Saturday, May 11, 2013

Part II: My Public Battle

May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform. Then it hit me: instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions, but I do have facebook and can be heard by hundreds. 

I started May off by posting educational information for Lyme Awareness, just as if it were a PR campaign. I had already braced myself for numerous people blocking or de-friending me since I had decided to post at least once or twice a day during the month and assumed that it would annoy most people.

I was astounded by the amount of messages I received after the first few days, there are so many people who wanted to know more. This gave me the courage to start posting as a person with Lyme, not just as a Lyme advocate. The love and support I received was completely overwhelming. People I had not spoken to in years were sending me love, prayers and support. I got phone calls, emails, text messages all wishing me good luck and others saying "Oh, now I get it.." more or less. 

Alabama is severely lacking in Lyme advocates, so I have been emboldened by the love and support I have felt to try and fill that roll. It started off with a few facebook posts and now this blog. When I created the blog a few months ago (but never got around to writing anything), I was going to focus the on Lyme but from an anonymous point of view. Now I have decided to let the world know that I have Lyme Disease. And that it is a serious condition. And I am no longer embarrassed. 

Want to join the effort in a small way? Click here to join When Life Hands You Lyme's facebook page and click here to join Alabama Lyme Disease's facebook page.

I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have Lyme disease but cannot afford the treatment, as it is not covered by insurance. This disease is deeply political, and I will post on that at another time. But the most important thing right now is for people to learn about Lyme disease--to know it is an epidemic far greater than AIDS, to know that over 200,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and the insurance companies will not touch it since the treatment costs would bankrupt them. 

I had a very dear friend approach me about starting a fundraising board to spread awareness and raise much needed money for research. If you are in the Birmingham area and are interested in joining, please let me know by sending me a message here (click the link). More on that later. 

Due to my illness, I have what can be pretty severe cognitive dysfunction. Meaning that right now my brain does not work like it use to. So as a warning, my writing may be all over the place and not make sense at times, but like the disease I accept this and do not judge it. If you have had a conversation with me lately you will know that I am all over the place and often cannot finish my sentences or remember what subject I was even talking about. So this blog may be a rambling mess, but it has been so freeing for me to write about this infectious disease. It is very cathartic for me and something I am doing to help myself and to advocate for others. A weight has been lifted off my shoulders by sharing my experience. Hopefully in doing so I will be able to help you to understand what it is to fight for your life. 

Invisible illnesses are hard to understand, and most people's natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to 'handle' it when a person in their life becomes sick...not necessarily with Lyme but with any other disease that you cannot see with the naked eye. 

Enough for now. God bless you all and please join me in praying for all those infected with Lyme...send them love, support, and healing. A patient's mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. You have no idea how the smallest thing can make a sick person's day. After all, happiness and companionship are far stronger than any pain killer.

Thank you to all of you who have always supported me. I am blessed to have such a wonderful group of people who have never given up on me. You know who you are. God bless you and thank you for giving me the strength to do this.