Thursday, April 26, 2012


As it turns out, my body rejected the new treatment protocol for waging war upon my chronic Lyme disease. It was way too much, way too fast and now I'm backsliding rapidly. I've been working to get back on my feet and to remain positive while swatting away echoes of the "R" word bouncing about in my head:
 relapse, relapse, relapse, relapse, relapse.

Because everyone has a unique immune system, coupled with the fact that many people with Lyme disease are also suffering from various other tick-borne illnesses, what works treatment-wise for one person with this disease often does not work for another. It is very difficult to find the right balance between a strong enough dose to kill the Lyme bacteria, but not so strong that you feel like you're being killed along with it! There is a lot of trial and error involved in finding the right medicines at the right dose.

My joint pain is back with a vengeance; my short-term memory is checking out on me again and I'm getting that spacey, lost, out-of-it feeling again. My energy supplies dwindle rapidly and unexpectedly during the day; I'm wide awake at night. And worst of all, I'm having panic attacks again. The ferocity with which Lyme disease can quickly overpower you when you think you've got a grip on it is staggering. Most people have no idea what a serious disease chronic Lyme disease is!

Despite the major setback, I'm really not as upset as I feel like I should be. Yes, I'm frustrated. Yes, I wish I was better. But honestly, I've been battling this for so long, I've gotten used to taking a lot of detours. And detours only last so long before you get back onto the main road again.

"I may not be there yet, but I'm closer than I was yesterday."  ~Author Unknown

Tuesday, April 24, 2012

The Very Things That Held You Down

When I was at my sickest with Lyme disease, I was angry and depressed. I was frustrated with being in pain every day. I hated not knowing if I was going to get better or not. I was miserable and grieving my old life--I wanted my freedom back from being sick!

During that rough time of my life, one of my best friends--knowing how much I love quotes--gave me a little plaque with this quote by Dumbo on it: "The very things that held you down are going to carry you up." Though I've never been a fan of animated Disney movies, it was a very thoughtful gift, and there's not a doubt in my mind that my friend knew what she was doing when she gave me that particular quote!

But to be honest, it hit too close to home for me. It made me squirm. It meant finding peace in the midst of chaos; it meant not only accepting my illness, but also learning from it and growing from it. Even though it made me uncomfortable, I displayed that little quote right above my bathroom sink where I would see it several times a day. And every single day--whether sick or well, happy or sad--I read and reread that quote, "The very things that held you down are going to carry you up."

I looked at that quote tonight while brushing my teeth, and thought about how that one little sentence has guided me over my journey with Lyme disease. Last night I reread an old blog post that I wrote called The Courage to be Sick. I wrote that a week after one of the most traumatic experiences of my life, and though I didn't see it at the time, that post could not have been a more perfect example of how the very thing that was holding me down was already carrying me up.

My little plaque is completely beat up, withered and fading, but still standing. Just like me.

Thursday, April 5, 2012

Total Extinction

It's time for me to begin weaning myself off of my three times a week Bicillin injections for treatment of my chronic Lyme disease. Now, you would think that this would be the kind of change I'd be jumping for joy at. I mean, seriously, who wouldn't want to ditch several-minutes-long, pain-in-the-butt (literally and figuratively!) shots three times a week?! Me, apparently! Change means facing the unknown, and for me the unknown means changing a treatment that is working really, really well.

Monday was my 72nd shot--the six month marker for me. I had been working toward that goal, well, for six months, obviously. My friend and I joked that I would reach "total extinction" (remission) at the six month point. While I wasn't magically healed by the 72nd shot, I cannot deny that these shots have brought me farther than any other treatment I've done.

Alas, I am not in remission, and that means--like it or not--it is time for me to soldier on with the next part of my treatment. Last night was my first (planned) night skipping a shot and I was terrified of how my body would respond to this change. I worried myself into a panic yesterday.

Sometimes, you have to learn a lesson over and over before it sinks in: When you dwell on fear, it grows and grows. I realized last night that I was unconsciously choosing to make the fear of the unknown a thousand times worse than facing the actual experience, and that was the last thing I wanted to do.

I decided today I needed a change in attitude, and I must say, when you go looking for motivation instead of dwelling on fear, motivation has a way of making you look like quite the fool! I took myself out to lunch alone today--a very rare occasion for me, since I'm the mother of two young kids--and I noticed that the man sitting at the table next to me was sporting a neck brace, an eye patch and a cast on his arm.

Poor guy, I thought to myself. But then I realized that I was the miserable one feeling sorry for myself, despite the fact that I was still feeling pretty decent considering the skipped shot. This man was smiling, laughing and having a wonderful lunch with a friend. If I didn't think it would break him, I probably would have gotten up and hugged him!
Well, what can I say? I learn my lessons the hard way! Don't most of us, though? Anyway, enough feeling sorry for myself; enough moping about having to be sick for a while again (So we meet again, Flagyl!). Enough! It's time to move forward.

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” Helen Keller