I realize that yesterday's post was not very pleasant, but I felt like it was time to discuss my recent epiphany about my condition and that by doing so, it would allow me to accept this next stage in what seems to be the future that my family and I are going to confront.
It surprised me that several people came out of the woodwork and emailed me to let me know that they were in the same situation, but unable to express their thoughts and feelings about it.
They expressed their appreciation to me for giving them the voice that they needed to explain how they felt to their caregivers, families and friends.
I have been lucky to have people around me who, to this point, have been able to accept my complaints,
paranoias, aches and pains, demands and confusion and see them in the context that they are presented.
The stories I received today were the real facts and figures about living with AMY, no sugar coating, no vague descriptions of symptoms, just the raw facts about dialysis, drug interactions, pneumonia, defibrillators, unconsciousness, steroid crash, loss of appetite, dead taste buds and a myriad of bodily function problems.
This is what it is really all about.
It ain't no joke.
Because we have never known anyone with this disease, unlike say cancer, we have had no experience with the symptoms and progression of the disease.
All of the research and reading that we have done is sadly lacking in details about the day to day realities of living with AMY and what to expect down the road.
There are no descriptions of the effects of the drugs, the problems that cardiac patients face, the problems with edema and so on.
Beyond the physical issues, there are countless mental health issues that need to be described and discussed. These may be the hardest to take care of as they can't be solved with a doctor's office visit, a pill, a low sodium diet or a blood test.
The severity will depend on each and every individual and will have to be treated on a case by case basis, maybe even on a day to day as well.
This information will only come from those who are living it.
Bring it on to me please, because I have no idea what I am in store for.
Granted, every patient is going to be different but there are common threads that weave through
everyone's story.
Let the true story be known, maybe it will help shock people into action and heightened awareness.
Those of you out there who are living with AMY need to let people know how she really is and how it feels to have her harassing you.
Let people you know just how strung out you are, let them know what scares you from day to day, make them understand that AMY is just as serious as anything the American Cancer Society can pitch in their
PSAs.
When you share your experiences, it will help your brothers and sisters who are fighting the disease to know that they are not alone in the middle of the night when they can't sleep because of the sores in their mouths or when they are flailing under the sheets because the
Dexamethasone has become the principal fuel for their engine.
If we remain silent and suffer in the sanctuary of our homes, how can we expect to garner public support for our side?
Every movement that has gained recognition has done it by being vocal and loud.
This is easy for me to say today, because I am not totally incapacitated yet, but if we don't keep up the noise, the insurance companies will continue to deny our claims and our disease will always be an orphan, wandering aimlessly and never finding the home that it needs.
It surprised me that several people came out of the woodwork and emailed me to let me know that they were in the same situation, but unable to express their thoughts and feelings about it.
They expressed their appreciation to me for giving them the voice that they needed to explain how they felt to their caregivers, families and friends.
I have been lucky to have people around me who, to this point, have been able to accept my complaints, paranoias, aches and pains, demands and confusion and see them in the context that they are presented.
The stories I received today were the real facts and figures about living with AMY, no sugar coating, no vague descriptions of symptoms, just the raw facts about dialysis, drug interactions, pneumonia, defibrillators, unconsciousness, steroid crash, loss of appetite, dead taste buds and a myriad of bodily function problems.
This is what it is really all about.
It ain't no joke.
Because we have never known anyone with this disease, unlike say cancer, we have had no experience with the symptoms and progression of the disease.
All of the research and reading that we have done is sadly lacking in details about the day to day realities of living with AMY and what to expect down the road.
There are no descriptions of the effects of the drugs, the problems that cardiac patients face, the problems with edema and so on.
Beyond the physical issues, there are countless mental health issues that need to be described and discussed. These may be the hardest to take care of as they can't be solved with a doctor's office visit, a pill, a low sodium diet or a blood test.
The severity will depend on each and every individual and will have to be treated on a case by case basis, maybe even on a day to day as well.
This information will only come from those who are living it.
Bring it on to me please, because I have no idea what I am in store for.
Granted, every patient is going to be different but there are common threads that weave through everyone's story.
Let the true story be known, maybe it will help shock people into action and heightened awareness.
Those of you out there who are living with AMY need to let people know how she really is and how it feels to have her harassing you.
Let people you know just how strung out you are, let them know what scares you from day to day, make them understand that AMY is just as serious as anything the American Cancer Society can pitch in their PSAs.
When you share your experiences, it will help your brothers and sisters who are fighting the disease to know that they are not alone in the middle of the night when they can't sleep because of the sores in their mouths or when they are flailing under the sheets because the Dexamethasone has become the principal fuel for their engine.
If we remain silent and suffer in the sanctuary of our homes, how can we expect to garner public support for our side?
Every movement that has gained recognition has done it by being vocal and loud.
This is easy for me to say today, because I am not totally incapacitated yet, but if we don't keep up the noise, the insurance companies will continue to deny our claims and our disease will always be an orphan, wandering aimlessly and never finding the home that it needs.