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.
Friday, July 31, 2009
Monday, July 27, 2009
Remembering Daddy
I've been absent from blogging for the past few days due to severe thunderstorms, but mainly because I was attempting to finish designing a Christmas ornament or Celebration.
My daddy passed away in 2005. Each year the funeral home holds a celebration on life around Christmas with each family placing an ornament on the tree in remembrance. Each year a new ornament is added along with ornaments from previous years.
This year is my turn to make the ornament.
This has taken much thought, mainly because :
1. I was Daddy's girl
2. I miss him more each and every day.
3. I wanted to honor him in the best way I knew how.
Here is the ornament I was finally able to finish....after much crying each time I tried to work on it.
Inside the card reads:
His favorite color-
Like his smiling eyes is blue
His heart-
Made of pure gold
His Faith- Unshakable
He placed everything in God's hands
His family-
Fragile and precious , like the finest crystal
The work on this piece- imperfect
Just like his "baby girl"
Loving husband, son, brother, uncle, grandpa, and even
a great...BUT
The most wonderful Daddy in the world
God truly broke the mold when he created you.
You are missed more with each passing day.
We Love you.
Just a reminder we all have to deal with difficult times. My daddy was there with me during my first 2 organ transplants. He was too ill to be with me for my kidney transplant. I made it through thoughts of previous transplants and him being with me, laughing. When I was discharged from the hospital to go home, he was admitted ( in a different city). I stressed if I would get to see him before he died and finally decided they could have my kidney-I HAD to see daddy again. He'd given me so much my entire life. I did see him in the nursing home a few weeks post transplant, he didn't know me. He died peacefuly in his sleep later that night. Immediately following his death I celebrated his life while others mourned his passing. My daddy was now free of hospitals, medicines, and being weak. Just as I've wanted to be my entire life. He was now whole again, enjoying that pair of wings he'd earned. Now is when I miss him, I mourn him, and I cry each time I think of his smiling face. His strength lives in me, I can survive. But oh how I wish I could have a daddy smile and hug.....
The story about "Pennies from heaven" is true. Each time I see a coin lying on the ground. I pick it up. Look to the clouds and say" Hi Daddy, I love you too."
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.
Wednesday, July 22, 2009
Welcoming a new day & ready to fight
Well I've done my morning routine medically speaking, walked our boys and now time to work on websites and web stores. I uploaded a link to my Etsy store, please give me feedback with any suggestions.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
Thursday, July 16, 2009
Patches
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
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