral-valve prolapse, a congenital heart condition where two of the valve-flaps overlap, instead of meeting...I don't actually have the condition severely enough for toxic blood backwash, but I do get a slew of fun symptoms going by "dysautonomia" and "orthostatic intolerance", ranging from vision blackouts to dizziness, a heart murmer, palpitations, breathing problems very similar to asthma, chest pains, and passing out. They are aggravated by physical, mental or emotional stress, and at one point I was on daily medication for them, but the medication lowered my already abnormally low blood pressure, and I was passing out even more often! The heart thing tends to be worse in the heat.
That is of course balanced by the paresthesia (pins & needles / numbness), tendinitis and arthritis and all of that sort of stuff, which is worse in cold or any kind of transitional weather. I've got tendinitis in my wrists, arthritis starting up a bit in my hands, but usually the thing people note me referring to most often, is my leg.
~~~~~~~~~~~~~~~
I am a mutant. While this can be fun to tell kids now and again, that really is the only advantage. I cannot climb any surface, fly any distance, alter the weather reliably or speak clearly in other people's minds with any consistancy. I cannot change color to match my surroundings, teleport, fight with supernatural speed and strength or adopt the form of any living creature. I did not get the ability to heal quickly, stop time, alter my body chemistry at will or develop awe-inspiring beauty or intelligence. I got a wonky knee.
When I was about 9 years old, my right knee just up and started rotating around my leg like the head of the possessed kid in "The Exorcist"...thankfully without spurts of pea soup as accompaniment. For the first few weeks of this development, about the worst I suffered were the confused exclamations of, "Hey...your knee is crooked" from my peers (a statement I would come to really hate, as the years went on). Around one month into the rotation, however, the shifting position of my joint started making itself known in ways beyond those noticed by pointedly staring or quickly averted eyes. My knee, probably about 30º in from my foot at the time, would now, with increasing frequency, do one of two things. It would lock into any random position, or it would spontaniously go out from under me.
Seeing as my knee was now quite obviously unhealthy as well as freaky-looking, and seeing as there are only so many times a person can fall down when they aren't even doing much before it gets highly inconvenient...it was decided that maybe it was time to look into this odd behavior on the part of my leg.
Well, my pediatrician was clueless. But then again, she always was.
The trouble is that there aren't a whole lot of specialists who will see a nine year old without a good explanation...and we didn't really have an explanation for my knee. Finally we managed to get me an appointment with the top knee specialist in the NYC metro area...he wasn't technically supposed to see anyone under 18, but my friend's mother worked in his hospital of affiliation, and personal connection and intrigue won over. At this point I was about three months into the mysterious rotation, at which point it had seemingly (and thankfully had actually) stopped. My right knee now pointed in about 45º, maybe 50º from my foot, basically facing the knee of my left leg, and bumping into it, if my legs were pressed together. The knee was constantly locking up or popping out from under me (and this was hardly due to excess weight...I was underweight until about the age of 17), and I found myself fairly incapable of bracing myself on it enough to, say, walk up or down stairs without falling. I had fallen innumerable times, and was thus generally suffering a sprained ankle and knee even when the knee was otherwise on good behavior.
The top knee guy in NYC was somewhat baffled. He came up with a long, technical name which technically explained what my knee had done, but he was baffled as to why or how it did it. Medicine has three categories which conditions fall into. This issue of my knee was not congenital...I had not been born with it. (I had inherited from my mother the congenital matter of both knees turning in juuuuusst slightly...but that had nothing to do with this rotation of one knee. The disposition towards the development was not inherited...there was no sign of it in anyone else in the family, and the condition itself couldn't really be linked on any basis other than vague connection of appearance.) On the same account, the rotation of my knee could not be considered developmental. Apparently, to be classified as developmental, the medical condition has to progress/develop slowly over time. Rotating 45º around my leg for no apparent reason within the span of 3 months did not qualify. Likewise, the rotation could not be attributed to an injury. It had simply...happened.
"Bone structural mutation" was the best explanation.
Attempting to get a grip on the idea that I went to a doctor to be told that I was a mutant, and yet found myself provided with neither relief or superpowers, 9-year-old me stood up in an effort to lend whatever I was about to say more impact.
It sort of worked. Kinda. In a way. Mr.Man got a look at what my knee looks like when I stand up. See, it's a lot harder to see the severity of the rotation, when I'm sitting down. Angles..shadows..you can tell what's wrong, but it doesn't look as extreme. When I stand up, on the other hand, it becomes rather obvious.
Now. Mr.Man, this top knee guy in NYC, calls in every other available doctor and medical student in the building, to get a look at me. I am suddenly surrounded by men and women poking at my knee, asking repetitive questions in excitied but bewildered voices, scratching notes, and taking polaroids. None of them have ever seen a case as extreme as mine. The closest they came was a photo in the medical journals they studied from in med. school. Wow.
Great. Now not only am I a freak, but I'm a record-setting freak.
I was prescribed a regimen of at-home and, for a few months, in-rehab physical therapy. The hope was that strengthening the muscles around the knee would hold the knee in place, stop any further rotation (which, as noted, had already stopped), and keep the knee well-behaved. All it did was give me mismatched thighs to go with mismatched knees (since all the exercises were done only with one leg), and all the mismatchedly muscled right thigh did for me was let me fall..slower.
Handy in a way, I suppose, if there happened to be something around to have a few extra split-seconds to grab as I fell, but hardly satisfying.
We were told that I could have an operation to put a pin in my knee. The operation would be extremely painful, extremely costly (insurance companies don't like paying for things they have no by-the-books explanation for), and, since I was going to be growing for a while, would no doubt need to be repeated several times, resulting in several years of therapy but never being able to walk normally. The pin would keep my knee from popping out from under me, although they couldn't guarantee it would keep it from locking in position. It would do nothing to straighten my knee, but after all, that was just cosmetic...right?
In the meantime I often wore a knee brace to provide similar, fall-but-fall-more-slowly support. The knee brace, which I still wear a larger version of today, amounts to a very large, fabric-covered rubber band. Sure, there are knee braces with a lot more structure to them that would be a lot more effective...but those structures assume that your knee is where it is supposed to be. I still don't have the money to have one custom made, and I still haven't convinced an insurance company to help me pay for one.
It's a good thing we couldn't bother with that surgury, even if it had seemed like a good idea, which it didn't eniways. While having a pin stuck through my knee would have temporarily solved the problem of my knee going out from under me, and potentially eased the problem of the joint locking into random positions, the failure to have a knee in a normal shape or location would not have stopped the development of a number of connected problems since.
The first thing to happen was that the bone structure of my foot changed...the arch shifting so that I walked with my weight on the outside edge of my foot...my body's first effort at compensating for the odd direction of my knee. Hellooooo shin splints!! Wear arch support, you say? Wouldn't that be nice. Except arch supports, and shoes with arch support, assume that your arches are in normal places, or at least the same place on both feet. Arch support, for me, generally results in guaranteed, as opposed to only somewhat guaranteed foot cramps. You can assume the same problem every time it occurs to you to suggest something custom-made. Right.
Oh, but normal shin splits are for normal people. I get curvy shin splints. The next thing to happen, you see, was that my shin bone curved, in an attempt to join knee and ankle. Aside from making the support of my knee even more tenuous, and adding to wierd pressure points and balance and such, it mucked with the muscles in my lower leg. Most people have one muscle on either side of their shin. The most common problem faced by these muscles is that sometimes, if, say, a person is an extreme runner, the muscles will over-develop and begin to peel away from the shin. In my case, the muscles never had a chance to develop (let alone overdevelop) properly as I grew, because what they were supposed to develop along with was twisty. So, I've got one muscle that got buried beneith the curved shin, and never developed at all (and has since atrophied to nothing, since it is not in a position to be used by my leg), and one muscle partially on top of the shin.
Last but not least, the wonky reactive development worked its way up to my hip. If I want my leg to go forward instead of diagonally across my body, I have to rotate my hip out. After years of doing this with each step I take...heck, so that I can sit down...my hip does not so much rotate as pop. Actually, it kind of pops when I don't need it to, just because it does it so often. Really, it spontaniously dislocates and relocates...constantly. Ever dislocate something? Painful, right? Now imagine getting so used to it that you barely notice most of the time.
I suffer chronically though not consistantly, and all of this is degenerative. In the past 19 or so years, the degeneration has been frightening, none the less so because those 19 years have only carried me to my late-twenties. Basically, all the bones in my right leg are messed up, and, as a result, most of the cartilage, muscle, tendon, and nerves with them. Overcompensation has put strain on my left leg, and my back, already enjoying a herniated disc and scoliosis (curvature of the spine), does not appreciate the odd positioning and constant jolting either. I suffer from arthritis and tendinitis, as well as siatica (a condition of that lovely nerve that runs from your lower back down each buttock into the back of the thigh) and constant muscle strain and frequent muscle spasm. My mentioned-in-my-I-hate-my-body-rant "whateveritis" might be a condition of the pelvic muscle resulting from the constant strain on that hip. My knee still loves to lock into random positions or go out from under me. I cannot really brace myself on it at all. Ice is a severe problem. I cannot stand or walk for long periods of time, although I have found it is actually a lot more painful to be stuck standing without the ability to move at all (thank you cashiering), and have found upon moving to the MidWest that a lack of hills allows me to walk a fair bit further. I cannot run or jog...when I am so stupid as to "forget" and try, I make it about three steps before hurting myself, if that. I cannot climb stairs, up or down, without pain and far-too-potential injury. I have never been able to ride a bike (you can imagine the fun I have with certain oft-said phrases involving bike riding)..my legs would either smack into each other, nevermind the bar in the middle, or I'd have to cycle with my hip dislocated the entire time and the outside edge of my foot pushing the pedal...something which aught to become excruciating within a few seconds, I'd wager. I have also found it rather difficult to continue efforts related to dancing, martial arts, my swordplay/fencing, or most sports. I have the expected difficulties raising or lowering myself, squatting, or doing anything, really, that usually involves knees. I cannot lift things very well, since I can rely on neither my knees or back. I can't carry weight of any consequence either. When you get right down to it, I can't even sit in one "normal" position for long, because my hip and knee will lock up.
At this point I would need an entire bionic bone structure for my right leg, with perhaps a few repairs/supportive enhancements for the other bits of me that have had to overcompensate. All the real stuff would have to be reattached around it, with the addition of that muscle I don't have for the other side of my shin.
Yeah, like that's gonna happen. I'm still trying to get Disability.
~~~~~~~~~~
So there you have it...for now. As time goes on, there's more. In the meantime, I'm grateful that while I can't drive, I can often still walk (occasionally even without pain). While I can't work a "normal" full-time job, I can still sometimes do my work as an artisan. While I often can barely manage to take care of myself, I've so far managed to take care of my son, and have an amazing husband, who does everything he can to take care of us both. And, I've kept my sense of humor about it all.
Do you want to know something really scary? I post that list, and I catch myself thinking, "God, Rhi...that's so...whiny. I mean, it makes it sound so much worse than it...." But then I stop. No, it doesn't make it sound worse than it is. That IS how it is. I'm used to it, it's a part of me, a part of every minute of my life, and as much as it's always on my mind, always has to be kept in mind, I also don't think about it. But that...all of that...is part of my reality, and the reality of anyone who shares my life, shares time with me.
Want to read other stories? There's a frightening and inspiring thread about it here.
National Invisible Chronic Illness Week!
It would be easy for me to expound/rant upon this concept, but you know what? I just don't have the spoons for that right now. So, intead, I'm just going to copy/paste my "what is wrong with Rhi physically" laundry list behind a cut, and if you're not one of those who has already digested it in the past, then that aught to give you enough to chew on for a little bit. Just think about this -- even if you're one of the few who not only knows the truth, but grasps it...for each of you, there are 20 people who, "Know [I] have something wrong with me, but aren't really sure what"...and for each of those 20, there's 100 who have no idea I go through the generally recognized-as-challenges challenges of life, with anything but perfect health and ability. Let's not even get into the people who assume not only that I don't have any disabilities, but assume I can't have any, because of X, Y, or Z. And then, just think again...there are a lot of people like me out there. Even if you're one of us...you probably don't know about most of the others.
Good e'en...I'm Rhiannon. While not all my disabilities are invisible (if you're paying attention), they don't have big neon signs, either.
I suppose on that account, I should contextualize myself. I'm someone who lives life with the "Spoon Theory", and if you don't know what that is yet, then I'll happily link and explain, because it's a great explanation tool for those with lupus, fibromyalgia, cancer patients, those with arthritis or other chronic disorders that leave one tired and pained all the time. Anyway.
I...don't actually know if I'm legally blind, or not. I'm extremely myopic and astigmatic, so my unaided eyesight amounts to the effect of looking through several sheets of wax paper, into a funhouse mirror, unless something is 2-3 inches from my face. I see smudges of color and vague shapes, and generally judge by that, and motion, my other senses, and physical memory. If I have my glasses but they are slightly crooked (so slightly you can't tell by looking at them on my face), I can see more or less clearly, but the funhouse mirror effect really kicks in, because the angles are all funky on things that otherwise seem clearly defined. So, for example, I'd be unable to walk if I glanced down, because the floor would look to be knee-level on one side, and several yards below my foot, on the other side.
I've got a herniated disk in my back, which also has mild scoliosis. I've got Raynaud's Syndrome, a circulatory disorder of the extremities...which basically means my circulation sucks, everywhere except my torso. That is enough so the case that I can't give blood in the normal fashion, because by the time enough blood got back into my arm, cells would be dying and veins collapsing. At its mildest, my hands are cold and clammy. At its worst, they can be freezing cold to the touch, purple, completely numb and stiff to the elbow. I've got Irritable-Bowel Syndrome, and (mostly food-related, some topical, a few breathing, and a smattering of random) allergies and intolerances up the wazoo. Most of what I can eat is grains and meat (bird and beast). I suffer from migranes, and at times, insomnia. In the past I have had ulcers, and without birth control, I form ovarian cysts with nearly every cycle.
I've also got mitral-valve prolapse, a congenital heart condition where two of the valve-flaps overlap, instead of meeting...I don't actually have the condition severely enough for toxic blood backwash, but I do get a slew of fun symptoms going by "dysautonomia" and "orthostatic intolerance", ranging from vision blackouts to dizziness, a heart murmer, palpitations, breathing problems very similar to asthma, chest pains, and passing out. They are aggravated by physical, mental or emotional stress, and at one point I was on daily medication for them, but the medication lowered my already abnormally low blood pressure, and I was passing out even more often! The heart thing tends to be worse in the heat.
That is of course balanced by the paresthesia (pins & needles / numbness), tendinitis and arthritis and all of that sort of stuff, which is worse in cold or any kind of transitional weather. I've got tendinitis in my wrists, arthritis starting up a bit in my hands, but usually the thing people note me referring to most often, is my leg.
~~~~~~~~~~~~~~~
I am a mutant. While this can be fun to tell kids now and again, that really is the only advantage. I cannot climb any surface, fly any distance, alter the weather reliably or speak clearly in other people's minds with any consistancy. I cannot change color to match my surroundings, teleport, fight with supernatural speed and strength or adopt the form of any living creature. I did not get the ability to heal quickly, stop time, alter my body chemistry at will or develop awe-inspiring beauty or intelligence. I got a wonky knee.
When I was about 9 years old, my right knee just up and started rotating around my leg like the head of the possessed kid in "The Exorcist"...thankfully without spurts of pea soup as accompaniment. For the first few weeks of this development, about the worst I suffered were the confused exclamations of, "Hey...your knee is crooked" from my peers (a statement I would come to really hate, as the years went on). Around one month into the rotation, however, the shifting position of my joint started making itself known in ways beyond those noticed by pointedly staring or quickly averted eyes. My knee, probably about 30º in from my foot at the time, would now, with increasing frequency, do one of two things. It would lock into any random position, or it would spontaniously go out from under me.
Seeing as my knee was now quite obviously unhealthy as well as freaky-looking, and seeing as there are only so many times a person can fall down when they aren't even doing much before it gets highly inconvenient...it was decided that maybe it was time to look into this odd behavior on the part of my leg.
Well, my pediatrician was clueless. But then again, she always was.
The trouble is that there aren't a whole lot of specialists who will see a nine year old without a good explanation...and we didn't really have an explanation for my knee. Finally we managed to get me an appointment with the top knee specialist in the NYC metro area...he wasn't technically supposed to see anyone under 18, but my friend's mother worked in his hospital of affiliation, and personal connection and intrigue won over. At this point I was about three months into the mysterious rotation, at which point it had seemingly (and thankfully had actually) stopped. My right knee now pointed in about 45º, maybe 50º from my foot, basically facing the knee of my left leg, and bumping into it, if my legs were pressed together. The knee was constantly locking up or popping out from under me (and this was hardly due to excess weight...I was underweight until about the age of 17), and I found myself fairly incapable of bracing myself on it enough to, say, walk up or down stairs without falling. I had fallen innumerable times, and was thus generally suffering a sprained ankle and knee even when the knee was otherwise on good behavior.
The top knee guy in NYC was somewhat baffled. He came up with a long, technical name which technically explained what my knee had done, but he was baffled as to why or how it did it. Medicine has three categories which conditions fall into. This issue of my knee was not congenital...I had not been born with it. (I had inherited from my mother the congenital matter of both knees turning in juuuuusst slightly...but that had nothing to do with this rotation of one knee. The disposition towards the development was not inherited...there was no sign of it in anyone else in the family, and the condition itself couldn't really be linked on any basis other than vague connection of appearance.) On the same account, the rotation of my knee could not be considered developmental. Apparently, to be classified as developmental, the medical condition has to progress/develop slowly over time. Rotating 45º around my leg for no apparent reason within the span of 3 months did not qualify. Likewise, the rotation could not be attributed to an injury. It had simply...happened.
"Bone structural mutation" was the best explanation.
Attempting to get a grip on the idea that I went to a doctor to be told that I was a mutant, and yet found myself provided with neither relief or superpowers, 9-year-old me stood up in an effort to lend whatever I was about to say more impact.
It sort of worked. Kinda. In a way. Mr.Man got a look at what my knee looks like when I stand up. See, it's a lot harder to see the severity of the rotation, when I'm sitting down. Angles..shadows..you can tell what's wrong, but it doesn't look as extreme. When I stand up, on the other hand, it becomes rather obvious.
Now. Mr.Man, this top knee guy in NYC, calls in every other available doctor and medical student in the building, to get a look at me. I am suddenly surrounded by men and women poking at my knee, asking repetitive questions in excitied but bewildered voices, scratching notes, and taking polaroids. None of them have ever seen a case as extreme as mine. The closest they came was a photo in the medical journals they studied from in med. school. Wow.
Great. Now not only am I a freak, but I'm a record-setting freak.
I was prescribed a regimen of at-home and, for a few months, in-rehab physical therapy. The hope was that strengthening the muscles around the knee would hold the knee in place, stop any further rotation (which, as noted, had already stopped), and keep the knee well-behaved. All it did was give me mismatched thighs to go with mismatched knees (since all the exercises were done only with one leg), and all the mismatchedly muscled right thigh did for me was let me fall..slower.
Handy in a way, I suppose, if there happened to be something around to have a few extra split-seconds to grab as I fell, but hardly satisfying.
We were told that I could have an operation to put a pin in my knee. The operation would be extremely painful, extremely costly (insurance companies don't like paying for things they have no by-the-books explanation for), and, since I was going to be growing for a while, would no doubt need to be repeated several times, resulting in several years of therapy but never being able to walk normally. The pin would keep my knee from popping out from under me, although they couldn't guarantee it would keep it from locking in position. It would do nothing to straighten my knee, but after all, that was just cosmetic...right?
In the meantime I often wore a knee brace to provide similar, fall-but-fall-more-slowly support. The knee brace, which I still wear a larger version of today, amounts to a very large, fabric-covered rubber band. Sure, there are knee braces with a lot more structure to them that would be a lot more effective...but those structures assume that your knee is where it is supposed to be. I still don't have the money to have one custom made, and I still haven't convinced an insurance company to help me pay for one.
It's a good thing we couldn't bother with that surgury, even if it had seemed like a good idea, which it didn't eniways. While having a pin stuck through my knee would have temporarily solved the problem of my knee going out from under me, and potentially eased the problem of the joint locking into random positions, the failure to have a knee in a normal shape or location would not have stopped the development of a number of connected problems since.
The first thing to happen was that the bone structure of my foot changed...the arch shifting so that I walked with my weight on the outside edge of my foot...my body's first effort at compensating for the odd direction of my knee. Hellooooo shin splints!! Wear arch support, you say? Wouldn't that be nice. Except arch supports, and shoes with arch support, assume that your arches are in normal places, or at least the same place on both feet. Arch support, for me, generally results in guaranteed, as opposed to only somewhat guaranteed foot cramps. You can assume the same problem every time it occurs to you to suggest something custom-made. Right.
Oh, but normal shin splits are for normal people. I get curvy shin splints. The next thing to happen, you see, was that my shin bone curved, in an attempt to join knee and ankle. Aside from making the support of my knee even more tenuous, and adding to wierd pressure points and balance and such, it mucked with the muscles in my lower leg. Most people have one muscle on either side of their shin. The most common problem faced by these muscles is that sometimes, if, say, a person is an extreme runner, the muscles will over-develop and begin to peel away from the shin. In my case, the muscles never had a chance to develop (let alone overdevelop) properly as I grew, because what they were supposed to develop along with was twisty. So, I've got one muscle that got buried beneith the curved shin, and never developed at all (and has since atrophied to nothing, since it is not in a position to be used by my leg), and one muscle partially on top of the shin.
Last but not least, the wonky reactive development worked its way up to my hip. If I want my leg to go forward instead of diagonally across my body, I have to rotate my hip out. After years of doing this with each step I take...heck, so that I can sit down...my hip does not so much rotate as pop. Actually, it kind of pops when I don't need it to, just because it does it so often. Really, it spontaniously dislocates and relocates...constantly. Ever dislocate something? Painful, right? Now imagine getting so used to it that you barely notice most of the time.
I suffer chronically though not consistantly, and all of this is degenerative. In the past 19 or so years, the degeneration has been frightening, none the less so because those 19 years have only carried me to my late-twenties. Basically, all the bones in my right leg are messed up, and, as a result, most of the cartilage, muscle, tendon, and nerves with them. Overcompensation has put strain on my left leg, and my back, already enjoying a herniated disc and scoliosis (curvature of the spine), does not appreciate the odd positioning and constant jolting either. I suffer from arthritis and tendinitis, as well as siatica (a condition of that lovely nerve that runs from your lower back down each buttock into the back of the thigh) and constant muscle strain and frequent muscle spasm. My mentioned-in-my-I-hate-my-body-rant "whateveritis" might be a condition of the pelvic muscle resulting from the constant strain on that hip. My knee still loves to lock into random positions or go out from under me. I cannot really brace myself on it at all. Ice is a severe problem. I cannot stand or walk for long periods of time, although I have found it is actually a lot more painful to be stuck standing without the ability to move at all (thank you cashiering), and have found upon moving to the MidWest that a lack of hills allows me to walk a fair bit further. I cannot run or jog...when I am so stupid as to "forget" and try, I make it about three steps before hurting myself, if that. I cannot climb stairs, up or down, without pain and far-too-potential injury. I have never been able to ride a bike (you can imagine the fun I have with certain oft-said phrases involving bike riding)..my legs would either smack into each other, nevermind the bar in the middle, or I'd have to cycle with my hip dislocated the entire time and the outside edge of my foot pushing the pedal...something which aught to become excruciating within a few seconds, I'd wager. I have also found it rather difficult to continue efforts related to dancing, martial arts, my swordplay/fencing, or most sports. I have the expected difficulties raising or lowering myself, squatting, or doing anything, really, that usually involves knees. I cannot lift things very well, since I can rely on neither my knees or back. I can't carry weight of any consequence either. When you get right down to it, I can't even sit in one "normal" position for long, because my hip and knee will lock up.
At this point I would need an entire bionic bone structure for my right leg, with perhaps a few repairs/supportive enhancements for the other bits of me that have had to overcompensate. All the real stuff would have to be reattached around it, with the addition of that muscle I don't have for the other side of my shin.
Yeah, like that's gonna happen. I'm still trying to get Disability.
~~~~~~~~~~
So there you have it...for now. As time goes on, there's more. In the meantime, I'm grateful that while I can't drive, I can often still walk (occasionally even without pain). While I can't work a "normal" full-time job, I can still sometimes do my work as an artisan. While I often can barely manage to take care of myself, I've so far managed to take care of my son, and have an amazing husband, who does everything he can to take care of us both. And, I've kept my sense of humor about it all.
Do you want to know something really scary? I post that list, and I catch myself thinking, "God, Rhi...that's so...whiny. I mean, it makes it sound so much worse than it...." But then I stop. No, it doesn't make it sound worse than it is. That IS how it is. I'm used to it, it's a part of me, a part of every minute of my life, and as much as it's always on my mind, always has to be kept in mind, I also don't think about it. But that...all of that...is part of my reality, and the reality of anyone who shares my life, shares time with me.
Want to read other stories? There's a frightening and inspiring thread about it here.