The best I could do...
When someone is bedridden with Chronic Lyme Disease, life gets a little bit more difficult when they want to do something special to celebrate an important occasion. The month of May happened to be Lyme Disease Awareness Month and being this sick, there was very little that I could do to attend any rallies to support the cause or raise funds for research. I would have loved to travel to Washington, D.C. for the annual Mayday Protest and subsequent rallies that transpired at the IDSA headquarters featured in the following news story:
Last year, in 2013, the entire world got involved in raising awareness about Chronic Lyme Disease by lighting Niagara Falls (lime/Lyme) green on May 17th. Canada really got involved in the cause by lighting up the CN Tower green for an evening in Toronto and turning the Langevin Bridge green for a night which is a bridge in Calgary, Alberta, Canada. It connects Downtown Calgary with north-central Calgary. Lastly, here in the States, Virginia’s Governor McDonnell lit up the Governor’s Mansion in lime green on the night of May 17, 2013 to show his support of the legislation that he is trying to push through in favor of better healthcare for Lyme patients. We have many Congressman, Congresswomen and Senators who would like to see us receive the care that we deserve but we still have a large fight on our hands.
Every year, we fight for what we think is right for the Chronic Lyme Community which is: recognition that our disease is REAL, recognition that we are suffering and need help, recognition that the help should come from our doctors and health insurance companies at little to no cost from us and more funding being spent on Chronic Lyme Disease research so other people don’t end up living the hell we are living. It really isn’t that complicated. The CDC admitted between 2013 and 2014 that their estimation of how many people who actually HAVE this disease was WRONG. They thought that only 30,000 people a year possibly contracted Lyme Disease when in truth, over 300,000-400,000 NEW CASES are contracted every year. If they could be wrong about a silly little thing like that, couldn’t they possibly be wrong about how many of us out here are currently suffering and how many cases have gone chronic by now?
People who are living with Chronic Lyme Disease have worked very hard to get the word out about this disease. Every year we spend eleven months getting ready for May…building up the strength to make the posters, booking the hotel rooms, arranging the carpools, making the phone calls to team up with our friends from last year to see who is well enough to make the trip, sending out emails, arranging for the news stations to be at the rally sites if possible, sending out news stories to the papers in the hopes that they will be interested enough to file them, finding the money to buy the plane tickets when we don’t have enough money for our own medicine, packing our wheelchairs, walkers, canes, bags and bags and bags of IV fluids and medications that we will need for the trip and then we head out to the rallies all over the country, hoping against hope that we won’t get sick and end up in the hospital while we are there.
We muster our strength to spend one month, the month of May, trying to convince the IDSA, the CDC and the World that we are DYING of this disease but no one is listening. Don’t let the pictures fool you. We may look like we are not suffering in some of these pictures but it is often thanks to high doses of pain medications that we are even there. It is often the case that we will be at a rally for three hours and then spend then next four DAYS in bed unable to move, even to feed ourselves, or get to the toilet without assistance. We will cry out in pain and discouragement, hoping that we have done enough but knowing that we will have to be back to fight again next year. You can see all of the events, rallies, protests and support programs that went on around the United States by clicking on the link below. Once you click on that link, please click on each of the pictures and you will get further explanations about what you are seeing. Here are the photos from our United States fight in the year 2013:
The following link is a collection of all the events, rallies, protests and support programs that went on around the world to get the word out about Chronic Lyme Disease in 2013. I know that the people around the world suffer the same physical pain that we do but their travesty is even greater because their governments aren’t even considering their pleas. Most of these patients are having to travel to our country or other countries than their own for treatment. The situation around the world for treatment of Chronic Lyme Disease is horrific and they cannot get care without having to travel hundreds to thousands of miles from their homes. Our poor neighbors to the north, with whom we share a wonderful relationship, are suffering and we feel helpless when we are sometimes 5 miles across the border getting treatment that they cannot receive in their own country. Please take the time to click on the link and see how they are fighting for their lives:
This May, as I was sitting in my bed trying to figure out a way to do anything possible to contribute to Lyme Disease Awareness Month, I stumbled upon a website where I could buy a flag at www.lymeawarenessflags.com. So, I let my fingers do the work for me and I bought myself a flag to hang in my bedroom window. If I am to be relegated to spending my life in this dungeon of a bedroom with the blinds drawn everyday, then I want the world to know that the person who lives inside here is fighting for her life. It may be a small thing, but it was the best that I could do.