…okay, I have no joke to go along with that, I just wanted to get your attention. Writing these posts are the easy part, it’s the titles that are tricky!
At about 2am last night I began a herx of which I have not seen in many months. I’ve only had one that bad since I began treatment a year ago. (For those new to the lingo, a herx reaction is what happens when antibiotics kill the Lyme bacteria, the bacteria die off often makes you feel worse than the disease itself, but it’s a good sign because the bugs are dying…you just have to give your body time to get rid of them).
So today is not my best day for writing. After a night like that my entire body is just worn out. In fact I couldn’t drive today to go to a function I had in Albany, but instead had to have my Mom drive me up so I could still make it to a gathering of my office mates and co-workers (which I guess is really the same thing).
But today is an important day that I really have to write about, if only for a brief time, and if done while in the throws of a herx reaction.
It was one year ago today in the middle of the afternoon my phone rang, it was my Dr. “Eric” she said, just beaming with excitement, “guess what! You have Lyme disease! Isn’t that great? Everyone here in the office said they’ve never seen anyone get so excited about someone having Lyme disease, but I told them there has been something wrong with this guy and we just couldn’t figure it out!” She told me she’d call me in 3 weeks of doxycyline and I’d feel better in a few days. I figured I’d even be able to make the Dave Matthews Band concert 2 days later if I was gonna feel good that quick.
On that day, one year ago today I was so happy it wasn’t MS, or Chiari, or a brain tumor. It was something that would just go away.
A year later, well over $40,000 out of pocket, 8 different types of antibiotics, countless supplements and natural medicines, and 365 days of stress and worry for my loved ones, I can honestly tell you that never in my wildest dreams could I have EVER imagined what I was in for.
Under Our Skin was just showing in Albany that next week. By that point in time I was so sick I was calling friends to tell them what things they needed to come and get out of my apartment because I was sure I was going to die. That was my first herx, but nobody told me that would happen. After seeing the trailer for Under Our Skin my friend Mark said to me “you realize you may never get better? I watched that trailer and then did some reading, some people never get over that sh*t (he always had a way with words)”. I told him his glass was always half empty, there was no way I could be sick forever. Lyme disease was not a problem. If it was I would know about it since I grew up and spent all but 4 years of my life living in the heart of Lyme disease country.
But I was wrong. Almost deadly wrong. I honestly believe to this day if I had not found Dr’s who were willing to treat me (at first it was people who didn’t know what to do for me, but they knew they had to do SOMETHING) that I would not have made it. I know I was close to death on several occasions. And yet, I was wrong. Somehow I had lived here all that time, surrounded by Lyme disease all that time, and I didn’t know a damn thing about what Lyme disease could do, all that time.
I still look back on one year ago today and wish it was a different diagnosis. Even cancer, because I could have either fought it or died from it, but at least there would be an outcome. Now with Lyme, I don’t know if I’ll ever have an outcome.
So that brings me to my point. And to all my friends and family who do not have Lyme, I do not apologize for the constant flow of emails I send out to you, to those of you on Facebook I do not apologize for post after post about Lyme disease. I do not apologize because nobody told me what could come of Lyme disease, and I wish every day that someone had so that I wouldn’t be in the condition I am in now.
So I am going to fight to make sure each and every one of you know that this is what Lyme is. This is what Lyme does. This is what Lyme looks like. This is the face of Lyme disease.
I can’t let this happen to another generation of people. That is why today, one year after the diagnosis and promise that I’d be better in a few days, I am so proud to be part of a team with Ashley, Nani and Candice, as well as the hundreds of others who help us on a daily basis to get the word out there that Lyme disease can kill you. And if it doesn’t kill you, it will take away your life. So we join as a community to continue to fight to save lives. Will you commit to join with us in making sure others don’t suffer like this?