LymeNet Flash: Just When I think it is Time to Stop Fighting a Door Seems to Open

This is topic Just When I think it is Time to Stop Fighting a Door Seems to Open in forum General Support at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/12499

Posted by hwlatin (Member # 4123) on :

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.

Posted by HEATHERKISS (Member # 6789) on :

hwlatin,

What a beautiful letter.

Prayers sent your way and to touch the Pres.'s heart.

Heather

Posted by laserred (Member # 6796) on :

Wow, hwlatin, that's goin' to the 'TOP"....great job, super letter!!! Way to go! Three cheers for you!

I'm curiously waitin' to hear what the response is!!!!!

Who knows, maybe, just maybe it will actually get "HIS" attention....

Again, great job,
~laserred~

Posted by cbb (Member # 788) on :

Outstanding letter!
Take a bow for a job well done!!

You are fortunate that Lyme disease has not taken away your ability to express yourself so beautifully.

I suggest that all of us follow your lead and write letters about the situation in our families and our states.
Collectively, they could be known as "The Faces of Lyme Disease."

Will be praying that the President takes your letter to heart & changes will begin to happen.

Posted by map1131 (Member # 2022) on :

Wow hwlatin, you go right to the top. Your letter to him was very impressive. Thank you for trying to make a difference in our fight against lyme disease.

Take care and God Bless You,

Pam

Posted by kam (Member # 3410) on :

Thanks for taking the time to do this.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by hwlatin:

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.

Great letter! Where's the response? Or did I misunderstand??

------------------
oops!
Lymetutu

Posted by bg (Member # 46416) on :

HW, double wow; you wrote such a sincere letter about the lyme concerns of yourself & sons and laying NO BLAME on him or anyone else. Very effective that way.

I admire the way you worked God in there knowing his strong believes, Pope John Paul, and ending with I pray for you nightly too.

Yes, please keep us up to date on your responses! Thanks for opening the door for ALL OF US LYMIES!

Bettyg, Iowa

Posted by hwlatin (Member # 4123) on :

I received a letter and then on Friday a phone call from someone in the Department of Health and Human Services. I will call back that number on Monday.

[This message has been edited by hwlatin (edited 01 May 2005).]

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by hwlatin:
I received a letter ....

and you're not going to share!!??

Posted by hwlatin (Member # 4123) on :

I will scan it for you all tomorrow, I have spent the better part of today at the ER, had massive cluster headache. First bad headache in three years. Did not mean to make is sound like I was trying to keep it secret.

Posted by Eilee445 (Member # 7317) on :

I just read your touching letter to President Bush, the wording was beautiful, but the pain that I felt from between the lines made me cry. I'm at a stand-still with my Lyme, not knowing whether to continue to fight or simply give in to the problem and accept a lesser quality of life. My husband is extremely positive and keeps up my spirit, and I've been telling myself that "God gave me this problem, because he knew I could handle it." It helps to think this way, it gives me hope and a sense of control. I'm new to this forum but already I feel comfortable. I'll be looking for President Bush's reply.

Posted by bg (Member # 46416) on :

HW,

hope you're feeling better now after being at ER w/your severe migraine headache...

Can't wait to read what your letter reads....way to go girl!

bettyg

Posted by lymiecanuck on :

A great letter. Showed no bitterness which is amazing!!! Good for you.

Lymiecanuck

Posted by pippy (Member # 6005) on :

Lump in my throat....what a beautiful heartfelt letter that speaks for all of us. thank you.