My Journey
Your teenage years are supposed to be some of the best times of your life. Teens are young, strong, and have so much in store for their future. Sadly, for me, my teenage years have been pretty crappy. When most young adults have a problem, it's normally social. My problems go far beyond the average social issues.
I was a dancer for twelve years, starting at the age of three. I loved it more than anything in the world. I always used to dream that I would grow up and become a Rockette. I think the reason I loved dance so much is because it was one of the few things I was good at. Everyone enjoys doing things they're good at- it's a good self-esteem booster. I was the most flexible kid in my class. I could do splits, and bend backward, and do a bunch of crazy bendy things without even having to stretch or warm up like the other kids. My arms and legs hyper extended further than everyone else's. I was double jointed and it was awesome.
Around the age of eleven or twelve, I slowly became more and more uncoordinated, which is a skill that's vital for a dancer to have. I would fall, run into things, and trip over myself. Everyone just laughed it off. When I was thirteen years old, one of my routines required to hoist myself over a chair and flip upside down. I was able to do this easily for a while, until one day I lost my balance and fell. I didn't think much of it, so I just got up and kept dancing.
That night as I was getting ready for bed, I bent over to pick something up and my back gave out. After a few days of complaining of back pain, my mother took me to the doctor. We found I had sciatica, and was written a script for Physical Therapy. This issue subsided after a while of exercising and strengthening.
The next year I noticed my hands would randomly start turning red and burn. The pain became almost unbearable, so my mother took me to see a rheumatologist. She diagnosed me with a rare condition called Erythromelalgia. This is a disease which primarily affects the blood vessels. The blood in my body pools to the hands, feet, nose, and ears causing these areas to become extremely hot. Erythromelalgia is a common condition that is associated with an underlying disorder such as autoimmune disease.
Around this time, I was also having a lot of ringing in my right ear. I thought it was just allergies, but it ended up being a symptom of a mixed, fluctuating hearing loss. The cause of this hearing loss was unknown, because my cochlea was moving fine, and there wasn't anything seriously wrong with my eardrums. So we bounced from ENT to ENT. The doctors that I saw for this hearing loss were some of the rudest, and most arrogant doctors I have ever seen in my whole life. One doctor in particular is the reason I doubt the very real and serious issues I have today.
After some unsuccessful appointments with my first ENT, we saw a highly rated doctor at our local hospital. He seemed very sharp and knowledgeable. He sent me for a few tests that I was sure would be positive for some sort of hearing problem. At the follow up appointment, he gave me news that I never thought I would hear come from a doctor's mouth. He told me that my hearing loss was psychosomatic. Psychosomania is basically mental disorder where you go through an extremely extensive panic attack, convincing yourself you are disabled. He told me that I needed to get a good psychiatrist, and be put on antidepressants. I came out of that appointment sobbing. I just remember thinking to myself, "how could a medical professional be so ignorant to not only call me crazy, but speak to me so harshly without any regards to my feelings?" We didn't give up on this search for answers, so my mother made an appointment for a top-notch doctor in Boston.
This doctor in Boston was so kind and thoughtful. His bedside manner was better than any doctor I had ever seen. He was thorough and took his time with us. When it came to the end of the appointment, my family was taken by surprise. He told us the same exact thing the other doctor did- my condition was psychosomatic- only he was much more kind. So with that, we gave up on my search for answers to my hearing loss. Not because we didn't think my hearing loss wasn't important, but because some much more concerning matters rose to the table.
When I was a sophomore, I joined the fall show at my high school. Acting and preforming has always been one of my many passions. During our final week of rehearsals, I began feeling sick. I thought it was only that I was busy and tired, but once the show had ended and the craziness began to wind down, I still wasn't better. In fact, I felt worse than I did before. This is when the researching, doctors visits, and serious pain started to settle in.
We went to see the same rheumatologist that diagnosed me with Erythromelalgia. What. A. Nightmare!! I saw her a total of four times, and each time she acted anything but professional. In my last appointment with her, she spent around 15 minutes in the room with me. The entire time was spent talking about her new certification in integrative medicine. I went into the appointment with aching joints and terrible fatigue, and left with a bottle of essential oils, a recommendation to get reiki, and 500mg of naproxen. Not exactly what we were looking for.
After around a month of taking the naproxen, I was feeling worse and worse. At this point, my mother was starting to think I could have lupus, because my joints were hot and swollen. Because of this and the fatigue, I was bed ridden. She has lupus, so there's a greater chance that I could have the disease. We were told by the rheumatologist at our last appointment that I "couldn't possibly have lupus" because my joints weren't hot and swollen. Since this had changed, my mother called her office. After a ton of hassle from everyone, I was told by the doctor that my issue wasn't rheumatological, and that I had a virus that was causing my joint problems. She also prescribed me with 7.5mg of Meloxicam- a drug for arthritis and non-viral joint issues. Contradictory much?
I ended up going to the pediatrician, who told me that I didn't have a virus. So we made an appointment with a rheumatologist at Columbia Presbyterian Hospital. Since at this point we were convinced that I had lupus, Deana, one of the heads of the lupus alliance in my area offered to take us to New York City for this appointment, since her doctor was in the building across from ours. So off we went to New York City. I have to say, it was one of the best doctors appointments I've ever had. I came out of his office with a joint hypermobility syndrome, and fibromyalgia (secondary to autoimmune disease) diagnosis. At the time we totally disregarded my joint hypermobility diagnosis, only because we didn't think it could possibly be the cause to all of my problems. This doctor told us that because he thought I had autoimmune disease, that I needed to get a doctor that was much closer to us. He suggested going to Strong Hospital in Rochester. So we went.
At the time of my appointment in Rochester, I was at a very low point. I was not only experiencing joint pain, fatigue, and widespread pain, but also hair loss, mouth ulcers, dizziness, and a whole slue of other symptoms. This rheumatologist was quick and to the point with me. She told me I didn't have fibromyalgia, but something called Reflex Neurovascular Dystrophy (a widespread CRPS). She also told me that I didn't have autoimmune disease (which seriously angered me), but that there was a possibility that I could have either Marfan Syndrome, or Ehlers Danlos Synrome. She thought these things because I am very hypermobile, and the palette in my mouth is much higher than most people's. She didn't go into much detail about it those two conditions, but did really make a big deal about the Reflex Neurovascular Dystrophy. She said that this was what was affecting me the most, and that I needed to go through a new program that the hospital started for patients like me. My mother came out of the appointment beaming, because someone was finally trying to help me, but I on the other hand was skeptical and quite upset about the whole situation.
Two weeks later, we started making the two hour trip to Rochester twice a week for this amplified pain program. The program consisted of intense physical therapy and occupational therapy to desensitize my nerves. The occupational therapy did amazing things for me, but the physical therapy was a nightmare. She had me do exercises that were damaging my joints, making me feel sick (which they claimed would help me in the long run), and disregarded some serious issues that were happening.
My mother and I began researching this Ehlers Danlos Syndrome, since my rheumatologist said I could possibly have it. At first, we were skeptical of me possibly having the condition. But as time went on, more symptoms kept popping up, and more research had been done by my mother and I. After the Amplified Pain program had ended, I was a mess. My joints had started dislocating and subluxating, I wasn't (am still am not) getting any sleep, and I was starting to get allergic reactions to random chemicals and foods. I wasn't well at all, and my mother and I had both come to the realization that I in fact, had Ehlers Danlos Syndrome. It was just a matter of figuring out who could diagnose me.
My mom joined a support group on facebook for people who have EDS, and met some amazing people with teens my age. One woman who has a child with EDS told us to see a pain specialist in Rhode Island named Dr. Pradeep Chopra. This is the man who changed everything for me. I had an appointment set up with him for January of 2017 for a 4 hour consultation. Although he isn't a geneticist, he takes special interest in people who have EDS, Dysautonomia, and other odd conditions, and is qualified to make an EDS diagnosis (as well as many other conditions).
So we finally took the trip to Rhode Island, and I got to see Dr. Chopra. He ended up diagnosing me with EDS, Dysautonomia/POTS, Mast Cell Activation Syndrome, and a few other small conditions. After years of being tossed around by doctors and being treated like a joke, I was able to be diagnosed with 6 conditions, develop a treatment plan, and be listened to by a decent human being in a matter of 5 hours. It just blows my mind.
Around three months after these new diagnosis', I received yet a new one (as if I need another diagnosis). This one helped put things in perspective for me, as I've been struggling with the reality of all of my medical complications. Since we've suspected I have lupus for a few years, we decided to see a new rheumatologist. We thought she would be a fresh start from the others, since they've mostly done me wrong. This doctor was smart, and straight to the point. She examined and questioned me, only to come to the conclusion that I have lupus.
Although I'm not even close to being in remission at this point, I know that it's possible. Someday, I'll be able to walk in the mall without crying from the pain. I'll be able to march in our local town's parade without needing a wheelchair, and I'll be able to get out of bed without blacking out. Things will get better. I know they will.
xoxo
I was a dancer for twelve years, starting at the age of three. I loved it more than anything in the world. I always used to dream that I would grow up and become a Rockette. I think the reason I loved dance so much is because it was one of the few things I was good at. Everyone enjoys doing things they're good at- it's a good self-esteem booster. I was the most flexible kid in my class. I could do splits, and bend backward, and do a bunch of crazy bendy things without even having to stretch or warm up like the other kids. My arms and legs hyper extended further than everyone else's. I was double jointed and it was awesome.
Around the age of eleven or twelve, I slowly became more and more uncoordinated, which is a skill that's vital for a dancer to have. I would fall, run into things, and trip over myself. Everyone just laughed it off. When I was thirteen years old, one of my routines required to hoist myself over a chair and flip upside down. I was able to do this easily for a while, until one day I lost my balance and fell. I didn't think much of it, so I just got up and kept dancing.
That night as I was getting ready for bed, I bent over to pick something up and my back gave out. After a few days of complaining of back pain, my mother took me to the doctor. We found I had sciatica, and was written a script for Physical Therapy. This issue subsided after a while of exercising and strengthening.
The next year I noticed my hands would randomly start turning red and burn. The pain became almost unbearable, so my mother took me to see a rheumatologist. She diagnosed me with a rare condition called Erythromelalgia. This is a disease which primarily affects the blood vessels. The blood in my body pools to the hands, feet, nose, and ears causing these areas to become extremely hot. Erythromelalgia is a common condition that is associated with an underlying disorder such as autoimmune disease.
Around this time, I was also having a lot of ringing in my right ear. I thought it was just allergies, but it ended up being a symptom of a mixed, fluctuating hearing loss. The cause of this hearing loss was unknown, because my cochlea was moving fine, and there wasn't anything seriously wrong with my eardrums. So we bounced from ENT to ENT. The doctors that I saw for this hearing loss were some of the rudest, and most arrogant doctors I have ever seen in my whole life. One doctor in particular is the reason I doubt the very real and serious issues I have today.
After some unsuccessful appointments with my first ENT, we saw a highly rated doctor at our local hospital. He seemed very sharp and knowledgeable. He sent me for a few tests that I was sure would be positive for some sort of hearing problem. At the follow up appointment, he gave me news that I never thought I would hear come from a doctor's mouth. He told me that my hearing loss was psychosomatic. Psychosomania is basically mental disorder where you go through an extremely extensive panic attack, convincing yourself you are disabled. He told me that I needed to get a good psychiatrist, and be put on antidepressants. I came out of that appointment sobbing. I just remember thinking to myself, "how could a medical professional be so ignorant to not only call me crazy, but speak to me so harshly without any regards to my feelings?" We didn't give up on this search for answers, so my mother made an appointment for a top-notch doctor in Boston.
This doctor in Boston was so kind and thoughtful. His bedside manner was better than any doctor I had ever seen. He was thorough and took his time with us. When it came to the end of the appointment, my family was taken by surprise. He told us the same exact thing the other doctor did- my condition was psychosomatic- only he was much more kind. So with that, we gave up on my search for answers to my hearing loss. Not because we didn't think my hearing loss wasn't important, but because some much more concerning matters rose to the table.
When I was a sophomore, I joined the fall show at my high school. Acting and preforming has always been one of my many passions. During our final week of rehearsals, I began feeling sick. I thought it was only that I was busy and tired, but once the show had ended and the craziness began to wind down, I still wasn't better. In fact, I felt worse than I did before. This is when the researching, doctors visits, and serious pain started to settle in.
We went to see the same rheumatologist that diagnosed me with Erythromelalgia. What. A. Nightmare!! I saw her a total of four times, and each time she acted anything but professional. In my last appointment with her, she spent around 15 minutes in the room with me. The entire time was spent talking about her new certification in integrative medicine. I went into the appointment with aching joints and terrible fatigue, and left with a bottle of essential oils, a recommendation to get reiki, and 500mg of naproxen. Not exactly what we were looking for.
After around a month of taking the naproxen, I was feeling worse and worse. At this point, my mother was starting to think I could have lupus, because my joints were hot and swollen. Because of this and the fatigue, I was bed ridden. She has lupus, so there's a greater chance that I could have the disease. We were told by the rheumatologist at our last appointment that I "couldn't possibly have lupus" because my joints weren't hot and swollen. Since this had changed, my mother called her office. After a ton of hassle from everyone, I was told by the doctor that my issue wasn't rheumatological, and that I had a virus that was causing my joint problems. She also prescribed me with 7.5mg of Meloxicam- a drug for arthritis and non-viral joint issues. Contradictory much?
I ended up going to the pediatrician, who told me that I didn't have a virus. So we made an appointment with a rheumatologist at Columbia Presbyterian Hospital. Since at this point we were convinced that I had lupus, Deana, one of the heads of the lupus alliance in my area offered to take us to New York City for this appointment, since her doctor was in the building across from ours. So off we went to New York City. I have to say, it was one of the best doctors appointments I've ever had. I came out of his office with a joint hypermobility syndrome, and fibromyalgia (secondary to autoimmune disease) diagnosis. At the time we totally disregarded my joint hypermobility diagnosis, only because we didn't think it could possibly be the cause to all of my problems. This doctor told us that because he thought I had autoimmune disease, that I needed to get a doctor that was much closer to us. He suggested going to Strong Hospital in Rochester. So we went.
At the time of my appointment in Rochester, I was at a very low point. I was not only experiencing joint pain, fatigue, and widespread pain, but also hair loss, mouth ulcers, dizziness, and a whole slue of other symptoms. This rheumatologist was quick and to the point with me. She told me I didn't have fibromyalgia, but something called Reflex Neurovascular Dystrophy (a widespread CRPS). She also told me that I didn't have autoimmune disease (which seriously angered me), but that there was a possibility that I could have either Marfan Syndrome, or Ehlers Danlos Synrome. She thought these things because I am very hypermobile, and the palette in my mouth is much higher than most people's. She didn't go into much detail about it those two conditions, but did really make a big deal about the Reflex Neurovascular Dystrophy. She said that this was what was affecting me the most, and that I needed to go through a new program that the hospital started for patients like me. My mother came out of the appointment beaming, because someone was finally trying to help me, but I on the other hand was skeptical and quite upset about the whole situation.
Two weeks later, we started making the two hour trip to Rochester twice a week for this amplified pain program. The program consisted of intense physical therapy and occupational therapy to desensitize my nerves. The occupational therapy did amazing things for me, but the physical therapy was a nightmare. She had me do exercises that were damaging my joints, making me feel sick (which they claimed would help me in the long run), and disregarded some serious issues that were happening.
My mother and I began researching this Ehlers Danlos Syndrome, since my rheumatologist said I could possibly have it. At first, we were skeptical of me possibly having the condition. But as time went on, more symptoms kept popping up, and more research had been done by my mother and I. After the Amplified Pain program had ended, I was a mess. My joints had started dislocating and subluxating, I wasn't (am still am not) getting any sleep, and I was starting to get allergic reactions to random chemicals and foods. I wasn't well at all, and my mother and I had both come to the realization that I in fact, had Ehlers Danlos Syndrome. It was just a matter of figuring out who could diagnose me.
My mom joined a support group on facebook for people who have EDS, and met some amazing people with teens my age. One woman who has a child with EDS told us to see a pain specialist in Rhode Island named Dr. Pradeep Chopra. This is the man who changed everything for me. I had an appointment set up with him for January of 2017 for a 4 hour consultation. Although he isn't a geneticist, he takes special interest in people who have EDS, Dysautonomia, and other odd conditions, and is qualified to make an EDS diagnosis (as well as many other conditions).
So we finally took the trip to Rhode Island, and I got to see Dr. Chopra. He ended up diagnosing me with EDS, Dysautonomia/POTS, Mast Cell Activation Syndrome, and a few other small conditions. After years of being tossed around by doctors and being treated like a joke, I was able to be diagnosed with 6 conditions, develop a treatment plan, and be listened to by a decent human being in a matter of 5 hours. It just blows my mind.
Around three months after these new diagnosis', I received yet a new one (as if I need another diagnosis). This one helped put things in perspective for me, as I've been struggling with the reality of all of my medical complications. Since we've suspected I have lupus for a few years, we decided to see a new rheumatologist. We thought she would be a fresh start from the others, since they've mostly done me wrong. This doctor was smart, and straight to the point. She examined and questioned me, only to come to the conclusion that I have lupus.
Although I'm not even close to being in remission at this point, I know that it's possible. Someday, I'll be able to walk in the mall without crying from the pain. I'll be able to march in our local town's parade without needing a wheelchair, and I'll be able to get out of bed without blacking out. Things will get better. I know they will.
xoxo