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This will not be a blog about my life, or rather, my entire life. That would involve far too many rants and random bits of information. Instead, this blog will (hopefully) be a place in which I can post info, updates and amusing commentary about my health. As I suffer from a not insignificant degree of ‘brain fog’ or mental fuzziness, I find it an exhaustive task to recall whom I’ve told what. Therefore, I've decided it would be exponentially easier to post updates and information here.
I write this blog with the intention that it be read by family and friends, however it is (for now) open to anyone who’s interested in...whatever it is they find here.
It is a frequent fantasy of mine that I was left on Earth by my own species, and that they will one day return for me. However, it seems more likely that I was born to two fairly intelligent humans in the year 1990 A.C. I was blessed (<- sarcasm) with dubious genetic material which has given me blue eyes, frizzy hair of indeterminate brownish color, and a genetic disorder. Oh yes, I'm just that special. I have Ehlers-Danlos Syndrome. In short, my body does not understand how to make collagen, which is a protein our bodies use like Elmer’s glue. Except, you know, mine doesn't because it can't figure out how to make it right. EDS causes fun (<- more sarcasm!) symptoms like chronic pain, frequent dislocation/subluxation of joints, stretchy skin, chronic pain, heart problems, fatigue and oh, did I mention, chronic pain.
There is no cure for EDS.
Treatment is symptomatic (treating symptoms as they appear) and preventative (attempting to prevent injury/illness)
For more information on EDS and its effects I encourage you to visit http://www.ednf.org/ or http://www.mayoclinic.com/health/eh
On to a genneral medical history, because I may or may not make references to it at some future point. Most of you can probably skip this part as it'll likely be of no interest to you.
My first so many years of life were taken up with frequent (meaning, constant) ear and chest (pneumonia) infections. Several sets of ear tubes, a great deal of drama involving hearing loss and collapsing ear drums, lots of testing to find out why my chest looked like I was 80, etc. etc. I eventually got a set of ear tubes that worked and an oral antibiotic that kept my chest clear. Said oral antibiotic accidentally got fed to our dog one time when little six year old me dropped my dinner time pill. My parents called the vet who, once he stopped laughing, told us the same medication was given to dogs and not to worry. The dog was indeed fine.
But I digress.
I developed chronic migraines around age six. For those of you who've never had a migraine it's a fairly torturous experience, regardless of your age. The pain resembles an army of tiny monsters, determinedly jumping up and down inside your skull, while wearing steel toed boots. This creates a pulsing, throbbing pain of remarkable large proportions as well as nausea and sensitive to light/sound/smell. In short, in creates the intense desire to curl up and die.
Since I just couldn't stop with the EDS and migraines, I also developed what has now been diagnosed as Irritable Bowl Syndrome (IBS) but was through the years attributed to stress, acid reflux (which I actually do have as well), imagination, abdominal migraines (I had those for a while too), etc. These 'tummy troubles' come and go. They're aggravated by physical or mental stress, hormones, and certain foods. Mostly it means I suddenly fold up in pain from abdominal cramps, and spend large amounts of time in the bathroom admiring the wallpaper.
There were some interludes with a hematology work up (inconclusive) and on/off sleeping problems. Although the former was particularly traumatic at the time (multiple bleeding times and blood tests seem pretty scary when you’re ten) neither was a major issue. Except for the bleeding everywhere and never sleeping...but anyways.
Despite the above I was a fairly healthy child from birth to thirteen. Mostly. Sort of. Okay, not really, but I wasn't as sick as some kids, and I was happy.
I generally did normal childhood things - I climbed a few trees, ran around the neighborhood, learned to play the violin (sort of) and took up horseback riding. My ankles and knees were fairly weak and my kneecaps dislocated a fair amount (it was common to see me hitting my own knee, in an attempt to push the patella into place), but nothing too disastrous occurred until I was about thirteen.
During the winter of 2003 I injured both rotator cuffs within weeks of each other, each time without any obvious traumatic event. From there on it was just down hill. The migraines and IBS became markedly worse, I developed increasingly problematic fatigue/pain and during that summer I had extreme problems dealing with the heat (passing out is not fun). Sleeping problems became constant and my joints began to (literally) fall apart. This unchecked downward trend continued until roughly 2005 when I realized that maybe the need for a six hour nap after a few hours at the barn was not normal and maaayyyybbbeee this whole EDS thing wasn't as innocuous as I'd assumed (hoped). Much angst ensued. Because people with EDS frequently look pretty healthy at first glance, (some)doctors/friends/family can get the impression that symptoms are being made up for kicks and giggles. Not surprisingly, people with EDS find this Not Amusing. I spent a great deal of time and energy educating myself and my family and even some of my doctors. I was referred to a number of specialists to diagnose and treat various problems associated with EDS as well as the EDS itself.
In the past two years I've been diagnosed with Fibromyalgia, TMJ (my jaw locks shut semi-frequently. Yay for jello and oatmeal), aortic and mitral valve insufficiency (small word version: two of my heart valves leak), postural orthostatic tachycardia syndrome (POTS) (small word version: I fall over if I stand up to fast), sleep apnea and restless leg syndrome. To summarize, in addition to those recent diagnosis’s I also have Ehlers-Danlos Syndrome, migraine headaches, acid reflux (like millions of other people) and Irritable Bowl Syndrome. Just to make life interesting, I also have chronic insomnia and multiple medication sensitivities (meaning, I’m not allergic to them, but I tend to have lots of nasty side effects). There is also some sort of unspecified hematological issue. We don't really know if it's a 'real' bleeding disorder or if it's the EDS messing with clotting times.
In the foreseeable future, I will not be cured. EDS does not go into remission and it is unlikely my other problems will spontaneous disappear (one can hope though). I will likely get worse with age, although how much worse is unknown.
I make no attempt to over (I relize many people are far more ill than myself) or under exaggerate my problems or how I deal with them. I am not a fountain of inspirational strength --- I am a hormonal teenager trying to figure life out while juggling multiple chronic medical conditions. I can (and do) become depressed, withdrawn, anxious or anti-social. Yet I try to smile, even when someone’s jabbing a(nother) needle into my arm and I try to be a generally kind and considerate person. This is the point at which I should write something eloquent and inspiring, but my mind is sort of blank at the moment.
So enough already.
As of this posting I’m 16 years old and live in the eastern United States with my mother, father, older brother, younger brother and two dogs and a horse (who wouldn’t fit in the backyard and thus lives a half hour away). Both of my brothers have EDS and both have migraines and bleeding disorder and the younger one has other medical problems as well. If nothing else, between us kids and my mother (who has EDS, migranes, bleeding problems, and much more) and father (who has migranes) life stays interesting.
I go to school online, as traditional school would be very difficult for me to physical handle and I do reasonably well. I enjoy photography, reading, writing, listening to classical music, attempting to play the violin, watching TV and spending time with my family/friends/dogs/horse.
I love talking to other kids/teens/adults with (or without!) chronic or acute illnesses, doctors and nurses, people who love animals and pretty much anyone who is willing to carry on a reasonably intelligent and civil conversation with me.
:)
I write this blog with the intention that it be read by family and friends, however it is (for now) open to anyone who’s interested in...whatever it is they find here.
It is a frequent fantasy of mine that I was left on Earth by my own species, and that they will one day return for me. However, it seems more likely that I was born to two fairly intelligent humans in the year 1990 A.C. I was blessed (<- sarcasm) with dubious genetic material which has given me blue eyes, frizzy hair of indeterminate brownish color, and a genetic disorder. Oh yes, I'm just that special. I have Ehlers-Danlos Syndrome. In short, my body does not understand how to make collagen, which is a protein our bodies use like Elmer’s glue. Except, you know, mine doesn't because it can't figure out how to make it right. EDS causes fun (<- more sarcasm!) symptoms like chronic pain, frequent dislocation/subluxation of joints, stretchy skin, chronic pain, heart problems, fatigue and oh, did I mention, chronic pain.
There is no cure for EDS.
Treatment is symptomatic (treating symptoms as they appear) and preventative (attempting to prevent injury/illness)
For more information on EDS and its effects I encourage you to visit http://www.ednf.org/ or http://www.mayoclinic.com/health/eh
On to a genneral medical history, because I may or may not make references to it at some future point. Most of you can probably skip this part as it'll likely be of no interest to you.
My first so many years of life were taken up with frequent (meaning, constant) ear and chest (pneumonia) infections. Several sets of ear tubes, a great deal of drama involving hearing loss and collapsing ear drums, lots of testing to find out why my chest looked like I was 80, etc. etc. I eventually got a set of ear tubes that worked and an oral antibiotic that kept my chest clear. Said oral antibiotic accidentally got fed to our dog one time when little six year old me dropped my dinner time pill. My parents called the vet who, once he stopped laughing, told us the same medication was given to dogs and not to worry. The dog was indeed fine.
But I digress.
I developed chronic migraines around age six. For those of you who've never had a migraine it's a fairly torturous experience, regardless of your age. The pain resembles an army of tiny monsters, determinedly jumping up and down inside your skull, while wearing steel toed boots. This creates a pulsing, throbbing pain of remarkable large proportions as well as nausea and sensitive to light/sound/smell. In short, in creates the intense desire to curl up and die.
Since I just couldn't stop with the EDS and migraines, I also developed what has now been diagnosed as Irritable Bowl Syndrome (IBS) but was through the years attributed to stress, acid reflux (which I actually do have as well), imagination, abdominal migraines (I had those for a while too), etc. These 'tummy troubles' come and go. They're aggravated by physical or mental stress, hormones, and certain foods. Mostly it means I suddenly fold up in pain from abdominal cramps, and spend large amounts of time in the bathroom admiring the wallpaper.
There were some interludes with a hematology work up (inconclusive) and on/off sleeping problems. Although the former was particularly traumatic at the time (multiple bleeding times and blood tests seem pretty scary when you’re ten) neither was a major issue. Except for the bleeding everywhere and never sleeping...but anyways.
Despite the above I was a fairly healthy child from birth to thirteen. Mostly. Sort of. Okay, not really, but I wasn't as sick as some kids, and I was happy.
I generally did normal childhood things - I climbed a few trees, ran around the neighborhood, learned to play the violin (sort of) and took up horseback riding. My ankles and knees were fairly weak and my kneecaps dislocated a fair amount (it was common to see me hitting my own knee, in an attempt to push the patella into place), but nothing too disastrous occurred until I was about thirteen.
During the winter of 2003 I injured both rotator cuffs within weeks of each other, each time without any obvious traumatic event. From there on it was just down hill. The migraines and IBS became markedly worse, I developed increasingly problematic fatigue/pain and during that summer I had extreme problems dealing with the heat (passing out is not fun). Sleeping problems became constant and my joints began to (literally) fall apart. This unchecked downward trend continued until roughly 2005 when I realized that maybe the need for a six hour nap after a few hours at the barn was not normal and maaayyyybbbeee this whole EDS thing wasn't as innocuous as I'd assumed (hoped). Much angst ensued. Because people with EDS frequently look pretty healthy at first glance, (some)doctors/friends/family can get the impression that symptoms are being made up for kicks and giggles. Not surprisingly, people with EDS find this Not Amusing. I spent a great deal of time and energy educating myself and my family and even some of my doctors. I was referred to a number of specialists to diagnose and treat various problems associated with EDS as well as the EDS itself.
In the past two years I've been diagnosed with Fibromyalgia, TMJ (my jaw locks shut semi-frequently. Yay for jello and oatmeal), aortic and mitral valve insufficiency (small word version: two of my heart valves leak), postural orthostatic tachycardia syndrome (POTS) (small word version: I fall over if I stand up to fast), sleep apnea and restless leg syndrome. To summarize, in addition to those recent diagnosis’s I also have Ehlers-Danlos Syndrome, migraine headaches, acid reflux (like millions of other people) and Irritable Bowl Syndrome. Just to make life interesting, I also have chronic insomnia and multiple medication sensitivities (meaning, I’m not allergic to them, but I tend to have lots of nasty side effects). There is also some sort of unspecified hematological issue. We don't really know if it's a 'real' bleeding disorder or if it's the EDS messing with clotting times.
In the foreseeable future, I will not be cured. EDS does not go into remission and it is unlikely my other problems will spontaneous disappear (one can hope though). I will likely get worse with age, although how much worse is unknown.
I make no attempt to over (I relize many people are far more ill than myself) or under exaggerate my problems or how I deal with them. I am not a fountain of inspirational strength --- I am a hormonal teenager trying to figure life out while juggling multiple chronic medical conditions. I can (and do) become depressed, withdrawn, anxious or anti-social. Yet I try to smile, even when someone’s jabbing a(nother) needle into my arm and I try to be a generally kind and considerate person. This is the point at which I should write something eloquent and inspiring, but my mind is sort of blank at the moment.
So enough already.
As of this posting I’m 16 years old and live in the eastern United States with my mother, father, older brother, younger brother and two dogs and a horse (who wouldn’t fit in the backyard and thus lives a half hour away). Both of my brothers have EDS and both have migraines and bleeding disorder and the younger one has other medical problems as well. If nothing else, between us kids and my mother (who has EDS, migranes, bleeding problems, and much more) and father (who has migranes) life stays interesting.
I go to school online, as traditional school would be very difficult for me to physical handle and I do reasonably well. I enjoy photography, reading, writing, listening to classical music, attempting to play the violin, watching TV and spending time with my family/friends/dogs/horse.
I love talking to other kids/teens/adults with (or without!) chronic or acute illnesses, doctors and nurses, people who love animals and pretty much anyone who is willing to carry on a reasonably intelligent and civil conversation with me.
:)
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