The Rich Man's Disease

I have heard it 100 times before. Lyme Disease is a rich man's disease, and it is true! I am so frustrated and angry with the politics of lyme. Why is it so hard for the medical field and insurance companies to except??

Well for one, it's a huge liability for doctors because there are so many treatments, long term treatments, various drugs, insurance companies coming at them left and right, uneducated cruel, hurtful people deliberately trying to shut them down , etc, etc.

Why won't insurance companies recognize it? Easy, because all of the other disease out there that could be lyme-MS, Chronic fatigue syndrome, psychological disorders, arthritis, heart problems, liver problems, chronic pain, Alzheimer...I could go on and on, the list is long-would then be the insurance company's problem and they would have to cover these expensive long term treatments that would cost millions of dollars to treat. Instead they basically say if you need more than 2 weeks of treatment then you really don't have lyme and they will not cover you.

It should not be like this! I should not have gotten to the point that I had to quit my job, we should not be loosing our house, I should not have to uproot my daughter from the only things she has known, we shouldn't have to move in with family at our age. I SHOULD NOT HAVE TO THINK ABOUT STOPPING TREATMENT!!!!! We are broke, and many people have helped us. We are to the point where I may have to cut down my treatments a lot or stop all together. We just can't pay for all of this anymore. I SHOULD NOT BE UP AT 1AM BECAUSE I CANT STOP THINKING ABOUT THIS. I WANT TO GET BETTER!!!! I want to run more than the 20 feet with my kid with out being so out of breath and feel sick. I want to have the option to have another child if I want, I want to be able to sleep all night and actually wake up refreshed, I want to be able to enjoy a party, holiday, get together with out panicking about the cost of whatever is going on. I am making great progress and my doc thinks I will see great results by this next summer. I AM SCARED. I don't want to down slide. I remember those days clearly and never want to have to call 911 again because I thought I was dying and have to take an ambulance ride to the ER. I don't want to go back. SO I SAY SCREW YOU TO THE POLITICS OF LYME DISEASE AND TO THE SELFISH UNEDUCATED JERKS THAT MAKE THIS SO HARD. YOU ARE TAKING INNOCENT LIVES AND IT IS NOT OK! WHO DO YOU SEE WHEN YOU LOOK IN THE MIRROR?

I Am Thankful For-

Even though I have had a rough go the last few days I am still thankful for how far I have come and other things in my life. There is no doubt that the medical field has failed us lymies but I am thankful for the other advances in the medical world out there-

Today I am thankful that the Newborn Screening labs came back on my daughters 3rd day of life. She was diagnosed with MCAD, a metabolic disorder. She was dying and we didn't even know it. Without this test, she would be in the ground and not in our arms. I am SO thankful for her and advanced medical testing.

What are you thankful for today?

Many Changes

There are so many changes happening right now, all of which are out of my control. I work running my own child care in my home. I have made it as long as I could with this terrible disease and just can't do it anymore. I am getting worse instead of better and I know it is because I work long hours in a very demanding job. I love my job and it is always what I wanted to do, this is so very hard for me. It isn't fair to the kids anymore and it isn't fair to myself if I can't heal. I have no doubt I wouldn't stay alive if I continue my life like this. I would continue to go down and not heal or end up taking my own life in a moment of brain fog or depression because I an trying to wear too many hats and can't do it anymore. As hard as it is to make the decision to quit my job, it really is my only option to heal and beat lyme. It's not fair to my child and husband if I don't take control and get better so I can be a better mother and wife. They have had to deal with so much and it's not fair to them, I especially feel bad my daughter has to deal with the effects of a sick mother.

A lot of people don't understand because you can't see how I feel. I am sure I look sick sometimes when it's bad but a lot of the time I am able to hide it and put on my happy face. I have to hide it in many situations to get by, so a lot of people wouldn't really know I was sick unless I tell them. Or, when I am bad I try not to go out so they don't see my really sick days. On the weekends I sleep almost the entire weekend to recover from the week, so then again not many people see me. Of course I get out on my good days to enjoy life and want to see my friends and family so they tend to see me on my good days. My really close friends have seen me on my really sick days so they know how hard it is. It also effects the brain so they can't see that. Such bad brain fog, depression, irrational thinking etc. My brain fog causes me to become dyslexic. Math..I don't even try! It's a good thing I work with young kids that can't do more than basic math and can't read much haha!

I have a week left of my job and then I have to say good bye to all my daycare kids. They are my family. I am not looking forward to this day, it's so sad for me to say good bye to them. I never thought this day would come, I thought I would either be better by now or be able to tough it out. In addition to having to close my daycare, we will loose our house. There is no way we can live on one income, pay for the mortgage, pay for massive amount of debt and food. I know it's not my fault and I can't help I have lyme but it sure feels like my fault. I am the one causing all of this. We can't keep our house that we worked so hard to get. My daughter has to be uprooted from the daycare, her house and everything she has known. We will move in with family and hopefully be able to avoid bankruptcy. Although that isn't looking good either. How could we have gotten to this point, all from a stupid disease?! A disease that is so political and causes so much controversy, that isn't well know about, the medical field is so under educated about, that isn't covered by insurance, that you have to travel across the country to find a doctor that knows what they are talking about, that causes families to break up, that causes people to take their own lives because they can't handle no one helping them anymore and the disappointment. How do so many people(more than HIV and West Nile combined) have this disease and the medical field is not educated enough to help us? It makes no sense. I hope the future is brighter for people with lyme, the more we can educate the better.

The only positive in all of this I can find is that my family loves me and I love them and as long as we are together that's all that should matter. As long as we show my daughter all the love we can and teach her about life, then she will be happy and live a healthy life.