Hello blog world! It’s been awhile. When it comes to a blog like this, I think it’s a good thing when you don’t hear from the author for awhile… it usually means things are going well! And for me and my fellow Lymies, it’s not a bad thing to step away for awhile and focus on something besides Lyme.
I’m writing today for two reason: 1) Recently two of my co-workers have been diagnosed with Lyme and 2) I thought I was driving next to the President today on my ride home from work.
Point number one . . . as much as I love to help a fellow co-worker, I’d much rather be collaborating on a new marketing campaign, then comparing Lyme stories. The great thing about each of their stories is that they both received a POSITIVE Lyme test result with the first round of blood work. That is incredible news, and very encouraging! I’ll point out the obvious – you can’t treat your disease, if you don’t know what it is. And many, many people suffer from Lyme Disease for months or even years before getting an accurate diagnosis. What I find most challenging about helping my fellow co-workers in this new journey they are on, is trying to gently explain how very serious Lyme Disease is without scaring them.
The first thing I always do is share a little of what I went through, so they know that they’re not alone. Then I recommend a few of my favorite websites (https://www.tiredoflyme.com/) and encourage them to educate themselves. One of the best things I did when I first got sick, was watch the Under Our Skin documentary…. it was such an eye opener.
Now the only thing I can do for them, is to be there for them when they need a friend, and pray for them.
Point number two . . . I was driving down the highway tonight after work and I couldn’t help but notice the giant Lincoln Town Car Limo next to me. It wasn’t just the size of the car that caught my attention, but the very governmental decal on the side. I sped up so I could get a glimpse. It took a few tries to get a good look, but I finally got close enough to read it. As I read the name out loud, my heart dropped to my stomach. It wasn’t a government agency . . . yet a behavioral therapy agency. The same agency that the therapist who worked very closely with our family for years, worked for. When the boys were diagnosed, the neurologist recommended behavioral therapy and specific parent training, due to the extreme Oppositional Defiance Disorder that one of the boys was diagnosed with. Ironically enough, the school psychologist that recommended we see this doctor to “rule out” Autism, was the same person who told us that the school was not responsible for providing this service and reminded us that their services “stopped that the door of the classroom.” So, we took things into our own hands, hired our own special education attorney and magically the services and parent training was granted.
How is it that we live in a world today, where we not only have to have law firms that specialize in helping families fight for the rights of their special needs children – but that the companies providing those much needed services are doing so well, that they drive around in limos like this!?
It reminds me of some of the non-denominational Christian megachurches that are so popular today. People at rock bottom, who are desperate for help and struggling to make it through another day are coming to them for guidance and help . . . and these so-called pastors are taking advantage of their vulnerability and stealing their money. It’s not right.
Two of the biggest challenges I’ve faced in my life have been Autism and Lyme. And in both situations, I found myself having to be an advocate for both my kids and myself. And what I can tell you, is that the things that made the most difference in both situations (behavioral services for my kids and treatment for my Lyme) were not offered by the school or the family doctor. The professionals that we have been raised to trust, didn’t help our situations.
It wasn’t until I went outside of the system, hired the attorney for behavioral therapy and saw a doctor that was out of network (and not covered by insurance) that things started to change.
We live in a day and age where information is everywhere. But we have to learn to question what we are told . . . even your pastor. A good pastor will tell you, “Don’t take my word for it – read the bible yourself.”
So, I encourage you to do that. Educate yourself in all areas of your life. Not only your physical well-being, but your eternal salvation. The truth shall set you free.