My dear friend, Sam, wrote an interesting blog post earlier this week called 'Mantras.' Her blog post got me thinking (which is, I think, what all blog posts should strive to do), and ultimately it inspired the post you are reading right now.
Mantras originated as part of Hinduism (technically part of the Vedic tradition which I believe came earlier than Hinduism but parts of it were absorbed into Hinduism--including the use of mantras). A mantra is a word, phrase, or sound that one says repetitively in order to induce a kind of spiritual transformation. Yogis make frequent use of mantras. The "ohm" sound most of us associate with yoga is actually the pranava mantra. The pranava mantra is the way the word Aum sounds. "Ohm". This is literally the sound of creation. No wonder it is used to bring about spiritual transformation.
I never put much stock into mantras. I thought they were silly. That is until this year. Right before my 27th birthday I decided it was time to make some major life changes. I was about to be 27 years old and I was miserable. In addition to being in the worst health of my life and struggling daily with congestive heart failure, about which I was quite bitter, I was also unhappy with my career (or rather lack thereof).
I couldn't breathe (both literally and figuratively). I ached all the time, all over. The things the doctors were doing to me to keep me alive hurt and I simply did not appreciate their efforts to force life into my dying body, and it was dying. I was dying. My big plan to be a professor simply didn't pan out, nor did it make me happy. I did not like the ignoble political games I was forced to play in order to get ahead. I dropped out of my graduate program because I felt it was a waste of my time and energy. I began applying for management positions at museums. I always made it to the final round of interviews, but I never got the jobs. I didn't have a M.A. in Public History. Like I said, I was miserable.
Then 2 and a half weeks before my birthday I went to see my cardiologist. My health was worsening and because I have such a complex series of diagnoses standard treatment wasn't working. I also have something called "inappropriate sinus tachycardia". IST makes your heart beat too fast, but doctors don't know what causes it nor do they know how to treat it. Doctors also cannot agree on how dangerous this disorder is. My doctor thought it would eventually kill me given my congestive heart failure. So he proposed a radical plan to improve my health, a wholly experimental treatment. It would be dangerous. He wanted me to do aerobics. People with CHF are not supposed to do aerobics because aerobics can lead to cardiac arrest for patients with this condition, patients like me. But my doctor said, "I don't know if this will work. I do know it will be dangerous. But something has to change or nothing ever will. Desperate times call for desperate measures, and I think this is a desperate time."
That's when my life changed. That moment. In that second I decided that I had to change in order to live. I applied for admission to the Public History program at my local college. I was accepted. I would get that M.A. employers wanted me to have. I took up walking. I puked. I hurt. I turned blue. I kept doing it. I thought "I can't do this." I read The Secret. I tried to engage in positive thinking. I decided that what I told myself about myself and what I was doing really mattered. So I started using mantras. Mantras, which I had previously thought of as silly things, became the very thing that kept me going.
As I walked I chanted "I am not going to die. I am not going to die. I am not going to die." Then I started jogging. Slowly. One minute at a time. Five minute walking breaks in between each one minute stretch. I decided I needed to shift my focus from death to life. So I started chanting "I am going to live. I am going to live. I am going to live." Then one day during a particularly difficult jog I had another realization. I puked my guts up in my neighbors yard and my lips and fingernails were blue. I was heaving for breath. I thought this is not living. I needed my body to be stronger. So the next day I started chanting "My body is strong. My body is strong. My body is strong."
Some days I tie on my running shoes and head out the door and my heartbeat won't regulate itself. It runs out of control, faster than it should, faster than my feet are carrying me. My chest is tight and it is hard to breathe. On these days I return to my earlier chant, "My body is strong. My body is strong. My body is strong." I might have to shorten my run on these days, but I always run. I always finish. My body is strong.
Other days my feet carry me faster than ever before and my heart beats at just the right pace and my lungs expand with air and I feel like I am flying. On these days I have a new mantra. I am living. I am living. I am living. I am living.
What you tell yourself matters.
Are you living?
Showing posts with label congestive heart failure. Show all posts
Showing posts with label congestive heart failure. Show all posts
Saturday, October 22, 2011
Monday, August 29, 2011
Running For A Cause
As many of you know, I have struggled with a serious heart condition all of my life. I was a sickly child and by middle school I wasn't even medically permitted to participate in phys ed anymore. So while my best friends were playing soccer and softball and running on the track team, I was forced to watch them from the sidelines.
My family is athletic. I was as active as possible until I was 12 and my condition began deteriorating. My great grandfather even played pro baseball. I hated not being allowed to do anything 'fun.' Fast forward a decade and you have the day my heart stopped beating. I was in my early twenties. Congestive heart failure was my diagnosis.
You hear about cancer and diabetes and obesity every day. No one ever talks about CHF. No one ever talks about how young some of the people who get it are. No one ever talks about how it makes it hard to breathe or how sometimes your fingers and your feet swell to twice their normal size or how sometimes your fingernails and your lips turn blue because you don't have enough oxygen in your body. No one ever talks about the heart valve problems that lead to this disorder or how these disorders get in the way of a normal, active childhood. No one ever talks about the sick kids who need specialized medical care.
Well I'm going to talk about it today. I was that sick kid. I have battled heart disease since I was a child. I have fought to live. I have fought to breathe. I have fought to get better. For more than a decade I have waged war with my own body. You probably don't know what that's like, but however horrible you think it sounds--it's worse.
For the first time in my life though, I have control. I feel like I'm winning this never ending battle against this disease. I have completed several rounds of cardiac rehab, and this last time....it stuck.
In March my doctor told me I could start walking a mile a day. I haven't been medically permitted to do that since I was 16 years old. I'm 27 now. At first I could barely make it the whole mile. I threw up. I wheezed. I coughed. My lips turned blue. In May my doctor told me I could start jogging part of that mile. Again, I wheezed. I coughed. I threw up. My lips turned blue. I kept at it.
Now it's the end of August. It may have taken me nearly six months, but I'm going further and faster now. I run 1.5 miles 2 to 3 times a week, and 3.8 miles once a week. Some days I still wheeze, cough, turn blue, and puke.
I am happy to report that I currently show no signs or symptoms of CHF. My mitral valve still does not work quite the way it should. My heart still beats too fast. But I'm okay...and I'm running.
Couch to 5k in 10 weeks? Not me. Couch to 5k in six months? Yep, that's me! I just signed up for my first ever 5k. I picked Hit the Brixx 5k for my first 5k because it benefits Kid's Path. Kid's Path is an organization that helps children living with life threatening illnesses, children who are sick. I know what it's like to be sick when all you want to do is play outside. I know what it's like to watch your friends do things you can't do. I wanted my first 5k to benefit a cause that is dear to me. I wanted to show these sick children that sometimes when you fight you win and sometimes miracles do happen.
I don't have a lofty goal for my 5k. My only goal is to finish. This race requires you to finish in 55 minutes so I hope I can do that. If you'd like to come support me and every other sick child (or all grown up sick kids) then please visit the website or show up on race day to cheer me on!
My family is athletic. I was as active as possible until I was 12 and my condition began deteriorating. My great grandfather even played pro baseball. I hated not being allowed to do anything 'fun.' Fast forward a decade and you have the day my heart stopped beating. I was in my early twenties. Congestive heart failure was my diagnosis.
You hear about cancer and diabetes and obesity every day. No one ever talks about CHF. No one ever talks about how young some of the people who get it are. No one ever talks about how it makes it hard to breathe or how sometimes your fingers and your feet swell to twice their normal size or how sometimes your fingernails and your lips turn blue because you don't have enough oxygen in your body. No one ever talks about the heart valve problems that lead to this disorder or how these disorders get in the way of a normal, active childhood. No one ever talks about the sick kids who need specialized medical care.
Well I'm going to talk about it today. I was that sick kid. I have battled heart disease since I was a child. I have fought to live. I have fought to breathe. I have fought to get better. For more than a decade I have waged war with my own body. You probably don't know what that's like, but however horrible you think it sounds--it's worse.
For the first time in my life though, I have control. I feel like I'm winning this never ending battle against this disease. I have completed several rounds of cardiac rehab, and this last time....it stuck.
In March my doctor told me I could start walking a mile a day. I haven't been medically permitted to do that since I was 16 years old. I'm 27 now. At first I could barely make it the whole mile. I threw up. I wheezed. I coughed. My lips turned blue. In May my doctor told me I could start jogging part of that mile. Again, I wheezed. I coughed. I threw up. My lips turned blue. I kept at it.
Now it's the end of August. It may have taken me nearly six months, but I'm going further and faster now. I run 1.5 miles 2 to 3 times a week, and 3.8 miles once a week. Some days I still wheeze, cough, turn blue, and puke.
I am happy to report that I currently show no signs or symptoms of CHF. My mitral valve still does not work quite the way it should. My heart still beats too fast. But I'm okay...and I'm running.
Couch to 5k in 10 weeks? Not me. Couch to 5k in six months? Yep, that's me! I just signed up for my first ever 5k. I picked Hit the Brixx 5k for my first 5k because it benefits Kid's Path. Kid's Path is an organization that helps children living with life threatening illnesses, children who are sick. I know what it's like to be sick when all you want to do is play outside. I know what it's like to watch your friends do things you can't do. I wanted my first 5k to benefit a cause that is dear to me. I wanted to show these sick children that sometimes when you fight you win and sometimes miracles do happen.
I don't have a lofty goal for my 5k. My only goal is to finish. This race requires you to finish in 55 minutes so I hope I can do that. If you'd like to come support me and every other sick child (or all grown up sick kids) then please visit the website or show up on race day to cheer me on!
Sunday, May 29, 2011
Getting My Life Back
I was only 13 years old when a mandatory physical for soccer tryouts turned up something unexpected. The doctor's brows crinkled together and he pursed his lips.
"Shhhh," he told me, "I need to hear this." He craned his head into his stethoscope and pressed the cool metal to a different place on my chest.
"Are your parents with you?" he asked.
I shook my head no. Geeze just sign my form. I've already been playing soccer for 2 years.
"Please have a seat outside and when they get here bring them back with you," he instructed.
"But you didn't sign my form!"
"We'll talk about that when your parents get here."
My grandparents arrived to pick me up and I led them to the room where the doctor was conducting sports physicals. He pulled us into a private office and asked us to have a seat.
"I see on your forms that your daughter (most people made that mistake so I overlooked it and so did they) was born with a minor heart murmur. Have you had that checked out recently?"
We shook our heads no. "I'm going to refer you to a pediatric cardiologist. I'm sorry but it sounds as if the murmur has grown worse and I don't feel comfortable signing the form so she can play soccer this season."
And that was that. That was the end of my life as I knew it. I had an echo-cardiogram that confirmed that two of the valves in my heart were not working quite the way they should. I was put on some medication and told to restrict my physical activity. I was no longer permitted to play team sports.
To understand the affect this had on me, you should understand how athletic I was. The year before I had run a 5 minute mile and I was the only girl in my county to do it. I had beat the best high school female time by nearly a full minute and I was only 12 years old. I still have a fitness certificate signed by George Bush in a drawer somewhere to prove it. I had been playing on a boys soccer league for 2 years and I'd beaten all of them out to become goalie (and I was good at it too). I had also won a metal for most continuous free throws in a free throw competition--one of the girls I beat went on to play in the WNBA. I was very active and I loved sports.
Then suddenly I was not allowed to do any of the sports I loved. I cannot explain to you how frustrating that was, how gut wrenching it was. I was an athlete (and a good one)....and then suddenly I wasn't.
Fast forward to the December right before my 23rd birthday (which is in March in case any of you lovely people want to get me a gift next year) and everything suddenly got even worse. My heart stopped and I died for 3 minutes. My faulty heart valves had given out and I was in full blown congestive heart failure. It got so bad I couldn't even walk up a flight of stairs. I couldn't walk from my car to my front door without getting out of breath. It was horrible.
I am now 27 years old and I have spent the past 4 years of my life battling congestive heart failure. A marvelous team of medical doctors have finally gotten my leaky valves under control. My heart still beats too fast, but I've been doing cardiac rehab off and on for 2 years now. The fluid around my heart and lungs doesn't build up as fast and is slowing receding to nothingness--a fact for which I am eternally grateful. I'm getting better.
My doctor finally told me I could try running again. He said I had to limit myself to 20 minutes and I had to walk 5 then alternate jog/walk every other minute for 10 then walk the last 5. When I first started in March I couldn't even make it around my block without throwing up. But I did it every single day. Rain or shine. Puke or no puke. I did it.
At the end of April I added an extra street to my daily walk/jog and now I walk/jog for 1.5 miles daily. I walk 3 now (instead of 5), then I run for 1.5 minutes (instead of 1) and walk for 2, then I end with a 2 minute walk. I'm running for longer spurts of time and for greater distances.
Today I decided to try the Greenway in my city for the first time. It's a 4 mile loop. I ran for the first 1.5 miles (ok run/walked), and I walked the rest. It took me an hour and a half. At first I was royally pissed off that it took me an hour and a half to make it 4 miles. I was so mad at myself for not being faster and stronger.
Then it hit me. I made it 4 miles. Four months ago I wouldn't even have been able to make it a quarter of a mile. Three months ago I couldn't even make it a whole mile. But today I made it four miles. So what if it took me longer than I wanted it to? So what if I got a blister the size of Kansas on my big toe? So what if it was 85 degrees and I felt like I was going to die? I pushed through and I made it. 4 miles. I haven't been able to do 4 miles since I was 12 years old. I'll take my hour and half four miles and the blister to boot.
"Shhhh," he told me, "I need to hear this." He craned his head into his stethoscope and pressed the cool metal to a different place on my chest.
"Are your parents with you?" he asked.
I shook my head no. Geeze just sign my form. I've already been playing soccer for 2 years.
"Please have a seat outside and when they get here bring them back with you," he instructed.
"But you didn't sign my form!"
"We'll talk about that when your parents get here."
My grandparents arrived to pick me up and I led them to the room where the doctor was conducting sports physicals. He pulled us into a private office and asked us to have a seat.
"I see on your forms that your daughter (most people made that mistake so I overlooked it and so did they) was born with a minor heart murmur. Have you had that checked out recently?"
We shook our heads no. "I'm going to refer you to a pediatric cardiologist. I'm sorry but it sounds as if the murmur has grown worse and I don't feel comfortable signing the form so she can play soccer this season."
And that was that. That was the end of my life as I knew it. I had an echo-cardiogram that confirmed that two of the valves in my heart were not working quite the way they should. I was put on some medication and told to restrict my physical activity. I was no longer permitted to play team sports.
To understand the affect this had on me, you should understand how athletic I was. The year before I had run a 5 minute mile and I was the only girl in my county to do it. I had beat the best high school female time by nearly a full minute and I was only 12 years old. I still have a fitness certificate signed by George Bush in a drawer somewhere to prove it. I had been playing on a boys soccer league for 2 years and I'd beaten all of them out to become goalie (and I was good at it too). I had also won a metal for most continuous free throws in a free throw competition--one of the girls I beat went on to play in the WNBA. I was very active and I loved sports.
Then suddenly I was not allowed to do any of the sports I loved. I cannot explain to you how frustrating that was, how gut wrenching it was. I was an athlete (and a good one)....and then suddenly I wasn't.
Fast forward to the December right before my 23rd birthday (which is in March in case any of you lovely people want to get me a gift next year) and everything suddenly got even worse. My heart stopped and I died for 3 minutes. My faulty heart valves had given out and I was in full blown congestive heart failure. It got so bad I couldn't even walk up a flight of stairs. I couldn't walk from my car to my front door without getting out of breath. It was horrible.
I am now 27 years old and I have spent the past 4 years of my life battling congestive heart failure. A marvelous team of medical doctors have finally gotten my leaky valves under control. My heart still beats too fast, but I've been doing cardiac rehab off and on for 2 years now. The fluid around my heart and lungs doesn't build up as fast and is slowing receding to nothingness--a fact for which I am eternally grateful. I'm getting better.
My doctor finally told me I could try running again. He said I had to limit myself to 20 minutes and I had to walk 5 then alternate jog/walk every other minute for 10 then walk the last 5. When I first started in March I couldn't even make it around my block without throwing up. But I did it every single day. Rain or shine. Puke or no puke. I did it.
At the end of April I added an extra street to my daily walk/jog and now I walk/jog for 1.5 miles daily. I walk 3 now (instead of 5), then I run for 1.5 minutes (instead of 1) and walk for 2, then I end with a 2 minute walk. I'm running for longer spurts of time and for greater distances.
Today I decided to try the Greenway in my city for the first time. It's a 4 mile loop. I ran for the first 1.5 miles (ok run/walked), and I walked the rest. It took me an hour and a half. At first I was royally pissed off that it took me an hour and a half to make it 4 miles. I was so mad at myself for not being faster and stronger.
Then it hit me. I made it 4 miles. Four months ago I wouldn't even have been able to make it a quarter of a mile. Three months ago I couldn't even make it a whole mile. But today I made it four miles. So what if it took me longer than I wanted it to? So what if I got a blister the size of Kansas on my big toe? So what if it was 85 degrees and I felt like I was going to die? I pushed through and I made it. 4 miles. I haven't been able to do 4 miles since I was 12 years old. I'll take my hour and half four miles and the blister to boot.
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