Feeling Angry! (written 11/28/08)

Friday, November 28, 2008
FEELING ANGRY...

Ok so I am trying to be thankful this holiday season for having a diagnosis. But it is very tough to do when you don't know what is going to happen to you.

For those of you who don't know...finding a lyme doctor is very difficult. There are very few of them because of the controversy in long term treatments. Once you do find one most people have to travel to another state to see them. Most of them don't take insurance because they could lose their license if they give long term antibiotic treatments. This is because the insurance companies don't want to pay. And the government has made it so easy for this to happen. The current guidelines for this disease are absolutely absurd!! People are only allowed a few weeks or a month of medicine. Then they are concidered cured. Which if you have had this a long time that is impossible. This bacteria leaves your blood stream and burrows into your body, organs, tissues, brain, muscles, bones...etc. Then it can hide in a cyst form so the antibiotics can not kill it.

So right now I am feeling angry. Angry that in the United States of America people can not get proper treatment for their illness. People are dying! Children are dying! There is only 1 pediatric lyme specialist in the entire world! And he is in jeapordy of lossing his license right now.

I am lucky to have a doctor that is only 1/2 hr into Pa. But he is under a close watch with the insurance companies right now too. So he isn't treating me aggressive enough. So I may need to find someone else and have to travel and pay out of pocket. I am also on antibiotics right now. But I don't know for how long my insurance will pay for it.

It is an awful feeling to live each day not knowing what your future will be. Feeling like you may always be sick or worse you may die from this.

A women on a YouTube video on my page died not too long ago from heart failure in her sleep at age 41. I have this in my heart now so you can imagine how scary that is?

Anyways...I just needed to vent. So many people don't understand how bad this disease is and how hard it is to get treatment. I have met hundreds of people on line. All these people are having the same problems that I have. Some are worse and some are better. It depends on if you can get treatment and how your body responds to it.

So it is pretty bad when you feel like you would rather have cancer! Yes, it is an awful illness. I have watched many people I love die from it. But at least it is well known about in the public. There is no controversary about treatments. And people are willing to help you get better. The feeling of unknown is the worst feeling!