In the Beginning

I have to think back to when I first got sick, really sick. My doctors have been telling me this is early stage disease but my symptoms conflict with that theory very much. About nine years ago I came down with what I thought was the flu. My roommate and I lived in her townhouse where there were lots of cats and a dog, and I even had my own cat...I'm sure there was a tick in there somewhere, but that in particular I only vaguely remember. After that first bout of illness where I was throwing up and my glands were very swollen, I was fine for a few more weeks, then suddenly the sickness was back with a vengeance. This time the lymph nodes in my legs were so swollen and painful I couldn't walk. My mom told me to get my gallbladder checked. Two different idiotic doctors I visited said I'd be fine in three days and to go home and get some rest. I was 20 years old and had never been really ill before. I stayed in bed, tried to get over it, and in a week or so I was better...until a few weeks later, like clockwork, it returned. This went on for a few months, without being treated (no one thought I had anything more than the flu) and I finally attributed it to my monthly cycle as it seemed to come and go predictably enough to set a clock by. A few months later I found out I was pregnant with my first child...opening up a door to years of being misdiagnosed and ignored because I was a "tired mom".

The MVPS could easily become a "chicken or egg" argument, but it's probably very simple. My family has a history of autonomic disorder, which usually presents itself in a predisposed individual after trauma or infection. Lyme Disease could have been all that autonomic dysfunction was waiting for to allow it to rear its ugly head. A couple of years after my mysterious cyclical illness, and pregnant with my second child, I realized that I was incurably, abnormally tired. Of course this was written off as normal for a woman carrying another child not even 18 months after giving birth to the first one. But that day, I can see it so clearly in my mind, the day I realized something just wasn't right anymore, I sat outside my house in the gravel in frustration because I just couldn't find the strength to get up and go back inside. I was more tired and weak than I had ever been in my life, and I knew it wasn't just because I was pregnant.

Fast forward to child number three, two years later. I was hanging ornaments on the Christmas tree, only a few weeks into expecting my son, when my heart suddenly and inexplicably felt like a dying fish flopping in my chest. This frightening symptom would repeat throughout my pregnancy, blamed on the increased blood volume a woman has during gestation. When it didn't go away after the birth, I was found to have the valve prolapse.

But it wasn't enough explanation. I also began suffering strange neurological symptoms I found hard to completely explain away with MVPS. I all but stopped watching television because any time there were color or scene changes on the screen it provoked an odd twitch inside my brain, and my memory became faulty. I had problems with word retrieval which was very frustrating for a writer, and I would go into a room several times a day and forget why I was there, or how I'd gotten there. I'd drive to a building only to realize I should have been somewhere else. People would come up to me to say hello and I couldn't remember where I knew them from or who they were. At work at a call center, I had trouble explaining things I knew inside and out to customers on the phone and frighteningly, I began to stutter. I've never had a problem with my speech in my life, and now I couldn't even do my job.

Then there was the pain. It was just there, everywhere, all the time. I have good days and bad, and am learning to accept if I can't make it up the stairs right now the laundry is just going to have to wait until I can. But how do you give yourself permission for that when you're trying to run a household? You don't. You just feel like the laziest person in the world. But that doesn't mean you can force your body to do something it just won't do.

When I went to my cardiologist I never expected the test for Lyme Disease to come back positive - after all I'd already been tested once and was negative. In early stage disease Zithromax is an option, but I'd been on Z-packs several times over the year because of my children bringing home various illnesses from daycare. I'd even had a bout of pneumonia which I was on even stronger antibiotics to clear. I was in denial for several weeks after the diagnosis, thinking this couldn't be the culprit of all the symptoms I was suffering. But the more I learned the more I realized how horrible, how destructive, the bacteria from Lyme Disease can be. I was devastated to find I may have passed this on to my children or my husband. And more infuriated to learn that my doctors don't seem to want to acknowledge how long this has been taking its toll on my life. The truth is some days I think I don't have the energy to fight for what I deserve - for everything to be normal again.

Three more days until the support group meeting...then they get to hear all this too. You should be glad you can just click the X in the corner to shut me up.