April 2015 archive

Not On My Timeline


On the day I first met my Lyme doctor and he told me the results were not the false positive I was expecting, I left his office in a San Francisco high-rise and walked straight into the jewelry store on the bottom floor of the building and promptly bought myself a piece of jewelry.

I’ve done this almost every time I’ve left his office over the last two and a half years. Not always jewelry, but something pretty and impulsive. I believe I do this as a release of the nervous energy I always get about three days before an appointment that grows and grows until the appointment is over. I think the nerves are from never knowing what to expect and it can be, and often is one step forward and two steps back.

After my impulse buy, it was out into the sunlight where I promptly fell into a crying jag walking amongst the throngs of people going about their business up and down Sutter Street.  For the first time I knew it. I knew in my gut. My messed up, bloated, unable to digest food gut, that we got it. Lyme disease was the name I’d been searching for. But what now? In a matter of minutes, I was happy, scared, mad, and confused all at once.

I got into my car and was soon on the road back to Los Angeles. Somewhere in the middle of central California, I pulled over, so overwhelmed that I could not drive. I sat there for what was maybe ten minutes maybe thirty. I don’t know. I just sobbed and sobbed. I was happy. I was on my way back to health, but I was also scared and confused. Could I be cured? Was the damage done too severe? Would I ever be able to think clearly again? And I was angry. Angry with doctors. So many doctors that scoffed at me, refused to test me, told me I needed to see a shrink, which I actually did at one point. Doctors who told me I was just depressed. “Here, take these antidepressants.” Doctors who gave me the same tests as the ten doctors before, costing me thousands of dollars for naught. But I was also mad at me. For not believing in myself earlier. I always knew something was terribly wrong but left doctor’s office after doctor’s office assuming that they must know better than I. 

Once I got home, I got to work. I attacked treatment with a vengeance. Fifteen pills a day? No problem. Some not to be taken within an hour of others. Some twice a day, some once. Okay. Probiotics that have to be taken at yet another time. Four different types of sleeping pills. Got it. I’ll do it. Anything. I’m in. I also gave this treatment and the disease a timeline. Two years. Two years, and I’ll be healed. 

Clearly, I had no idea what I was in for. Antibiotic treatment for Lyme disease isn’t for sissies. It’s not just about taking pills and getting better. You get to take loads of pills and get worse. Over and over and over again. First, you have to deal with the side effects of the meds. That’s a delicate dance. Some you just have to ride out, others you have to swap out. Then there is the almighty Herx, or Herxheimer reaction. Let me back up. When you have Lyme for any length of time, chances are that you have what are called co-infections. Ticks carry many infections, sometimes dozens, and often they pass them on to the human they bite. They are bacterial or parasitic in nature and must be treated before you treat the Lyme itself. So… you start treating these infections one at a time.  Once you start treating an infection, the exotoxins from the bacteria start to die off (millions of bacteria at a time) and the result is not pleasant. The nausea is indescribable, then there’s the stomach pain, the headaches, anxiety, joint pain and depression. Once the die-off is complete you start to feel better. Then you start on the next one. You do this until all the infections are gone. However, it’s almost guaranteed that at least one infection will need to be fought more than once.

This has happened to me. I have had to fight one particular infection three times to defeat it only to find out that two other infections that I had rid myself of years ago are back. This pisses me off. It’s totally throwing off my timeline.  

With as much gusto as I use to fight this disease, I must admit that I can also attack sugar like it’s my job. This is not good for Lyme. I do my best with my diet which excludes gluten, dairy, sugar, caffeine, fruit, corn and other items. It’s not always easy and sugar is the Devil I love but I do my best.  

It has been well over two years and I’ve yet to see the light at the end of the tunnel.  However, I have learned that I cannot control everything which is new for me. In this, I have found a bit of grace for Lyme disease. It has taught me much that I needed to learn.

I’ve learned to love myself unconditionally (a work in progress). I’ve learned to be kinder to myself. I try not to beat myself up if I can’t wash the dishes in the sink for a week or if I can’t get out of bed for days.  I try not to push myself to do things I think need doing if I feel exhausted. Again, this isn’t easy given that I am independent and have a hard time relying on others. I’ve learned that I know myself better than anyone and my opinion is what matters most. At least where my health is concerned. I’ve learned that it’s important for me to go. Wherever. I just need to go places. When I can, I will go. I appreciate and love this body that has carried me through so much.  Finally, I keep those who help and love me close. 

I hate this disease and what it has taken from me, but I am grateful for what it has given me as well and I will ride out this treatment till the end, even if it outright ignored my timeline.