Well the reasons why I haven’t been posting much lately is a few things. One I bought a condo and I am trying to organize my stuff and pack it Plus I need to prepare a few things at the condo like painting the orange and brown walls. Secondly, I was having severe cardiac symptoms that caused me to be in a lot of pain and usually had me passing out a few times of week. So my cardiologist put me on medical leave for a bit over a month. Good news is almost all the symptoms are gone and I am feeling better than I have in years. However, that means I had to make the ultimate decision to stop working for good so yesterday I returned to work to give my two week notice.
Will be continued later….
Wednesday, November 18, 2009
Monday, October 12, 2009
Meet Brooke (HLHS)
Brooke
24 years old
Hypoplastic Left Heart Syndrome (HLHS)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven’t had a chance to? I would like to say that kids with CHD are normal. I think a lot of people feel like we needed to be treated differently or feel sympathy for us because of our medical history. What people don’t realize is that what we go through with our hearts may seem unusual or extraordinary to other people is completely normal for us. Parents of CHD kids need to remember this and treat their kids like they didn’t have a medical condition; they should have the same expectations and aspirations for them as their kids without CHD.
Give a short description how you perceive your life or felt about as corresponding with the following three words
Past: Growing up I was always a little different than kids my age; I was always more mature and had a hard time identifying with kids my age. I guess when you go through life-threatening events like heart surgery, even if you were young and don’t really remember it, it changes you; you learn not to take life for granted.
Present: Right now, my husband and I are living in Idaho while I’m finishing my graduate degree in Speech-language pathology. I’m itching to get out of school and start my “real life” but I feel incredibly lucky to be here, even if we’ve had to move far away from family and friends. The challenges have been well worth it.
Future: My husband and I are hoping to start our family in the next couple years. I was very excited to hear from my cardiologist that I could probably carry a child. I am looking forward to having a family and sharing these experiences with my friends and family.
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be? I would want to tell those children that you are special. Your experiences will shape you your whole life. Never be ashamed for what makes you different. You bring so much hope to people who come after you.
What is or are your greatest accomplishment(s) in life (so far)? I would say my two greatest accomplishments have been getting into graduate school and marrying the love of my life, Matthew.
What has having CHD taught you? Never take life for granted. Don’t sweat the small stuff.
Briefly share your story of growing up with CHD Growing up, my parents were honest with me about my condition and what it meant for my future. My mother taught me that nutrition is extremely important for someone like me. Also, my mom and I were involved in advocacy; talking to parents of babies with CHD and participating in heart walks. I did a commercial for the American Heart Association and was in one of their newsletters. Today, I still talk to parents of children with CHD and it’s amazing to see how much hope it brings to them to see an adult with CHD. I am also doing my master’s thesis on the language development and play skills of kids with a history of early corrective heart surgery (ECHS).
How has having CHD changed your life (other then the obvious health issues)? It has taught me to value every day of my life. I think a lot of people my age are unaware of their own mortality and tend to waste this time in their live or at least take it for granted. I consider CHD to be a great gift. I would not be myself without it.
Sunday, October 11, 2009
Gift of life
For many of us adults with CHD we have had the transplant conversation with the doctor. The decision to put yourself on the donor list is one that is probably the hardest you will make. I know personally I have been given the option a few times in my life. I would have to face a double transplant heart and lung. The survival longevity is not great for this kind of transplant, but so far I am able to live my life the way I want so I have not yet decided if I will want to have a transplant.
From an early age I alway believed it isn't the quantity of life, it is the quality. Then again, we all want more time, we want to be able to do what everyone else can. We want to grow old and grey and retire to a front porch somewhere. So weighing the idea of choosing such a gift is a battle of oneself.
I have known a few people with CHD that got hearts in their adult lives, some even can train to run marathons. The idea of never being able to run and all of sudden being able to run what most healthy adults don't dare to do is amazing and inspirational.
Choosing to live with a new heart is a gift beyond all gifts and leaves one to honor the donors life. That responsibility alone is one that bring on new challenges but the choice alone is one that I battle with every time the idea is brought up to me. Just another challenge CHD adults face.
Teri
From an early age I alway believed it isn't the quantity of life, it is the quality. Then again, we all want more time, we want to be able to do what everyone else can. We want to grow old and grey and retire to a front porch somewhere. So weighing the idea of choosing such a gift is a battle of oneself.
I have known a few people with CHD that got hearts in their adult lives, some even can train to run marathons. The idea of never being able to run and all of sudden being able to run what most healthy adults don't dare to do is amazing and inspirational.
Choosing to live with a new heart is a gift beyond all gifts and leaves one to honor the donors life. That responsibility alone is one that bring on new challenges but the choice alone is one that I battle with every time the idea is brought up to me. Just another challenge CHD adults face.
Teri
Tuesday, September 29, 2009
Living a normal life when your life is anything but normal (Part 2)
Sorry..I planned to post earlier but I have been swamped with trying to buy my first home, who knew all that was involved.
After my glenn procedure as a teenager, I was really lost and didn’t really know who I was. It didn’t helpthat I just turn 14, and had spent a month in a hospital, and two weeks later had to start my freshman year of highschool. Now what I am about to say might actually upset some people, but if I could have found the courage to say it back then to my family and friends I would have " just because I am home and no longer in the hospital, doesn’t mean I am ok and it certainly doesn’t mean life will go back to the way it was before." I deperately spent years trying to pretend that life was normal after tha,t and sometimes I cnovinced myself but I never was truly happy.
I can say I didn’t truly feel normal again till I was away in college living on my own terms, It was then that I felt that I could really be who I was and no one really knew who I was before that. No one to judge me that I once was able to climb that hill and now I can't and wants to know why. My parent pushed me to get a normal life which I am grateful for , but it was hard to know that as much as I accomplished I was never really going to be as normal as my friends. Now realize that I didn’t know any other CHD people. I guess it wasn’t till college I realized I didn’t have to fit in I just had to be myself and I think all teenagers go through that phase, CHD or not but for me it was a realization that no one can understand what it is like and people who really love me don't like to think about what it is like to be me. The only person who can really judge me, is me and once I learned that I could brush off what people say or what they think I am capable of. People who love you should always push you to be better but it is you that can only make it happen.
Teri
After my glenn procedure as a teenager, I was really lost and didn’t really know who I was. It didn’t helpthat I just turn 14, and had spent a month in a hospital, and two weeks later had to start my freshman year of highschool. Now what I am about to say might actually upset some people, but if I could have found the courage to say it back then to my family and friends I would have " just because I am home and no longer in the hospital, doesn’t mean I am ok and it certainly doesn’t mean life will go back to the way it was before." I deperately spent years trying to pretend that life was normal after tha,t and sometimes I cnovinced myself but I never was truly happy.
I can say I didn’t truly feel normal again till I was away in college living on my own terms, It was then that I felt that I could really be who I was and no one really knew who I was before that. No one to judge me that I once was able to climb that hill and now I can't and wants to know why. My parent pushed me to get a normal life which I am grateful for , but it was hard to know that as much as I accomplished I was never really going to be as normal as my friends. Now realize that I didn’t know any other CHD people. I guess it wasn’t till college I realized I didn’t have to fit in I just had to be myself and I think all teenagers go through that phase, CHD or not but for me it was a realization that no one can understand what it is like and people who really love me don't like to think about what it is like to be me. The only person who can really judge me, is me and once I learned that I could brush off what people say or what they think I am capable of. People who love you should always push you to be better but it is you that can only make it happen.
Teri
Wednesday, September 9, 2009
Living a normal life when your life is anything but normal
Living a normal life when your life is anything but normal is not only a physical challenge but it is more of a mental challenge. I know growing up I was in a constant battle with myself, the one I showed to the world, and the person I really was inside. I know this sounds sad, I and I assure you it isn't something that I like to talk about, but as I talk to more and more adults with congenital heart disease, especially ones that never knew anyone like them we all have some degree of being two people.
I think I was aware of portraying a person I wasn't in grade school. I know most of my classmates knew I had a sickness, but of course they had no idea to what degree. I remember making up excuses for not doing certain things, like running around the playground saying silly things like; " I don’t want to get dirty" things like that. When the real reason was I couldn't run. The older I got the more I told the truth, I guess I lied when I was younger because I didn’t understand why I couldn’t run, or do things the other kids could do I just knew that I couldn't do it. However the truth sometimes hurts more then the lie, I remember many times being excused of using my "condition" as many people like to call it for my advantage.
I remember my freshman year of high school I just had my Glenn shunt done, and got out of the hospital less then two weeks before school started, I had spent 23 day in the hospital, and 16 days of that in the ICU. I looked at myself in the mirror, and didn’t physically or emotionally recognize myself. I was told by the doctors not to write on a chalk board for at least a month, due to the scar that went from my breast and curved all they way to my back and stopped between shoulder blades. So there I was sitting in class, just trying to be normal, and my teacher called on me to come to the board. Explaining to her that I just had major heart surgery, and couldn't write on a chalk board, was like trying to convince someone the sky was green. Even though all my teachers were told ahead of time what had just happened to me, she somehow thought I was making it up, maybe years of teaching high school students that dont really want to be there, slowly turns teachers to believe we are just giving then excuses not to do what they want us to. Truth was I didnt care about what I was doing, I had just fought a war against my own body and barely survived I was physically still there but who I was before left no trace.
With every teenager I think there is a part of not really knowing who you are, and doing what your friends do just to fit in. I was 14 but I had been through things ,and saw things that I shouldn't have had to face till I was old and grey. That is how I felt old and grey, but I managed to spend my freshman year trying to be upbeat, social, and interested in things I could careless about. I just wanted to go home sit in front of the TV, or disappear into my room, and just be left alone. I was tired, and I know I was deeply depressed only finding joy in what I could imagine or what I could write or draw. Art was my haven from reality, and my therapy to deal with all that had happened.
Teri (HRHS)
To be continued.....
I think I was aware of portraying a person I wasn't in grade school. I know most of my classmates knew I had a sickness, but of course they had no idea to what degree. I remember making up excuses for not doing certain things, like running around the playground saying silly things like; " I don’t want to get dirty" things like that. When the real reason was I couldn't run. The older I got the more I told the truth, I guess I lied when I was younger because I didn’t understand why I couldn’t run, or do things the other kids could do I just knew that I couldn't do it. However the truth sometimes hurts more then the lie, I remember many times being excused of using my "condition" as many people like to call it for my advantage.
I remember my freshman year of high school I just had my Glenn shunt done, and got out of the hospital less then two weeks before school started, I had spent 23 day in the hospital, and 16 days of that in the ICU. I looked at myself in the mirror, and didn’t physically or emotionally recognize myself. I was told by the doctors not to write on a chalk board for at least a month, due to the scar that went from my breast and curved all they way to my back and stopped between shoulder blades. So there I was sitting in class, just trying to be normal, and my teacher called on me to come to the board. Explaining to her that I just had major heart surgery, and couldn't write on a chalk board, was like trying to convince someone the sky was green. Even though all my teachers were told ahead of time what had just happened to me, she somehow thought I was making it up, maybe years of teaching high school students that dont really want to be there, slowly turns teachers to believe we are just giving then excuses not to do what they want us to. Truth was I didnt care about what I was doing, I had just fought a war against my own body and barely survived I was physically still there but who I was before left no trace.
With every teenager I think there is a part of not really knowing who you are, and doing what your friends do just to fit in. I was 14 but I had been through things ,and saw things that I shouldn't have had to face till I was old and grey. That is how I felt old and grey, but I managed to spend my freshman year trying to be upbeat, social, and interested in things I could careless about. I just wanted to go home sit in front of the TV, or disappear into my room, and just be left alone. I was tired, and I know I was deeply depressed only finding joy in what I could imagine or what I could write or draw. Art was my haven from reality, and my therapy to deal with all that had happened.
Teri (HRHS)
To be continued.....
The Uncertain Life...
We all live our lives not knowing when it will end. I guess growing up knowing that everyday you live to see another day you were told you never get to see, is a blessing most of us with CHD don't take for granted. Of course we are only human, and we do get wrapped up in things that are unimportant, and waste time doing things we probably shouldn't, but like I said we are human.
There is a fine line I walk sometimes between being OK and not being well at all. I feel symptoms that would send a healthy person running to the ER , I however feel them everyday, even learned to control some of them, such as fainting I know when I am close to blacking out, but I am able to concentrate enough till I am somewhere safe. It doesn't always work, I have passed out in the snow in college once, but it was the only time in my life I did it in public. It is easy to accept symptoms that frighten others, even my friends and family, who really know me. I can brush them off, while they start having that panic look. I guess the truth is, I have never felt any other way. I know my body better then I think I know myself if that makes any sense.
I have to say I don't fear death, I know I have been closer to it then I care to remember, and I was born with the idea death was just around the corner. I know I don't welcome death but I do not fear it. What I do fear is not always knowing when a symptom I feel everyday will turn into something more. I know I can't be running to the hospital ever pain, or funny feeling I have. I also know that I can not ignore what is happening to me. I guess for me it is about listening to your gut, but it is a challenge that we with CHD deal with everyday.
Teri
There is a fine line I walk sometimes between being OK and not being well at all. I feel symptoms that would send a healthy person running to the ER , I however feel them everyday, even learned to control some of them, such as fainting I know when I am close to blacking out, but I am able to concentrate enough till I am somewhere safe. It doesn't always work, I have passed out in the snow in college once, but it was the only time in my life I did it in public. It is easy to accept symptoms that frighten others, even my friends and family, who really know me. I can brush them off, while they start having that panic look. I guess the truth is, I have never felt any other way. I know my body better then I think I know myself if that makes any sense.
I have to say I don't fear death, I know I have been closer to it then I care to remember, and I was born with the idea death was just around the corner. I know I don't welcome death but I do not fear it. What I do fear is not always knowing when a symptom I feel everyday will turn into something more. I know I can't be running to the hospital ever pain, or funny feeling I have. I also know that I can not ignore what is happening to me. I guess for me it is about listening to your gut, but it is a challenge that we with CHD deal with everyday.
Teri
Friday, August 28, 2009
Saying Goodbye to the Last Son.. Ted Kennedy
I usually not one to talk about people I don't really know. I guess being from Massachusetts somewhat makes you know the Kennedy's they are hard to miss around here. There presence even if many died way before I was born still lingers on every street especially in Boston. Teddy as he is know around these parts treated everyone as if they were the most important person in the world. We all know Teddy had faults, and made some awful decisions in his life, and face immense sadness, but despite it, or even because of it perhaps he became one of the greatest politician this world has ever see.
We as American would not be living life as we know it without Teddy. Say what you will of his character, or choices he made through his life. His work lives through all of us. The laws he created and fought for we take for granted everyday. (Civil Rights Act of 1964, the Voting Rights Act of 1965, the 1990 Americans With Disabilities Act, the 1993 Family and Medical Leave Act and the Kennedy-Hatch law of 1997, minimum wage laws.) these are just a few of the legislation he was was vital force in getting passed.So, this weekend Massachusetts says goodbye to the last son and the US says goodbye to the man who shaped our lives even if we didn't agree with him we owe him allot for where we are now.
As a person who has to depend on health care to survive, I know because of him I can take time from work to have surgery and be able to go back without being discriminated against or loosing my job. Every disabled American, everyone on Medicaid and Medicare can thank Kennedy for all they have.
We as American would not be living life as we know it without Teddy. Say what you will of his character, or choices he made through his life. His work lives through all of us. The laws he created and fought for we take for granted everyday. (Civil Rights Act of 1964, the Voting Rights Act of 1965, the 1990 Americans With Disabilities Act, the 1993 Family and Medical Leave Act and the Kennedy-Hatch law of 1997, minimum wage laws.) these are just a few of the legislation he was was vital force in getting passed.So, this weekend Massachusetts says goodbye to the last son and the US says goodbye to the man who shaped our lives even if we didn't agree with him we owe him allot for where we are now.
As a person who has to depend on health care to survive, I know because of him I can take time from work to have surgery and be able to go back without being discriminated against or loosing my job. Every disabled American, everyone on Medicaid and Medicare can thank Kennedy for all they have.
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