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October 7, 2009 - Day 170

Posted Oct 07 2009 10:03pm
I knew that last night would be a long one because of the Dexamethasone that I received during the Velcade IV session and it was.
I was wide awake all night, so I answered mail, finished reading the book on my Kindle and started reading a real book with a jacket and hard covers called "Soul of a Dog" by Jon Katz in which he explores the eternal question of whether animals have some sort of soul or not. I haven't read enough to find out what his final conclusion is, but I think he is going to conclude that an animal's life is primarily about food and shelter and not much else, no matter what traits we as humans want to attribute to them.
Those nights of sleep deprivation caused by the steroids are a great time for catching up on some of the tasks that never get done during the normal course of a day.
Today I am wracked with fatigue but sleep still won't come even with some Ativan because I am just too jacked up from the steroids.
Now the fun comes as I wait for the infamous crash to take place, the infamous crash in which I just go catatonic and become numb to the world around me, a weekly occurrence these days.
The ups and downs of this treatment are just a little hard to bear sometimes because they just never seem to end, there is never a day of escape from it all.
The docs need to figure out a way to give us patients that one day away from it all when we can recoup with a straight head. Wishful thinking, but it ain't going to happen.
I would like to tell you about Tim and Connie Hornbeck, the founders of Secure Harbor.
In April of 2008, Tim was diagnosed (after several months of misdiagnoses) with Primary AL Cardiac Amyloidosis.
Tim chose The Boston University Amyloidosis Treatment and Research Center as the facility he wanted to treat his condition.
While in Boston, they saw for themselves the legendary cost and lack of housing available on both long and short term leases.
Secure Harbor (a 50(c)(3) Ohio non-profit organization) was formed to address this need, providing temporary housing while a family member is undergoing evaluation or treatment at BU and to help create a broader awareness of the symptoms of Amyloidosis.
Through the organization, they have obtained a long term lease on an apartment that is in downtown Boston, just a short distance from BMC.
The apartment is in a beautiful complex known as Church Park and meets all the out-patient requirements for an individual undergoing treatment.
It is truly a god send to have something like this available for families that are most likely already heading toward financial difficulty forced on them by their fight with AMY and uncooperative insurance companies.
There are many families who must compromise the treatment of their patient because they do not have the financial resources required. This organization addresses one of their basic needs in a comfortable, safe and secure setting.
In addition, Secure Harbor is dedicated to spreading the word about AMY by providing information to physicians, raising awareness in the first line of defense against this insidious disease.
Besides Tim and Linda, there is a volunteer staff that maintains the website, makes appointments for the apartment and even greets families when they travel to Boston.
Give them a look, they are a worthy cause to support.
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