Lyme Warriors

I wrote this post months ago, and although I don’t feel the same depth of guilt and regret that is in this post, it will always be there. I know that I cannot turn back the hands of time; my only hope is that someone else will see themselves in my story and not make the mistakes that I have made.

The one thing that has helped me handle much of what this disease brings is reading the stories of other Lyme sufferers. Only someone who has traveled this road can understand the journey.  I want to share what is going on with me, in hopes that someone else out there will see themselves and know that I completely understand their struggle.

In the post My Lyme Story I talked about how I was misdiagnosed and how I finally found a LLMD (Lyme Literate MD) that could help me. That is just the beginning of my story.

Lately, I have been struggling with regret.  I wish that I had known more about Lyme Disease from the very beginning. I know that there was not nearly the amount of information available  then than there is now. I did look online for information, but should I have looked harder? For example, I just recently learned that the very first cases of Lyme disease were actually misdiagnosed as Juvenile Rheumatoid Arthritis (JRA).  Had I known that information, I am sure that would have affected my decision.

I have always been a good girl,  I did what I was told.  I was taught  never to question authority.  So when the rheumatologist insisted that I did not have Lyme disease, even though deep down inside I didn’t believe it, I deferred to his judgement instead of trusting mine. I could not regret that decision more. If there is anyone out there who is in this same situation, please learn from my mistakes and trust yourself. No one know your body better than you.

My decision to trust someone else more than myself with my health has affected my entire family.  Two of my children do not remember a time when I was not sick.  For my oldest, a healthy Mom is a distant memory. My husband deserves a partner and all I feel like is a burden.  I know that he would not characterize our relationship as burdensome, but there is just no getting around the fact that my health (or lack thereof) makes everything much harder for everyone.