"You know girls this age..."
Health care in our country (and elsewhere as well) is pitiful. I do not think it is all bad or ineffective, but overall I would have to say it leaves a lot for wanting.
Note: I've come back to the beginning to give this warning. I don't have a plan for this blog...I am writing wherever it takes me. It may become a series of blogs, as I have a lot to say that I can't even begin to cover in one night.
As previously mentioned, I was injured at the tender age of 12 due to the negligence of a grocery store and poorly designed freezer. The result of that injury is a lifelong illness, one that may possibly disable me completely someday. One that paralyzes me from the sheer, agonizing pain it entails.
Medicine, both Eastern and Western, failed me throughout the years. The health care and insurance companies failed my family. Insurance is more about profit for those companies than for the benefit of its policyholders. My mother took me to every doctor she could to find out what was wrong with me.
Imagine after such an unusual injury that your child had a horrible headache (the first of many) instantly. And the pain continued. In fact, it escalated from day 1 to day 2. It spread like wildfire in just a year. Imagine on a hot July night that your 12-year-old daughter couldn't stand the slightest breeze or air from a fan hitting her because it caused her such pain. That was my mother's (and family's life) the summer of 1996. My mother took me to a general practitioner, who prescribed silvadine salve and Tylenol 3 (haha) for the pain. Things didn't get better. She then had to take me back to the GP to have the blisters lacerated from the four fingertips of my left hand. The blisters were so bad, they wouldn't pop on their own, even after being there days and days. In fact, they seemed to continue to fill with fluid, which was extremely painful. When those blisters were lacerated (the thought of which makes me nauseous), it left behind deep gouges in my fingers. It looked like an animal had taken bites out of my fingers. When the pain continued, I was referred to a hand specialist. The hand specialist referred me for physical therapy. Finally, my mom asked the physical therapist, Todd, "Is there a name for what is wrong with my daughter?" This began her quest to learn more about Reflex Sympathetic Dystrophy.
Once, the GP told my mother, "You know girls this age," when my mom expressed her pure frustration and desperation that I was still in such agony. 'Girls this age?' What ever does that mean? I was menstrual and just being bitchy?
The physical therapy continued, but my career as a violinist did not. I had a full-ride scholarship for private lessons with a violin professor at a prestigious (read: expensive) private college. My beginning violin instructor saw such promise in me that she initiated the process of getting me the scholarship. I could no longer even handle picking up my violin, let alone play it. I went from playing second chair at the age of 12 in a junior symphony (not just your typical school symphony, but rather a select group) and taking lessons and practicing daily to not being able to do a thing with the instrument that held such joy and passion for me. As I write this, I realize I've never really properly mourned that loss. That was me. I played. I played hours and hours a week. My life revolved around practice and class and performances. That was stolen from me.
My family racked up so much debt in such a short time, as my mom would not stop or give up on me, no matter what bullshit the doctors fed her. I continued from doctor to doctor, specialist to specialist. In the span of a few years, I actually went through 7 rounds of physical therapy. We're not talking 7 sessions. We're talking 7 spans of time where I went for a prescribed amount of time. Hours and hours. I did warm water therapy, I went to a shrink to deal with the emotional problems that come with RSD and getting a lifelong illness at such a young age. I had a block, called a bayer block (I believe) done, where they put me under anesthesia, drained the blood from my arm, and pumped me full of drugs. My mom fainted from the smell of the drugs the one time I had it done. I had multiple stellate ganglion nerve blocks done while under anesthesia. I had to take a pregnancy test before each one. Unreal, that I as a 12 year old experiencing the struggle to want to stay alive, was being forced to pee on a stick weekly when I hadn't even had my first kiss yet. My favorite part of that procedure was going under, the one time I actually got sleep and a warm blanket as I came to in that horrible time of my life.
Let me just get off track for a moment to say RSD is a horribly painful disease. People don't understand how you could look so normal, yet be so sick. Doctors refuse to look at a "normal" person and believe that they are sick. It must be in their head. RSD patients have been told this for years and years and years. When looking at the Mcgill pain index the pain of RSD (which has formerly been known as causalgia, meaning "burning pain") ranks a 42 on a scale of 1-50, whereas cancer is ranked at 28. (I am by no means saying cancer is easy or painless, but this is just to make a point about how bad RSD really is). Another interesting fact: "It is estimated that between 1.5 and 6 million people have RSD in the United States; using the lowest statistic, that exceeds the combined total that have HIV/AIDS, breast cancer and Multiple Sclerosis." forgrace.org
I guess this is where I have to say that medicine fails. We hear about cancer research, AIDS/HIV advances, and developments in MS studies/drug trials. There is minimal progress/studies/advances for the 1.5-6 million people like myself. I am lucky that my family and I found a doctor who, literally, saved my life. In the two years of my illness that it took to find Dr. Hooshang Hooshmand (my miracle from God, no doubt), I considered on several occasions taking my own life because of the anguish it was causing my family emotionally and financially, as well as the daily struggle I had to just survive another day.
Doctors told my mom many different (horrible) solutions to my problem. She was told to have me undergo a chemical sympathectomy (Dr. Hooshmand explains why it is such a bad idea for RSD patients). She stood up for me. She advocated for me when there was nobody in the medical world advocating for me. After a week of many painful and at times barbaric tests, the great Mayo Clinic in Rochester, Illinois, basically confirmed my diagnosis of RSD, upped the dosage of nortriptyline I was taking, and told my family that it would "burn itself out in about 6 months."
We fail people in this country with many different illnesses while profiting off them. Many doctors mean well and do well, but I find that the number of bad ones in my lifetime has outweighed the good ones. And I'm not even speaking of just my experience with doctors for my RSD, but I won't take this train any further down the tracks for now. We fail people with the care they receive at the end of their lives as well (another blog for another day).
I guess I just have a lot to say, a story to tell. Perhaps this is the time to begin...one blog at a time.
Note: I've come back to the beginning to give this warning. I don't have a plan for this blog...I am writing wherever it takes me. It may become a series of blogs, as I have a lot to say that I can't even begin to cover in one night.
As previously mentioned, I was injured at the tender age of 12 due to the negligence of a grocery store and poorly designed freezer. The result of that injury is a lifelong illness, one that may possibly disable me completely someday. One that paralyzes me from the sheer, agonizing pain it entails.
Medicine, both Eastern and Western, failed me throughout the years. The health care and insurance companies failed my family. Insurance is more about profit for those companies than for the benefit of its policyholders. My mother took me to every doctor she could to find out what was wrong with me.
Imagine after such an unusual injury that your child had a horrible headache (the first of many) instantly. And the pain continued. In fact, it escalated from day 1 to day 2. It spread like wildfire in just a year. Imagine on a hot July night that your 12-year-old daughter couldn't stand the slightest breeze or air from a fan hitting her because it caused her such pain. That was my mother's (and family's life) the summer of 1996. My mother took me to a general practitioner, who prescribed silvadine salve and Tylenol 3 (haha) for the pain. Things didn't get better. She then had to take me back to the GP to have the blisters lacerated from the four fingertips of my left hand. The blisters were so bad, they wouldn't pop on their own, even after being there days and days. In fact, they seemed to continue to fill with fluid, which was extremely painful. When those blisters were lacerated (the thought of which makes me nauseous), it left behind deep gouges in my fingers. It looked like an animal had taken bites out of my fingers. When the pain continued, I was referred to a hand specialist. The hand specialist referred me for physical therapy. Finally, my mom asked the physical therapist, Todd, "Is there a name for what is wrong with my daughter?" This began her quest to learn more about Reflex Sympathetic Dystrophy.
Once, the GP told my mother, "You know girls this age," when my mom expressed her pure frustration and desperation that I was still in such agony. 'Girls this age?' What ever does that mean? I was menstrual and just being bitchy?
The physical therapy continued, but my career as a violinist did not. I had a full-ride scholarship for private lessons with a violin professor at a prestigious (read: expensive) private college. My beginning violin instructor saw such promise in me that she initiated the process of getting me the scholarship. I could no longer even handle picking up my violin, let alone play it. I went from playing second chair at the age of 12 in a junior symphony (not just your typical school symphony, but rather a select group) and taking lessons and practicing daily to not being able to do a thing with the instrument that held such joy and passion for me. As I write this, I realize I've never really properly mourned that loss. That was me. I played. I played hours and hours a week. My life revolved around practice and class and performances. That was stolen from me.
My family racked up so much debt in such a short time, as my mom would not stop or give up on me, no matter what bullshit the doctors fed her. I continued from doctor to doctor, specialist to specialist. In the span of a few years, I actually went through 7 rounds of physical therapy. We're not talking 7 sessions. We're talking 7 spans of time where I went for a prescribed amount of time. Hours and hours. I did warm water therapy, I went to a shrink to deal with the emotional problems that come with RSD and getting a lifelong illness at such a young age. I had a block, called a bayer block (I believe) done, where they put me under anesthesia, drained the blood from my arm, and pumped me full of drugs. My mom fainted from the smell of the drugs the one time I had it done. I had multiple stellate ganglion nerve blocks done while under anesthesia. I had to take a pregnancy test before each one. Unreal, that I as a 12 year old experiencing the struggle to want to stay alive, was being forced to pee on a stick weekly when I hadn't even had my first kiss yet. My favorite part of that procedure was going under, the one time I actually got sleep and a warm blanket as I came to in that horrible time of my life.
Let me just get off track for a moment to say RSD is a horribly painful disease. People don't understand how you could look so normal, yet be so sick. Doctors refuse to look at a "normal" person and believe that they are sick. It must be in their head. RSD patients have been told this for years and years and years. When looking at the Mcgill pain index the pain of RSD (which has formerly been known as causalgia, meaning "burning pain") ranks a 42 on a scale of 1-50, whereas cancer is ranked at 28. (I am by no means saying cancer is easy or painless, but this is just to make a point about how bad RSD really is). Another interesting fact: "It is estimated that between 1.5 and 6 million people have RSD in the United States; using the lowest statistic, that exceeds the combined total that have HIV/AIDS, breast cancer and Multiple Sclerosis." forgrace.org
I guess this is where I have to say that medicine fails. We hear about cancer research, AIDS/HIV advances, and developments in MS studies/drug trials. There is minimal progress/studies/advances for the 1.5-6 million people like myself. I am lucky that my family and I found a doctor who, literally, saved my life. In the two years of my illness that it took to find Dr. Hooshang Hooshmand (my miracle from God, no doubt), I considered on several occasions taking my own life because of the anguish it was causing my family emotionally and financially, as well as the daily struggle I had to just survive another day.
Doctors told my mom many different (horrible) solutions to my problem. She was told to have me undergo a chemical sympathectomy (Dr. Hooshmand explains why it is such a bad idea for RSD patients). She stood up for me. She advocated for me when there was nobody in the medical world advocating for me. After a week of many painful and at times barbaric tests, the great Mayo Clinic in Rochester, Illinois, basically confirmed my diagnosis of RSD, upped the dosage of nortriptyline I was taking, and told my family that it would "burn itself out in about 6 months."
We fail people in this country with many different illnesses while profiting off them. Many doctors mean well and do well, but I find that the number of bad ones in my lifetime has outweighed the good ones. And I'm not even speaking of just my experience with doctors for my RSD, but I won't take this train any further down the tracks for now. We fail people with the care they receive at the end of their lives as well (another blog for another day).
I guess I just have a lot to say, a story to tell. Perhaps this is the time to begin...one blog at a time.
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