In early summer 2008, I cut the back of my hair off. It was a very practical decision. I had terrible night sweats. I woke up with sopping wet hair night after night. It was unbearable to try to go back to sleep without towel drying my hair. It was like stepping out of the shower straight into bed. I hated it.

Cutting off my hair worked wonders. I still excreted the same amount of fluid from my scalp, only it got soaked up by a towel. Then when I woke up drenched, I could wipe off the back of my head and change the towel I was sleeping on (and my clothes, but that’s another story). It was a less involved, more effective way to dry off enough to go back to sleep.

I continued to do this all through last summer and fall (2010). Then something switched in me. I wanted to feel sexy again. It’s hard to feel sexy when I’m in the throes of intense, chronic pain. Or when I’m dealing with recurring bouts of diarrhea. Or seeing my dry, irritated skin age rapidly in response to all the drugs. Or when I can’t move my legs enough to walk or stand with ease. Or when I choose clothes that look like college pajamas (what I call semi-jamas) because nothing else is comfortable against my overly sensitive skin and aching body. Sexy had been off the table since winter 2007. My short hair was just one more accommodation of the disease that took over my life.

Summer 2010, I was starting to walk a little more. I’d been on antibiotics long enough to have some motor control of my legs. The summer heat was making my body more limber. I was taking anti-malarial drugs for Babesia, and as the infection got under control, my energy level was reaching the point where I could go for a short walk in the neighborhood. The skin on my legs was less sensitive, enough so that I could wear skirts and dresses for the first time in three and a half years.

Add that to having turned 35, and I wanted to be sexy again. I guess there was a clearing in the clouds of despair and pain that shined a little light on the idea that I might have a life beyond Lyme disease someday. I wanted to feel female again, rather than only feeling sick. I wanted to feel sexy again. For me, that meant letting my hair grow long again, reclaiming a part of my body that I love and makes me feel sexy.

These past few weeks, a few things have converged to make me ponder the hair question. First, I’ve had really bad night sweats again. They aren’t quite at the level of past summers. I’ve had several nights of wet hair, just not quite wring-it-dry levels. In the middle of the night, I think about buzz cutting the back of my hair again. By morning, I’m not so sure.

The second thing is that my hair is now long enough to braid when I go to yoga class. This is a milestone in the length. My preferred hairstyle for yoga is pigtails flat against the sides of my head. That way my hair doesn’t get in the way in any yoga position and doesn’t move around during vinyasas. My hair is now long enough to braid and have a bit left over at the bottom to curl up and stay in place without a hair clip.

The third thing was getting dressed up a few times over the past week. I liked that my hair was long and curly and shiny, matching the style of my dress clothes. And when it got too humid at the wedding, my hair was long enough to pull back into a clip and still look good.

I’m sure that my interest in my looks and my hair has all sorts of internalized sexism mixed in. But that doesn’t take away from the struggle that women like me, women with chronic Lyme (and other chronic debilitating diseases), have in feeling like a woman, in being feminine in whatever ways have meaning to them, in loving their  disease-ridden bodies and in being proud of the decisions they’ve made to keep themselves going.

For now, I want to be girly with long, curly hair. For now, I’m still heading towards living again, away from accommodating my illness. For now.

Coiling

• Bartonella, chest, 2 minutes; abdomen, 5 minutes
• Babesia, ilium, 1 minute each side; knees/elbows, 1 minute; liver, 5 minutes; chest, 5 minutes
• Candida, abdomen, 10 minutes; chest, 2 minutes

Detox

• skin brushing
• BioMat (60 minutes, level 2, in this weather, enough to work up a sweat after a while)
• kombucha (2 cups)
• sunshine and a walk in the neighborhood

Body

Sleep is going better. Even though it took a long time to settle in and fall asleep, I didn’t wake up at all last night. 7 straight hours, then one more before I got up.

I was pretty wiped out. I spent most of the morning (till 1pm) in my pajamas, either lying on the daybed or reclining on the couch with my legs up. I convinced myself to go food shopping for a few necessities. After that, I was about done for the day. I rested some more. That’s all I could do.

I’m still suffering from diarrhea. It isn’t constant. Several times during the day, it’s urgent and copious and unformed. I feel like I’m shitting out my organs rather than whatever food I’ve managed to consume. I don’t have much of an appetite, so I’ve been forcing myself to eat.

I’ve had urinary hesitation sometimes, but not consistently throughout the day. That symptom got me to finally call for my follow-up urology exams to see if the kidney stone on the right side is still there.

I have a sore throat with all the fixin’s. My ears are popping. My ear canals hurt. I’ve got sound sensitivity. My sinuses are congested (but not completely stuffed). My bronchial tubes feel raw. I imagine the respiratory and digestive symptoms are from the homeopathic remedy. But I’m not sure.

My feet are cold. They have been for a few days, even when I’m warm enough to sweat. I finally decided to put on socks. Much better.

My headache didn’t come on until late this afternoon. It was quite a relief not to deal with it for most of the day. I had light sensitivity and eyeball pain to go with it. Earlier in the day, I had a lot of floaters in my vision, which have returned tonight.

My spine bones are sore to touch. Oddly, I didn’t notice how sore my ribs have been until they stopped being sore today. (I noticed because my bra didn’t irritate my ribcage which it had been doing, but I never remembered to blog about.) I’ve still got low back pain, but less severe than the past few days.

Meanwhile, the rash on my chest is now red and puffy, in addition to hot and itchy.

I could use another good night’s sleep.

Disclaimer

• Catching up
• Slow down to remember what I know

Categories: healing process

Tags: babesia, bartonella, candida, homeopathy, kidney stones, lyme, symptoms

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