March, 2010

I feel like I am in the movie Groundhog Day, and every day feels like a repeat of the last. I have low white blood cell counts, I am off of doxycycline, I might have to go back on it, I have symptoms that come & go. It feels like I have been on this ride forever.

My birthday is in 2 weeks. This time last year I got sick the day after my birthday and I haven't been the same since. KG asks me what I want to do for my b'day this year and I tell him "nothing," because it is a painful reminder of the year that feels lost to me. My sister, however, reminds me that it should be a celebration of life, and how much better I have gotten. She is right. I am grateful that I had the means to come home, to take the time to heal, that I found a doctor who believed me and treated me despite negative tests, that I am not terrified of my period every month now.

In this 2nd round of doxycycline I have now been off of it for 3 weeks. I feel relatively good. The tension headaches are ceasing to be as intense, I am sure b/c I am off of the doxy. My sleep pattern is a little interrupted again, so that's something to be concerned about. My white blood count is STILL very low at a 2.4. Dr. S. will take blood yet again in about a week, and we will see if being off of the doxy for a month will bring it back up.

I go to the Jefferson Headache clinic next week. Also, I have been taking a multi-vitamin and plan to begin adding more supplements etc. New Jersey Heather has been amazing and sent me a list of supplements and KG did his own research looking for ways to boost my immune system. I am still pretty much off of sugar, it tastes way too sweet to me now. It is bad to eat a lot of sugar with lyme disease and only helps yeast and spirochetes grow.

A new friend, S, also a lyme patient, recommends something called trigger point injections for the headaches. S had to come home from California like me, and is living at home. She says these have helped her enormously. I am looking into this as well as acupuncture. The lyme community is supportive and educated b/c they have to be.

I read the book "What is the What?" by Dave Eggers with Valentino Achak Deng (www.valentinoachakdeng.org/preface.php). It is about a Sudanese man (Valentino) who is one of the Lost Boys...they were thousands of young boys who walked thousands of miles from Southern Sudan into Ethiopia to escape the war that ravaged their home. They were then sent to Kakuma, a refugee camp in Kenya, and many are now here in the United States. Valentino's journey and the death, chaos, and tragedies he saw in his young life devastates me. I realize how relative pain and suffering is; I have known comfort in a way he and these young boys never had the luxury of knowing and so getting sick in the way I did rocked my world. And yet, despite his experiences, there is a feeling of hope at the end of the novel; for being alive, for life, for the chance to love. I am reminded to embrace all of the good that I am fortunate enough to have around me and to remember that even in sickness there are things to be grateful for.