Monday, April 26, 2010

Trying to march forward in life with lyme disease

My new lyme doc, Dr. B., wants to take blood every week for the next few weeks to see if he will get a positive lyme result back. Today is my 3rd week in this process and I am going there today to get more blood taken. Meanwhile, I do not feel well again. I am tortured by insomnia, nightmares, alternately sweating and freezing during the night, muscle aches & twitches, and a constant, slight feeling of pressure around my head. Despite this, I determinedly march forward in my life. I take a trip to NYC with a good friend to see some Broadway shows. We see Billy Elliot, the musical. It is magical. For a couple of hours I completely forget that I don't feel well and am transfixed by the music and energy on stage. The actors are having so much FUN, and it makes me ache for that feeling in myself again. Everything has felt so heavy in the last year.

I am given the opportunity to attend a casting workshop with a successful casting director. I'm excited for the opportunity but also nervous because I have been out of the loop audition wise for a year. The night before I barely sleep; tossing, turning and sweating. I am like a zombie the morning of the workshop. I am determined to go anyway, because I so want my life back. It is informative but when it is my turn to perform a scene the casting director's feedback is that I am "very low energy and seem defeated." It is hard to hear this, but I know he is right. I AM defeated sometimes. I'm disappointed afterwards and really just want to give up on everything. It is a wake up call that I am not ready for life to come swarming back in yet. I need to accept this and continue to do everything I can to get better.

I continue to coordinate a local screening of the lyme disease film Under Our Skin. May is Lyme Disease Awareness Month, so I want to try to get it screened during that month. It looks like I may have gotten a location to do so! I will post the information when I have the details confirmed.

Friday, April 16, 2010

Lyme Disease is a marathon, not a sprint

I go see Dr. B., for a follow up at the wellness center. I take my Dad with me because he has been out of the loop and doesn't fully understand what lyme disease is. Dr. B. tells me all of my co-infections are negative as is my lyme test. I was expecting this, but it still disappoints me. Imagine actually wanting to hear that you have a confirmed illness! Anything is better though than wandering around in a sea of uncertainty. He explains to me that because of how the spirochete lives in the cells, it is not unusual to continue to get negative tests. His strategy is to test me weekly for the next few weeks, to see if we will get a positive test. He is also continuing to create a paper trail of my symptoms, something the doctors must do for insurance purposes. This is crazy!

My sleep cycle is completely disrupted again. I explain to Dr. B. that it feels like my body doesn't want to stay asleep. It takes me an hour or two to fall asleep and I am again waking at 4 am and just lying there. It is torture to be so exhausted, but my body won't allow me to sleep. Dr. B. says that is my nervous system keeping me awake. I have been off of doxycyline now for about 2 months. The symptoms, while not intense, are slowly creeping back in. My muscles are violently twitching, I am irritable and feel disconnected, and I can feel that burning, creeping, toxic feeling in my muscles.

I see a therapist now. She is helpful and understanding. I think what she has given me mostly is validation. Just to hear someone say to me, "yes, what you have gone through is hard," makes me feel like I have been heard and that is contributing to the healing process. Also, it has been nice to speak to someone outside of my inner circle. As much as I know everyone loves me, I feel like sometimes it must be hard to hear from me about constantly not feeling well. When someone says, "how do you feel?" I don't know what to say anymore. It's been a year since people knew something was really wrong with me, and it feels like sometimes at this point, people must think, enough already! My Mom has been a constant source of support, but she has the entire family to listen to and sometimes I just want to give her a break. The therapist has said to me, "it's hard to acknowledge sometimes that we are valuable enough for people to continue to support and love us, despite our illness or faults or whatever." So true. It's this feeling of "people will love me while I am sick to a point, and then I really should start to get better or their patience will go away and they will get tired of it." And me!

I am anxious and restless for life, but I know I still don't have the stamina to go at it like I did before I got sick. I feel like I am keeping whatever is wrong with me at bay right now, like the 4 months of antibiotics pushed it back, but it's still lurking in there. I feel like if I were to allow myself to get very stressed, and tired, I would be right where I was this time last year. I am terrified I will be curled up in bed again, in the fetal position, in so much pain I can't move. I tell my sister that I am in hell, and I can't believe this still hasn't ended. She reminds me that it is a process, and says again to remember how far I've come since last year. It is just so frustrating, because I want to go sprinting hard at life again. But lyme disease is a marathon.

PA Senate Lyme Bill #1199, Wtr/Spring 2010

If you are a Pennsylvania resident please go to the above site and sign this petition. The link is also to the right under "links."

Thank you!

Wednesday, April 7, 2010

Spring - Wellness Center Visit

The flowers and trees are bursting open. It's been a long time since I've seen Spring like this. Los Angeles has color, but it's different from the East Coast Spring I was used to growing up. All of this color and abundance reminds me that life will go on.

I go to the Wellness Center near me with some real trepidation. The night before my appointment I looked the doctor up on-line and found a bunch of negative reviews. I was torn as to whether or not I should even go to the appointment the next day. My mom says, "let's make our own decisions and form our own opinions." So we go, and I am glad we do. Dr. B. spends 2 hours with us and he is the most informed doc I have met with thus far. He has read over my history and through all of my lab tests, he explains things to me on my lab work that no one else has, (he tells me my thryoid is slightly elevated, but no one had mentioned this to me at all) and he decides to do 2 tests that I wish I had done a year ago; the C6 peptide test as well as the PCR test. He says he is going to send these to MDL in New Jersey. MDL is known for more sensitive criteria with the lyme testing (like Igenex which is on the West Coast). Dr. B. explains to me in detail also what this "sensitive testing" even means. I wish that Dr. Savior had done these tests in August of last year. Dr. B. explains to me also that even with these tests/more sensitive criteria my results could still be negative. He also looks at my ANA counts and asks about lupus. I explain that I was treated for lupus for about 6 months with no real improvement. It was only when I went on the antibiotic doxycyline that I felt real positive changes. He looks at my white blood cell count, which was a 2.2 on my last Dr. Saviour test, and says he, too, won't treat me further until a hematologist looks at that. He also says that if he treats me and puts me on iv antibiotics, he won't put me on Rocephin (kind of the standard for iv antibiotic treatment), knowing that I am susceptible to a low white blood cell count. Dr. Savior had also decided the same thing. If I go back to him, he says he won't put me on doxycycline again, but most likely Cipro.

KG and I go to see Dr. K., a hematologist. He takes blood and gives me the results immediately. My white blood cell count is now at a 4.4, and all of my other cell counts look normal. He feels that my fluctuating white blood cell count is due to the heavy doses of antibiotics. He gives me a clean bill of health (blood cell count wise), and says he also recommends I do not go back on doxycycline again. KG is in the appointment with me, and he now knows more about my physical health than any other man I've been with. The things he has heard and dealt with in the few short months we've been together makes it feel like we've been together longer (like in dog years). I tell him how much I appreciate his patience and support, but he shrugs it off, saying, "you'd do the same for me." It is interesting to me how illness has allowed me to do something I never seemed to be able to master before in relationships; to be myself. I don't have the energy to put up any kind of facade, or to pretend to be someone I am not to make a relationship work. It is a revelation.

The tests results will come back at the Wellness Center in about a week, so I will know more then. There is part of me that is praying I will have a positive test result so I can stop questioning what is wrong with me and get on with aggressive treatment and be done with it. And if the test is negative? I don't know yet.