Site hosted by Build your free website today!

Janet D's Story

Janet DeCesare

It's a beautiful day, sun is shining, light breeze blowing through the curtains, all the shades of green are out in full bloom and here I am sitting in the house. Doesn't make sense does it? I have no desire to be out amongst the green grass and trees, because I know what lurks in the scenery outside. I never felt this way until I became sick with Lyme.

It's like taken the zest right out of me. It makes me fearful. I was never like that either. I loved the outdoors, putting in a garden, planting flowers; all that has changed. I used to love the sunshine, the feel of the warm sun beating down on my skin. Now that has come to an end. It sure isn't what I thought my life would be like.

My confidence in myself is shot, unsure of who I am or what I am capable of doing. It's the most dreadful feeling I have ever experienced in my life. I could be bitter about all this and it has just about ruined my outlook on life. I take enough pills, vitamins and herbal supplements to "choke a horse." I'm sick and tired of being sick and tired all the time. My personality has changed considerably; I used to be outgoing, but now I'm afraid to be out around people.

Angry, you bet I'm angry!(Not at the tick though, but of the ignorance of not knowing what this disease was and how the doctors that I've been to in the past four years had no clue what to look for, or how to diagnose and properly test for it.) We put our faith in our doctors and sometimes I think we assume they know everything and act as though they were God, to help us and heal us.

But we know that's not true! If you get bitten by a tick nowadays and while it's in the early stage, many people recover very quickly and without any long-term effects. Unlike so many of us who're being tossed around from one doctor to another trying to find out what the answer is and never really knowing for sure what's wrong.

As we sit and ponder at the possibilities it could be (Lupus, Cancer, Multiple Sclerosis), Lyme disease resembles the illnesses mentioned, as it continues to overrun one's body. While the doctors continue to make money off of us, we continue to stay ill. Many of us face one battle with it only too have to overcome another battle.

The treatment protocol is to use antibiotics; that's it in a nutshell. We have no other choice! In my case, if I stop using antibiotics all my symptoms will return in a few short weeks. And you ask how do you know that will happen? Because I have tried stopping the medication. One morning I woke up and said I have had enough of this, tired of depending on the medication and supplements that help to sustain my life. Well, about 1 week later, I was in trouble.

I could feel my bones and muscles, burning sensations, numbness, aches and pains; I would get so fatigued by just making the bed in the morning that I had to lay down and sleep. Just putting on my shoes wore me out. I need them. I don't know for how much longer, but I can't live without them. Using antibiotics is our only weapon in fighting this disease.

Which brings me to a plea for help! We definitely need more research on finding a "cure" rather than depending on the antibiotics. As for me at the moment, my biggest worry is I'm building up a resistance to them because in the past 4 years while I was so ill, the doctors had me on so many different varieties of antibiotics that now I'm becoming immune to them. So what will happen to me and I'm sure many others who are having the same problems, if we can't use antibiotics?

Between suffering with the Lyme symptoms and taking the extensive time to treat it, coping with Lyme disease can become a way of life. I have come to what some Lyme patients know as a "window" in my life. Because it is the only time in which we have normalcy in our lives. This is a time when the antibiotic treatments are helping and I can accomplish small tasks that I'm usually too ill to deal with. Some of us are fortunate in many ways to avoid permanent physical damage.

Had I not been so stubborn and determined to find answers by searching on the Internet and just talking to people about this disease, finding a doctor who knew how to diagnose and test for it, I'd be sitting in a wheelchair right now. The doctors in this state of Ohio need to be educated not pig headed, and accept the challenge to learn to recognize the symptoms and properly treat it.

It's a miserable waiting game. In some respect, we're lucky because we know what we have and we're living proof that it does exist. Yet there are those out there who have Lyme and don't know it! People are suffering miserably, many of them are receiving treatments for illnesses that they don't have while Lyme symptoms continue to weaken their bodies.

Without the antibiotics I'm doomed. Much needed research needs to be made, too find a cure before the disease steps in and takes over. I will continue to use the antibiotics because I know they are helping and there are no other options available as of yet. Then we have too worry about the insurance companies trying to prevent us from using the antibiotics or trying to stop our special doctors who know how to treat it.

This problem only creates more stress on us Lyme sufferers. I know the IV treatments, the oral antibiotics, the blood tests are staggering in costs, but we do not have a choice. This is it! Then get busy and come up with a cure for this illness. If I was a celebrity or a person of great wealth, we could find a cure sooner.

But being that I'm not, life will continue on as we struggle day to day to write letters to our Congress people for support and understanding. If I was a victim of a terrible disease like cancer, I would be able to get the necessary treatment. That really sucks!

Sure the insurance companies pay through their noses for that, but what about Lyme? So we're just suppose to keep our mouths shut, our eyes closed and ignore the problem. I don't think so. The overload of medical bills can break a family apart. It causes emotional and physical strain not just on the one afflicted with this disease but the entire family suffers because of it.

Insurance companies are trying to assume the roles of God and physician when it comes to treating Lyme. Neither of them have the right to! I am pleading for your help to keep the insurance companies and medical board of conduct off our doctors' backs so they can treat this illness, or they will continue to turn a "deaf ear" on our cries for help!

I will not let this illness destroy my zest for life. I will still try and keep a sense of humor which in turn has helped me considerably. I write stories, poetry and letters for support constantly on how it's affected me and my family. I do it with consistency because I feel if I can help one person out there that's struggling with some illness that can't be diagnosed or won't be discovered until it's too late, then I have accomplished my goal in life.

To be a helper, a guardian angel, or just someone who cares about their struggles and their pain. I know because I'm living proof of what Lyme disease can do to you. I thank God for the wonderful doctor I have. Without him I would not have survived this long. But he too is just a man, and God is really the one I thank for he has given me a mind and the tools I need to help reach out my hands to help others find the way.

As long as I'm able to campaign and fight for this disease, I will. That's why it is so important that we need to educate the public and our healthcare systems on the dangers of Lyme disease. As more and more homes are being built, the countryside is slowly being overrun with deer. So where do you think they will be going, of course, in your backyards. I believe there will be more and more cases developing. That's why we need to be educated on what to look for.

With any illness or trials we have to face in life, we still need a harmonious balance to help get us through those difficult times. Laughter is wonderful medicine; it makes you feel good and is good for your whole being. So I'll leave you with a joke:

The one and only thing I can think would make me laugh is to find a deer tick and place it on the hairline of an "ass," and watch the egotistical insanity at play as the experts diagnose and try to cure themselves someday!

Janet DeCesare, Mineral Ridge, Ohio

The Lyme Disease Quilt Page

Please click on the mailbox to send me your comments

Lyme Quilt main page

Lyme Disease related links

Copyright ©1998-2001 The Lyme Disease Quilt Page