Thursday, March 25, 2010


I go to the headache center in Philadephia. KG is with me. The appointment takes 3 hours and the waiting room is packed when we get there. It reminds me of being in Los Angeles and every appointment was overcrowded and impersonal. The receptionists can barely be bothered with us. I am given a psychological test with 338 takes me an hour to fill out. I will have to send a reimbursement form into my insurance for this. We are taken in by a nurse who does an intake interview with me, and by the time we see the doctor have been there 2 1/2 hours. The doctor is nice enough, but when I ask him if migraines can be caused by food intolerances, he says, "no, a lot of people think that but that doesn't really happen." WHAT? He suggests magnesium (this was also suggested to me for muscle aches) as a preventative measure and then prescribes Zomig nasal spray for the migraines. This is supposed to be THE headache center and I was hoping for way more information and answers. KG and I are not impressed with this experience.

I see Dr. S., and my white blood cell count has gone down even further to a 2.2, and my ANA level is up again. My Mom is with me and he tells us he is concerned enough with this that I must see a hematologist. He also backtracks AGAIN, and tells us he would like me to see a rheumatologist and an infectious disease doc. Oh my goodness, I could just scream or cry. This time last year I saw both of these docs, and my journey began. Both the infectious disease doc I saw and the many rheumatologists were not supportive and made me feel frustrated. In fact, the infectious disease doc he recommends to us is the same doc who was so dismissive of me last year. We tell Dr. S. that we do not want to go back to these doctors right now. We decide that I will see a hematologist and depending on that assessment, will move forward from there either treating me with more antibiotics or not. I am so scared that the doc who has been treating me for lyme disease for 7 months is now bactracking and making me question what is wrong with me. I just want to get better...and antibiotics were making me so. I believe I have lyme disease, all of my symptoms point in that direction. But I am being told again that these symptoms can also be indicative of lupus. I realize that I am officially in the "lyme black hole," not sure if I have an inflammatory illness, or if I have inflammation because of lyme disease. This happens to so many people, and once I was on antibiotics I didn't think it was going to happen to me. Now here I am.

Today is my birthday. What a difference one year can make in a life. Last year on this day I went to work and then to acting class. I was looking forward to my birthday party with all of my friends in Los Angeles and I was rehearsing a play I was very excited about performing. One week later I was in the hospital. I realize that life is fragile, and that the things I thought were important turn out to not matter at all.

Los Angeles Heather calls to wish me a happy birthday. She tells me she is proud of me for the person I have chosen to be in illness, that I am not a victim. I need to hear this, because I constantly feel like I could be more proactive and more positive.

Despite having pain in my body and feeling like I am no closer to an answer than last year, I am grateful for so many things; the support and love of my family and friends, that KG, an amazing man, has come into my life, and for being home. My hope this year is that I will get better and get my life back. But I realize that my life will never be the same after this journey, and maybe that's actually a good thing.

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