Sometimes I get so confuesed about whether it matters at all, writting letter after letter. I wrote a letter to Predisent Bush several weeks ago that was followed up with a letter from the White House to me and a call I have yet to be able to return due to timing.Dont know where this door will lead to, but I guess time will tell. I do look at response time and 12 days from when I sent the letter to a response seems to be sincere, so who knows.
Here is a copy of my letter:
April 12th, 2005
The Honorable President George W. Bush
1600 Pennsylvania Ave
Washington, D.C. 20500
Dear Honorable President Bush:
I am writing this letter as a citizen of this country that has been deeply impacted by Lyme disease. The last 8 years of my life have been filled with pain, near death experiences and deep sadness watching my children, in addition to myself suffer endlessly from this disease.
I have the utmost respect and admiration for they way you have handled your Office. Your resolve to do what is right even in the face of controversy, your faith and devotion to God and your compassion for those who are sick or unable to take care of themselves are traits that I deeply value and have pointed out to my sons on many occasions.
I know there are so many critical issues that you have to deal with on a daily basis, but Lyme disease is a major issue that hundreds of thousands of us have to face on a daily basis. I know how much you value your family; it is such an example for all of us to follow. So I know you can understand as a parent when I say how much it pains us to watch our children doubled over in pain and the doctors unable to do anything for them.
I have literally taken my sons across country from California to Connecticut to get them treatment. The reality is that if it were not for one courageous doctor out here in California, my sons and I might today still not know what we were suffering from. It took over 3 years, a near fatal episode of TTP, three months in a hospital and 40 doctors before I was officially diagnosed. My diagnosis led to my son's diagnosis.
Since 1999 I have been on disability and have used my entire savings along with what medical insurance I have to survive to this point. There is not a day that goes by that I do not have to argue my case for treatment to the insurance company. Everyday I watch my sons; worry about what is coming next for them and whether or not I will be able to afford their next treatment or set of medications.
On top of all of this, with the exception of a few doctors, we are faced with a hostile medical community that is unsympathetic to our suffering and accuses us of being mentally ill and trouble makers. This is so far from the truth, but adds an additional layer of stress that becomes almost unbearable to handle.
The events of the past week have inspired me to reread some of the writings of John Paul II. In particular his views on suffering and how it makes us stronger and closer to God. This has given me a real sense of peace. Even with this peace, I believe that there comes a point we have to limit the suffering.
My story is repeated over and over again. There are a large number of children that are suffering from this disease and the numbers are growing. I know this has to be unacceptable to you. The CDC and NIH have taken positions that just do not make sense. These positions have led to a large number of misdiagnosis's and inadequate treatment. I appeal to your compassion to address this issue. Without your support the cycle of suffering will continue.
I appreciate your time in reading this letter and in any support you can give us to protect our rights to receive fair and appropriate medical treatment. I want you to know that I say a prayer for your family every evening and I thank you all for the sacrifices you have made for this country.
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