This is one of ten shortlisted entries for our Things To Do Before You Die contest. We will try to make the winning idea happen.
The entries on the shortlist are:
"Inform The World About Lyme Disease" - Beth Ross
"Improving The Lives Of Dogs" - Emily Grossheider
"Becoming A Regular Size" - Will Holt
"Seeing Through Photography" - Jeremy Braun
"Live Like We're Dying" - Jonathan Winegarden
"One Wish Before I Die: Let Women Lead" - Claire Charamnac
"My Wish For A Buried Life" - Ashley Calarie
"The Dark Has Its Own Light" - Mary Rose Betten
"Thank You For Being A Teacher" - Caroline Cretti
"My Wish: To Be A Professional Pinup Model" - Alicia Leeman
My name is Beth Ross and before I die I want to start a Lyme Disease Foundation and get the word out about what Chronic Lyme Disease is and what patients with Chronic Lyme Disease go through on a daily basis.
I am 18 years old and I was diagnosed with Chronic Lyme Disease just after my 16th birthday but was misdiagnosed by a doctor who claimed it was all in my head. Here is my story.
I had it for a few years before I was even diagnosed or tested. My symptoms became worse when I was 15. October 2008 I started having hip problems but as a ballet dancer I thought nothing of it. Weeks after my knee started to hurt as well. In no time I was hardly able to walk with little pain, I was limping everywhere I went and in constant pain 24/7 even when I was at home relaxing. I was always tired, felt sick, it was flu-like symptoms. I just kept getting worse.
My Dr. gave me pain medication, at 15, went through the whole thing and it had no effect on me. By this time I was depressed as someone could possibly get due to everyone thinking I was faking it and telling me to get over it because they didn't understand what I was going through.
Even my boss a few years later would get mad at me for being sick and herxing (Lyme bacteria dying off so quickly it makes you sick, mainly happens to me in heat like in the shower or a hot summer) from the heat, I ended up taking myself off treatment for the entire summer until the season was over and by then I had gotten worse over that time.
The Dr. told me I'd have to live with the pain for the rest of my life. I wanted to die. I became anorexic and was getting more and more sick every day. By this point I had now developed a tremor in my right hand/arm but thought nothing of it. At this point I was going to the chiropractor 2-3x a week for adjustments, electrodes therapy and ultra sound therapy just to try and help me be in less pain as well as going to physical therapy and dancing 3-4x a week.
I was still getting no answers, even after seeing 2 orthopedic surgeons, one from Boston Children's Hospital, countless x-rays between my hip, knee, ankle and now currently my back, 5 physical therapists and 2 MRI's, one with a dye injected into my hip, that was the most pain I had ever been in my entire life, all happened before I was 16 and over the course of 6 months.
Finally, we decided to go to a different doctor's office and just by the grace of God my physical was with that office's Lyme Specialist. She did all sorts of tests on my body, memory, pressure
points that weren't suppose to hurt but did all over my body and all sorts of crazy questions, she then ordered 9 blood tests to be done, one being Lyme Disease and sure enough I had Chronic Lyme disease, the late stage, and Bartonella Disease, a co-infection of Lyme Disease.
Without notice she left that office. I was left scared and not knowing what to do and running out of refills on my antibiotic treatment. There is only one Lyme Specialist on Cape Cod and I found him and currently still going to him for my treatment. I have been on antibiotics for 3 years now, my stomach is torn to bits and I have no idea what other damage has been done.
My neurological damage (the tremors) are irreversible and have gotten worse and I cannot remember what it is like to not be sick and to not be in pain. Right now I am trying to figure out what is wrong with my lower back, when it first began over a month ago I could hardly even walk let alone stand sit or lay down with little to no pain.
Now I am on muscle relaxers and prescription ibuprofen to help keep me a little comfortable until I find what is wrong. I feel like I am back to the beginning where I was with all my joint problems before, only this time I know it's not the Lyme because my Lyme specialists suggests it's not. So far 6 X-ray images have come up with absolutely nothing and now I am waiting to
see an orthopedic and the possibility of an MRI.
The last thing I want is to deal with this lower back pain the shoots down my left leg and is painful no matter what I do. That's not the life I want to live, I already deal with enough pains every day as it is with a smile on my face. People will come up to me and ask me how everything is going and tell me how great I look then on the inside I feel so sick, tired, worn down and in pain. But it's not something they can see because I don't look sick.
To the naked eye I look like a normal healthy 18yr old who has a passion for dance, the dancer's body and about to go into the field of personal training but when you look closely and take the time to see, you would see that I am hiding how things really are going for me very well. I do my best to prove that I'm normal and that my life hasn't been changed at all by going to college full time, working full time and going to the gym every day to keep my body going.
If I wasn't going to the gym every day I would literally stop moving and my health would decline and I would be so much worse than I already am and have been in the past. I cannot wait for this to go into remission. But when it does I will always have to fear of it relapsing but will cherish the time I have when I am not sick. I can't even remember what it is like to not feel sick, not be in pain, depressed, or even have something as simple as my memory restored and not have short term memory loss. Those who are well should be so thankful and blessed to be well, I know I sure am thankful and blessed I didn't get it as badly as I could have. But I swear, if I had stopped dancing when they told me to I don't think I would have made any improvement with my treatment.
There is no cure for Lyme Disease and this is something people are lied to about, It doesn't take a few weeks on medication to get rid of, it takes long term antibiotics and that is why insurance companies claim Chronic Lyme Disease "doesn't exist." People say "oh I got Lyme disease AGAIN" No, you don't get it again, it will always be in you, it just goes into remission, that it why the long term antibiotics are SO crucial.
My primary care doctor that I have now does not believe in lyme disease and would not ever treat me even though I have shown improvement. It makes me depressed how there are so many doctors out there who just aren't educated about it and therefore the people know hardly anything about it and when they get sick with lyme they are often left either misdiagnosed or told it's all in their head like I was told.
I have an invisible disease. I want to be visible. I want my disease visible. That is what I want to do before I die. May is Lyme Disease Awareness Month and lime green is the ribbon and awareness color. I want to do something that will catch people's attention and let them know what this disease does to you. This disease can kill. It has taken so many lives, you just don't hear about it on the news. I don't want it to have to take a celebrity to come down with Chronic Lyme to have people listen. I want to be heard.
I also highly highly recommend watching Under Our Skin. it's a movie about Lyme Disease and what really goes on and what isn't being told about it. I want to do more than this though, I want to get out there and tell the nation, even if it has to start simply with doing something right here on Cape Cod.
I want to do something to raise awareness and even raise money for Lyme research so we can find a cure and more research on better treatment. I would love to do a Lyme disease walk right here on Cape Cod but I need your help to start it and to get the word out, people listen to you guys because you are an inspiration, I don't want to just be an inspiration to my friends and the random people who I have gone out and talked to about this, I want to be an inspiration for the entire country and for all those who suffer with even any disease, I want them to know they are not alone.
Thank you!