THE FIRST WEEK ON ROCEPHIN

For the past ten months, I have been giving myself an injection of the antibiotic Bicillin. Despite some rocky early episodes, the thrice-weekly Bicillin shot quickly became routine and I was glad to be on it as my strength slowly improved. At about the eight month point the drug started to lose its effectiveness. I added in the antibiotic Zythromax to bolster the effect of the Bicillin, and a few weeks ago I added Plaquenil (an antimalarial that can also treat Lyme), but my body still needed more effective medicine. The original plan was to continue this course until the end of June. In mid-May I decided to skip the last six weeks of Bicillin and instead start the Rocephin right away.

Rocephin can be administed by IV, but this means getting some kind of plastic tube put into my veins and left there 24 hours a day for the duration of the course of antibiotics. I have chemical sensitivity, so even the smell of plastic makes me feel unwell. The idea of implanting a plastic tube in my body gave me the heebie-geebies.

The other option was an enormous daily injection of 5 ccs of pain-killer mixed with Rocephin in powdered form. Last Thursday The Poet and I went to the doctor's office so he could learn how to give it to me. It is a strange kind of intimacy to have your loved one give you an extremely painful injection every morning, but I am grateful for it. This in one that I just couldn't do myself.

The first couple days on the drug were rocky, as I expected. Some of the anxiety and despair I felt when I first started Plaquenil came back on days one and two, and I had, as usual, some trouble sleeping.

Day three we left for a weekend trip to Portland, and that distracted me enough to keep the anxiety at bay. Whenever I felt my mood plummeting, I told myself I was on vacation, I hadn't dragged The Poet with me to another state to have us both be miserable, so I should give an outward show of cheerfulness at least. And you know what? It worked. We had a good time and my anxiety melted away completely. By Sunday I noticed that my energy was generally better than I expected.

For the past five days I have felt better, and more consistently better, since I don't know when. My night time sleep is starting to even out, I haven't needed a morning nap, and my days have felt more productive than before.

Tips:

The biggest trick I've learned is to move around after the injection. The Poet gives it to me in the morning before he goes to work, and after that I try to be active, even if its just watering the garden. Yoga helps, as do a few minutes meditation before my afternoon nap and before bed.

For those who are chemically sensitive or who have a stressed out liver (and who doesn't) procaine can be used in the injection solution instead of the usual pharmaceutical pain killer. Procaine is non-toxic and breaks down into B vitamins. Ask your doctor about it or leave a comment for me if you need more details.

ON WHY I SHOULD LISTEN TO PEOPLE WHO KNOW MORE THAN ME

For weeks my physical therapist, Robyn, has been bugging me about my shoes. The first appointment I had with her she told me there was a Mary Jane shoe by Dansko that would alleviate my tendonitis.

She told me the same thing on the second and third weeks, and the fourth and fifth, always with a smile and laugh, never with an I-know-better-than-you attitude. Nevertheless I resisted. My excuses being I liked my old shoes, I had no time to go shoe shopping (I truly didn't), I didn't want to spend the money, and I had a problem with shoes with an elevated heel.

The last excuse was the biggest and most legitimate. Even the lowest heels did something to my posture that made me exhausted. I always chalked it up to the fatigue from Lyme disease and gave up on anything but absolutely flat shoes.

So I held out. I wore the flimsy, converse-style sneakers I already owned and Robyn had reluctantly conceded might be OK. Weeks went by and my tendonitis slowly got better, then got a little worse, then a little better and then worse again. At last I had to admit it might be worth giving the Danskos a try.

When I put them on, I was amazed. My feet simply felt good. Walking around in them made my lower legs actually feel stronger, and made me feel happier. I kept them on all day, and went for a long walk in the afternoon.

After the walk my heels hurt and my Achilles tendon felt cramped. It was the elevated heel on the shoe.

I stretched my Achilles gently, and again before bed. I stretched them when I woke up in the morning, then decided to make a leap of faith and put the Danksos on for second day. I kept them on until the end of the day.

My calves ached here and there, and my Achilles tendon still needed stretching, but by the third day, my body had adjusted.

I am now wearing these shoes every day and I love them. I feel stronger when I have them on, my legs feel stable (there’s no other word for it) and I feel just a little bit more relaxed and confident, all the time. It’s great.

Post Script on the Tendonitis:

This has not cleared up entirely yet, but the new shoes have been a big—well—step forward. I am continuing with the myofascial release and physical therapy and making slow progress that has nonetheless been consistent over the past month. Robyn has admitted my recovery is slower than most peoples’, and we’ve chalked that up to Lyme disease. It will likely be months more before I am dancing again. Meanwhile, I’ve rediscovered the joy of yoga and am getting reacquainted with sit-ups and push-ups.

TAKE ME OUT TO THE BALLPARK

My last post was bleak. Up until Saturday afternoon I was feeling at the end of my rope with the side-effects of plaquenil. On Friday I had a session of SRT (more on this wonderful relaxation technique in an upcoming post), which lifted my mood and helped me feel I was stepping out of the morass of crazy thoughts I’d been having since I started plaquenil.

But it wasn’t quite enough. I woke up too early on Saturday morning, feeling terrible again, spent too much time trying to get back to sleep, and by the time I was out of bed The Poet was heading out the door with a stack of books in his hand. He grumbled something about needing to have time to himself. I know from experience to let him go at these moments, no matter what I’d planned or hoped for the day. We call it “Poet Time” when he goes off for the day to read and write. He’s usually home around 4 and in a good mood once again.

I, however, was not in a good mood. I called friends to find someone to go for a walk with me, but ended up on my own, feeling more and more blue. I ran an errand, read, did yoga, cleaning the kitchen and tried to nap. I just barely dozed off and woke up feeling even worse. I began to cry when I got out of bed—and there were those crazy thoughts from the plaquenil again. At least I had sorted out that it was the plaquenil and not the state of reality that was turning my thoughts black, but it didn’t seem to make me feel any better.

“Just keep going,” I told myself, and started packing my gym bag, hoping exercise would help. Just then The Poet came home. I expected to find him cheerful, but he seemed even worse than he had been in the morning. I didn’t know what was going on, but I knew better than to ask. .

Usually on weekends we invite friends over and sit on the floor around our coffee/dinner table, we eat and talk and laugh and the time flies by. When it’s just the two of us we go out for Indian food, sit in a booth and read books together. It seemed like we were heading for the second option, which I didn’t think would lift either one’s spirits.

“Come on, let’s do something different,” I said. "Let's go out somewhere." I was willing even to splurge a little to get us out of this funk. After calling the opera and finding there were two tickets left for $300, we decided on baseball. There were plenty of Mariners’ tickets for resale on craigslist.

Leaving The Poet in charge of buying, I ran off to the gym for the quickest of workouts and then rushed back home. There was the usual hassle of taking all my medications and being sure I had my water bottle before we could leave, nonetheless I was excited. At age seven, I could recite the entire roster and vital statistics of the 1980 World-Serries Champion Philadelphia Phillies and I loved to go to the Baltimore Orioles games and cheer for slugger Eddie Murray.

Once we were on our way to see the Mariners I was truly happy. So of course I started to sing “Take Me Out to the Ballpark.” Only The Poet, being from Egypt, didn’t know the song. I tried to explain the importance of it to him, but he was still in a grouchy mood and didn’t want to listen.

“I know my own songs, but they’re from Egypt, so nobody can sing them with me,” he griped.

“But this is the baseball song—you need to know it if you’re a baseball fan!” I told him. It was no use. He wouldn’t let me teach it to him, which maybe is understandable, given the way I sing.

As we got closer to the stadium he cheered up. It was a beautiful, sunny evening, perfect baseball weather.

I called my parents and told them we were on our way to a baseball game. They said they would sing the song for The Poet. I handed the phone to him as they started to sing, but he quickly handed it back to me. There were baseball fans j-walking in front of us, a parking attendant signaling him to go one way and a policeman signaling him to go another. Better to be ignorant of the lyrics to “Take Me Out to the Ballpark” than to get into an accident on your way to the game.

We drove in circles and finally found a questionable parking spot on the street, then rushed to the stadium in time for the second inning.

It was as good as I had hoped. The Mariners didn’t win, but there home runs and double plays, and peanuts and crackerjacks (which of course I can’t eat anymore), and lots and lots of cheering. We did the wave, and when the seventh inning stretch came around, The Poet was surprised to hear the whole stadium singing my annoying little song. The lyrics were on the TV screen; he got to his feet and sang along. I looked over at him and he was smiling.

*******

We went to bed considerably cheered up. As we headed home from the game I remembered the last baseball game I had gone, about five years ago, had been a disaster. To my Lyme-sensitive ears the roar of the crowd and the loudspeakers was unbearable— I went home exhausted and with a headache. This game had been no quieter, but entirely different. It had been fun. That is one Lyme symptom that has simply gone away—extreme sensitivity to noise.

I woke up too early again the next day, but instead of trying to get back to sleep, I just got up and started writing. When the Poet got up I suggested we go down to the Pike Place Market for breakfast, something we hardly ever do because I usually don’t feel that great in the morning. This morning I decided to ignore the aches and weariness, and I think just moving around a bit did me good. As the day wore on I kept waiting for plaquenil’s dark influence to take over my brain again, but it didn’t, nor has it today.

For the past couple weeks I have been working hard to combat plaquenil’s side effects—yoga, sauna, extra exercise, extra charcoal capsules and meditation. But sometimes what you need is to stop thinking about it all, break the routine and just have a good time.

ON PLAQUENIL

When I started this blog I resolved not to write when I was down. There are plenty enough cries of anguish on the internet when it comes to chronic illness, and I’m not sure it does anybody any good, particularly not the readers.

Suffice it to say, things have been a little crazy around here for the past few weeks, and not in a good way. Since I've added Plaquenil to my mix of anti-Lyme drugs, I have despaired. Not because I am feeling worse physically-- not at all. This drug messes with my brain, and I find myself swinging wildly between the bleakest thoughts and a buoyant sense of progress toward a bright future, and back again to feeling my life is nothing but useless suffering.

I am figuring out how best to ride this out. In the past I have relied on patience and attitude to deal with fatigue, insomnia, and any number of physical sufferings. The problem with Plaquenil is it takes away my good attitude and my patience. So far, all the usual naturopathic and homeopathic tricks have made little headway. I took Plaquenil before, about a year and a half ago, and Carolyn Humphreys did something magical to calm down my system. I have not been able to replicate it at home.

I’m starting to think the way through the next little bit is beyond the bounds of things I’ve considered before. I have a few ideas I’d like to try and if any of them work I will blast it loud and clear.

Meanwhile, despite not having had nearly enough sleep, I have a strong desire to make some gingerbread, so I’m off.


*******

MARVELOUS MELLIFLUOUS MOLASSES GINGER BREAD (not for the faint of heart)

1.5 cups flour (I use brown rice or millet flour plus a teaspoon Xanthan gum, but your favorite whole grain flour will do)

1/2 teaspoon baking powder

1/2 teaspoon baking soda

1/4 teaspoon salt

1 teaspoon (or more!) ground cardamon

1/4 teaspoon ground clove

1 stick butter (coconut oil can be substituted)

1 large egg

3/4 cup molasses and honey mixed

2-3 Tablespoons fresh ginger, minced or shredded

Bake in a buttered bread pan at 370 for 25 to 35 minutes

Let cool before turning out of pan onto a cooling rack

Today I added 1 teaspoon ground coriander and used mostly molasses so the bread came out very dark and spicy, just the way I like it. If you want a sweeter, milder bread, cut down on the ginger and molasses and increase the honey.

LIVING INSIDE THE BOX

At my appointment with Dr. Martin Ross last week I asked him if Lyme disease was causing the ongoing Achilles tendonitis that has brought my dancing to a halt and curtailed most of my other physical activity. "Absolutely," he said, explaining that Lyme causes inflammation, which often effects tendons as much as it does joints.

So here it was again-- Lyme, my most intimate relationship, so invisible, so close, my old friend and my greatest enemy. Knowing for sure that Lyme was the cause of my latest problem shifted my perspective. It was an explanation at last for what as seemed so very strange to me. In January the pain in my heels came out of nowhere, for no apparent reason, and in the months since I have found no easy treatment for it. I've made small gains with physical therapy, but progress has been slow and frustrating. If the problem is Lyme than it is deeper than I thought, but there are also more ways to treat it.

For the past two years I have been beating Lyme with determination, patience, a bit of intelligence and (unfortunately) lots of cash. Recovering from Lyme has been the first priority in my life, not out of choice, but out of recognition that there was no other way. For the last six month, however, I'd been trapped in a real estate venture that often forced Lyme into onto the back burner. There was no way to say that the tendonitis was a direct result of that, but now was the time to redouble my efforts.

Thinking I was on familiar territory, I started the week with a plan to get the upper hand on Lyme and tendonitis:

1) Add plaquenil to my medical regime as Dr. Ross had suggested
2) Add a high dose of turmeric to my supplements, to control inflammation
3) Get a bike so I could exercise outside without having to aggravate my tendonitis by walking up hills
4) Stretch, stretch, stretch

Each day I checked an item off my list, feeling satisfied. It was all about keeping focused. On Saturday I filled my plaquenil subscription, on Sunday I made up my own capsules of organic turmeric bought at the co-op. I had fewer side effects on the plaquenil than I expected, and by Tuesday my energy was even improved, apparently thanks to the plaquenil. On Wednesay morning I walked to the neighborhood bike store for a helmet. When I mentioned I was riding again for the first time in years, I got into a conversation with the mechanic about Lyme disease and how I was recovering from it. As I joyously mounted my clunker craigslist bike on Wednesday afternoon, I thought I had it all figured out.

By Wednesday night my heels and lower calves were hurting again. It seems my brilliant solution to exercise—to ride a real bike, outside—had set me back again. Just a little, but enough to give me pause.

My legs and lungs and heart are longing for long, hard exercise, the kind that would get my blood pumping and make me feel high from the joy of motion, the kind that would have me sleeping deeply at night and leave me a little stronger, week by week. I long, in fact, for the kind of exercise I was doing in January before the tendonitis started. I have to hand it to Lyme—it is a clever adversary. Just as I was turning that corner where my body could at last get stronger of its own accord, Lyme has managed, in turn, to hobble me again.

And there is nothing to do but accept that.

On Sunday, as I packed capsules full of turmeric, I imagined writing a blog post about will power. Instead I am writing this one, about limitations. Now it seems apparent it is not the power of my will that matters, but its flexibility. It's the same game I have played for years: recognizing my limits and working within them, and finding the happiness to be had there.

For the foreseeable future I can't go dancing, or for long, hilly walks, or ride a bike outside. There are other ways to enjoy being outside, however (like writing a blog entry while sitting in the garden, for example), and other ways to enjoy being in my body. After all, two years ago I was living with much greater physical hardship than this. Once I’d remembered that and accepted that riding an exercise bike was the best thing for me for now, I enjoyed my stationary bike ride at the gym more than I had before.