Monday, December 23, 2013

JUST ADD BOMBS


 

My house in Wallingford, site of many woes these past months.


Three days ago, on January 20th, I made it the airport for my end-of-year flight back to DC. It felt like no small feat. It was the end of a long, weird year. 2013 started with me freshly turned forty, swiftly followed by freshly single, and as a result with no place in Seattle to live so lingering on, like stale forgotten flowers, at my parents’ house for six months.

 

Also this year I was bitten by a tick, either while swing dancing, or on my way home from swing dancing in urban DC. That was June, which I largely spent wiped out on antibiotics. In August, finally out of my parents’ house and optimistically settling into my aging craftsman house in Seattle, I launched a basement remodel that I’d expected to take one month and instead took five, (and probably took five times the money I’d planned on, although I stopped totaling up the expenses, as a way to avoid crying).

 

The first couple months of the remodel, with people coming and going and making tremendous noise and wanting to talk to me no matter what I happened to be doing, were difficult. It was all so antithetical to my quiet, hermetic, artistic way of being that I had to control myself from screaming on a daily basis. I was working with people who were mind-bogglingly difficult to work with, and with others who were as lovely as angels, if angels ever came to earth in the form of plumbers and carpenters and handymen—carpenters and handymen who make a tremendous racket as they tear apart portions of your house and then expect to have conversations with you about it, whether or not you’re trying to eat lunch or take a nap or be quietly artistic at that moment.
 

 TROUBLE, CHEMICAL-WISE

That was the first part of the remodel, when I was chronically refraining from screaming. Round about mid October, just after the new concrete floor and had set and the new windows were installed and the first of the framing went in, I got sick from all the chemicals in the construction materials. Suddenly one afternoon my arms shook and my teeth chattered, although I wasn’t cold, and my heart was racing about two hundred and fifty beats a minute. All I could do was watch my flapping hands while I sobbed uncontrollably and thought about how impossibly hard it was to put one foot in front of the other.

 

The tiny part of my brain that still operated rationally connected how I was feeling to the intense smell of carpenter’s adhesive that had risen from the basement and filled the first and second floor in the last few days, no matter how wide I opened the windows. This rational brain screamed at the much bigger, louder irrational part of my brain until I managed to pack up a few things, find Cleo’s leash and her food, and go to spend the night on my friend Ghusun’s couch.

 

It should have come as no surprise to me, that this had happened. I have had extreme chemical sensitivity for years. On a regular basis I fret about inhaling perfume and air fresheners. I scrutinize the labels of all food and skin products I buy. i worry about the finish on furniture and I hold my breath when a diesel truck drives by. Certainly I was going to buy low V.O.C. paint for the house, but I didn’t stop to think that the plumbers used chemicals when installing pipes, and the carpenter used chemicals when gluing in the framing, and the concrete sealant I’d put on the basement walls, to keep out water and prevent mildew, was chock full of chemicals. No wonder I was trembling and shaking and paralyzed with panic.
 
Ghusun told me to stay as long as I needed. I thought I’d be at her place for a week or two, until the remodel was done. Six weeks later I was still there. Her living room was now my home. Ghusun, caught up in her own professional worries, was too distracted to notice how much time had gone by, or that I was now closer to her roommate than her temporary guest. We’d developed a routine that included me cooking dinner for both of us, or making large elaborate salads which we shared each night. Then she did some work she’d brought home from the office and went to bed, while I took Cleo for long walks. I was deliberately staying up late so I’d be asleep and out of Ghusun’s way while she got ready for work in the morning.


FURTHER COMPLICATIONS, FOUNDATION-WISE
 
By then I’d discovered that very important parts of my house, large wooden parts that connected the walls and floor to the concrete foundation, were rotting, and also that other parts of my house had no foundation at all. But not to worry because these things were slowly being taken care of, although at times they were even more slowly not being taken care of, because the people who had agreed to take care of these things went to other houses to take care of other things that they’d also agreed to take care of, before they’d agreed to take care of my foundation-related things. Thus these other things took priority over my things, although my things, being related to my foundation, were very, very worrying to me.

 
Also for various reasons, my foundation things had to be taken care of before the rest of my basement remodel could be taken care of. My house now looked like a patient cut open on a heart surgeon’s table, and the doctors had walked away. For days and weeks it stayed that way, lonely and abandoned. Sometimes I picked rocks out of the mounds and mounds earth that had been dug up around the foundation, and I put the rocks in piles as a way to console myself.


VARIOUS KINDS OF WAILING

During those weeks, I was often failing to refrain from screaming and crying, but generally managing to do the screaming and crying when only Cleo was there to witness it. I was living too far from my house, which I still needed to go to every day, not to mention the drives to the Home Depot and the Green Depot (more on that in another post) and as a result I drove more than I should and my tendonitis came back. I stopped going swing dancing and scarcely wrote at all. I didn't want to leave Cleo alone at Ghusun's, so she rode in the back of my car and gave out operatic wails every moment we were in motion, no matter how many dog toys and bones and toy-treat-dispensers I bought to distract her. The back seat of my car was slowly being coated in dog hair.

After six weeks at Ghusun’s, I decided I could impose on her no longer. Through airbnb I rented a townhome one block from my house, which was empty while the owner stayed in England for visa issues. This townhome was nice, but lacking in south-facing windows, and the darkness made me feel I was suffocating sometimes, but on the whole I was better off being in my neighborhood. I missed Ghusun, who had come to feel almost like family while I was living in her apartment.

 

 
My house at last attached to new foundation.
 
 
At last the foundation of my house was fixed. The people who had promised to come work on my basement, however, were not coming to work on my basement. I called them every day and they told me everyday they were coming right over to put in the insulation and start the drywall, etc. And still they did not come. By then I was screaming and crying in the presence of other people, although these people were not the people who had promised to work on the basement, because, as I have mentioned, those people were not around.

 
All the while I had been postponing many planned doctors’ appointments because I didn’t see how I could change medication while I was under so much stress, or because I was looking for dog day care for Cleo who no longer had a yard to run around in, or because I was researching places to stay on the airbnb website. And also because I was packing my things and lugging them out of Ghusun’s, then unpacking them at the airbnb, then spending the good part of a day figuring out to connect my laptop to the abnormal form of wireless system in the townhome. Most of all I didn’t go the doctor because I was calling people and asking them over and over to please work on my house. All these things took a lot of time. It was not time to try to improve my Lyme symptoms.
 

LUXURIOUS PROBLEMS TO HAVE

I once not only played rugby, but my position was in the front row of scrum, and I loved every minute of it. With no journalism experience, I took a plane to Buenos Aires and was soon making a living as a news reporter there. I've climbed a volcano in Chile, and when I lived in Mexico City I endured forty minutes of sheer terror when my house was robbed in the middle of the night. Not to mention the five years I lived trapped in bed, not able to stand up long enough to brush my teeth, and without knowing the name of my illness. Also, I lived for seven years with an angst-ridden, argument prone, Marxist poet.

I have the  kind of grit that allowed me to send a short story to ninety-four magazines and endure ninety-four rejections before I finally got it published. But a basement remodel (which is a luxurious problem to have) unhinged me. I was obsessed and helpless and miserable and wishing I desperately I could walk away from my broken-open house. And yet I knew the only thing that would set things right was to have my house finished, filled with fresh air and sunlight the way it had been that summer, because the complicated balance of my health depended on a quiet, sunny place where I could be at peace.

At last I made it to see my naturopath. She told me to drink more Green Juice (brand name “Just Veggies,” made by Columbia Gorge Juice Company, and consisting mostly of kale and parsley juice). She said it would help me detox all the chemicals I’d been exposed to while living at my house. I drank more Green Juice, and the more I drank, the less I cried. The basement still did not get done, but I shed fewer tears over it. I went out to the Century Ballroom on swing dance nights. I had heavenly dances with men of all heights and ages and colors and dance styles, and some of these men even asked me for my phone number, but how could I explain that I was too stressed out to date anyone because I was renovating my basement?

Dancing: source of reliable joy.
 

Finally, the contractors actually did some work, and along the way tried to convince me that leaving out part of the insulation was just fine (they had run out and didn’t want to make an extra trip to get more), and that if water in one of my hose pipes froze during a cold snap it wasn't their fault (although they weren't sure they'd put the insulation into my walls correctly), which meant I kept running over to my house whenever I could stomach it, strapping on a gas mask and inspecting things I didn't quite understand in the basement, so as to reassure myself things were OK.

Just as things were nearing the end, said contractors tried to convince me that the floors were beautifully stained with the soy-based colorant I'd found (called SoyCrete), when the floors were half-covered with spills and streak marks that looked like the work of a two-year-old, while the other half the floors looked like no colorant had gone it at all.

 
I had to argue and cajole and send many an angry text message to get these men to agree to redo the floors. I drove back to the Green Depot for a non-toxic stripper called Eco Etch Pro and more of the floor colorant made out of soy beans, which the contractors had used so disastrously the first time. There were now less than four days left before I flew home to DC.

The HVAC guys came to add a ventilation fan to my heating system (this was now three days before my flight home) and in the process put holes in the newly finished drywall and broke a newly hung door. I made frantic phone calls to negotiate with the HVAC company about having these things fixed that very same day because the floors needed to be re-stained that night and the last light fixtures installed before I left.

And then I was twenty-four hours away from flying home. The basement was finished. I had paid the HVAC guys. After I’d seen that the floor was done right, I had paid the knuckle-headed contractors. That afternoon I would pay the angelic handyman who was repainting the second floor, and the next day I’d write a check for the absent-minded-but-angelic electrician.

I was recounting all this on the phone to my mother while I walked down the glossy oak stairs of the gloomy airbnb townhome. Suddenly I lost my footing. My socked feet slid straight out from under me and I landed flat on my back, my spine smashing down on edge of a step. It hurt, and kept hurting excruciatingly that day and the next. Lifting things, like my shoulder bag, was painful.

 Nonetheless I managed to get organized and packed, and paid everyone for their work. The next day I made it to the airport with two suitcases, a carryon, a forty pound dog, and dog crate. Thank heaven for curbside check-in.


Cleopatra, seasoned traveler.

 
At last it was just me and my carryon, walking and wheeling our way down the long hall of Concourse C. I found a seat at the gate. My back hurt but I had done it. I had limped to the finish line. It was January 20th, the solstice, the shortest day of the year. The long, crazy twelve months of 2013 were behind me. I took out my organic parsley, carrot, and cauliflower salad. I had piece of good, goat milk cheese I’d found when cleaning out the fridge the day before. This was lunch and I was enjoying it.

The man sitting next to me turned to me and said:

“Excuse me, but are you going to be here for awhile? Would you mind watching my bags while I go get something to eat?”

Yes, someone in a crowded airport really asked me that. As if it were the most normal thing in the world.

Meaning what? Had the harrows of this year left me so beaten down that the words “Will gladly be decoy for time bombs” were now tattooed to my forehead? Had I been steamrolled to such an extent that I was now flatter than a doormat? I had once been a confident, go-getter-Ivy-league-graduate, dancing like a Peanuts character at Christmastime. And now I was apparently just a worn-out old-maid, eating hippy vegetables, an easy mark?

After looking at him for a few beats with what I’m sure was an astounded expression on my face, I bumbled out: “That is so against the rules! That is so against the rules!” (Always articulate when it comes to setting boundaries with strangers.)

 

The would-be bomber resentfully picked up his bags and headed off towards the food vendors. I found myself wishing for the explosion to be far enough down the terminal that I’d survive.

 

But there was no explosion. Perhaps I’d prevented one from happening. Probably not but I’d like to think that just maybe I did.

 
 

Tuesday, October 8, 2013

CHRONIC BASEMENT

 
My centenarian house


Silence on the blog usually means I am busy writing other things. For the past two months, however, something prevented me from posting—or from writing much at all. And when something keeps me from writing, I am miserable.

This terrible something is a basement remodel. Like so many things in my life, it relates to health. This summer I moved into the house I own, which I had been renting out for the past five years. The furnace is in the basement, thus pulling air through the musty subterranean realm before sending it through the rest of the house. As someone with deathly mold allergies, I was concerned about this. Basements are moldy places, and mine had that undeniably moldy smell.

I’d heard about this sealant you put on basement walls to keep the damp and mold out. I knew I needed to do that before it got cold enough to need heat. And while I was at it, I wanted to make the basement livable, so I could rent it and get added income. I arrived in July. I thought I’d have it done by September.
 
With one thing and another (including my tried-and-true contractor wanting to charge me 65 grand for the project—I declined) the work didn’t start until August. I thought we’d still be done in a few weeks.

Soon enough, I was confused. I kept thinking the remodel should be wrapping up. Instead, it seemed to just be underway. Why wasn’t it over? Or at least progressing to the next, more manageable stage? Instead things got more and more complicated. New problems cropped up, and the best solution always required a lot of work—expensive, multilayered, nuanced work that needed my constant input, although I wasn’t the one with the miter saw or jack hammer.

And why wasn’t I able to do other things? My bigger writing projects were on hold because of the time the basement took from my schedule, but couldn’t I work on a short story, or even do a blog post?

Apparently not. Each time I sat down to write, a contractor rang the doorbell and drew me into a half hour conversation about certain problems that came up that needed my input before more multilayered, nuanced work could go on. Other times I simply envisioned writing, only to realize I’d need to spend the time making phone calls to track down more contractors.

At last all I could talk or think about was the basement remodel. I went through days with the sensation that I used to do something creative, a sort of a calling, that had once made me very happy. I couldn’t quite remember what this thing was, that I had lost. Also I remembered that my dog used to be calmer, not barking madly all day long at strangers coming to the door and strange noises coming from the basement. And I recalled that I'd once had a routine, which revolved around taking careful care of my body, so that I felt as well as possible. All these things were long lost in the past.

And then I understood. Home renovation is a malady. It is essentially a chronic illness. You think it will be over soon, and it’s not. It requires not one, but many specialists, who are costly beyond your wildest dreams. Soon it interrupts every aspect of your life, and you feel no one in the world can understand you. In the early stages, you talk incessantly about it to everyone you know, only to realize they don’t understand your harrowing circumstances. In the next stage, you realize there are people who can understand: others with the same malady. When you find them, you huddle together, commiserating, trading tips, speaking in a vocabulary you have reluctantly acquired and now feel an overwhelming need to use.

This vocabulary includes siding, framing, flashing, flashing tape, framing, weight-bearing, beams, trim, hardy plank, house wrap, window headers, galvanized, PEX, efflorescence, cement patch, service lines, sewer lines, subpanels, knob and tube, BX, French drainage, 220 outlets, pony walls. And it goes on.

There is the phrase “down to the studs.” I heard this phrase often five years ago, when I remodeled the upper part of my house, and decided to show it to potential renters while the last of the remodeling was still underway, so as to rent it faster (in case you’re wondering, this method does not work). The phrase “down to the studs” is a boast, as in “I did a renovation that went down to the studs.” I have now realized this boast comes from those who have not truly been through the flames of home improvement, those who had general contractors taking care of most everything for them, and found their trials in the difficult questions such as location of vent fans and types of light fixtures.

I am here to tell you that I am not down to the studs. I am past the studs. By around August tenth—some seven weeks ago—my jack-of-all-construction, Leonel, had pulled off the old plywood interior walls (they were so old they weren’t even made of drywall) and demo-ed the studs (also known as framing). He then, in a good Mexican fashion, laid out said studs on my front patio for later reuse, and for all visitors to the house to see. It then rained on the studs. Other scraps and scrips demoed from my basement (such as rotting, rat-chewed insulation, rusted galvanized pipes, a six-foot Eames-era accordion thing that was something between a door and a wall, a hoary chest of drawers, and a newly-broken-down shop-vac) wound up on top of the studs, and it rained on these things, too. This was because Leonel’s truck broke down and he had problems getting it fixed, preventing him from hauling things away. At last another contractor, our neighbor Paul, descended on us like a Roman god in a golden chariot (aka working pickup) and hauled all of it— including the studs once destined for virtuous reuse—to the transfer station. (For those who don’t suffer from Chronic Renovation, the transfer station means the dump.) My front yard looked almost normal again.

What is there beyond the studs? There are the concrete walls of the basement, which are also the foundation of the house. Beyond that there is dirt (we are now outside the house) which is damp from the rainy Seattle climate, and this dampness can seep through the concrete and create mildew inside the basement. Beyond the studs and the cement walls there are also water service lines and water sewer lines, and downspouts from the roof and gutters, which may or may not be tied into the sewers, or may or may not require trenches to be dug, to direct the water away from the basement. All of these I had to address—and by address I generally mean replace. The house is a hundred years old, and apparently no one before me had dared go beyond the studs.

So if you've wondered where I am for the past eight weeks, this is where you'll find me: mentally, and often physically, among the rusting galvanized pipes, in my little studless universe.

Saturday, July 27, 2013

TRADING OFF GETTING OFF FOR GETTING ON

The latest installment in the "getting off" series.


More pills than I'd like to be taking, but less than I was taking before.


Four months ago, I stopped taking my antibiotics, my Lyme-killing herbs, my Ayurvedic liver support pills, my twice-daily injections of the blood thinner heparin, and the three doses of Cholestyramine, which was killing my appetite and making me constipated. I cut out iodine and B12 tablets and drastically reduced Vitamin C, multivitamins, and enzymes. I put away out other pills and powders whose names I can't remember now. I'd been taking each of these things because they each helped with specific, hellish symptoms of Lyme. Each pill or injection was warding off some aspect of misery. All together, however, they added up to so much medication that it was difficult to leave the house, eat meals at the time others were eating, or have a phone conversation without interrupting it to swallow something.

The only way to know if I could have a normal life (or a more normal life) was to plain-old stop taking stuff. But stopping taking stuff when that stuff has saved you from being too sick to walk or read or watch TV--well, it's frightening.

"Congratulations!" my doctor said. "This a big step for you to take."

"This is courageous!" said my naturopath.

"It's really, really brave," my mom said. (I was staying with my parents while I went through these medical adjustments.)

I was ready for the Powers That Be to reward me for my bravery. I was thinking all this medicine for so many years might have even cured me of Lyme. I might just not need it at all. I'd have to wait and see.

For about a month, I was OK.

Then I had trouble sleeping. I got back on the herbal protocol for Lyme. I felt stiff and fatigued getting out of bed in the morning. I ratcheted up my Vitamin C. I was better, and then worse again. I added a third herb for Lyme.... Still, I resisted letting things get too fancy. No injections, no appetite-killing drugs, no enemas.

I landed at more or less an equilibrium of feeling more or less how I had while taking a zillion medications a day, only now I was taking six or seven.

Then a tick bit me--which was testimony to how reality, unfortunately, is  not a double-blind scientific study. I decided to take antibiotics for the tick bite, and things got zooey for a few weeks. When those weeks were over, I went more or less back to where I'd been before the tick bite.

That is to say, in the ballpark of more or less; approximately more or less. I was in a different universe from being depressed and fatigued from antibiotics. I wasn't, however, in the universe of feeling ready to move back to Seattle and into a new house as a newly single person. I had my plane ticket back to Seattle, I had a house my tenants had just vacated waiting for me. I'd scheduled movers to take my things from my ex boyfriend's apartment, and I'd told all my friends I was coming back.

And I was scared, because I simply did not have energy for this looming situation.

Thirty-six hours before leaving for Seattle, something clicked. Fatigue, I thought. Thick blood. So I added in one more supplement, lumbrokinase, which is an enzyme that thins the blood. My energy shot back up immediately.

So now I'm back on the Boluoke brand of lumbrokinase. It's not heparin, which I took for years and requires an injection and left bruises all over my body. I can buy Boluoke on Amazon, meaning it's easy to keep in stock.

The reality is my experiment of getting off as many medications as possible is not going as hoped. The reality is being brave doesn't mean you get what you think you should get.

Given reality, I'm glad to be back on Boluoke lumbrokinase. It hasn't cured me of every last Lyme symptom, but I'm in Seattle now and handling the chaos of moving and setting up house with more energy and ease than I had imagined was possible.

Sunday, July 7, 2013

LUCKY BREAK

Igenex Labs called on Friday to say the tick that bit me three weeks ago was negative for diseases. Or at least, negative for all the diseases Igenex tests for, to the best of its ability. The last three weeks sent me on a weird psychological journey, and it took more than twenty-four hours for me to start to feel I could trust these results.
 
Science is at best shaky, at worst utterly unreliable, or so my experience has gone over the last fifteen years. Not mention how for these last three weeks the universe seemed like one gargantuan tar baby. And now, maybe not. At any rate, I stopped my antibiotics. I am packing to return to Seattle, where there are fewer ticks, and less Lyme disease. And I'm feeling some physical relief to be off pharmaceuticals-- I can now carry on a conversation before 12 noon, and when I dance my brain and legs are able to communicate with each other. 
 
Nevertheless, any illusion I once had of safety has been stripped away. Where does that leave me? Be happy when I get the chance. Last night, I stayed out tangoing a couple hours longer than I'd planned. I'll have to just declare that something to dance about.
 
 
 
 
 
 



Thursday, July 4, 2013

THE NO-TICK-NEWS BLUES

(I wish I knew who did this illustration, so I could give credit!)


It has been three weeks since I found a tick had bitten me, apparently while or right after I was swing dancing in urban Washington DC. The next day I FedExed the tick to Igenex, Lyme medical labs extraordinaire, to be tested for Lyme and other diseases. I started taking antibiotics immediately, and thought I'd hear back from Igenex in one week's time.

But as of this moment, there's still no word. The receptionists at Igenex (I've now called several times) have told me it may take up to three weeks, and taking into consideration that today is July 4th, Monday July 8th is the most likely day I'll get my results.

Meanwhile, the doxycycline and biaxin Dr. Marty Ross prescribed have put me right back into the dark heart of Lyme disease-- fatigue, stiffness, psychological misery, and brain fog. Samsara, Sartre, Sisyphus, the works. All this could be die-off from the Lyme germ that took up residence in my body some fourteen years ago. Or it could be the result of killing off the new infection. Without the lab results, there's no way to know.

Four weeks on antibiotics is the most conservative approach to prevention after a tick bite. Much as I'd like to be in a happier place, I decided yesterday in my appointment with Dr. Ross that I'd keep taking the antibiotics, given the lack of information. Even if the Igenex results come back negative, I'll have no regrets. This isn't the time to take chances.

Friday, June 14, 2013

SMALL FORMS OF BRAVERY


On Tuesday night I wore this dress swing dancing. I came home drenched in sweat, peeled the dress off, got in the shower, and found a tick lodged in my armpit. Once I had comprehended that yes, this had actually happened, I found my old antibiotics for Lyme, which I'd stopped two months before, and took a dose.

By Wednesday night I was on megadoses doxycycline, which my doctor prescribed to prevent a new infection. I was more or less accepting the fact that after six years of partially successful treatment for Lyme, this was all happening. The Ground Hog Day of Lyme disease.

Thursday night is tango night. I'd already washed the dress, and had moments of doubt about going to tango at all. Was it too much now that I was on antibiotics again? Would all the ticks in the universe be pulled to me once I stepped into a dance hall? Would this dress bring me more bad luck?

But I knew I couldn't let myself be spooked. I love this dress. I bought it from a local designer at the Eastern Market last Saturday because it would work for both swing and tango, and I had planned to get full use out of it. Plus, last night there was a special teacher, from Buenos Aires, giving a class in exactly what I needed to learn.

I put on the dress, and I told myself that when people asked me how I was doing, I would simply reply "great!" I would say nothing about ticks or Lyme disease or antibiotics. Fake it till you make it.

I stood in class, wearing the dress and my heels, listening to the teacher was explain this special form of partner connection that is popular in Buenos Aires. I felt an insect crawling on my leg. I looked down and saw it was one of those pretty, winged, teeny delicate green bugs whose name I don't know. Definitely not a tick. Still, I was merciless about brushing it off my leg.

Tango requires concentration, enough concentration that it drives all thoughts of illness out of my mind. By the end of class I was no longer thinking about insects or bacteria or bad luck.

After class, I danced for ten minutes and then changed out of my heels to walk home, to get to bed early, because I'm on antibiotics. I was heading out the door when Francisco, who is an excellent dancer, stopped me. How could I have changed out of my dancing shoes already, when he was about to ask me to dance?

This was practically an act of charity on Francisco's part, since he's been dancing for four years and I am a beginner with three months' experience. Meaning it's heavenly for me to dance with him and probably a little annoying for him to dance with me. I rushed to put my shoes back on and we danced the next three songs. And I was happy, truly happy.

Thursday, June 13, 2013

YOUR TICK CAN NOT BE RETURNED TO YOU


"Once your tick(s) have been processed, the tick can not be returned to you" -from the IGENEX labs mail-in tick form.

My tick will arrive at IGENEX this morning, to be tested for Lyme and all possible co-infections. In my appointment with Dr. Marty Ross yesterday, he said it was good I took quick action on that, and good I took my left over Biaxin (Clarithromycin) right after I removed the tick.

(If any of this is confusing, read the previous post.)

I am now taking doxycycline, because it should prevent Lyme and also Erlichia and Anaplasma, which the tick (or my tick, in IGENEX's view) may well have given me.

Dr. Ross also asked how swollen my tick was. This was something that in my dumbfounded state I hadn't considered, but once Dr. Ross asked, I realized my tick was not engorged at all. It was as flat as, well, a tick.

From that, Sherlock Holmes, at least, would deduce the tick hadn't been biting me for long. Good.

Sherlock might also deduce the disgusting critter might have actually crawled onto me while I was swing dancing, or while I was in the car coming home from swing dancing. Two days before, my father had driven the car to a place in Maryland where there are ticks. (This is a place I do not go, primarily because there are ticks.)

At any rate, the absolutely most likely scenario is this tick hopped onto a nice, warm mammal in exurban Maryland or Virginia, and that cozy mammal hopped onto fossil-fuel transportation into the city, where the tick decided to explore a bit, and then, maybe dizzy from swing dancing, it took refuge in my armpit. And now it's won a free, one-way trip to California and an inside view of IGENEX labs.

***



Wednesday, June 12, 2013

YES THIS IS HAPPENING


Last night I was bitten by a tick. I saw the tick in my armpit at 12:30 a.m., while I was taking a shower because I had just gotten home from swing dancing.

That last was in italics because I just want it on the record that as far as tick bites go, I do not tempt fate. There is no hubris when it comes to me and ticks. I do not hike, or camp. I swing dance and tango, and only in urban places. I am 99.9% urban. The closest I get to nature is a couple of flower beds next to a bricked over patio.

I also walk my dog in an urban cemetery, which is wedged up against the city jail, and also close to something that could be called "woods" but certainly doesn't host any deer. And I didn't take Cleo to the cemetery yesterday, the day I got bitten by a tick. I walked Cleo around city blocks. I spent ten minutes with my nephew in his front yard, next to a traffic-filled street. And I went swing dancing in a room with closed windows and not so much as a potted plant in sight.

And there I was, at 12:45 a.m., putting a tick I'd just pulled out of my armpit into a plastic bag. Then taping the plastic bag to the fridge so no one would throw it out by accident before I could overnight it to Igenex labs.

I stopped taking antibiotics for Lyme a couple months ago. Three weeks ago, however, my symptoms started creeping back and I went back on "containment" herbs. I had been trying to get my head around the idea that after six years of treatment, I apparently still have Lyme. Now I'm trying to get my head around how I got bitten by a tick while swing dancing.

Given that I didn't sleep all that much last night, this might not be the most coherent of posts. But here are some thoughts I've been having today:

Yes, truth is stranger than fiction.

If I believed in an all-powerful God, I'd be his sworn enemy now.

Huh?

This is almost too weird for me to be upset about it.

Thank god I have a good doctor (Marty Ross) who has scheduled a phone appointment for me today, although he normally doesn't see patients on Wednesdays.

Yes, I will buy those really cute but comfortable tango shoes I was thinking were an extravagance.

I'm glad I had some left over antibiotics to take at 12:45 a.m.  I'm glad for Igenex labs and overnight Federal Express.

I'm glad my mom was around (as I'm visiting my parents' right now) to be a generally sane presence for me today.

This tick might not even carry Lyme disease or other illnesses. I will know in about a week.

Deep breathing is good for your immune system.

Tuesday, June 4, 2013

WATERY WONDER

 
I let two weeks go by since my last swim.

It wasn't deliberate. Just in the competition of Healthy Things To Do, swimming lost out to dancing, running, walking, meditation, dentist, taking niece to farmer's market, cooking local organic beet greens, etc, etc.

Meanwhile, my baseline emotional state has been very depressed. Weeping on the couch, asking myself about the point of my life, vis-à-vis other lives of suffering or relative non-suffering, vis-à-vis humanity's place in the universe.

That is to say, when I wasn't happy because I was dancing or buying raw milk cheese, I was very, very unhappy. (I chalked this up to lots of things, most of all starting back on Lyme-killing herbs, which causes bacteria die-off, which can make me pretty damn depressed.)

Last night I dropped my darling niece off at my brother's with a batch of macrobiotic muffins we'd just made, and left to swim. And as soon as I was out my brother's door, I was drowning all the existential awfulness. Plus my legs were aching with fatigue. Lyme-disease-herxy fatigue, meaning you-might-not-walk-for-a-couple-days-if-you're-not-careful fatigue.

So I was seriously doubting whether swimming was a good idea. Tears filled my eyes as I drove toward the pool.


“I wish I hadn’t cried so much!” said Alice, as she swam about, trying to find her way out. “I shall be punished for it now, I suppose, by being drowned in my own tears! That will be a queer thing, to be sure! However, everything is queer to-day.”




Swimming, however, was my plan. I'd left my happy extended family behind to do it, and I knew if I didn't, I'd go right back to my couch to cry, and that wouldn't be good either. So I mentally frog-marched myself to the pool, meanwhile making my exercise superego promise my prudent side that I'd just swim for fifteen minutes, slowly, if that was all I had the energy for. And for the first few laps, it looked like fifteen minutes was all it would be. (Plus, everything going on under my swim cap and goggles was pretty unhappy. )

Then suddenly I felt good. I was swimming fast without meaning to. My legs weren't fatigued, and my brain was contemplating the future in a calm, optimistic fashion, having quietly banished thoughts about my life, the universe, and everything to a galaxy far, far away. The world was once again filled with endless beauty.

I swam for half an hour, and got out of the pool not just glowing with happiness, but physically less tired than when I got in. And today I am not only less fatigued than yesterday, but also no longer depressed.

Why does swimming do that?

My naturopath Amy Derksen once told me that swimming is the best exercise for draining the lymph, because of the action of the water along your skin. And my other naturopath, Nesreen Medina, told me to take an Epsom Salt bath after swimming, to get the chlorine out of my skin, and I always do this after I swim. Maybe this combination is why swimming gives me not just the post-exercise high, but also helps with Lyme die-off and depression the next day. At any rate, I need to keep it at the top of my Healthy Activities list.

Monday, May 27, 2013

ARE YOU TAKING MONDAY OFF? (PROGRESS REPORT)

The Green Sofa 1903, Sir John Lavery.
"Lying on the sofa is your job right now!" my mom said to me. (Can I wear that as my work uniform?)


"Are you taking Monday off?" the salad greens farmer asked me at the market Saturday. I'm one of his regular customers, and he was just being friendly. I was momentarily flummoxed, however.

"No, I don't really get days off," I said with a laugh. Changing the subject is always a good tactic in these situations. "What about you?" I asked. Interestingly, my farmer friend said he was going to relax on Memorial Day. (Instead of waking up at 4 a.m. to pick the arugula, which he's mentioned in other conversations.)

I remember when I was at my most sick. I would drag myself to a level one yoga class, where I would join in the stretching and child's poses, then lie on the floor and breathe while my classmates moved on to more strenuous things, such as the parts of yoga that involved standing up.

Every now and then these vertically gifted people would talk in happy tones about an upcoming three-day weekend. "What are you going to do on your day off?" they would ask each other. These were conversations I opted out of.

Sometimes, though, when Memorial Day or President's Day rolled around, I would imagine what I'd say to people if the universe would also grant me a day off. "It'll be great!" I'd say. "I'll get up and go for a run first thing. I'll eat whole wheat toast for breakfast, then I'll write for a few hours. I'll go the grocery store and buy my own food, cook dinner, and wash the dishes. And I'll eat a piece of chocolate cake, and then I'll sleep all night long."

Now, I do all of these things on a regular basis--except for the toast and cake. I almost take it for granted that I can do them. And I still don't get the day off. Back when I was my sickest, I assumed that if ever in the future I could run for three miles, or spend two hours dancing, I would be cured. I would be living a completely normal adult life.

Reality turned out to be far more complex. I can run and dance, but each day I make huge compromises with Lyme disease. Currently, I get up and seven and act like a quasi normal person until about ten thirty, when I need to rest again for at least forty minutes. I always need to take a nap after lunch. On any given day, I still don't know if the energy to go running will be there, although most days it is.

In a previous post I wrote about how my hormonal and endocrine systems are underactive. (This translates to issues with energy regulation, and all those female things like getting my period) This could be the result of the Lyme itself, of the physical stress from Lyme treatment, or a side effect of all the medicine I used to take. When my Dr. Marty Ross explained all this to me, I decided to try a few months of acupuncture and rest(-ishness) to see if these systems come back on their own, instead of immediately jumping into thyroid pills and estrogen and other hormanal replacement.

So that could be why I need all these naps, and why my energy isn't all that reliable. On the bad days, I remind myself that I chose this harder route for a good reason. In the long run, I'd like to be taking as few pharmaceuticals as possible. Within a few months, one way or the other, this aspect of my recovery should come to a resolution. In other words, I'm expecting that in the future things will be a little better. In other words, it's been six years since my Lyme diagnosis, and I'm still making progress.

Saturday, May 25, 2013

DANCING vs. TENNIS


Fred and Ginger!

My mom is upset about the study of activities that prevent dementia. She wants the research to show that tennis is just as effective as dancing. Instead, the results contain a line that reads “tennis and golf…0%” meaning zero percent of the elderly people tracked received benefits from those activities.

But the fine print says there weren’t enough participants doing these activities to be able to measure what their effects were. This was a real-world study of elderly people in Queens, starting in the 1980s. Apparently, tennis and golf just weren’t that popular, but dancing was.
 
So who’s to say that tennis, with its split-second decision making, its improvisational aspects, isn’t also good for the brain? I sincerely hope so, since both my parents are devoted to the sport.

 
**

This morning my father came home after tennis in a bad mood. “I couldn’t get my f**ing first serve in!” he said.

I, on the other hand, had gone tango dancing last night, and could feel the happiness from dancing still in my body.

“Thank god,” I thought to myself, “I get my exercise in a way that isn’t a zero-sum game.”

This isn’t to say dancing can’t get competitive. We’re human beings, after all.
 
“Yoga isn’t competitive!” someone in one of my yoga classes once said. My teacher laughed really hard at that. “You want to make a bet?” she asked.

 
Yoga gets competitive.

Writing gets competitive.

Cooking, that most nurturing of arts, is now very competitive (at least on TV).

Fixing the economy has turned into us vs. them.

Probably, somewhere out there, meditation gets competitive.

And dancing can be competitive (“Dancing with the Stars,” anyone?)

Recently I read, from one of the those happiness researchers who got written up in the New York Times, that people who don’t compare themselves to others are much happier.

By comparison, they are happier. I am now instantly comparing myself to these people who are happier than me. Who are these magical people, with a magical knack for not comparing?

As humans, we compare. I've even at times caught myself thinking something along the lines of, "Oh, I wish I had that other person's illness. She's got it better than me!" And how ridiculous is that?
 
And dancing, too, gets shoved into a competitive box. We create official competitions, and even when there’s no competition for miles around, dancers are constantly, unofficially, measuring ourselves against each other. We just can’t help it.

The movement of dance, however—what you’re doing moment to moment, whether there are judges watching or not—those movements are inherently cooperative. This is particularly true for partner dances. In tennis and other games, each and every movement is about winning or losing. What is good for one player is always bad for the other. (The words partner and opponent say it all.)

 In dancing, all your intentions are about coordinating with the music and with your partner. You have to react quickly, you have to improvise, and this is what makes it difficult. Each movement, however, is about building on what the other does to make something harmonious and beautiful. My theory is that, dementia or not, this is why dancing makes you so very happy. How can you not feel that spirit in your body and mind?

 

Monday, May 20, 2013

FINDING WISDOM IN A DIVORCE-HELP BOOK


Woman Reading, by Aubrey Beardsley
Is it OK to be finding wisdom in a divorce self-help book, if the person you’re “divorcing,” is the one who told you to buy the book?

I broke up with The Poet just as I was finishing the last draft of my memoir. I was in fact editing the section where I meet The Poet and am so happy to be with him and have his support during my Lyme diagnosis and the first years of my treatment.

It was really painful to be polishing up those pages, and many times I longed to throw the manuscript out the window. I just wanted to be done with it and move on to other writing. All that other writing, which had nothing to do with my relationship—I was sure those projects would be fun.

Then I finished. I was free to start up all those happy projects.

Only it felt impossible to start. It wondered why I was writing all these short stories, and how I’d been so enthusiastic about them before. I wondered how I’d had the grit to keep sending them out to lit magazines only to have the kindest rejections come back. Pre-break-up, rejections had only inspired me to send my story out to more places. Post-break-up, those rejections deflated me.

More than ever, breaking up with The Poet felt like stepping into an emptiness. And that emptiness surrounded my writing in particular.

For all our other troubles, when it came to writing, The Poet had been my cheerleader. He had always believed I was really good. I’ll admit, it was kind of in the way your mom believes you’re a good writer. Our styles and approaches to writing were as divergent as possible. The Poet has a short attention span, I have a long one. (Maybe part of our ultimate incompatibility?) He kept index cards in his back pocket and wrote the wry, disjointed, cryptic lines of his poetry as they came to him, one by one, at random times in the week. He would write things and post them on facebook the same day. When he edited, it was always with the help of other people.

I, on the other hand, sit down for hours, writing out paragraph after paragraph, and spend just as many hours editing alone before I show anything to anyone.

The Poet didn’t read my twenty-five or forty page stories. He’d read the first half and say he loved them. He also read all of the ones that were three or six pages, and pronounced them brilliant.

Strangely, it didn’t matter to me that he never saw every sentence I wrote. That he’d read my short pieces and listened with all his attention and enthusiasm when I talked about writing was enough. He believed in me enough to cheer on the longer stories, to assure me publishing is a numbers game, and therefore I should keep submitting my work. He gave me an invaluable writing guide, on how to crank out the first draft of a novel (in my case memoir), which got me to pound out the first draft of my book. He encouraged me every day while I wrote that first draft.

Even as other parts of our relationship deteriorated, the connection we had as writers stayed strong. Then suddenly I was without it. I was the one who decided to leave him, but that emptiness—wow. I walked straight into it, voluntarily, and I’d had no idea what I was doing.

I don’t regret the break up, but I regret I’m not with him to celebrate how well his new book is doing. It doesn’t help that I am staying in DC with my parents. This gives me logistical and moral support while I’m getting through this last phase of my health issues, but it means I’ve left all my Seattle writing connections behind.

 So I have this book, called Rebuilding When Your Relationship Ends. The Poet sent me an email recommending it to me. (Yes, I know—the self-help book that comes from my ex. Well, breaking up with someone you’ve lived with for seven years isn’t a straight shot.) From it I am learning how you have to find strength in yourself instead of relying on that cheering your partner used to do for you. You have to reach out to other people for support, build other intimacies. That might sound obvious, but I am an introvert, so this doesn’t come naturally to me. According to the book, this process will make me whole again.

I don’t know how whole I’ll end up, but I’ve found a Meet-Up group for writers here in DC. It was a good first step. And I’ve gotten back in touch with Seattle writers through email. I still miss The Poet’s particular enthusiasm, his funny, shazam-like intelligence. The emptiness is still there, but when I sit down to write, it feels a smidge less hopeless. Once I get myself typing out sentences and paragraphs again, the emptiness steps back, and sometimes I stop to notice that I’m happy! The trick, as in so many other things, is getting going.

Friday, May 17, 2013

HURRAH FOR DANCING!

A friend shared this on facebook, and just the week before someone mentioned this study to me while I was swing dancing.
 
 

Here are the thoughts of a dance teacher and dance historian at Stanford on the study.

http://socialdance.stanford.edu/syllabi/smarter


If you are very sick, moving around at all is difficult. But if you're getting treatment, things will get better. Once you can, play some music and dance! Even just a tiny bit. It will make you happy.

Saturday, May 11, 2013

THE WISE MOTHER OF THE CONVALESCENT


Me: I was going to work on my memoir marketing letter, but (grumble grumble) I'm a little tired. I think I'll lie on the couch for half an hour first.

My Mom: Yes! Go lie down! Remember, N., that's is your job right now! Lying on the couch is your top priority.

Thanks, Mom. I couldn't have said it better.

The Convalescent, James Jacques Joseph Tissot 1896



I spent the next 90 minutes on the sofa, getting up just in time to dash off to tango class.

Thursday, May 9, 2013

POWERFUL, FLOWERFUL SALAD

A salad of parsley, carrots, bell peppers, pansies, and marigolds. (Vinaigrette is olive oil, red wine, salt, and pepper.)



It's been a long cold spring here in DC, which means the pansies are still in full strength. Yum!

You can eat many of things in your back yard that might not look like food! Here's a list of edible flowers, from an old cookbook, The New Basics by Julee Rosso and Sheila Lukins. (I still love this cookbook, partly for its beautiful illustrations. It was printed in 1989, by the authors of The Silver Palate. When I was a kid, this was the trendy cookbook my mom and all her friends were using!)

EDIBLE FLOWERS

Anise Hyssop
Arugula
Borage
Calendula (this stuff grows in Seattle practically like a weed!)
Chamomile
Chive (if your herbs grow flowers, you can eat them, too!)
Chrysanthemum
Daisies
Dandelion (bitter!)
Day lilies
Geranium
Hollyhocks
Honeysuckle
Lavender
Marigolds
Mustard flowers
Nasturtium (one of my favorites)
Pansies
Rose petals
Squash blossom
Violas and Violets

Tuesday, May 7, 2013

THE CONTRARY CONVALESCENT

The Convalescent, Gwen John 1924

I love this painting by Gwen John, called "The Convalescent." It is so peaceful! It is also a world away from how I've been feeling about my own convalescence, i.e. since I stopped my Lyme medication on April 5th.

According to Merriam Webster Online, convalescence means the 'gradual recovery of health and strength after disease.'

I do not want to have anything to do with gradual.

'Gradual' is in fact the one word in this definition I would like to do away with! I’m OK with taking a nap and getting plenty of sleep. I’m OK with a few leisurely walks, and time spent reading. But I also want to be running with my dog Cleopatra, going dancing four nights a week, and spending several hours a day writing. I don’t just want these things. I’m desperate for them now. If not now, then in a week.

Yesterday I had an appointment with my naturopath, Nesreen Medina. She told me I wasn’t going to get my way. Coming off my Lyme meds and the crazy amount of supportive medicine I was on is a process that will take easily three months.

‘Think of everything you were taking. That’s a big adjustment for your body to make,” she said. “It’s huge!” Meanwhile, Nesreen said, things will feel like a pendulum, swinging back and forth until I find my center.

There’s no way around it. It will take that long for my endocrine and hormonal systems to get their groove back; that long until I see where I land.

Meanwhile, I can count on erratic energy, and more hours than I’d like on the couch. I can count on not making it to every dance class, and not writing as much as I'd like. 

This wasn’t what I wanted to hear, but ultimately it’s good to hear it. It quiets my spinning worries about why I’m not feel better yet. And it means I can come up with some good strategies for getting through the next few months.

Basically, it comes down to patience. Something I need to teach myself over and over. Just when I think I've got the hang of patience, things change up again and I’m smack in the middle of impatience.
 
Patience means accepting reality, and adjusting to what’s going on right now. If there’s one thing I’ve learned at my ripe old age, it's this: once you embrace reality, everything opens up, and change is possible.



 

Sunday, May 5, 2013

NAP 22

The Lyme support group meets today. It is good to go to the Lyme support group. Only due to Lyme Disease, I can't go to the Lyme support group. Although I may no longer have Lyme Disease, my body is still recovering from having had Lyme Disease.

Which means I need to take a nap every day. And the Lyme support group meets at nap time.


"Flaming June" Frederick Leighton 1895

Friday, May 3, 2013

WRITERS WITH DOGS (AND SOMETIMES WITH ILLNESSES)


Virginia Woolf with her cocker spaniel Pinka
 
Recorded books have been a life line throughout my illness, from the eight dark years without a diagnosis, through to my current transition off antibiotics.

 I just finished listening to a good book, called Shaggy Muses, by Maureen Adams. It’s about five women writers and their dogs: Elizabeth Barrett Browning, Emily Bronte, Emily Dickinson, Edith Wharton, and Virginia Woolf.
 
Although I love my dog and consider myself a writer, I was wary of this book. Writing about dogs has the potential for turning into drivel! Maureen Adams avoided this, using the angle of dog ownership to create concise, engaging biographies of each writer. Each biography was just long enough, without being too long. (Happily, these were no five-volume chronicles of Winston Churchill’s life.)

Edith Wharton liked lap dogs.


I was also struck by how many of these writers lived within limitations, due to physical or mental illness. Nonetheless, they managed successful careers as writers, and during times when writing as a woman meant swimming against strong social currents.
 

 
Cleopatra keeping me company!

Wednesday, May 1, 2013

CHRONIC FATIGUE SYNDROME and LYME DISEASE

From 1999 to 2007 doctors told me I had Chronic Fatigue Syndrome, or that I had food allergies, or that I had a psychological problem.

My family doctor ran a test for Lyme disease that came back negative. I didn't know that test was wildly inaccurate. She didn't either. She implied I'd made my illness up, and told me if I exercised a little more every day I would get better. That bad advice haunted me for years.

I'd been a cross country runner and a rugby player. But now every time I tried to walk a few blocks, I ended up in bed for days.
"A sick girl" by Mikhail Nesterov 1928

In 2007, a doctor who was knowledgeable about Lyme testing and Lyme disease diagnosed me with the illness. Once I started antibiotic treatment, everything changed.

Saturday, April 27, 2013

OPTION B



One month off my Lyme meds, and my labs show low thyroid function, low adrenal function, and low female hormones. I had follow-up tests this week, to see if my pituitary (a gland at the base of the brain, that's like the leader of the hormone big band) is working correctly and if I have enough cholesterol to even make the hormones I need.

The good news from my appointment yesterday is my pituitary does not have a tumor, and it is not in any other kind of trouble. My pituitary is in fact very energetic! In Dr. Ross' words, it's  "screaming" at my thyroid, ovaries, and adrenal glands to make the hormones my body needs.

So why aren't my nice little glands doing what they should?

Cholesterol isn't holding them back. My cholesterol, much to my surprise, is high. Good high. HDL/LDL ratio as it should be, but the numbers are high! How did this happen, while I was weighing all of 112 pounds due to Cholestyramine, the horrible liver medication I was on?

Well, to compensate for Cholestyramine, I was downing the dark chocolate, guacamole, over-easies, nut butters, heavy cream from grass-fed Jersey cows, and whole milk yogurt from ditto cows, for breakfast lunch & and dinner. Six weeks ago I stopped cholestyramine and kept up the fatty foods. Should I have been surprised my cholesterol was that high? Well, I was.



Cholesterol is the raw material of hormones and endocrines. So why such scant e's &h's?

There are two options:

A) Permanent damage from Lyme
B) Temporary damage from all the Lyme meds and supportive supplements I was on.

Dr. Ross was plowing ahead with option A, ready to write me a prescription for thyroid medication and hormone supplements, when I said:
 "Whoaholdonwhataboutit'sjustamonthsinceIstoppedallmymedicationincludingiodinewhichwasmessing
withmythyroidsomaybethesemessagesfrommypituitaryandallthisabundantcholesterolmightworkifwegiveitachance.

And Dr. Ross said, "Yes, come to think of it, it has only been a month since you got off your meds annd your body could just be in an adjustment phase. Let's give it more time. I'll rerun all this lab work in a month and see if there are changes in the right direction."

Phew. Because  my long-term goal is to be on as little medication as possible, in return for as much energy as possible.

For the next month, my goal is to encourage my body to balance itself. That means keeping myself in a healing state for as many hours of the day as possible. Slow breathing, plenty of rest, light exercise, happy activities (like writing and dancing!) and above all, meditation.

Monday, April 15, 2013

BREAK UP

This is a very sad post I've been putting off writing for weeks now. The Poet and I broke up at the end of February, six weeks ago. It was my decision.

There are a thousand things to write about the break up, but I don't know what is the right one. The Poet is a wonderful, brilliant, funny, caring person. I miss him terribly. I miss the many bright and tender moments we had. I do not miss the strife and anxiety, which had come to outweigh all the good things. This past year was especially difficult between us. I had my relapse last March, I got back on antibiotics and Lyme treatment once again ruled my days and nights. Meanwhile, the Poet was facing down his own demons, of which he was the first to admit he had plenty.

He said he wanted to support me through the difficulties of my illness, but his unadmittable, understandable, forgivable truth was he couldn't. He was burned out and his impatience came through, day after day.

This past year, I was drained from what I was going through physically, whatever I had left I gave to the relationship, but it wasn't enough. I had to take medicine around the clock, packing up pills and drops and juices and powders each time I left the house for even a couple hours. From morning to night, I was trapped in a series of cumbersome tasks. Weekend trips, or anything that felt adventuresome, relaxed, or free was pretty much impossible for me.

In a sad twist, I have now stopped taking 95% of these things in the seven weeks since our break up.

When The Poet met me, eight years ago, I was much, much sicker than I am now. He supported me with humor and love through many difficult times, and I am grateful for that. But living with him was rough. I won't go into details, but I knew I was putting up with things that were not OK, that I wouldn't have had I not been sick. I simply depended on him too much and didn't have the strength to move out, live on my own, or get through the greater pain of a break up, although I was in the verge of it many times. There were many beautiful aspects to our connection, times when his love for me shone through, and those times kept me going.

That and the hope that we would work things out. Looking back, there were times when it seemed we'd turned the corner with our conflicts. We had six-month and year-long stretches that were solid, wonderful. Then things would get awful again.

I have been missing him very much in the past few days. And more than a few times I have asked the sky and the air-- would we have made it if I hadn't been sick for so long? Would I have had enough patience and wit to sooth his angst and anger? Would we have created more happy moments, and would that have lofted him away from the darkness and anxiety he carried inside him?

Possibly. Possibly not. It's a futile question. All I know is since the break up, I am at peace in a way I haven't been for years. My life also feels empty of something beautiful and terrible, of strands of sweetness I could never sift out of all that resentment and rage, for all the years I spent trying.

Friday, April 12, 2013

THE RESULTS ARE NOT IN


I had my long-awaited appointment with Dr. Ross today to discuss my low hormone levels. He consulted with other doctors and decided he needed to run more tests. There is a possibility I have gone into early menopause. There is a possibility my pituitary gland is not working, therefore creating problems with my adrenal and thyroid function.

There is also the possibility that these problems have been caused by all the medicine and supplements I was on. Which means there is the possibility that a few weeks from now my pituitary gland will start to work as it should.

I have now cut out almost everything I was taking, with the exception of anti-yeast supplements (Candex), probiotics, the anti-inflammatory quercetin, and my adrenal/cortisol supplement (isocort). This last I have cut in half.

This week I put more pills back in bottles than I took out!
I stopped using my two biggest pill boxes, and later in the week I eliminated one more box. Plus, no injections, powders, drops or liquid medicines!


I wish I could say stopping everything else as of a week ago made me instantly feel better. It has not. It has, however, given me more time and way, way less hassle throughout the day. I am still dealing with quite a bit of fatigue. Not the crippling fatigue that had me in bed for years, but my legs feel heavy and my brain lethargic. I'm still going dancing and for long walks, as usual. I run sometimes, but for two miles instead of the four I used to do regularly. I concentrate in spurts, but I'm not exactly in the zone for writing these days, either.

And it's all OK, given there are still issues to work out and still things the tests are picking up.

Dr. Ross also told me today I also have high viral markers: CMV, EBV and HHR6. This in itself could cause the fatigue.

But the hormonal mystery comes first. I need to deal with viruses from a place of strength. I will wait a few weeks to give my body a chance to recalibrate after all the medicine, and then I'll get the tests for my pituitary, thyroid, adrenals, and cholesterol.

Thankfully, I'm still sleeping plenty these days, and now it's time to go to bed.

Tuesday, April 9, 2013

PATIENCE, PLEASE!

Fourth in the "Getting Off" series

On Friday I stopped taking my antibiotics and the Samento-Banderol-Teasel combination I'd been on to kill Lyme. Dr. Ross even convinced me to put away the home-made nasal spray I've using to treat my sinus symptoms. (see two posts ago.)

I also cut my supplements down to just my multi-vitamin, some anti-yeast pills, and probiotics. Since then I've slept more than I expected (seven and a half to eight and a half hours each night, plus naps) but my energy during the day has been all over the place. Swimming almost always makes me feel better, so I went Sunday. After I was so fatigued that I broke down and took some glutathione and B vitamins. They helped pretty much immediately, but Monday morning I was lethargic again.

This morning (Tuesday) was my appointment with Dr. Ross to discuss the issue of my low hormone levels and borderline low thyroid function. (My mom said she'd sit in on it, and I'd reminded her about it five times.) When the phone rang at 11:30, it wasn't Dr. Ross but his receptionist telling me Dr. Ross hadn't been able to consult with other doctors about my case yet. My appointment is postponed four more days.

Last Friday, I told myself to be prepared for a rocky transition, so why is this so hard? After all, I'm sleeping enough. Some lethargy during the day shouldn't be so bad, but I seem to have run out of patience with having low energy and no answers about it. Is it because I've dropped my anti-inflammatories? Is it yeast? Is it the adrenal support (Isocort) that I've kept taking? It is just my body going through some metamorphosis while it balances my hormones?

Not having a story to tell yourself about what you're feeling is hard. It's now Tuesday afternoon, seventy-two hours to go until my appointment with Dr. Ross.

Friday, April 5, 2013

GETTING OFF LYME MEDS


Third in the "Getting Off" series

I had a phone appointment with Dr. Marty Ross two hours ago. I told him how much I'd cut down on my supplements and other detox activities, and that it hadn't effected my sleeping at all. Then I asked about stopping the Lyme treatment itself.

For the past several weeks, each time I counted out my thirty drops each of Samento and Banderol, and my twenty-five drops of Teasel, and every time I got ready to swallow my giant Biaxin tablet, one thought popped into my head:

"I don't want to take this anymore. It's making me feel bad and I don't need it."

And today when I asked Marty what he thought of stopping these things, he was all for it.

I'm still feeling some fatigue, at this point it's not clear what's causing it. It could be that all the stuff I'm on is putting my body into a tail spin. The best way to figure it out is to just stop.

The Lyme might be gone. If it isn't, symptoms will come back six to eight weeks from now.

There is also the issue of my low hormone levels, which I mentioned two posts ago. Marty said he will consult with doctors who have more expertise than he does on these issues, and he'll tell me what he finds out in an appointment next Tuesday.

Meanwhile, I'll continue to eat well, meditate, exercise, and just not worry too much about anything. (Let's see if I can manage that last one!)

Tuesday, April 2, 2013

SWING AND A MISS


Dr. Mahat called me a few hours ago to say my CAT scan showed nothing abnormal, except for a small cyst, which is usually due to a clogged mucous gland, and which Dr. Mahat said should cause no symptoms. To which I say, phooey. And also, I will not be deterred.

I'm not saying the cyst is the problem. I am, however, taking the test results with a healthy dose of cynicism. Anyone with Chronic Lyme knows medical tests are not always 100% accurate.

What I do know is that three weeks ago I took matters into my own hands, medically speaking. Into a teaspoon of water I dissolved two pills: my antibiotic Biaxin, and my antifungal ketoconazole. Both are supposed to help with any sinus infection I might or might not have. I poured the resulting liquid into an empty herbal tincture bottle, adding in a couple of drops of Teasel because it also had a good effect on the (possibly real) sinus infection. Lastly, I screwed an old nasal spray top onto the herb bottle, and voila! I had my own sinus spray. For three weeks I sprayed the liquefied pharmaceuticals into my left sinus, then lay on my left side and carefully angled my head until I felt the spray dripping down into the itchy, back passages of my sinus.

Here's my DIY nasal spray, in a handy spot on my desk.

So OK, this was my idea, not a doctor's. However, I ran it by Dr. Ross two days later, saying I planned to keep going with it, and he didn't tell me to stop. I also told Dr. Mahat about it in my appointment yesterday. He did not say "bad idea."

Empirically, my DIY approach has been working. By the end of three weeks, my sinuses felt better. Less fluid filling up that back passage by my ear. Less runny nose. I actually had no need to stuff my pockets with Kleenex every time I left the house. I was no longer waking up in the morning with my sinuses filled with fluid. The coffee grinder no longer sounded like an airplane lifting off.

I stopped the nasal spray two days before going to Dr. Mahat. I didn't want it interfering with his diagnosis. And now, on day four off the spray, my symptoms are coming back.

Dr. Mahat might have been a strike, but not strike three, and not the third out. As Yogi said, it takes a fat lady, and she's not on stage yet.

I have an appointment with a different ENT on April 24th, to get a second opinion. Meanwhile, I'm going to restart the sinus spray. Maybe I'm crazy, and I don't have an infection after all. Or maybe, just maybe, my own crazy home brew will kick this imaginary or un-imaginary sinus thing in the butt.