Today for lunch I had three handfuls of raw cashews and a serving of arugula braised with garlic and beef broth. The arugula tasted good. About 15 minutes after eating I got very nauseous. I thought I might throw up -- very rare for me. Then I started to sweat, and get burning pains in my joints. The nausea passed fairly quickly, but more than 2 hours later I am still sweating like a pig.
This is my second big sweat of the day -- I had one this morning, a little while after I took my morning meds (Malarone and Tinidazole right now).
I wonder if bitter greens have benefical effects against tick-borne infections? According to this article, Japanese knotweed is a bitter green, but the part that is used as an herb is the root, I think.
I am noticing on this combination of meds that I have more energy. Yesterday I actually did a tiny bit of dusting, and I just finished a 36" x 48" afghan after only 2 weeks. And today, I did 2 loads of laundry. I still feel completely pithed -- devoid of personality and life -- but it's good to be able to do a little bit more.
a Baltimorean with Chronic Lyme Disease
Thursday, September 22, 2011
Wednesday, September 21, 2011
Trying to be somewhere else 3
Another day. More diarrhea. My ninth year. The only days in that time that I have not had diarrhea were just after my cancer surgery, when I was given anticholinergic medications, and for a brief 5-week period right after I first started taking Malarone. Adding the Lyme meds back in started up the diarrhea again.
Today's happy memory: singing White Coral Bells with my mother in the backyard of our first house in Denver. I remember that it was a nice day, that we were sitting on the ground (maybe doing gardening?), and that she wasn't angry...a rarity in my childhood experience.
White coral bells
Upon a slender stalk
Lilies of the valley on my garden walk
Oh don't you wish
That you could hear them ring
That will happen only when the fairies sing
We sang it in a round (my first experience of that) and it was achingly pretty.
Today's happy memory: singing White Coral Bells with my mother in the backyard of our first house in Denver. I remember that it was a nice day, that we were sitting on the ground (maybe doing gardening?), and that she wasn't angry...a rarity in my childhood experience.
White coral bells
Upon a slender stalk
Lilies of the valley on my garden walk
Oh don't you wish
That you could hear them ring
That will happen only when the fairies sing
We sang it in a round (my first experience of that) and it was achingly pretty.
Monday, September 19, 2011
Trying to be somewhere else 2
A lot of inflammation, today. Pain in my hands, feet, hips, and jaw, and deep fatigue. I had a list of four things to do today, and I only did one.
Time for more memories...
I am hiking in the Columbia Gorge with my friend Colleen, in college. She showed me a place with a short hike to a beautiful pool. On the day we went, there was no one else there, and we took lunch. I remember walking through tall trees, and being aware of my total insignificance -- how unimportant I was in the scale of the gorge, or even of the oldest trees -- and feeling happy and at peace.
I loved those hills. The Elephant Hills -- that is how I used to think of them, because their skin and shapes reminded me of an elephant's.
Time for more memories...
I am hiking in the Columbia Gorge with my friend Colleen, in college. She showed me a place with a short hike to a beautiful pool. On the day we went, there was no one else there, and we took lunch. I remember walking through tall trees, and being aware of my total insignificance -- how unimportant I was in the scale of the gorge, or even of the oldest trees -- and feeling happy and at peace.
I loved those hills. The Elephant Hills -- that is how I used to think of them, because their skin and shapes reminded me of an elephant's.
Friday, September 16, 2011
Night walk
I went for a walk tonight. Even a year ago, this statement would have been commonplace, but since then I have hardly walked. On the combination of tinidazole and Malarone, I'm having less joint pain than I have in a long time, so tonight on the spur of the moment I decided to give it a try.
I took it very slowly, and only went to the end of the block and back. It was cool, cool enough for me to feel it through the sleeves of my fleece jacket, and the air smelled of wood smoke. On the way down, other people were coming and going on the street; a neighbor returning home with his date, a man leaving on a bicycle, someone dropping others off in a car. The crickets were chirping, stopping one by one as I walked by and restarting after I had passed. On the way back, it was just me and the crickets.
I felt a little bit unsteady without my walker, and my right arm went numb during the walk (I have been having neuropathy again since I took the medication break), but it felt good to be moving. I hope I will be able to do it again soon.
I took it very slowly, and only went to the end of the block and back. It was cool, cool enough for me to feel it through the sleeves of my fleece jacket, and the air smelled of wood smoke. On the way down, other people were coming and going on the street; a neighbor returning home with his date, a man leaving on a bicycle, someone dropping others off in a car. The crickets were chirping, stopping one by one as I walked by and restarting after I had passed. On the way back, it was just me and the crickets.
I felt a little bit unsteady without my walker, and my right arm went numb during the walk (I have been having neuropathy again since I took the medication break), but it felt good to be moving. I hope I will be able to do it again soon.
Monday, September 12, 2011
Trying to be somewhere else
Tonight I went searching in my mind for somewhere else to be. This has been an intolerable summer -- getting fired by Dr. L in May, being diagnosed with C. difficile in June, clearing the infection with extremely high doses of probiotics only to be diagnosed with two other infections in July. For those I caved and took antibiotics, which plunged me back into severe diarrhea that resisted even the high-dose probiotics, and...I broke. I stopped taking the Malarone and the Tinidazole and the Artemisinin and the antifungals and all my supplements, and I started thinking about ways to die.
This week, I realized that I can't kill myself. It goes against my nature. It was a blow...I always thought that if this got bad enough I could end myself, but I can't. I can't even feel angry at the pathogens -- they are just doing what they do, trying to survive and reproduce like everything else. I do feel like a prisoner in my house; I do feel a terrible anger at the politics of Lyme, which leave patients trapped in this quicksand, losing function, ability to work, respect, even connections to their friends and communities, while the two Lyme political factions argue about which is righter. So, I'm trapped here in this hell, and to escape I went searching in my mind for a time when I was happy.
The memory that came up was of a lovely day in summer. Mom's studio addition had been finished, and I was lying on my stomach in the grass outside its sliding glass door, watching the ants. I remember that I would put my face right down into the grass, as close to the ants as I could get, so I could see the grass from their perspective -- giant curving green spears. I watched the ants going about their business; sometimes one would crawl onto me instead. Around the bases of the grass blades was dry vegetable matter from last season's lawn, pale and sweet smelling. The day was warm, but not too hot, and I could feel the tips of the grass blades poking my stomach through my shirt. I don't remember any sounds but the rustling of the grass. I felt happy.
Memory excursions. Another one: running in Wisconsin in the evening, in my extra-warm insulated tights, listening to a recording of Bridget Jones's Diary. The book was so funny that I'd laugh out loud, stop and hold my sides and laugh, then run on. -- Or -- the starling stagings at the season-changing times, where suddenly out of nowhere, you could see hundreds, maybe thousands, of starlings taking off all at once, then forming a hologram of flight in the air -- a shape like a water balloon, turning and squeezing, drawing itself out and collapsing again, but always controlled by the speed of the birds and their proximity to each other.
Maybe this is how I can get through the time till I can see Dr. J in November. Just to be somewhere else in my head, somewhere that I was happy. Right now I would like to go back to that grassy lawn, and lie there all night watching the ants.
This week, I realized that I can't kill myself. It goes against my nature. It was a blow...I always thought that if this got bad enough I could end myself, but I can't. I can't even feel angry at the pathogens -- they are just doing what they do, trying to survive and reproduce like everything else. I do feel like a prisoner in my house; I do feel a terrible anger at the politics of Lyme, which leave patients trapped in this quicksand, losing function, ability to work, respect, even connections to their friends and communities, while the two Lyme political factions argue about which is righter. So, I'm trapped here in this hell, and to escape I went searching in my mind for a time when I was happy.
The memory that came up was of a lovely day in summer. Mom's studio addition had been finished, and I was lying on my stomach in the grass outside its sliding glass door, watching the ants. I remember that I would put my face right down into the grass, as close to the ants as I could get, so I could see the grass from their perspective -- giant curving green spears. I watched the ants going about their business; sometimes one would crawl onto me instead. Around the bases of the grass blades was dry vegetable matter from last season's lawn, pale and sweet smelling. The day was warm, but not too hot, and I could feel the tips of the grass blades poking my stomach through my shirt. I don't remember any sounds but the rustling of the grass. I felt happy.
Memory excursions. Another one: running in Wisconsin in the evening, in my extra-warm insulated tights, listening to a recording of Bridget Jones's Diary. The book was so funny that I'd laugh out loud, stop and hold my sides and laugh, then run on. -- Or -- the starling stagings at the season-changing times, where suddenly out of nowhere, you could see hundreds, maybe thousands, of starlings taking off all at once, then forming a hologram of flight in the air -- a shape like a water balloon, turning and squeezing, drawing itself out and collapsing again, but always controlled by the speed of the birds and their proximity to each other.
Maybe this is how I can get through the time till I can see Dr. J in November. Just to be somewhere else in my head, somewhere that I was happy. Right now I would like to go back to that grassy lawn, and lie there all night watching the ants.
Saturday, September 10, 2011
Prison bricks
A cricket was trapped in the wall tonight, in one of the little spaces between my house and the house next door. It was valiantly rubbing its wings together all evening, putting out the call for a mate even though it was trapped where I couldn't see it.
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