If I were to describe what POTS does to me, without you knowing that I graduated from high school within the last 5 years, you might come to the conclusion that I am an elderly woman...
This is because:
- I forget what day it is. I forget names and places. I repeat the same story over and over again. And, I forget where I parked the car.
- I practically live at the doctors. The doctors and nurses know me by name without looking at my chart. Even some of the other staff recognize me. There was a point in time when I was going to get blood work and other tests done so often that I saw the same faces in the waiting room time and time again.
- I have a medication tote, not a box or a container, because I have to take so many medications. I have a dose box that has the days of the week spelled out and has separate boxes for the morning, afternoon, evening, and night.
- It takes me a lot while to get out of bed in the mornings and I can't do strenuous activities because of joint and muscle pains and I become winded easily.
- I have very weak muscles and have been to physical therapy to strengthen my muscles and joints. I had also done physical therapy activities in the warm and shallow pool when older ladies had their water aerobics class.
- I do not have a strong immune system so I have to get the flu shot every year.
- I own compression socks and have worn them countless times. Not exactly the hottest style, but it did give me some relief in the past.
**Please excuse my silliness if I offended anyone with this post. My only intention is to help people understand the effects of POTS.**
Tuesday, May 31, 2011
Hot Weather and POTS
It's summer. It gets really hot outside. Sometimes very humid. Since POTS mainly has to do with the body's inability to open and close its blood vessels like it should, hot weather makes it even more difficult. When it's hot and humid outside, a normal person's blood vessels relax a little more than usual. On the other hand, when it's cold outside, a normal person's blood vessels close a little more than usual to move the blood fast in the body.
Well, with POTS, my blood vessels are already too "relaxed" so they are even worse with the hot weather. This makes it difficult for the blood to come back up from my extremities, meaning there is pooling of blood in my extremities and not enough blood getting to my muscles and my brain. This can cause more pains throughout my body where there is a lack of blood. My body is screaming to have the blood, so this is the cause of the pain. I get headaches and can get very dizzy/lightheaded and experience a lot of brain fogginess because my brain doesn't have enough blood either.
Every symptom I experience is exaggerated with the hot weather, especially when it's really humid outside. I take a lot of deep breaths because my body needs more oxygen in the brain. This is a natural thing your body does on a normal basis, just as if you were to yawn when your body craves more oxygen. If I focus more on my breathing and take it easy during the days when it is very hot and humid, I have found that this can help, but it doesn't take away my symptoms completely.
It is especially hard to exercise even in the slightest of amounts on these days also because your muscles don't have the blood. Joint pains can be tremendous because of the humidity too. It's never a good combination! Ha ha! But I still have to do some sort of activity even when I don't feel well at all. Even if I am stuck in bed because I am too dizzy to stand up, I have to push myself to get out of bed.
I have to ask for help to stand up and walk around. I have to be supervised on these days, which is difficult for my family at times. I have to rely on my mom a lot to help me make meals, clothe myself, and drive me places. I carry my cell phone around with me everywhere I go just in case I feel too dizzy to take a shower or dry my hair with the blow dryer, for instance.
Living with POTS makes a person very cautious of what they do and not do, even when it comes to the everyday sort of activities/chores. I know I'm not going to vacuum my bedroom on a hot day or else I will pass out. I know I should not take a hot/warm shower or even being in the shower for a long time on hot days because I will pass out.
I know my limitations. It has taken me several years to figure out the best plan for everyday living on hot, humid days and on cool days too. It requires a lot of patience, a lot of guess work, a lot of planning, and a lot of help and understanding from family members. Hot weather makes POTS symptoms incredibly life-altering because you literally have to change around your normal routines when it is too hot for your body to handle.
It would be nice to live in Florida where it is sunny so often or in South Carolina where there are so many beautiful beaches to go to. However, to help with my POTS symptoms, I'll have to continue living where I'm at for now.
One day I know POTS will either be cured or there will be a treatment available for all POTS patients. Until then, good luck to you all in this crazy summer season!
Well, with POTS, my blood vessels are already too "relaxed" so they are even worse with the hot weather. This makes it difficult for the blood to come back up from my extremities, meaning there is pooling of blood in my extremities and not enough blood getting to my muscles and my brain. This can cause more pains throughout my body where there is a lack of blood. My body is screaming to have the blood, so this is the cause of the pain. I get headaches and can get very dizzy/lightheaded and experience a lot of brain fogginess because my brain doesn't have enough blood either.
Every symptom I experience is exaggerated with the hot weather, especially when it's really humid outside. I take a lot of deep breaths because my body needs more oxygen in the brain. This is a natural thing your body does on a normal basis, just as if you were to yawn when your body craves more oxygen. If I focus more on my breathing and take it easy during the days when it is very hot and humid, I have found that this can help, but it doesn't take away my symptoms completely.
It is especially hard to exercise even in the slightest of amounts on these days also because your muscles don't have the blood. Joint pains can be tremendous because of the humidity too. It's never a good combination! Ha ha! But I still have to do some sort of activity even when I don't feel well at all. Even if I am stuck in bed because I am too dizzy to stand up, I have to push myself to get out of bed.
I have to ask for help to stand up and walk around. I have to be supervised on these days, which is difficult for my family at times. I have to rely on my mom a lot to help me make meals, clothe myself, and drive me places. I carry my cell phone around with me everywhere I go just in case I feel too dizzy to take a shower or dry my hair with the blow dryer, for instance.
Living with POTS makes a person very cautious of what they do and not do, even when it comes to the everyday sort of activities/chores. I know I'm not going to vacuum my bedroom on a hot day or else I will pass out. I know I should not take a hot/warm shower or even being in the shower for a long time on hot days because I will pass out.
I know my limitations. It has taken me several years to figure out the best plan for everyday living on hot, humid days and on cool days too. It requires a lot of patience, a lot of guess work, a lot of planning, and a lot of help and understanding from family members. Hot weather makes POTS symptoms incredibly life-altering because you literally have to change around your normal routines when it is too hot for your body to handle.
It would be nice to live in Florida where it is sunny so often or in South Carolina where there are so many beautiful beaches to go to. However, to help with my POTS symptoms, I'll have to continue living where I'm at for now.
One day I know POTS will either be cured or there will be a treatment available for all POTS patients. Until then, good luck to you all in this crazy summer season!
Sunday, May 29, 2011
The Dysautonomia Aspect of POTS
POTS falls under the umbrella of Dysautonomia. Let's just break this down here. Dys-auto-nomia. It means dysfunction of the autonomic nervous system (ANS). We don't have to worry about making our heart beat or our lungs breathe. We don't have to concentrate on that because these functions are automatic. So, the autonomic nervous system is like an autopilot for our bodies. It makes changes within our bodies to keep us functioning. It controls our heart rate, blood pressure, breathing, body temperature, digestion, the way our pupils react to light, and so much more.
When our ANS fails or malfunctions, this is called Dysautonomia. POTS is like a subgroup underneath Dysautonomia. Other conditions include: inappropriate sinus tachycardia (IST), vasovagal syncope, mitral valve prolapse dysautonomia, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), and others.
Many doctors are unaware of Dysautonomia. It is notoriously hard to diagnose because of the fact that the symptoms of the condition are vague, sometimes unusual, and can mimic other medical conditions. Most patients are told that "it's all in your head" or it's depression or anxiety. Dysautonomia is real though. It can make life pretty difficult too.
If you look at all of the functions the ANS does for your body, you can truly realize how many things could go wrong. Not being able to control a malfunctioning autopilot is a scary idea to thing about. The worst part of it all is that Dysautonomia is unpredictable. This is what makes POTS symptoms unpredictable too. One day you can do something, and then the next you can't. One day you're experiencing heart palpitations and dizziness, the next you can't control your body temperature or you're near passing out. Some days it's a little better. Some days it's a lot better. While other times it's worse. This is the frustrating part.
It is extremely difficult when you go from being a fully functioning member of society to someone who can't get out of bed in the mornings. This is because Dysautonomia takes away your independence. It's even harder when others do not understand what you are going through. Yes I would love to go to the movies or spend the day going clothes shopping. I would even love to be able to go visit people that I love without worrying about whether I'll be able to drive home.
Sometimes I can manage, but sometimes I can't. I may have to cancel things at the last minute or need to leave early from an event. Sometimes I can do these things, but no one can truly realize the aftermath of the things and events that I can do. I may not be able to string a sentence together, stand or walk in a straight line, or I may need to sleep for a week to recoup after doing simple things like drive, go shopping, or hang out with friends for the day.
I do not want your pity. All that I ask is a little bit of understanding. With June 6th coming up, Invisible Illnesses need to be heard. All that I want you to gain is a realization that Dysautonomia and POTS do exist and they make life a challenge. Dysautonomia-- Say it. Remember it. Spread awareness.
When our ANS fails or malfunctions, this is called Dysautonomia. POTS is like a subgroup underneath Dysautonomia. Other conditions include: inappropriate sinus tachycardia (IST), vasovagal syncope, mitral valve prolapse dysautonomia, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), and others.
Many doctors are unaware of Dysautonomia. It is notoriously hard to diagnose because of the fact that the symptoms of the condition are vague, sometimes unusual, and can mimic other medical conditions. Most patients are told that "it's all in your head" or it's depression or anxiety. Dysautonomia is real though. It can make life pretty difficult too.
If you look at all of the functions the ANS does for your body, you can truly realize how many things could go wrong. Not being able to control a malfunctioning autopilot is a scary idea to thing about. The worst part of it all is that Dysautonomia is unpredictable. This is what makes POTS symptoms unpredictable too. One day you can do something, and then the next you can't. One day you're experiencing heart palpitations and dizziness, the next you can't control your body temperature or you're near passing out. Some days it's a little better. Some days it's a lot better. While other times it's worse. This is the frustrating part.
It is extremely difficult when you go from being a fully functioning member of society to someone who can't get out of bed in the mornings. This is because Dysautonomia takes away your independence. It's even harder when others do not understand what you are going through. Yes I would love to go to the movies or spend the day going clothes shopping. I would even love to be able to go visit people that I love without worrying about whether I'll be able to drive home.
Sometimes I can manage, but sometimes I can't. I may have to cancel things at the last minute or need to leave early from an event. Sometimes I can do these things, but no one can truly realize the aftermath of the things and events that I can do. I may not be able to string a sentence together, stand or walk in a straight line, or I may need to sleep for a week to recoup after doing simple things like drive, go shopping, or hang out with friends for the day.
I do not want your pity. All that I ask is a little bit of understanding. With June 6th coming up, Invisible Illnesses need to be heard. All that I want you to gain is a realization that Dysautonomia and POTS do exist and they make life a challenge. Dysautonomia-- Say it. Remember it. Spread awareness.
Friday, May 27, 2011
Finding Out Who Your True Friends Are
The experience of an illness is a time when people usually find out who their true friends are. Sometimes the extra stress of an illness can break a friendship. But sometimes the illness brings people closer. Maintaining friendships despite the undeniable difficulties faced by the impact of the illness is a tough feat. Illness takes a huge toll on any relationship whether a friendship, romance, or family bond. How people respond to it all defines their character and defines the strength of the friendship. A faithful friend, though, is the medicine of life. I always say that laughter is the most effective (and cheapest!) medication available to every single person. However, you need to share the laughter with others. That's when friends step in.
Friends support each other. You go to functions together. Share memories together. My friends and I would have lunch together and play in the school band together. We would have sleepovers and go bowling too. When I began to experience the first symptoms of POTS in 2005, my friends didn't understand at all. I suddenly missed lunches at school because of doctors' appointments. I began to not feel well so I would go to the nurse's office. I would not join them in sleepover nights when I was too exhausted to pull an all-nighter with them. I wanted to do the things I used to do with my friends. My body just wasn't on the same page as my mind.
My friends didn't understand because I didn't understand what was going on. I couldn't convey to them the pains I was feeling because I didn't know why I was in such pain. They thought I was making up my symptoms just so that I would have an excuse to not hang out with them. This was difficult especially when I needed their support at that time. My symptoms were complicated and were "invisible". I didn't have a broken leg or anything physically obvious going on. My symptoms were all internal. My autonomic nervous system was dysfunctional (dysautonomia) so my heart rate, blood pressure, respiration, digestion, blood vessel dilation and constriction, sensory regulation, and body temperature were all dysfunctional. These are not obvious to normal people.
I had to use extra energy to do very simple things, so that is why I was so exhausted. This can be described as the "invisible work" I have to do every second of the day. I have to compensate for the malfunctions in my body. My schoolwork, of course, was/is the most important thing in my life. Friends always came 2nd, and they understood that. I never had a problem with my schoolwork. I was always very bright and very efficient with my time. But when I exhibited the symptoms of POTS, it took me longer to complete my assignments. I experienced brain fogging throughout much of the day, so I would have to work harder to complete my work. I had to rest more because my body needed to regain energy. I didn't have as much time or energy to spend with my friends.
I constantly would explain to my friends that there is no cure or a "magic pill" to fix my symptoms. I had times where I did feel better. I would be able to hang out for the day at a friend's house. I would be able to go bum around at the mall. But there were times where I would not feel well again. There was always a constant up and down and up and down with my symptoms. Some symptoms would come at me at full force and then the next day I would be functioning rather well again. I was not able to see how my days would play out before they happened. I couldn't plan for get-togethers or RSVP to an event in fear that I wouldn't feel well that day.
This never went over well with my friends because they didn't understand. Sometimes when friends and/or classmates didn't understand what was going on with me, there would be plenty of gossip and rumors spread about me. I knew I shouldn't take it to heart, but it was still hard. I was still the same friend as I was before I got sick. I still cared deeply about my friends. I wanted to hang out and go places together. They treated me differently. They were always uncomfortable because they feared that I was going to faint if we played a game or something. They were always so cautious and talked behind my back. I am an approachable person. I'm not scary to talk to, and I always reminded my friends that if they had any questions that they should ask. I knew deep down that my friends cared and that they were not bad people.
I just think that the stress of a medical condition and the changes that I had to make because of POTS scared my friends away. I didn't get invited to many things after awhile because they assumed I would say no even though I didn't always say no. They hung out every weekend and had sleepovers and then came to school on Monday talking about the amazing weekend they had together. I was never invited to those though. It is difficult. I know countless people can relate, whether they have a medical condition or not. Friendships are always tested by life's events. How your friends handle these events shows you who is willing to stick around and who is not. Understanding makes the difference.
Friends support each other. You go to functions together. Share memories together. My friends and I would have lunch together and play in the school band together. We would have sleepovers and go bowling too. When I began to experience the first symptoms of POTS in 2005, my friends didn't understand at all. I suddenly missed lunches at school because of doctors' appointments. I began to not feel well so I would go to the nurse's office. I would not join them in sleepover nights when I was too exhausted to pull an all-nighter with them. I wanted to do the things I used to do with my friends. My body just wasn't on the same page as my mind.
My friends didn't understand because I didn't understand what was going on. I couldn't convey to them the pains I was feeling because I didn't know why I was in such pain. They thought I was making up my symptoms just so that I would have an excuse to not hang out with them. This was difficult especially when I needed their support at that time. My symptoms were complicated and were "invisible". I didn't have a broken leg or anything physically obvious going on. My symptoms were all internal. My autonomic nervous system was dysfunctional (dysautonomia) so my heart rate, blood pressure, respiration, digestion, blood vessel dilation and constriction, sensory regulation, and body temperature were all dysfunctional. These are not obvious to normal people.
I had to use extra energy to do very simple things, so that is why I was so exhausted. This can be described as the "invisible work" I have to do every second of the day. I have to compensate for the malfunctions in my body. My schoolwork, of course, was/is the most important thing in my life. Friends always came 2nd, and they understood that. I never had a problem with my schoolwork. I was always very bright and very efficient with my time. But when I exhibited the symptoms of POTS, it took me longer to complete my assignments. I experienced brain fogging throughout much of the day, so I would have to work harder to complete my work. I had to rest more because my body needed to regain energy. I didn't have as much time or energy to spend with my friends.
I constantly would explain to my friends that there is no cure or a "magic pill" to fix my symptoms. I had times where I did feel better. I would be able to hang out for the day at a friend's house. I would be able to go bum around at the mall. But there were times where I would not feel well again. There was always a constant up and down and up and down with my symptoms. Some symptoms would come at me at full force and then the next day I would be functioning rather well again. I was not able to see how my days would play out before they happened. I couldn't plan for get-togethers or RSVP to an event in fear that I wouldn't feel well that day.
This never went over well with my friends because they didn't understand. Sometimes when friends and/or classmates didn't understand what was going on with me, there would be plenty of gossip and rumors spread about me. I knew I shouldn't take it to heart, but it was still hard. I was still the same friend as I was before I got sick. I still cared deeply about my friends. I wanted to hang out and go places together. They treated me differently. They were always uncomfortable because they feared that I was going to faint if we played a game or something. They were always so cautious and talked behind my back. I am an approachable person. I'm not scary to talk to, and I always reminded my friends that if they had any questions that they should ask. I knew deep down that my friends cared and that they were not bad people.
I just think that the stress of a medical condition and the changes that I had to make because of POTS scared my friends away. I didn't get invited to many things after awhile because they assumed I would say no even though I didn't always say no. They hung out every weekend and had sleepovers and then came to school on Monday talking about the amazing weekend they had together. I was never invited to those though. It is difficult. I know countless people can relate, whether they have a medical condition or not. Friendships are always tested by life's events. How your friends handle these events shows you who is willing to stick around and who is not. Understanding makes the difference.
Thursday, May 26, 2011
"Just Keep Swimming..."
Alright so the Mayo Clinic is amazing. I will be going there again next week for a yearly check-up with Dr. Fischer. I will have another Tilt-Table Test done so that we can see my progress since 2008 when we did the first TTT. I'm nervous but excited at the same time. I do truly know that I have improved dramatically since 2008 because I was never really able to do any physical activity since winter 2006. I am now able to walk, dance, shop, and go to a college away from home! I was only able to achieve this today through hard work and motivation.
When I say that I was never really able to do any physical activity, I mean I wasn't able to walk continuously for 2 minutes without becoming dizzy and exhausted. Such a difference from being a cross-country runner! Ha ha! But, physical activity does help. My body screamed for me to stop moving. It was tired. It couldn't handle the postural changes or the gravity or the physical exertion. It took me several months to be able to walk around the inside of my house without feeling winded. It took me several more months to be able to make a lap around my small neighborhood (only about 3 blocks).
Then the spring of 2009 I was able to walk for 25 minutes continuously. This means that it took about 3 years to get to normal functioning. The fall of 2009 is when I started college. I had to walk to my classes, haul my laundry around the dorms, go up and down 3 flights of stairs during fire drills, and take part in activities that my friends and I did like cheer at football and basketball games meaning I was on my feet for 2 hours or so. What a difference determination made!
During this 3 year recovery stage, I went to physical therapy for several months to strengthen my joints and muscles to stimulate the blood flow. I had to push myself to get out of bed, to stand up, to force my body to walk around, and not get my hopes down when I was only able to walk for such a short amount of time. This was the most difficult challenge of them all. I was so accustomed to running for miles and miles while on the cross-country team. Having my body not cooperate with my expectations and wants was very difficult and very emotional. I use the term "disability" during this time. My body is not able to function correctly. If my body were a machine, it would be as if I had a broken part on the controls. My system is not working right.
To fix the problem, I have to keep going so that I do not have a disabled body anymore. I want to make that disabled body an able body again. And I am certainly getting there. Just like Dory says in Finding Nemo, "Just keep swimming. Just keep swimming...", well I just keep going. Keep pushing myself to go further. Walk 30 more seconds. Walk to the next street sign. To the next house. The more I move, the better I will feel. While I move I may not feel the greatest, but the pay-offs to what I do accomplish matter the most. I will be able to run again one day. I just have to work my way back up :)
When I say that I was never really able to do any physical activity, I mean I wasn't able to walk continuously for 2 minutes without becoming dizzy and exhausted. Such a difference from being a cross-country runner! Ha ha! But, physical activity does help. My body screamed for me to stop moving. It was tired. It couldn't handle the postural changes or the gravity or the physical exertion. It took me several months to be able to walk around the inside of my house without feeling winded. It took me several more months to be able to make a lap around my small neighborhood (only about 3 blocks).
Then the spring of 2009 I was able to walk for 25 minutes continuously. This means that it took about 3 years to get to normal functioning. The fall of 2009 is when I started college. I had to walk to my classes, haul my laundry around the dorms, go up and down 3 flights of stairs during fire drills, and take part in activities that my friends and I did like cheer at football and basketball games meaning I was on my feet for 2 hours or so. What a difference determination made!
During this 3 year recovery stage, I went to physical therapy for several months to strengthen my joints and muscles to stimulate the blood flow. I had to push myself to get out of bed, to stand up, to force my body to walk around, and not get my hopes down when I was only able to walk for such a short amount of time. This was the most difficult challenge of them all. I was so accustomed to running for miles and miles while on the cross-country team. Having my body not cooperate with my expectations and wants was very difficult and very emotional. I use the term "disability" during this time. My body is not able to function correctly. If my body were a machine, it would be as if I had a broken part on the controls. My system is not working right.
To fix the problem, I have to keep going so that I do not have a disabled body anymore. I want to make that disabled body an able body again. And I am certainly getting there. Just like Dory says in Finding Nemo, "Just keep swimming. Just keep swimming...", well I just keep going. Keep pushing myself to go further. Walk 30 more seconds. Walk to the next street sign. To the next house. The more I move, the better I will feel. While I move I may not feel the greatest, but the pay-offs to what I do accomplish matter the most. I will be able to run again one day. I just have to work my way back up :)
The Diagnosis and The Hero
So in my last post I talked about the process of misdiagnoses and such. Many POTS patients go back and forth and jumping from doctor to doctor, sometimes over a course of several years. I am one of these patients. 3 and a half years! Over 20 different doctors. At least 8 different hospitals. Countless blood draws. Some MRI's and CT scans. An EEG. 3 awful EMG's (painful). Some EKG's/ECG's. A sleep study. A few ultrasounds. An echocardiogram. And a lot of time spent with Mom in the car traveling to the medical tests and appointments!
But, I can't complain. I learned a lot about the human body during this process. Having this experience with POTS has allowed me to gain an understanding of people and their disabilities and/or physical difficulties that no one else may understand if they didn't have this all going on. Yes, there were plenty of drawbacks, but I'm young. I'm still young. I can bounce back. I have plenty of time to make up for the time lost during this 3 and a half year process!
Well, to get to the diagnosis, I had to go up to the Mayo Clinic in Rochester, MN. I had an appointment with a cardiologist, rheumatologist, and pain doctor. The doctors were very interested to hear my entire story from day 1. It was very nice to have doctors that were willing to listen rather than just attempt to treat me and send me away. They were very collaborative. Always updating one another with information. I had so many tests performed on me. It was amazing that the doctors accomplished so much in just a week (yes I said a week because when you're as strange of a case as me, the doctors want to check off every possibility).
One of the tests I had was called the Tilt Table Test (TTT). For those of you Star Wars fans, think about the end of Episode 3 when Darth Vader is slowly tilted upwards into an almost standing position when he is on the table. This is exactly what the TTT is like. I was strapped onto a hospital bed and hooked up to a few machines that measured my heart rate, blood pressure, body temperature, etc. I started off laying flat, parallel to the floor. I was then slowly tilted upward until I was just about standing, even though I was strapped onto the bed. I "stood" there for about 10 minutes while the machines were tracking my vitals and how they were different from the vitals taken while I was laying down.
POTS means that the body does not adjust to the pull of gravity. It means that while standing or with postural changes, the blood vessels in the body do not open and close as they should. So, the blood in the body pools in the extremities. When it does this, the body tries to pump the blood as fast as it can so it goes to the parts that need more blood like the brain. The heart rate increases. Blood pressure decreases. And the patient gets dizzy and may have brain fogging because of the lack of blood flow. Some get pains throughout the body because muscles and body parts do not get the amount of blood it needs.
When I had the TTT done, my heart rate increased from 78 beats/minute to 145 beats/minute within 2 minutes of me in the "standing" position. My blood pressure didn't significantly decrease, but it still did decrease. Just with this happening to me, my doctors knew that I had POTS.
When I had the test done, I went straight to get the good news from a doctor by the name of Dr. Phillip Fischer. He was the Head of the Pediatric and Adolescent Medical Unit of the hospital at the time. He has done a great deal of research on POTS. When the cardiologist sent me to see Dr. Fischer, I was very excited because I finally had a diagnosis. Dr. Fischer sat down and explained what POTS is, what is the prognosis of the condition, what I have to do to get better, and how he can help me get better. My mom and I probably talked to Dr. Fischer for at least 2 hours! He is literally the smartest man I have ever met. He's one of the kindest also.
Previous doctors always asked me whether I was depressed or was seeking attention from others. They believed that the pain I experienced and the fatigue and the palpitations and every POTS symptom I have was all in my head. How could I be in so much pain and no one was able to fix me? No doctor before Dr. Fischer knew what was wrong with me. All they could do was to give me another medication to add to my already long list from the previous doctors' prescriptions. That never helped me enough. Because those doctors all misdiagnosed me.
Dr. Fischer was different. He did not prescribe me more medications. He always asks me, "What do you want fixed?" This way of thinking is what every patient wishes their doctor to have. I'm lucky that Dr. Fischer was able to diagnose me correctly, or else I would still probably be down the medical mystery path right now. Others may see him as a colleague, a doctor, a mentor, a father, and a friend. I see him as an angel. He has changed my life for the better, just as he has done for so many other patients. He is the accurate definition of a hero in my eyes.
But, I can't complain. I learned a lot about the human body during this process. Having this experience with POTS has allowed me to gain an understanding of people and their disabilities and/or physical difficulties that no one else may understand if they didn't have this all going on. Yes, there were plenty of drawbacks, but I'm young. I'm still young. I can bounce back. I have plenty of time to make up for the time lost during this 3 and a half year process!
Well, to get to the diagnosis, I had to go up to the Mayo Clinic in Rochester, MN. I had an appointment with a cardiologist, rheumatologist, and pain doctor. The doctors were very interested to hear my entire story from day 1. It was very nice to have doctors that were willing to listen rather than just attempt to treat me and send me away. They were very collaborative. Always updating one another with information. I had so many tests performed on me. It was amazing that the doctors accomplished so much in just a week (yes I said a week because when you're as strange of a case as me, the doctors want to check off every possibility).
One of the tests I had was called the Tilt Table Test (TTT). For those of you Star Wars fans, think about the end of Episode 3 when Darth Vader is slowly tilted upwards into an almost standing position when he is on the table. This is exactly what the TTT is like. I was strapped onto a hospital bed and hooked up to a few machines that measured my heart rate, blood pressure, body temperature, etc. I started off laying flat, parallel to the floor. I was then slowly tilted upward until I was just about standing, even though I was strapped onto the bed. I "stood" there for about 10 minutes while the machines were tracking my vitals and how they were different from the vitals taken while I was laying down.
POTS means that the body does not adjust to the pull of gravity. It means that while standing or with postural changes, the blood vessels in the body do not open and close as they should. So, the blood in the body pools in the extremities. When it does this, the body tries to pump the blood as fast as it can so it goes to the parts that need more blood like the brain. The heart rate increases. Blood pressure decreases. And the patient gets dizzy and may have brain fogging because of the lack of blood flow. Some get pains throughout the body because muscles and body parts do not get the amount of blood it needs.
When I had the TTT done, my heart rate increased from 78 beats/minute to 145 beats/minute within 2 minutes of me in the "standing" position. My blood pressure didn't significantly decrease, but it still did decrease. Just with this happening to me, my doctors knew that I had POTS.
When I had the test done, I went straight to get the good news from a doctor by the name of Dr. Phillip Fischer. He was the Head of the Pediatric and Adolescent Medical Unit of the hospital at the time. He has done a great deal of research on POTS. When the cardiologist sent me to see Dr. Fischer, I was very excited because I finally had a diagnosis. Dr. Fischer sat down and explained what POTS is, what is the prognosis of the condition, what I have to do to get better, and how he can help me get better. My mom and I probably talked to Dr. Fischer for at least 2 hours! He is literally the smartest man I have ever met. He's one of the kindest also.
Previous doctors always asked me whether I was depressed or was seeking attention from others. They believed that the pain I experienced and the fatigue and the palpitations and every POTS symptom I have was all in my head. How could I be in so much pain and no one was able to fix me? No doctor before Dr. Fischer knew what was wrong with me. All they could do was to give me another medication to add to my already long list from the previous doctors' prescriptions. That never helped me enough. Because those doctors all misdiagnosed me.
Dr. Fischer was different. He did not prescribe me more medications. He always asks me, "What do you want fixed?" This way of thinking is what every patient wishes their doctor to have. I'm lucky that Dr. Fischer was able to diagnose me correctly, or else I would still probably be down the medical mystery path right now. Others may see him as a colleague, a doctor, a mentor, a father, and a friend. I see him as an angel. He has changed my life for the better, just as he has done for so many other patients. He is the accurate definition of a hero in my eyes.
Sunday, May 22, 2011
First Episode Down. Plenty More to Go...
Well after all of this chaos in October of my freshman year in high school, things weren't the same. I started getting intense pain in my feet and legs. Of course, being a runner, I thought it could be shin splints or something orthopedic. I went to several doctors, but they were clueless as to what was wrong. I went to a specialist and he recommended for me to be on crutches for awhile, thinking I did have shin splints. This was a mistake though. I began to have extreme and chronic lower back pain that ended up fixating itself throughout my entire back after some time. Being on crutches and having this pain was not helpful. So, of course I went to another specialist.
This time it was the back doctor. I had so many MRI's and CT scans done to see if there was anything physically wrong with me. After negative results on all of the tests, I was just a girl with lots of random pain. Then I was off to see a rheumatologist, oncologist (they found an abnormal MRI scan of my bone marrow one time, so they thought I had leukemia), plenty of neurologists, a few endocrinologists (since my hormones weren't cooperating and I was diagnosed with polycystic ovarian disease), and I was referred to a few psychiatrists (since they thought my pain could be caused by depression...uh no!! Everyone who knows me knows that I am the furthest away from being depressed!). This all took roughly 3 years to complete. So yes, this means that much of my high school social life consisted of making friends with all of the doctors and nurses I saw! Ha Ha! I had to have a sense of humor through all of this. And yes, it wasn't exactly what I wanted to do after school or miss school for, but going to figure out this mystery diagnosis is what I had to do.
I'm not the type of student who enjoys missing a few classes here and there. No! I would much rather be in school learning...I do have to admit that I am a bit of a nerd in that sense :) So instead of missing school, I would usually be able to go after school to the doctors (key word: "usually"). By the time winter came around my sophomore year of high school, I had to quit running and I was not doing so well in my honors band at school. I had to take the normal courses at school too rather than the honors and AP courses so that if I didn't feel well or I had to miss class for doctors' appointments, I would not be too far behind. But, at least I was still able to go to school!!
I began to have extreme pains throughout my entire body. Literally from head to toe in pain. Intense headaches and pin-point pains on my head, pains and pressure behind my eyes, muscular pain throughout my body, joint pains mainly in my hands, knees, and back, and extreme fatigue. I was a cross-country runner. I used to run a minimum of 5 miles a day. But during the winter of my sophomore year after the cross-country season had ended, I was not even able to walk for 10 minutes straight. Things were very different.
Standing up became a challenge. I had palpitations for the first time, which are the strangest feelings ever! I also had a very weak body. It is so difficult to describe it other than I felt like an elderly person with arthritis or something. Barely able to walk. Had to use the elevator in school because I couldn't walk up a flight of stairs without becoming very winded and lightheaded. There was just this exercise intolerance my body had. I had to get a note from my doctor saying that I could not perform in gym class, so I had a study hall in place of gym class. This was disappointing to me because gym was the most enjoyable class for me.
Sounds pretty depressing, doesn't it? But was I depressed...? HECK NO! I just kept going. I went to school when I probably shouldn't have gone because of the intense pains. I still went above and beyond all of my teachers' expectations, which landed me a 4.0 GPA. I was still achieving so much even with the chaos of an unpredictable and still rather unknown medical condition. As always, there were more struggles that I had to overcome in the following years. However, there were some very amazing times too. So don't be depressed with all of this. I have a very positive outlook on things. I never let POTS or anything get in my way of being happy :) I always have to live up to my nickname... "Smiles"!
This time it was the back doctor. I had so many MRI's and CT scans done to see if there was anything physically wrong with me. After negative results on all of the tests, I was just a girl with lots of random pain. Then I was off to see a rheumatologist, oncologist (they found an abnormal MRI scan of my bone marrow one time, so they thought I had leukemia), plenty of neurologists, a few endocrinologists (since my hormones weren't cooperating and I was diagnosed with polycystic ovarian disease), and I was referred to a few psychiatrists (since they thought my pain could be caused by depression...uh no!! Everyone who knows me knows that I am the furthest away from being depressed!). This all took roughly 3 years to complete. So yes, this means that much of my high school social life consisted of making friends with all of the doctors and nurses I saw! Ha Ha! I had to have a sense of humor through all of this. And yes, it wasn't exactly what I wanted to do after school or miss school for, but going to figure out this mystery diagnosis is what I had to do.
I'm not the type of student who enjoys missing a few classes here and there. No! I would much rather be in school learning...I do have to admit that I am a bit of a nerd in that sense :) So instead of missing school, I would usually be able to go after school to the doctors (key word: "usually"). By the time winter came around my sophomore year of high school, I had to quit running and I was not doing so well in my honors band at school. I had to take the normal courses at school too rather than the honors and AP courses so that if I didn't feel well or I had to miss class for doctors' appointments, I would not be too far behind. But, at least I was still able to go to school!!
I began to have extreme pains throughout my entire body. Literally from head to toe in pain. Intense headaches and pin-point pains on my head, pains and pressure behind my eyes, muscular pain throughout my body, joint pains mainly in my hands, knees, and back, and extreme fatigue. I was a cross-country runner. I used to run a minimum of 5 miles a day. But during the winter of my sophomore year after the cross-country season had ended, I was not even able to walk for 10 minutes straight. Things were very different.
Standing up became a challenge. I had palpitations for the first time, which are the strangest feelings ever! I also had a very weak body. It is so difficult to describe it other than I felt like an elderly person with arthritis or something. Barely able to walk. Had to use the elevator in school because I couldn't walk up a flight of stairs without becoming very winded and lightheaded. There was just this exercise intolerance my body had. I had to get a note from my doctor saying that I could not perform in gym class, so I had a study hall in place of gym class. This was disappointing to me because gym was the most enjoyable class for me.
Sounds pretty depressing, doesn't it? But was I depressed...? HECK NO! I just kept going. I went to school when I probably shouldn't have gone because of the intense pains. I still went above and beyond all of my teachers' expectations, which landed me a 4.0 GPA. I was still achieving so much even with the chaos of an unpredictable and still rather unknown medical condition. As always, there were more struggles that I had to overcome in the following years. However, there were some very amazing times too. So don't be depressed with all of this. I have a very positive outlook on things. I never let POTS or anything get in my way of being happy :) I always have to live up to my nickname... "Smiles"!
Saturday, May 21, 2011
How it all began
In June 2005 I moved on from 8th grade to high school. I was very excited, very driven, and very happy to start a new stage in my life. I decided to join my high school's summer running camp, which would help me in my decision of whether to join the school's cross-country team in the fall. I went to the camp. I accomplished my personal goals I had made. Ran my first 5K race only after a week's worth of running long distance. Still managed to obtain a 3rd place medal in my age group. I was on top of the world. Everything seemed to be going much better than according to plan. I was successful in the fall with my classes and I ran a few varsity races on the cross-country team as a freshman, which is pretty unheard of. All of this changed on October 1, 2005.
During a cross-country race, I ran perfectly. I ran well beyond my personal best and managed to get 17th place overall in a varsity race. However, the moment I ran across the finish line, I could not feel my feet. This was strange because I have never experienced that feeling after running. My shoes weren't too tight. The circulation in my body was normal. I just couldn't feel my feet. Then after a few minutes, I couldn't feel my legs and I got very dizzy. The paramedics at the race were worried and thought I was having a heart attack so they rushed me to the emergency room via the ambulance. It was quite fun riding in an ambulance for the first time. I was terrified though. I had no clue as to what was wrong with me. But what worried me most was that the paramedics did not know either.
At the hospital the doctors performed numerous tests on me. Urine tests. Blood tests. Heart rate monitors. Oxygen monitors. I felt fine. I just couldn't feel my legs and feet and felt dizzy. That was it. Since they could not find anything physically wrong with me, they sent me home and said I might be coming down with the flu. This seemed very odd to me. But sure enough, the week after this happening, I got flu-like symptoms. So, I thought I was going to be perfectly fine again. Oh boy was I wrong...
During a cross-country race, I ran perfectly. I ran well beyond my personal best and managed to get 17th place overall in a varsity race. However, the moment I ran across the finish line, I could not feel my feet. This was strange because I have never experienced that feeling after running. My shoes weren't too tight. The circulation in my body was normal. I just couldn't feel my feet. Then after a few minutes, I couldn't feel my legs and I got very dizzy. The paramedics at the race were worried and thought I was having a heart attack so they rushed me to the emergency room via the ambulance. It was quite fun riding in an ambulance for the first time. I was terrified though. I had no clue as to what was wrong with me. But what worried me most was that the paramedics did not know either.
At the hospital the doctors performed numerous tests on me. Urine tests. Blood tests. Heart rate monitors. Oxygen monitors. I felt fine. I just couldn't feel my legs and feet and felt dizzy. That was it. Since they could not find anything physically wrong with me, they sent me home and said I might be coming down with the flu. This seemed very odd to me. But sure enough, the week after this happening, I got flu-like symptoms. So, I thought I was going to be perfectly fine again. Oh boy was I wrong...
Subscribe to:
Posts (Atom)