I am ---------. We have more in common than you may realize. I am a parent. I am a United States Citizen. I am a Lyme Disease patient. I am 38 years old.
I plan to write to you every day, until I hear from you personally. That may be considered as a national security threat; personally I don't think I care anymore. If that is what it takes, then I will do this to get someone's attention that has the power to do something about this, to influence this situation that you now find yourself in as well.
For me, the hardest part besides the medical community treatment I have received, is having my children look at me with worry in their eyes because they know or don't know just how bad things really are - my thoughts when I look at them from a far - will I be there to watch them walk down the isle, or give birth to their children? How much longer do I have with them? More importantly, them with me?
You have been leading a great war, one of great controversy. I have defended you so many times, not knowing if your choices are right or wrong, but certainly knowing that I would not wish to be in your shoes for anything.
However, there is a war going on right here in your own country that is taking the lives of so many. It doesn't always kill, but ruins the quality and diminishes so many lives around it. I never thought I would be glad that someone had this disease, but I must say that I am glad that you have it. Do you believe that things happen for a reason? Well I do. I just never know what or why sometimes.
I have spent the past 8 1/2 years of my life trying to 1. Take care of my family 2. Figure out what was wrong with me physically. I have lost count of the number of doctors I have seen and certainly do not wish to calculate the amount of money I have spent. And I certainly will not add in detail, at this point, the amount of emotional suffering I have gone through, mostly at the mistreatment of the medical community.
In August of 2007 I finally figured it out. However, I was met with continued adversity from day one. In September I finally had a blood diagnosis of Lyme. Now I am entering treatment.
As great as this sounds, I have had to fight, kick, scream, and put everything I have managed to establish, which is not much unfortunately, at risk, including my parents resources and most probable my doctors futures to practice, in order to get the treatment I need. Top this off the fight I am going to endure with the insurance company for they are only going to treat me for a short period of time. And that coverage is going to be a terrible feat to overcome as well.
I don't meet the CDC guidelines. But I know I have Lyme. And I know that you know that the guidelines are not accurate. Why has this not been challenged already? You have the power. Why have you not employed it? Explain this to me.
When I first figured out what was wrong with me I was elated. I finally had a name I could put with this and I could be treated. Then I began to study, research and my heart sank even further....page after page of controversy, political, financial, medical....and answers? - no -contradictions everywhere. The only decent results seen are the ones that will financially bind an average -middle to lower class citizen and unfortunately the prolonged illness has created just that! And coverage is emphatically denied.
How can it be acceptable for long term antibiotic treatments of other bacterial illnesses and not Lyme? Have you done 2-4 weeks and been cured? Did you have to go outside the IDSA guidelines to receive improvement? Is it okay for you because you are the President, but not for the average citizen trying to survive in this country? Did the CDC guidelines kick in for you? Where you one of the lucky ones? I don't think so I think and believe in my heart that you too have Late Disseminated Lyme Disease, which is another fancy word for Chronic Lyme which they say doesn't exist. Do you believe that? I know you don't.
Where is your voice in this? I haven't heard it. It is needed. I beg you to please use your voice. Use your experience to help the thousands among thousands suffering. Protect the doctors who are willing to help us and risk their own future by standing true to the oath they took.
It only takes an utterance of a word from you to move mountains in this country. I am begging you to speak it. You have the power to change more lives in one speech or letter or push legislatively at this moment than any other in your lifetime on this earth.
I believe everything happens for a reason. Be the reason.
Sincerely and Respectfully," ----------------------------------------------
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
You've inspired me. Excellent letter.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
May God Bless you.. cjnelson, I think he already has. I know that's hard for some to understand. How can one be blessed when having a chronic illness like lyme? It's how you fight it. You're a fighter. It will get better.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
cjnelson, please continue to post your daily letters here also. The first one you wrote was quite moving, and I thank you from the bottom of my heart for sending it. God bless you.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
cj, WOW!
another wonderful writer writing from her heart on this one! good for you! you covered many bases in a NON-threatening way.
please copy also: *****************
your governor, SPEAKER OF HOUSE, NANCY POLUSHI, sp;
your state senators and state house reps in DC!
how about CDC, JULIE GERBINGTING, SP ... CAN BE FOUND IN ACTIVISM!
again, well done, and keep up the good part on BEHALF OF ALL OF US WITH CHRONIC LYME!
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I consider a letter of THIS quality an inspiration from "GOD"!!
Keep up the very real deal campaign!!!
I used to be able to write such letters BUT now Ah, Duh, and umm is too hard to string together!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
This is a very good piece of writing,cj, and I hope you get a reply. That is what others are saying here. Seemingly, they didn't see the "Please send yours!" in your subject heading.
Here's the problem:
Your letter will never be read by the President. Probably, the first paragraph and a half will be read by a reader in some pretty remote office.
If you e-mailed it, you will be getting an e-mail that says they don't have time to respond to every e-mail. If you snail-mailed it, you will get a similar letter.
Here is what can make a difference: Numbers. If they get several letters on the same subject, it grabs their attention a bit more.
If we CC the letter to the Secretary of Health and Human Services http://www.whitehouse.gov/ask/ and any other Health officer we can think of, it will call even more attention.
For people too busy or too shy to write, furnishing a model letter that they can copy and paste, and the addresses - e-mail and snail mail -for sending the letter, we will get numbers responding.
I will send my own letter.
With a little ingenuity you can put together a shorter version of your letter for people to use. Add the addresses for them to use, and I think you will have more people writing. The pile of letters on that subject will get more attention.
By the way, in my letters,I will mention the bipartisan Bills before the house and senate to provide for prevention education, education of doctors and the medical community, and research on tick-borne diseases, and urge the President to support those bills.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
GREAT idea!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
As I stated in my previous letter, I do plan to write to you each and every day on this topic until I receive a personal response from you. I hope you realize that a written response is truly not what I am expecting. But a human response, a one on one conversation. I don't expect it to be in person by any stretch. I have no delusions of grandeur and I am not some psycho woman. I am simply a fellow Lyme sufferer. And believe me, with this disease, it takes one to know and understand one.
This is my second letter to you. I am hoping that you had a decent day today. I know how sporadic they can be with this disease. For me every day is a question. I can only imagine what it is like for you, in your position. Some days are ok for me still. I can get through just fine, although most don't realize how difficult it really is. I still look ok, most days. Other days I just look tired. But inside is a struggle. Trying to find the right words, I know that I know them but cant bring them up for a few seconds. Frustrating, isn't it. This is one of my biggest frustrations personally with this disease. I am an intelligent woman so when I find myself floundering to pull up what I know that I know, well, it can be a challenge.
I know that so many other people out here struggling with this disease are waiting for someone, somewhere with the right amount of pull to do something for them. I know I am only one of them. As I sad, my children are among them too. I am sure they would love to have their mom back to full capacity sooner rather than later. I know there is an answer out there to this madness. I simply want someone who can do something about the madness surrounding it to demand it.
How has this affected you in your daily life? In your position? Your family? Has it been as difficult as it is for us? I can't imagine it is any less difficult. I talk to so many struggling with this disease and we all share this common bond. It actually is quite freeing having others who fully understand what you are dealing with. I know my family tries to understand, they truly do. But unless you are facing this, you just don't quite get how much it encompasses and effects. Those who do get it are suffering as well. They understand. I understand. I am certain you do as well.
Still waiting for your voice to be heard. I cannot imagine at some point it won't be. Depending on how long you have been dealing with this, that is. If not for too long, then it may be some time yet. If it has been a while, then I suspect we will hear your voice much sooner.
Again, I do hope you have had faired well on this day. It hasn't been too bad a day for me.
Sincerely and Respectfully,
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi,you will get an automatic responce letter.
Been there done that during the Clinton time.
MADDOG
Posts: 4001 | From Ohio | Registered: Oct 2000
| IP: Logged |
posted
It matters NOT what others do but what I do. I have no control outside of my own actions.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I wrote the senior Bush years ago and got a personal letter. I thought it was a form, but it turned out to be authentic, and responded very specifically to my verbage.
I heard he was a good letter writer, hope his son follows that lead.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Dear Mr. President,
Because you,too, had Lyme disease, I am writing to ask you to have your administraton take a close look at what is being done for others who have this infection.
It has been over 30 years since the disease was identified, and we are almost no closer, nationally, to a reliable test, well-defined treatment, physician education, and public awareness than we were in 1975.
There are two bills before Congress (new ones have been proposed every session for years) which are well-considered methods of approaching all the issues defined above, HR-741 and S-1708.
These bills would provide for research to find a reliable test to prove when one has the disease and when it is cured.
Treatment of the disease would be studied and best methods developed to treat this disease which has a myriad of symptoms and progresses differently in almost every patient.
Physicians would be properly educated and would include Lyme disease in a differential diagnosis.
They and the public would be aware of the dangers of tick-bite,would know how to protect hemselves, and what to do if bitten.
The NIH, CDC, and FDA would try to fulfill their mandates and work with the medical community including those who are experienced in treating the disease.
I do hope you are fully recovered and that you will protect yourself and your loved ones by helping to promote awareness of the danger and seriousness of tick-borne diseases.
Most important for you is to know that there is no immunity against Lyme disease. Another tick-bite and you could go through it all again.
Sincerely,
That is my letter, and I offer it to anyone who wants to use it as their own as is or with any additions or editing they see fit.
posted
Reality has sunk in after sending letters to Presiden George Bush about Lyme Disease and it is most unfortunate.
As some of you know I had begun writing to the President. After my fourth letter I came across some new information (new to me) and I realized that my efforts were not only futile but quite possibly a dangerous place to put my efforts.
I have read many things about the potential biowarfare concept with Bb. A part of me considered it a possibility but another part of me denied it. After receiving additional information, I now have moved solidly to the other side of the coin fully and belive it more probable.
Some may say that I have allowed the conspiracy thoughts to take over, however, stepping out and looking at the situation on a whole, well- it is what it is.
It saddens me quite frankly. I love my country. I love being a US Citizen. I understnad that - in all things - there is evil and there is good. And somewhere in between is the truth. I will not sway from my stance on this Nation for it offers me more than any other country, like the freedom to post this!
My truth is simply this. I dont care at this point if the spread of this disease was a man made mishap in our country. To me, if that is the case, and there is no cure being released, as it could be secretively, then there is not really a cure for it. There are ways to put this disease into remission as has been evidenced by many personally. And maybe that is all I can hope for.
However, hoping that somewhere along the way the political mess will clear is not something I can fully put my efforts into. For it is too convuluted and out of control and they obviously know it. Even more than we do.
We dont think too much of the fact that we have nuclear weapons that can be unleashed at the push of a button. We all know that biowarfare is an active means of war and destruction. And the creation of one that could wipe out millions, being passed by human contact that is so disseminated that it would catch an entire nation off guard and scrambling, scratching their heads to figure it out, would be the ultimate!
So now, here we are. A botched potential spreading so rapidly they cannot alter thier methods of reporting else the reality would be so large it would come back upon them because it would open pandoras box.
I understand why there are not changes. An epidemic this large that could be tied to our own government would/could create havoc in the stability of our nation.
There will be no major alterations.
The very best we can hope for is that we raise enough money to fund enough scientist who are willing to address our fate and one day find a way to eradicate or control the Bb and other co's in the human system.
In the mean time, we have to stay together to support one another, lift one another up and keep our hope alive.
With that said, I pray that everyone in this community and those others that are established, will remember that we do not yet have the answers to this disease. And that the only thing we all need collectively is encouragement and support. We can share what works for us or what has worked for us or the information that we come across as the progession of knowledge grows.
But anything beyond that is not yet there. There are no difinitive answers - not in conventional medicine or alternative. Therefore the internal battles that we continue to see on the forum are as futile as banging our head against a wall in hopes of acquiring an answer or direction for a cure.
I encourage each and every one here to remember that we all are in the same boat together. We need more tolerance for one another. We need to stand together in the midst of our differences in hopes that one day, something will come along that is more difinitive.
Until that day, I will keep coming back here seeking support, knowledge, advice and most importantly....
hope.
Cj
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[bow]](graemlins/bow.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic