Sunday, November 22, 2009

Lyme - End of November, 2009

I see Dr. Saviour, and tell him about the slight symptoms I'm feeling; muscle twitches, sleep patterns interrupted again, heart racing slightly, stiff neck on the right side and I am starting to reverse words again. I told my Dad the other day I put "gas in my car tires." It hurts again to turn my head onto my pillow to sleep. I tell the Dr. that I don't want to be a wimp, and yet at the same time my tolerance for pain is so high now that I have no gauge anymore for when I'm supposed to throw up the white flag and surrender to it. He says he won't think I'm a wimp and that I shouldn't struggle and as soon as I am uncomfortable I need to see him so we can get me back on antibiotics. But really, what is the point if I am only going to go on the same dose of doxy again? I can feel this poison is still in me. I know my body better than anyone and I finally trust MY intuition and it is telling me we didn't get it all.

I have been off the doxycycline for 2 weeks and 2 days. I have a headache that I can't get out from under. It's been 2 days of pain. This is the headache I used to get with ovulation before the doxy. It lives in my right shoulder, neck and the muscle in my head above my ear all the way to my eye. It makes me feel crazy and unable to function. It is so depressing. I take Fioricet like candy and it doesn't help. I try to continue with my life. With the headache I go for walks, and go to dinner and a movie with a friend. During the movie I ask him what time it is and when he tells me I realize the Fioricet has worn off and I have to take 2 in the middle of the film so I can get through it.

I finish reading the lyme book, "Cure Unknown," by Pamela Weintraub, It is incredibly well written and researched. It is the perfect combination of the minutiae of the science and the debate behind the controversy, while intermixing personal stories. The author herself has lyme, as does her husband and children. I can't even comprehend how she wrote this complex book, supported her family, took care of them and got through the pain of lyme at the same time. This is THE must read for lyme sufferers and their support systems.

I am supposed to go to NYC tomorrow for three days to catch up with old friends. A trip to New York before was a piece of cake for me. Halloween, a one night stay over, was relatively easy. Now, a 3 day trip brings all kinds of anxiety. What if I get sick while I'm there? Do I have my pain medicine? Can I keep up with the plans I've made and not disappoint my friends? I will have to nap each day I am there so I don't come home and crash. LYME SUCKS.

I have put feelers out to coordinate my screening of "Under Our Skin" I am hoping to screen it locally in January or February. My parents watched it with me the other night. I am grateful that they are now "in the know" and understand fully what I have been up against. My sister just took it home with her so my brother-in-law can watch it.

It is impossible to be myself in the cloud of pain. I so want to participate in LIFE, to enjoy my nieces and nephew, and my family. But there's a part of me that isn't there b/c I am forcing myself past the pain to be present. On a positive note, my taste has come back a little. It's almost weird b/c it's been 2 months and I'm not used to tasting things!

Friday, November 13, 2009

Disturbia - Rihanna

I listen to this song when I go for a walk.  The lyrics could be the lyme theme song.

What's wrong with me?
Why do I feel like this?
I'm going crazy now

No more gas in the rig
Can't even get it started
Nothing heard, nothing said
Can't even speak about it
All my life on my head
Don't want to think about it
Feels like I'm going insane

It's a thief in the night
To come and grab you
It can creep up inside you
And consume you
A disease of the mind
It can control you
It's too close for comfort

Throw on your brake lights
We're in the city of wonder
Ain't gonna play nice
Watch out, you might just go under
Better think twice
Your train of thought will be altered
So if you must falter be wise
Your mind is in disturbia
It's like the darkness is the light
Am I scaring you tonight
Ain't used to what you like

Sunday, November 1, 2009

Respite from pain - November 2009

I am driving home from a trip to New York City for Halloween. It is the third day of my period which, for the past year, has made me bedridden. Today however, I am driving down the New Jersey Turnpike after a fun night out in my favorite city. The sun is setting and making the yellow leaves on the trees that line the highway glow. I am crying because I am so grateful that I am not sick, that my body feels good, that nothing hurts. I am crying because my soul feels like it has come back into my body and that the pain that took over and made me disappear behind it has left.

I am watching E! Entertainment and there is a one hour special on about celebs and plastic surgery. It details some of the dangers of it and plastic surgery gone wrong. There are women who have had nose jobs and they are lying in bed in pain. I am having a hard time feeling sympathetic for them. After what my body has been through, I cannot imagine making the choice to make myself feel bad for vanity's sake. Having lived in LA as an actress and having gone to many auditions, I know what if feels like to not measure up. Before I got sick I might have entertained the idea of a little botox here and there, but now, I want to honor my body and be much less hard on what I see.

Today I take my last antibiotic. I have no idea what is in store for my body. I am trying to be positive and hope that the medicine that has been in me for 2 months will have gotten rid of the bacteria that made me so sick.

I have decided to organize a support group in my neighborhood for lyme patients. I have also decided to organize a screening of the film, Under Our Skin.