While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets." This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with. To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure. Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time. He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
So with each new hip pain, knee pain, whatever new obstacle thrown in my path: I still tell myself this every morning. It works.
By the way ...I still love the small wonders around me. Yes even the rain and cold.
Showing posts with label pulmonary hypertension. Show all posts
Showing posts with label pulmonary hypertension. Show all posts
Thursday, January 28, 2010
Friday, July 31, 2009
Memories
I can still recall how my life transpired from 17- about 25. Before the ADA (Americans with Disabilities Act) anyone with a disability feared applying for a job. Even worse you were afraid to admit you had any form of medical issues. There were organizations that employed ONLY the disabled, so I tried one of those for a few months. It only took a few months long to realize:
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
Friday, July 24, 2009
Hearing the diagnosis for the first time
Wow! let me see this day was so long ago for me, but I can still remember parts of the day as if it were yesterday.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
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