I would like to say a heart felt thank you to everyone who has been following my journey into the world of Amyloidosis.
Jo Ann and I have received many words of encouragement and advice from strangers who we now consider friends, even though we have never met them.
Some of the letters we have received have been gut wrenching and some of them have been light hearted.
It is important for you to remember that when a family faces a crisis such as the one we are dealing with, they can feel very isolated from the world around them.
They are no longer able to participate in the activities that were routine in their lives and gave them the opportunity to interact with their peers.
Their days are controlled by the condition of the patient, the time consuming doctor's visits, the inevitable financial burdens and the mental and physical fatigue of dealing with their calamity.
It is difficult to make plans to do much of anything because they never know what the next day will bring with it.
Will it be a good day after everyone had a good night's sleep or will it be lost in a fog after tossing and turning for hours, consumed by the worries of dealing with their predicament?
Will the patient have enough get up and go to participate in outside activity and if so, how much?
Will they all just be "burned out" from the constant stress that something like this places on their minds and bodies?
The important thing to remember is that they are still there and they are for the most part, the same individuals that you have always enjoyed the company of.
Is some of this isolation the result of friends and acquaintances who are not able to accept what they see and grab it head on? I think so.
Perhaps these people are in more of a state of denial than even the patient and his family and as such, find it easier to just avoid contact so they do not have to face the fact that this could just as easily be happening to them and their family.
They do not deal with the daily complications that the patient's family do and by avoiding contact do not have to admit that "This could be me."
If you know someone who is now fighting a fight or if you meet one in the future, try to understand that they still need you, perhaps now more than ever.
A kind gesture, a drop in visit or a quick hello on the phone can do wonders for their attitude.
It lets them know that they are not alone and that they are still part of your life.
It helps them keep the hope that someday this will all be over with and that they will once again be able to enjoy the fruits of life rather than just the bitter pills they are now forced to swallow.
Jo Ann and I have received many words of encouragement and advice from strangers who we now consider friends, even though we have never met them.
Some of the letters we have received have been gut wrenching and some of them have been light hearted.
It is important for you to remember that when a family faces a crisis such as the one we are dealing with, they can feel very isolated from the world around them.
They are no longer able to participate in the activities that were routine in their lives and gave them the opportunity to interact with their peers.
Their days are controlled by the condition of the patient, the time consuming doctor's visits, the inevitable financial burdens and the mental and physical fatigue of dealing with their calamity.
It is difficult to make plans to do much of anything because they never know what the next day will bring with it.
Will it be a good day after everyone had a good night's sleep or will it be lost in a fog after tossing and turning for hours, consumed by the worries of dealing with their predicament?
Will the patient have enough get up and go to participate in outside activity and if so, how much?
Will they all just be "burned out" from the constant stress that something like this places on their minds and bodies?
The important thing to remember is that they are still there and they are for the most part, the same individuals that you have always enjoyed the company of.
Is some of this isolation the result of friends and acquaintances who are not able to accept what they see and grab it head on? I think so.
Perhaps these people are in more of a state of denial than even the patient and his family and as such, find it easier to just avoid contact so they do not have to face the fact that this could just as easily be happening to them and their family.
They do not deal with the daily complications that the patient's family do and by avoiding contact do not have to admit that "This could be me."
If you know someone who is now fighting a fight or if you meet one in the future, try to understand that they still need you, perhaps now more than ever.
A kind gesture, a drop in visit or a quick hello on the phone can do wonders for their attitude.
It lets them know that they are not alone and that they are still part of your life.
It helps them keep the hope that someday this will all be over with and that they will once again be able to enjoy the fruits of life rather than just the bitter pills they are now forced to swallow.