It has now been almost seven months since Jo Ann and I were first introduced to our new world of Amyloidosis.
In those seven months, we have acquired a wealth of information and understanding that we would gladly have never been privy to.
I never had any particular interest in edema and motility and I know that she has never shown any partiality to INR testing and Light Chain Assay tests let alone the light chains themselves.
It was almost seven months ago that our world was turned upside down and shaken beyond recognition, never to be the same again, never to see fulfillment of many dreams that we had for it.
It has been almost seven months of learning and developing a new relationship, she as a caregiver and protector and me as a patient, sometimes helpless at best.
These months have taught us to never take the next day for granted because there is no sure thing come tomorrow morning. What happens on Tuesday cannot be used to measure Wednesday. Sunday? Forget about it. Every day must be taken for what it brings, hour by hour some times.
During the past months we have been taught an immeasurable lesson about bureaucracy whether it be insurance companies, the Social Security Administration or those heartless credit card companies.
We have learned about people like Warren who would give us the shirt off his back and we have learned about people who won't give you the time of day.
We have learned about drugs that we never knew existed, how to pronounce their names fluently, what the possible side effects are and what interactions they may have with another.
We have learned about (and from) people all over this world who are fighting AMY alongside us.
We have shared their happiness when the dark turned to light for them and we have mourned them when they lost their fight.
The biggest lesson that I think we have learned is that life is precious and that too many people take it for granted, not believing the old adage about living everyday like it could be your last.
We have no idea at this point where we are heading with my condition.
Due to the damage that my heart has sustained from this disease, I have to take blood thinners to help prevent strokes and heart attacks. What this means to our future, we have no idea. If something happens, we'll deal with it and if not, so much the better. Will I wake up tomorrow and the next day? We have no idea, so we can't look back, we must look forward.
The remission rate for this disease only falls into the 25-30% range so the prognosis isn't that great.
It is for this reason that we are learning to look forward to each day and find something good to take away from it, whether it is simply going for a car ride or that rarest of occasions these days, a trip to a restaurant.
AMY has certainly humbled us and taught us just how vulnerable we human beings are, whether we want to believe that or not.
This is a lesson to be learned and taken to heart.
In those seven months, we have acquired a wealth of information and understanding that we would gladly have never been privy to.
I never had any particular interest in edema and motility and I know that she has never shown any partiality to INR testing and Light Chain Assay tests let alone the light chains themselves.
It was almost seven months ago that our world was turned upside down and shaken beyond recognition, never to be the same again, never to see fulfillment of many dreams that we had for it.
It has been almost seven months of learning and developing a new relationship, she as a caregiver and protector and me as a patient, sometimes helpless at best.
These months have taught us to never take the next day for granted because there is no sure thing come tomorrow morning. What happens on Tuesday cannot be used to measure Wednesday. Sunday? Forget about it. Every day must be taken for what it brings, hour by hour some times.
During the past months we have been taught an immeasurable lesson about bureaucracy whether it be insurance companies, the Social Security Administration or those heartless credit card companies.
We have learned about people like Warren who would give us the shirt off his back and we have learned about people who won't give you the time of day.
We have learned about drugs that we never knew existed, how to pronounce their names fluently, what the possible side effects are and what interactions they may have with another.
We have learned about (and from) people all over this world who are fighting AMY alongside us.
We have shared their happiness when the dark turned to light for them and we have mourned them when they lost their fight.
The biggest lesson that I think we have learned is that life is precious and that too many people take it for granted, not believing the old adage about living everyday like it could be your last.
We have no idea at this point where we are heading with my condition.
Due to the damage that my heart has sustained from this disease, I have to take blood thinners to help prevent strokes and heart attacks. What this means to our future, we have no idea. If something happens, we'll deal with it and if not, so much the better. Will I wake up tomorrow and the next day? We have no idea, so we can't look back, we must look forward.
The remission rate for this disease only falls into the 25-30% range so the prognosis isn't that great.
It is for this reason that we are learning to look forward to each day and find something good to take away from it, whether it is simply going for a car ride or that rarest of occasions these days, a trip to a restaurant.
AMY has certainly humbled us and taught us just how vulnerable we human beings are, whether we want to believe that or not.
This is a lesson to be learned and taken to heart.