With Lyme Disease in the media lately (we are ALL so incredibly GRATEFUL), I feel the need to write. So, I am doing just that…….
Lyme Disease survivors have been fighting for change for so long. I think it’s time to let the public know the REAL truth about Lyme Disease. I want to be the change with this Disease. I want to educate others. I want to help fellow Lymies. I want to raise as much awareness as possible. I want to protect my sweet nieces and nephews. I want to squeeze my husband tighter. I want to feel like what normal used to be. I want to raise as much awareness as possible. So here are 3 facts and some real f***ing truth about Lyme Disease.
***There are between 300,000 and half a million new cases of Lyme Disease each year. That makes Lyme Disease almost twice as common as breast cancer and six times more common than HIV/AIDS.
***Our current testing is only 50% accurate at best.
***Of the 14 members on the board who created the testing we STILL use today: 6 of them or their universities held patents on Lyme or its co-infections, 4 received funding from Lyme or co-infection test kit manufactures, 4 were paid by insurance companies to write Lyme policy guidelines or consult in Lyme legal cases, and 9 received money from Lyme disease vaccine manufactures. Some of them were involved in more than one conflict.
I was once turned away from a hospital. The doctor stated, “Your bloodwork shows a tick born illness, but we can’t help you and you need to leave.” I had only been to the hospital for kidney stone surgery other than visiting others that were there. EVER!! I was told by a cardiologist that Lyme Disease was my doctors “bread and butter”. He reluctantly put a holter monitor on me for a month to monitor my heart. His nurse called me within the first few days. Shocker!! He wanted to see me because he saw some pretty alarming things. THAT is some harsh truth about this debilitating disease and how we are treated by 99% of the medical community. I have a lifetime of maintenance and restrictions. There is no cure. That’s a lifetime of relapses to fear and go through. That is SO many of our realities. That’s the thing. We are all someone. A daughter…a brother…a sister…an Aunt…a wife…a friend…a grandchild, and so much more. Those of us living with Lyme Disease have been fighting for better testing for years. We fight not only for us, but for you as well. Better testing leads to proper diagnoses and treatment.
What if it were your daughter? Wife? Son? Mom? Best friend? Lyme Disease is unfortunately an epidemic. Our goal is to educate anyone who will listen, including our medical community in hopes that our loved ones never have to endure what we have.
In June of 2015 UAMS received a two year and over $400,000 grant to research Lyme in our state. Their goal is to collect ticks from every county in Arkansas. I believe we are starting to make an impact here in Arkansas. We are off to a GREAT start and we will never stop fighting. Fighting for our lives, educating our medical community, and SO much more.
How have I been? Most days I am pretty good! I am forever grateful for all of the amazing people who have supported me and continue to do so. Some days I am in tears by the end of my work day because of the pain. Some days I can tell you exactly where those bugs are at in my brain, but I remain positive (most days lol). Thankfully those days have become few and far between. Being happy is a choice that I strive to make every day. I am a firm believer that your mental health definitely has an impact on your physical health. It is empowering to know that we are in control of our own happiness. I don’t depend on others to make me feel a certain way. It’s not about how many likes you get on a photo or anything else for that matter. It’s about figuring out who you are and loving yourself no matter what life throws at you. Some days I am angry and that’s okay. Love your journey. Make the best of it. Be kind. Be the change. -Lindsey
*********If you pull a tick off, place it in a plastic bag. I will send them in for you!!! We so desperately need your help.**********