tag:blogger.com,1999:blog-28823764179091135542024-03-13T07:00:11.795-07:00Greetings from LymelandLymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-2882376417909113554.post-38969113718757515242013-08-29T22:11:00.001-07:002013-08-29T22:11:10.152-07:00Mutual Trust<div>Saw this link tweeted by @underourskin</div><div><br></div><a href="http://www.nhregister.com/opinion/20130825/dr-katz-of-lyme-disease-and-lemonade">http://www.nhregister.com/opinion/20130825/dr-katz-of-lyme-disease-and-lemonade</a><div><br></div><div>I was struck by the balanced perspective (all things considered). I think the author touches on an important aspect of or barrier to effective treatment: trust.</div><div><br></div><div>For people without real personal experience with these pernicious little buggers, it is impossible to fathom the scope and depth of their impact. It doesn't help that for many of us our worst symptoms are transitory, cyclic or just plain inconsistent. </div><div><br></div><div>It is hard to piece it all together into one picture. It is even harder to convince Lyme-illiterate doctors that we are not crazy, lying, whining or exaggerating. </div><div><br></div><div>So many of our stories carry forward this undercurrent of a fundamental lack if trust: initial misdiagnoses or denial of possibility that Lyme might be at work; initial conventional/sanctioned (ie limited and demonstrably ineffective) treatments that had no impact or made things worse. And somehow this is too often seen by Lyme-illiterate physicians as proof that it either wasn't Lyme and/or we are lying. </div><div><br></div><div>It isn't our fault that there aren't better tests, more reliable ways to indicate and quantify illness and recovery. Stop using a test that was never intended to be diagnostic and which fails to meet the basic requirements of reliability by missing more than 50% of positive results. Stop arguing and figure it out. </div><div><br></div><div>The mere act of refusing to give the condition a name will not eradicate the disease. Most of us don't care what you call what is happening to us. Stop arguing and figure it out. </div><div><br></div><div>Stop letting insurance companies use outdated guidance that has been called into question by reputable informed clinicians to deny coverage. It isn't our fault that current treatments take years, are obnoxiously expensive and still frequently provide incomplete recoveries. Stop arguing and figure it out. </div><div><br></div><div>So many of us talk about our experiences with doctors who seem intent on denying the obvious. Too often I and hundreds ofthousands of other Lymies have left doctors' offices having been dismissed as crazy/lying/exaggerating/attention-seeking. It is demeaning, humiliating, infuriating and inhumane. It makes it harder to work up the courage to try another new doctor. To be a guinnea pig or a freak. </div><div><br></div><div>Too often our stories carry with them incidents of doctors outright dismissing that Lyme disease exists. Too often these doctors show no interest in finding out what's happening and how to fix it. </div><div><br></div><div>This week marks my 8th anniversary with Lyme disease. Just about the longest relationship of my life and certainly the most difficult. Throughout this journey it has been difficult but helpful to keep in mind that not every symptom is Lyme-related.</div><div><br></div><div>Had I not done this, I would have missed another medical condition that without proper treatment could have eventually led to a swifter death than what may already await me. Still, I would still strongly discourage any doctor from ever again trying to tell me I don't have Lyme disease no matter what other issue he or she may be helping with. (Ugly ugly ugly is all I have to say.)</div><div><br></div><div>But I am fortunate to have found doctors I can trust. They listen to me, value my input and trust me. I listen to them and value their input and trust their expertise. Together we work to sort out how best to identify and treat what's going on. Without this trust the therapeutic relationship suffers. Illness lingers or worsens.</div><div><br></div><div>But I still face an uphill battle with neurologists and their over-arching callous dismissal (with a few notable exceptions). I spend sleepless nights worrying over an upcoming in-patient hospital stay for EEG monitoring, sweating from nightmares that they decide I'm crazy and don't let me go home. Echoes of past doctors' voices down tiled corridors: "There's nothing wrong that I can see." "You can't have Lyme; there are no reported cases in your area." "You're sick because you're depressed; you're not depressed because you've been sick for eight years and housebound for the past three." </div><div><br></div><div>But this is much larger than my nightmares. This is the stuff of all our nightmares. And still my own question echoes down those same corridors, remains unanswered. At what point does the continued willful ignorance on this or any other illness amount to criminal negligence?</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-39095091995302156732012-03-20T11:25:00.000-07:002012-03-20T11:25:02.405-07:00Spring Fever<span style="font-family: Calibri;">I had an appointment with my Lyme specialist this morning. I’ve
been unbearably nauseous after I take one of my antibiotics fairly consistently
now for about a week. As I was throwing up my bagel this morning, I wondered if
perhaps I no longer need the meds. The doctor was inclined to agree, to some
extent. We’re focusing now on the Lyme, having beaten back the coinfections. At
least for now. I’m ever conscious that this is a long process and I’ll likely
have to relaunch direct assaults on the little buggers at some point in the
future. One more life stressor may knock my knees out from under me, leaving me
more exhausted and overrun with invaders than I am now.</span><br />
<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">But I’m making some headway with cognition and stamina. I’m
still greatly fatigued, but when I’m up I can stay up for a little longer. I
can concentrate long enough to finish a sentence, if I’m typing. Writing
longhand is a gamble, and if anyone interrupts while I’m speaking, the thought
evaporates like steam in the inferno of my Lyme-rage and frustration.</span></div>
<span style="font-family: Calibri;">The insurance giant who was happy to take my premiums for
twelve years have denied my appeal to their denial of my long term disability
claim. I am in pain every minute of every day. I can’t stay awake for more than
five consecutive hours, and for only a couple of those hours will I be
coherent. My short-term memory is a joke. Showering still exhausts me. I can’t
walk to the end of the block. I can’t get more than thirty pages into a book
without losing track of both plot and character, having to start over again and
again. (At least now I can just skim the parts I’ve already read and spark some
vestige of memory.) Besides all of that, keeping up with my meds is a full-time
occupation. </span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Who knows what it’ll take to launch legal action against the
giant. And while I’m angry, it only flares for a minute then leaves me spent.
Most of all, I’m tired. Beyond tired. I have no words for the depth of my
fatigue, how overwhelmed I feel. But it is officially spring, and better days
are ahead.</span></div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-15943079268329838122012-03-04T16:52:00.001-08:002012-03-04T16:52:23.117-08:00So How Do You. . .At brunch with my wife our teen daughter & my super-conservative in-laws this morning my kid pipes up about her new bf's parents never having met gay folks before. How we got on the subject is lost to me now but I guess they have a lot of questions and that makes the bf nervous. My wife & I have answered just about every question a straight person can come up with & are as happy to dispel myths about lesbian families as we are Lyme Disease. My mil (who asks no questions) was surprised but then decided we must be like some foreign emissaries. "I guess it would be the same as if you were from Africa or someplace they've never been. Asking, you know, how do you do this and how do you do that?" Leave it to my sweet mil to hit on the one question we refuse to answer.Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-22963053934266888702012-03-01T08:35:00.002-08:002012-03-01T08:35:14.405-08:00Snow Day<span style="font-family: Calibri;">The dry winter has broken with a blanket of snow on the ground this first morning of March. The weather forecasters have been predicting it for about a week now, and the air has carried that biting edge that usually foretells the fluffy white precipitation. But so far, only a few fat flakes have fallen and not stuck. </span> <br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Some folks go crazy for a white Christmas. I enjoy a white birthday, especially since mine falls at the end of March. When I was a child and we lived in the foothills of central California, I’d get a white birthday every once in a while. My sister, whose birthday is in mid-January, never got this coveted birthday surprise. Which made those few times I awoke to a blanket of white on the ground on my birthday all the sweeter, even though it meant canceling whatever plans may have been made for my day.</span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Today I have no plans, just some errands that need to be run. It’s also my day to exercise. I think. Keeping up with an everyday routine is difficult enough with Lyme disease, but these every-other-day tasks may prove to be my undoing. I could be organized and write it down in my calendar, but I’m currently going through a disorganized slump, where I forget I even have a calendar and mislay my various lists of things to do. I’ll switch into high gear soon, if my past experience is anything to go by, and an aberrant wind of physical stamina will blow through me and I’ll have cleaned off my desk and organized my living spaces in a single, exhausting afternoon. Also based on past experience, I’ll probably do myself some physical damage and be laid up in bed for a week afterward. Perhaps it would be better to go at it in small chunks, but that isn’t the way this game seems to work. It’s feast or famine where my physical and mental strength and focus are concerned and I stop only when my body makes me.</span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I am a bit disappointed, though, that I slept through the snow fall. I hope it snows more today while I’m awake to enjoy it.</span></div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-8569318029978076842012-02-29T07:20:00.003-08:002012-02-29T07:22:29.379-08:00Leap Year Expectations<span style="font-family: Calibri;">The dog woke me at two this morning, and I lay in the dark for half an hour before giving up and turning the tv on to bore myself back to sleep. My head hurt too much to play a game on the phone, and my brain wasn’t working enough to get out my laptop and write. Even now it’s a struggle to remember what I was going to write about from the beginning of one sentence to the next. I need to keep my expectations low otherwise I’ll get too frustrated to be of any good to anyone today.</span> <br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">As I lay in the dark four hours ago, I couldn’t help notice how quickly the dog settled back down, particularly compared to myself. My wife beside me hardly stirred, told the dog to go back to her bed, and resumed her sonorous sleep as if nothing had happened. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Jealousy is an ugly thing, especially in the predawn hours.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">It took me about an hour to drift back into a light slumber until I woke for good at five, taking the dog and the laptop downstairs with me. I half expected the dog to want to go back up after she’d eaten and been outside, but she climbed into her favorite chair and went back to sleep. Even after I bundled up so I could go back out and sit on the porch to watch the snow fall she remained in her chair; normally she’s at the door, eager to get out as soon as anyone even moves in the general direction of the door. But, she’s getting old and doesn’t like the cold. I don’t think she liked getting snowed on while doing her business, gave it serious pause for thought before leaving the sheltered porch for the yard. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">As I struggled into my thermal over-pants and fleecy jacket, I kept tipping over and tripping on my own feet until I just sat down before I did myself serious damage. As it is, I think I hurt my right foot and my left hip feels like I’ve walked ten miles. But I really wanted to sit out on my dark porch and watch the snow fall in the aura of light cast off by the street lamp on the corner. I find it meditative, especially when I’m still waking up and the sun hasn’t yet risen.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">But not for me today. By the time I got myself situated and prepared for the cold, it had stopped snowing. Which brings me back to keeping my expectations for today low. Very low indeed. Which is funny, because as I lay between sleep and slumber a few hours ago, I remembered that today is February 29<sup><span style="font-size: x-small;">th</span></sup>, a theoretical free day that comes once every four years. A day out of time, it seemed. Full of a different kind of potential than other days I’ve lain in bed, contemplating what lay before me.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">So far, it’s just like other days. I got out of bed because my pain wouldn’t let me stay in one position more than a couple of minutes. I’ve fed the dog and taken her out to the yard. I’ve wandered into the kitchen twice and back upstairs once, only to find I’d forgotten what I’d been after. I’ve taken my thyroid meds and probiotic, waited the requisite hour, and taken my first round of antibiotics. I went to make myself a cup of tea, plugged the kettle in and got so caught up in wondering what kind of tea I wanted that I neglected to turn it on. I was back in the living room before I realized that I’d walked past the tea cupboard without making a selection and getting the cup set up, which led to the realization that the water was going to stay cold until Lyme brain got it together and turned the kettle on. So I turned the kettle on, came back in here to write while it boils, and now that it’s done I remembered I still haven’t chosen a tea. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Definitely just like all the other days.</span></div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-21950194404845556592012-02-28T20:48:00.000-08:002012-02-28T20:48:55.927-08:00Anniversary Ramblings<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">5 a.m. Today my wife and I celebrate ten years together. Or I should say that today is our anniversary; whether we celebrate or not remains to be seen. Two weeks ago on Valentine’s Day, I’d remembered what day it was when I’d gotten up. But by the time my wife woke up, I’d forgotten and instead of feeling romantic was busy getting ready and running late for an appointment. Not a pleasant way to wake up on any day.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">If I can keep my pain under control, I’d like to get out of the house and do something with her this afternoon. Putting things off until evening carries too much risk these days. And since I’m off to bed at seven o’clock, four seems like eight used to when I enjoyed a normal sleep pattern. And since my wife lost her job, both our afternoons are free. As are most of our entertainment options.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Last Thursday, I pushed it and went to a late movie. And paid for it with unmanageable pain for three days afterward. Maybe not a movie today then. I don’t think there’s anything out that we really want to see anyway. I’ve got no idea what to do for our anniversary, though. Or what time she’ll be getting up. Our schedules have us going in opposite directions, with her waking up just as I’m heading back to bed for my first nap. I suspect she’s just settling in to sleep when I wake for the day. </span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">I suppose our anniversary following so closely on the heels of a spectacularly flat V-Day leaves me lots of room for improvement. Just about anything, short of waking my wife by clanging pots and pans together, would be a better way to wake up than her hurried and harried wife cursing my ineptitude as I try to get dressed in the dark, with no balance or fine motor coordination.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Dinner out would be nice, too. We’d talked about driving up to Seattle to see some friends, but I think I’ve forgotten to send the email. I’d like to do something to show her I love her, something outside of our normal routine. I’m pretty lucky she’s stuck with me through all of this. She puts up with a lot. And I mean a lot. Even before-Lyme, I was difficult to live with. Now, she never knows what she's going to wake up to. But she keeps waking up next to me, or at least in our bed while I'm down suffering on the couch with the dog. And I know she'll still be with me when I'm healthy again. </span></div><div align="center" class="MsoNormal" style="margin: 0in 0in 10pt; text-align: center;"><span style="font-family: Calibri;">* * * *</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">8 p.m. I may have remembered it was our anniversary, but I forgot it was Tuesday, our weekly gimp night where a bunch of us with chronic illnesses & our significant others come and eat and watch tv. Right now, they’re downstairs watching some singing show; I’m on overload and it seems like the tv is just shouting at me. Plus, a storm front has moved in and my pain has not been well managed today.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">My wife and I ended up having a late breakfast at our favorite diner after my morning nap today. I must have been on a carb high, because we ended up going to a furniture store to look at a new couch. We’ve been looking for a while, since our current (inherited) couch has become downright painful for me and I’m supposed to be resting most of the day and I’m not supposed to spend all day in bed. Which pretty much leaves the couch. Except, I can spend just about five minutes on ours before I start to shift and fidget and generally annoy my wife until I call it quits and go to bed, feeling (and sounding) like I’m about eighty as I go. As I have tonight. Actually, tonight I didn’t even try to sit. My left hip hurts so bad it’s making my cervix contract, my heel pain hasn’t gotten any better since I resumed the bart-oriented meds six or seven weeks ago, and the electric pains running through my fingers could go away forever and not be missed. The Lyme pretty much guarantees I won’t even remember it at all.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">But it’s been a pretty good day. After trying out a few different options, my wife informed me that we weren’t leaving the store without a new couch. Not literally; it’ll arrive in about four weeks. I’m happy with the one we chose, but I worry that it’s not a financially responsible decision. It was on sale, though. And if I factor in how many trips to the chiropractor, lmt, and acupuncturist my current couch leads (or should lead) to, it doesn’t seem so bad. A decade is a long time. Something to celebrate. By going to my comfy bed early while my wife and the gimps watch junk tv on uncomfortable furniture downstairs. </span></div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-31390381396617295302012-02-21T07:15:00.000-08:002012-02-21T07:15:18.470-08:00Return<span style="font-family: Calibri;">My morning routine was significantly interrupted a couple of months ago, not by my illness or any other tragedy but by our adopting a dog. We started out just fostering her, to save the life of a sweet animal who lives to love and protect her people but whose age makes the local shelters put her in the “unwanted” class, immediately slated for the big sleep.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">To be fair, the bitter cold and my growing intolerance of it had already put a significant dent in my favorite predawn routine of sitting on the front porch for hours, contemplating the mysteries of the universe as I listened to the leaves rustle on the ground, the rain on the street, the rail and river traffic just a couple of miles to the south. And my own secret negativity, left unchecked and unexpressed, coupled with mounting language issues, prompted me to stop my blog over a year ago. At the time, material concerns took over and any intellectual umph I may have been able to gather needed to go toward fighting with the disability insurance company. I simply had no thoughts fit for broadcast.</span></div><div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">This morning, in the grip of a migraine on top of the searing hip pain and all-over muscle ache that are my constant companions, I sought refuge on the porch, bundled up and stayed out after taking the dog for her postprandial constitutional around the yard. I thought perhaps giving up cigarettes was finally catching up with me and the nauseating pain in my head might be helped by a quick smoke. It wasn’t, and I’m still waiting for my pain meds to kick in.</span></div><span style="font-family: Calibri;">Which brings me to my semi-epiphany for the morning. I’ve gotten into the habit of listing all the things I need to take care of on any given day as I wake up and have the one espresso I allow myself anymore. Most of the time I’m carrying over tasks and chores undone from the day or even weeks before, each time feeling the same anger and disappointment with myself for becoming such a slacker, for being so unreliable, for starting each day with hope in my heart that it’ll be different, only to crash and burn late morning and become completely useless for the remainder of the day.</span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">This morning on the porch I decided that instead of listing chores, I would focus on the things for which I’m grateful at the moment. That I still have a porch to go out and sit on, for starters. That somehow, money continues to come (sometimes just in the nick of time) and we’ve yet to miss a house payment. That my daughter is healthy, happy, well adjusted, and getting ready to fly the nest soon. That my wife hasn’t tired of watching the woman she loves be sick and in pain all day every day for the past I can’t remember how many years, knowing that it’ll continue for years to come. In all likelihood, my wife is probably just as tired as I am that I’m still sick, but she hasn’t left me and that’s saying something if the rest of the folks in my Lyme support group are anything to go by. </span></div><span style="font-family: Calibri;">I still have friends who care and reach out to spend time with me, even when I go for months withdrawn into my own bad attitude. I even have friends who turn to my wife & me for help, when I wouldn’t have thought we were in a position to help anyone other than ourselves. (My counselor and naturopath both think we’re crazy to let a friend stay with us for a few months while she gets back on her feet—they’re worried about the toll the added stress and disruption to my routine will have on my health, which has stalled if not gotten worse in the past few weeks since she’s been with us.)</span><br />
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<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">Later this week I have a coffee date with my old boss, whom I would love to work for again. I had a semi-waking dream last night that she offered me a job and I was healthy enough to accept. I wonder if wanting to work is a symptom of a greater illness. I didn’t want to take a leave to begin with, put it off until my health issues began impacting my work, my reliability and accuracy began to suffer. It’d be no different if I went back now, would be worse since I still only really function from about five to eleven in the morning. After that, I can’t hold onto a thought long enough to bring it into action and am good only for resting, watching television, yarn projects or rereading books I’ve already forgotten. (I must say, having Lyme disease certainly has saved me a ton of money on literature, since I’ve been able to make my way back through my personal library and have yet to remember enough of a book to not enjoy rereading it.)</span></div><span style="font-family: Calibri;">I spent too much of yesterday feeling sorry for myself for not being healthy enough to go back to work, for not having the stamina to accomplish more than two or three “chores” in a day—even when those tasks don’t involve physical exertion as none of my chores do anymore. Phone calls exhaust me. Maintaining a positive attitude exhausts me, even before I was daily confronted with a vortex of negative energy. </span><br />
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<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Calibri;">But, even though I’m still nowhere near where I was before I got Lyme, my mental faculties are picking up a bit and when I’m on I’m on for a little longer than I was this time last year. I haven’t struggled to find the words for these ramblings as often as I was doing only six months ago, and for that I am grateful. I know I’ll fade quickly today, can feel it happening already even though I’ve been up for only two hours. The pain is just too great today, despite my breathing and meditation techniques. I may not do any chores at all today, and will probably feel all the worse for it tomorrow. Obviously, I’m still working on accepting my current situation without rancor. I suspect this is my life’s task.</span></div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-76169865432878266622011-02-02T07:08:00.001-08:002011-02-02T07:08:28.835-08:00Rage 32: Lymeland 0<div class="MsoNormal" style="margin: 0in 0in 0pt;">My daughter’s friend stayed the night last night. They have a semester break today—no school. And my wife and I have been trying to get our child to socialize more with people other than her boyfriend. In fact, she is currently grounded from seeing him outside of school until they both have broadened their social horizons. And I don’t care how long it takes.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">We’ve been working with them on this for months, and I can’t even remember now what straw ended up breaking the camel’s back and resulted in her being grounded from him. But she seems to finally be getting it, even though it was her friend’s idea to spend the night and not hers.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">It would not have been my idea, either, since I have a mini-Herx around the time of the new moon and the rage hit right on schedule last night as I was trying to cook dinner. Simple spaghetti; not labor intensive nor does it require me to stand in front of the stove for extended periods of time. My kind of meal these days.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">All day I’d been fighting off the despair that comes to visit for three days twice a month. I have a new strategy where I remind myself that it isn’t my own death that fills my muscles to the point of stiffness and cramping; it is the dead spriochetes I sense. This works to a limited degree. As does reminding myself to just not get started at all, because once I do my control over my tongue evaporates in the white-hot flash of my anger.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Neither strategy is fool-proof, though, and I feel like a fool. My wife and I had caught our child acting like a teenager—asking me for permission to see her boyfriend yesterday because it was their anniversary, my reminding her she’s grounded and no exceptions would be made, and her asking my wife for permission just a couple of days later.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Nothing earth-shattering; just typical teenage behavior. Reassuring in an odd way, since until recently she’s been trying too hard to be perfect so she doesn’t upset me and make my condition worse. Bah. When she told me this, I was shocked and wanted to cry. Instead, I told her I needed her to do her job and be a teenager so I can do my job and be a mom and have some reason to stay here. Because otherwise, the afternoons spent crying from the pain will soon outweigh the strength of my familial ties, and I’ll begin contemplating my own demise. I didn’t tell her all of this—just that I needed to be a mom so she needed to be a kid, and part of that would be her getting caught breaking the rules, me yelling, and her hopefully learning a lesson.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The yelling hasn’t been a standard part of my parenting repertoire until the Lyme got a foothold and took over my life. I can see from the way her eyes bug out when I yell that my child has shut down and is just waiting for me to stop so she can run away and cry in her room. (I do the same—only I don’t actually run, just hobble upstairs to my room.) So it accomplishes very little in the way of conveying important parenting lessons. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">It does, however, make quite an impact. With one sharp word, I brought my whole house to a stand-still last night. (The word was “enough” in case anyone is wondering. I’d quickly tired of my child’s backpedaling and excuses.) Her poor friend has known us for about four years now. So she knew me pre-Lyme invasion, and last night was her first glimpse at what it’s like now. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My wife got them both into the car and dropped them off at school for something our daughter needed to do for her leadership class. The friend was going to stay in and watch tv with my wife until I blew my top. Afterwards, my wife recapped the conversation in the car, about the friend worrying that our kid was in serious trouble, that she wouldn’t be allowed to stay the night, that the entire rest of the evening was ruined. My wife says she explained about the rage, that it would pass as quickly as it erupted, and that I couldn’t really help it.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I’m sorry, but even living in this broken-down body and going through treatment (which made the rage both more predictable and less manageable) for over a year, I don’t buy into that business about not being able to help it. As much as I struggle to maintain a cool temper, and as I lose the battle many times a month, it still feels like a cop out to say that I can’t help it. Though I can see why my wife and child would cling to this, for who wants to live with someone who would act the way I do if they could control it? I wouldn’t. I’m already tired of all of this, still waiting for the treatments to work and to start feeling better. Still waiting for peace of mind that allows me to stop the words of anger from flying from my mouth. Still looking for the right coping mechanism. Just coming to the conclusion that perhaps there isn’t one.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-31309675573468380962011-01-28T07:50:00.001-08:002011-01-28T07:50:09.515-08:00Mush!<div class="MsoNormal" style="margin: 0in 0in 0pt;">Sitting on the porch this morning, my neck and shoulders stiff and painful from the spiros and too little sleep, I started to complain to myself. Grumbling, shifting and settling, looking for a comfortable position in my chair and finding none, I berated my recent party-animal lifestyle.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">On Wednesdays, our dear friends come over to cook us dinner and check in on how we’re all doing. I love that they want to help out, love seeing them and appreciate that they’d set aside an evening each week for us. They are part of our family, but it means a late night for me. And one night a week of going to bed after nine isn’t so bad. No one expects much socialization out of me after seven anyway.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Last week, though, our Thursday and Friday evenings also included time with friends and missed bedtimes. Consequently, I spent most of last weekend in bed recuperating. Again this week, we were blessed with a meal cooked for us in our kitchen by our best friends on Wednesday. And again yesterday, we had dinner with a different set of good friends—the same ones we spent last Thursday with.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">What we did last Friday escapes my memory at the moment and I’m too lazy/tired/sore to get out of my chair to fetch my calendar. Whatever it was, I hope today isn’t a repeat. I can’t handle these late nights—and how pathetic that staying up after nine is late now.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">That may be the most difficult thing for me to adjust to with this being sick and getting better business, that I can no longer count on my brain to push through whatever lies ahead and expect my body to ably follow. I recognize this fact cognitively; daily the pain and exhaustion remind me of my current frailty. But I am prone to forgetting, falling back into habits, willing my body to keep moving through the pain.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Except it doesn’t work anymore. One or the other is likely to fail, frequently both with my brain going one way and my body another. Or neither going anywhere, just spinning in place. A few weeks ago, I tried to do laundry while herxing. I may as well have tried to walk twenty miles for all the sense I showed that day. Not once but twice I found myself standing in front of the washing machine, crying from the body pain, my brain off on some tangent of rage and self-pity, unable to move. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My arms and legs refused to inch forward, and my brain flipped me the bird when I tried to get tough and told myself to suck it up and just move already. Our laundry facilities are in the basement and the comfort of my bed is two stories up. So while I can conserve energy and toss the (mostly mesh) laundry bags down the stairs, I still have to cart the clean clothes back up with me. In theory. That day, I ended up leaving it all downstairs and asked my wife to help bring it up for me when she got home from work.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The thing is, getting stuck down there shouldn’t have happened once let alone twice. I’m not a stupid woman, but I can be astoundingly dumb sometimes. And stubborn. Rather than admit defeat and ask my wife to always bring the laundry up for me, I’ve been whiling away my sleepless afternoon rest hours coming up with ridiculous methods of getting it up myself. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Obviously, splitting the heavier loads into smaller, lighter ones would only mean more trips up and down the stairs. I tried tossing a light load up the stairs, but it is neither as effective nor as satisfying and watching it fly down, skimming the risers and landing with a soft thud. Tossing the laundry up required more energy than carrying it (duh) and resulted in a flurry of panties and socks. (I will admit, throwing the laundry up the stairs was inspired more by anger than a desire to conserve energy.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">A number of rope and pulley systems have presented themselves, but in reality I’d probably trip on the rope and do some serious damage. I slip down those basement stairs enough as it is. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Sadly, I am left with little choice but to ask for help when I need it, to continue to work on recognizing when that is, who to ask, how to ask. Who knew it would all be so complicated? Now I remember why I’m so mulish. I usually fail right at the gates in not recognizing when I need help until it’s too late. If I do manage to pass this hurdle, I fall at who and how. I went out on a limb a while ago, asked a friend to help me with something. It didn’t work out. I never got an answer either way, had to come to the conclusion myself and let go of the hope for what I wanted. Still today I don’t know which of the three were off, probably all. But it hurts and makes me ever more reluctant to reach out.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Our dear friends who come and cook for us, I didn’t ask them for their help. The one I call Sister just announced one evening shortly after the holidays that she was coming up once a week to see me, then her wife got on board, and it morphed into this wonderful weekly dinner. I have a feeling that if I’d asked for it, the outcome would have been different. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Maybe the best course of action is to maintain a position of acceptance for the help and love that come my way, show my gratitude for what I have, and buy more panties and shirts so I don’t have to do laundry when I’m herxing. That sounds like a good plan to me. </div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-70255786974290818952011-01-25T07:05:00.000-08:002011-01-25T07:05:14.652-08:00Lymeland City Center<div class="MsoNormal" style="margin: 0in 0in 0pt;">Yesterday afternoon I needed to call my mother in law to double check my father in law’s middle name. I would have called him, but after he retired he found he wanted a part-time job, and what he does sometimes calls for him to work very early in the morning. So he often naps during the day. Much like me. So I didn’t want to wake him, and I’ve been meaning to check in on how she’s doing anyway. I just keep forgetting.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I’d been paying bills and needed to get into one of the accounts still left in only my wife’s name. The site didn’t recognize my laptop, so one of those security questions popped up. I was fairly confident that I remembered the answer, since it’s the same as my own dad’s, but ended up second-guessing myself into a phone call with my mil. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">At the risk of publicizing what is not mine to share, she has been struggling with physical pain lately, as well as the depression that comes from being homebound, in pain, and unable to sleep. I’ve been too wrapped up in my own worst herx ever to have checked in until now, so after I confirmed my Lyme brain did actually remember the middle name, we chatted for quite a while about how she’s doing and what it’s like for me with the Lyme. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Unable to multi-task these days, I pushed the bills aside and described the emotional rollercoaster of life in Lymeland—where, like the tides on Earth, the tides of my own energies rise and fall in sync with the moon. Four days before the full moon, my mood dips, I struggle to see the positive side of things, and generally try to keep to myself. As we draw closer to the full moon, I become emotional (lots of tears), then flat-out crabby (grumbling about the lack of positivity in a world full of a-holes and idiots), and finally the day before the full moon, the Lyme rage express pulls into Lymeland city-center and I fly off the handle and lose my head over the smallest things.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Throughout this period, I lose most of my physical energy and find it almost impossible to concentrate on any one given subject for more than a few minutes at a time. Sleep becomes elusive as my physical pain ramps up just after the full moon and remains unmanageable for the next four days.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">As I explained to my mil, and I probably heard this from someone else so I’m not taking credit for the idea, I think my body’s war with the spirochetes rises and falls with the moon’s pull, with bloody battles waged most ferociously as the moon becomes full. Thus the exhaustion and rage—maybe I need it to fight the little buggers, or maybe it’s their own since I certainly don’t recognize it as mine. And then, in the days following the full moon, my body struggles to rid itself of all those fallen casualties, both Team Spiro’s and my own. Thus the muscles and joints filled to stiffness and agony with biotoxins.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">At least she listened without doubting the veracity of my story. I may not always tell the whole truth in my personal life—I value privacy and discretion a great deal and am careful to avoid pointed questions or, if pressed, to provide vague half-answers that don’t qualify as lies. But neither do I go around making stuff up, nor do I exaggerate existing conditions. I have Lyme. The truth is horrific enough. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I don’t want to get onto my soapbox about all of the doubting Thomases out in the world who are dead certain that Lyme doesn’t exist, even though they themselves have not walked a minute in my shoes. I don’t want to rant about my impotent fury at having my integrity questioned when I take care to be honest, avoid lies, and honor the points of views of others even if they don’t agree with my own. Crap, I ended up on the box anyway.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">And I lost track of what it was I did want to say. Something about fiction—ah yes. I wanted to end on a positive note. Last night my wife and I sat on the porch, and I was rambling on about an idea for a longer work of fiction I’d remembered that afternoon. We were laughing and the story was becoming increasingly outrageous. And she called me a goober. Affectionately, of course. She hasn’t called me that in a long time. I haven’t been silly like that in a long time. I know I have a long long way to go still, but I think I’m starting to feel a little better. It may be temporary, a calm before the next herx storm, but I’ll take it. I’d be proud to be Goober, Mayor of Lymeland. As long as those negatives have been destroyed. . . .</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-8123622017108874962011-01-20T08:34:00.001-08:002011-01-20T08:34:05.759-08:00Living with Dignity<div class="MsoNormal" style="margin: 0in 0in 0pt;">Regarding my vitriolic soap-box post from yesterday:</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Living with dignity includes having a wife who has found the courage and strength in her kind and soft heart to learn to give me painful injections twice a week, who calls me a trooper when it’s all done and I haven’t cried. I know it hurts her to hurt me.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Living with dignity includes having friends who come to our house from more than thirty miles away in rush hour traffic (along a treacherous highway in winter conditions) to cook us dinner every Wednesday because we need the help. Friends who won’t allow me to even do some prep for them on the days I’m feeling up to it. Friends, who over the years of supporting each other and each other’s families, have become our own family. (I should be saying sisters who come to cook for us and watch Food tv, since I have been calling one of them Sister for years now. But my wife has a blood sister, and it can get confusing since I don’t think she thinks of my sister’s wife as her sister-in-law. We joke, actually, that they are instead the archetypal bromance.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Living with dignity includes having family who come to sit with my wife in the evenings after I’ve gone to bed two or three times a week. My sister-in-law lives only a few blocks away, in a neighborhood safe enough to allow after-dark walks (so long as common sense is exercised).</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Living with dignity includes having a teenage daughter who strives to be the best at everything, to not let me down, to not break the rules and stress me out for fear of making my condition worse. (We recently had a talk about this and I hope she feels less pressure about it. I need her to be a teenager because I need to be a mom.) But everyone knows the adolescent instinct is to sense weakness and take advantage. And while she has her moments when we both get to do our jobs (she making mistakes, the moms yanking her back in line), overall our worries and troubles are nothing compared to what mothers of teenagers around the world cope with.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Living with dignity includes recognizing these blessings and the people bearing them, loving them and thanking them. And learning, finally, at long last, how to accept gifts graciously. (I am, though, making my sister homemade cinnamon rolls for next Wednesday. I should be feeling great these next ten days or so.) </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Today I am blessed with an attitude of gratitude. The herx must be over. Yippee!</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-88534417286803509062011-01-19T08:17:00.001-08:002011-01-19T08:17:19.463-08:00Whose Death is this Anyway?<div class="MsoNormal" style="margin: 0in 0in 0pt;">When I first started treatment and began killing these spirochetes in earnest, my naturopath encouraged me to recognize that the all-over body pain and emotional distress signaled the demise of the bugs and my body’s attempts to deal with the onslaught of toxins released in the process. The worse I felt, then, the more encouraged I should be since more pain meant more dead spiros.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I embraced the theory and reminded myself each time I herxed of what she’d said. The naturopath, too, would have to remind me as well, since my brain has become more a sieve than the vault I once enjoyed. When I was still able to work and my colleagues would comment on noticing me walking with either a pronounced limp or a cane, they would ask about it, and I would begin rattling off the “good news” that I only felt like death because the treatment was working. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Based on the confused, concerned, and sometimes outright amused expressions with which this perspective on the pain was received, I suspect half of my colleagues think I’m nuts and the other wonder what kind of quack I’ve gotten myself involved with.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Now that I’m no longer working, my days of pain remain uninterrupted by such inquiries. My poor family is well acquainted with the herxing and they just try to stay out of the way and not poke the bear. And while I found the questions about my health irksome, nosey, and sometimes of questionable intention at the time, they at least provided me the opportunity to remind myself that the pain is a positive sign.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">That key concept slipped through the cracks this month as I experienced the worst herx yet. I’d expected more pain, less mobility, and utter exhaustion because I’d started the antibiotic injections at the start of this cycle. Still, when the storm broke and I awoke at a two in the morning crying from the pain, I found myself utterly unprepared for it and laid there in bed, wondering why I keep waking at all.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My body, mind, heart, spirit filled beyond capacity with pain. I smelled it, tasted it, felt it collecting in my neck, shoulders, back and hips. I couldn’t shake it with meditation, prayer, gentle stretching, breathing, food, water, coffee, hours on the porch at down and duck. Nothing. I felt overfull with my own death and spent most mornings and every afternoon crying inconsolably for my daughter, my wife, my family, my friends, myself.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Now that the emotional distress of the herx has passed and I’m moving into the bed-ridden pain part of the cycle, I’ve regained the necessary perspective and posted a note by my bed: It is not my own death I feel; it is the spriochetes’. We’ll see if this works next herx. I’ll probably see it, tear it down and burn it in a fit of pique. The anger and frustration that course through me still amaze me.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Recently, I got into a tiff with the administrators of my health spending card and chewed the customer service rep a new one—not as a blameless cog in a corporate wheel but because I’d caught him out in a lie. At the end of the first week in January I still hadn’t received my new card. My old one had, of course, expired in December. First the rep tried to blame me for not ordering the new card. Then he had to back down and admit that the company really doesn’t want the barrage of consumer calls requesting new cards and that, yes, their system was set up to deliver new cards in a timely manner.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">We disagreed about the timely manner—and he lied and told me a card had been sent out just two days previous. I knew for a fact this wasn’t the case. I had already checked online and their own voice-mail hell system had told me a new one had not yet been issued before transferring me to him—and he was the escalation manager and not just a ground-level operator so the system clearly knew there was an issue. I blew my top and told him that I was dying and the last thing I needed was some [insert favorite epithet here] jerking me around and wasting my last days on idiotic bureaucrats who didn’t have the intelligence to keep their purported facts straight. It’s a sad sad day indeed when the Lyme brain can track facts better than those fools. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Then the little f-er [my own favorite epithet] had the gall to tell me he was sure I’d be better soon. I snorted and told him only after I was in the ground would I feel better and hung up. (For the record, I am donating my body to science since I can no longer be an organ donor. Anything that’s left is to be burned.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Two hours after the call I got an automated email that my new card had been issued. And I did get the card in the mail five days later. It took them ten days to process my requests for reimbursement for the doctor’s appointments and meds I’d had to pay for out of pocket while waiting for the card, since I couldn’t very well cancel my appointments—not just for the protection of my health but because the disability coverage insurance company is dissatisfied with the pace at which my treatment plan is progressing and will extend my claim now only from one appointment to the next, leaving literally only 24 hours for my doctor to gather her notes and fax them to the company before my “agent” closes my claim. Again. Stress much? I don’t recall that being included in my treatment plan. . . .</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Through this, I’ve come to the conclusion that death with dignity comprises more than the intentional act of cutting short one’s final days of suffering and misery. It should also be about having doctors who don’t roll their eyes at you, pat you on the (inflamed and painful) knee, and assure you that they know aaaaallllllll about Lyme and that you don’t have it. On the first effing visit ever with the doctor, despite the documented lab results in my file indicating otherwise.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Dying with dignity should include not having to duke it out with the insurance companies about treatments not being covered, about disability leave dates being extended in two-day chunks as a means of blackmail for additional documentation and treatment plans (apparently, having had my new medical insurance for only 19 days, the company handling my leave from work feels it is taking too long for an evaluation by a specialist—forgetting that I’ve had five appointments with three doctors since the first of the year and have absolutely no control over when the specialists get back to me—and that yes, they, too are probably inundated with referrals because surely I’m not the only one who clung to life through the last weeks of December, waiting for her insurance coverage to change).</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Dying with dignity should include the safety net for which I worked myself (quite literally) into the ground. I gave twelve years of honest work to my employer—the longest damned temp job ever I’m sure. I only took the job because I have a daughter to feed and held onto it because my child kept eating. Imagine that.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">To have my integrity doubted now fills me with such rage I want to take photos my myself to send to the insurance company, my pale yellow skin hanging off my unpadded skeleton—ask them if they think I’m really healthy enough for work. But then, there goes what little dignity I have left. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Dying with dignity should not include sleepless nights induced by maternal guilt for having squandered my child’s college education savings on treatments that didn’t work for me and weren’t covered by my medical insurance (the treatments I underwent work for many many people). It should not include having to choose between getting on the long list of homes awaiting foreclosure and feeding my child or paying for my meds. It should not include hours spent in the afternoons wondering why I’m still here, dragging my family down, trying to cling to the last vestiges of positive thinking and peace I’ve acquired, trying to rest and get better so I can continue to live with dignity. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Maybe that’s the problem. Maybe there is no dignity in death, by its very nature. Maybe there is only dignity in life.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-63519269649477111532011-01-15T06:47:00.000-08:002011-01-15T06:47:17.226-08:00Lymus Interruptus<div class="MsoNormal" style="margin: 0in 0in 0pt;">Most people would probably agree that trying to have a conversation with someone who constantly interrupts borders on insanity—pointless, frustrating, unlikely to change. I’ve never had much patience with people for whom it seems impossible to hold their tongues. And to my knowledge, interrupting others had never been an issue for me. I can’t recall people complaining to me about it, and I’m quite sure it would have made my wife’s Top Ten list of personal habits to “work on” if it had been issue before now.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Sure, the lively exchange of ideas between or among friends is one thing, when everyone’s brains are clicking on overdrive and the thoughts come faster than words. Or when we exchange heated words, our own anger or hurt or fear outweigh our senses of social propriety and we tend to bound forward, heedless of the one with whom we are engaged in battle.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">But in the course of normal conversation with friends and family, lately I have developed the annoying and shameful habit of interrupting others when they’re speaking. It’s terrible, and I don’t even know I’m doing it until it’s too late. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I find myself, too, not only using the wrong words or forgetting words altogether, but giving voice to thoughts I would rather have kept to myself. So far it has been mostly about inconsequential things, or when I’m in one of my increasingly frequent moments of pique, to which I will admit I’ve always been prone. But I used to be able to control what came out of my mouth, carefully weigh my words.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Now I’m lucky to remember the end of a sentence once I pass the half-way point. And if I’m interrupted by anything, I not only lose track of what I was saying but of what the other person was saying, and much of the time what we were even talking about to begin with.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My wife suspects this drives my new annoying habit of interrupting; that I’m afraid I’ll forget what I wanted to say in response to something in a conversation, so I blurt it out. She’s probably right. But still, it’s rude and it drives us all crazy. It assumes that I know, before the other person has finished speaking, what they were about to say, have processed it, and have readied an appropriate response. None of which is the case when I’m drawing breath to speak after my conversational partner has uttered only five words.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Soon no one will want to talk to me at all anymore. As a lifelong social isolationist, three months ago I would not have considered this a great blow. Then, I still worked full time and my days filled with coworkers, acquaintances, friends. Being polite, friendly, professional drained me, more and more as my physical health declined. I longed for days uninterrupted by the voice of another human being, unfettered by the expectations to play nice and get along when I hurt so much I really just wanted to go back to bed and cry.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">At the same time, though, I resisted taking a leave from work because I didn’t want my days to be filled with only my own voice. I wanted the option to go back to bed and cry, but I didn’t want that to be how I actually spent my days. But it is. And I am fortunate to have worked for the same employer for over a decade, to have the opportunity to take this time to get healthy without worrying too much about paying the bills and educating my child.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The only thing is, I’m not getting healthier. I can interrupt every conversation I have from now until I draw my last breath, and it won’t make me remember my words, won’t keep me from losing track of my thoughts, won’t undo the damage the spirochetes have done to my brain. And I can spend each day in bed, until my days are done and it’s time to donate this wreck of a body to science, but it won’t change the outcome.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I’ve undertaken this new course of antibiotic treatment because what I’ve been doing for the past year wasn’t enough for me. And it’s tough (duh). But I remembered yesterday something a friend, who is a practicing western physician and knows a little about Lyme, said by way of encouragement about this new treatment plan. It’s got an average 35% success rate—and that’s good! WTF? Talk about a light at the end of a tunnel. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">After spending the next two years praying for either sleep or death (with no preference as to which method finally delivers even a modicum of peace from the endless unrelenting pain) I have a 35% chance of truly being better and getting my life back. Well, that is exciting news. I’ll no doubt interrupt at least half a dozen conversations today in my exuberance to spread the joyous word.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I just interrupted myself and thought it would be fun to go online and find out what else I have a 35% chance of doing, getting, or otherwise being impacted by. But as I sat looking at the screen, I couldn’t think of anything. I typed in “statistical probability” and the predictive software guessed I was looking for info on either the probability of the theory of human evolution being correct or whether life exists on other planets.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Where did we come from? Where are we going? And are we really as alone as we feel? Questions of the ages, and I am once again reminded of my mote-like existence in comparison to the wider world around me.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-73161968445212354682011-01-14T07:03:00.003-08:002011-01-14T07:03:37.642-08:00A Shot in the Dark<div class="MsoNormal" style="margin: 0in 0in 0pt;">As I settled down to type this, I had to remind myself to sit up straight. My daughter would have a field day with me in the mornings, when I hunch over and shuffle through the house in search of coffee. Again today I got out of bed shortly after I woke at four, or I should say started to wake. I don’t think I fully have yet, and I’m slouching again already.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Yesterday I got out of bed about the same time, having “slept in” until about six the past week or so and paid the price for my sloth in unmanageable pain that lasts all day. I have no idea why this is, why additional sleep and rest would make me feel worse. But I’m not alone—I mentioned it in passing to someone else with Lyme and she’s noticed the same pattern. She doesn’t wake as early as me, but if she lingers in bed she too suffers from worse than normal pain.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Today I harbored no desire to snuggle back into the comforter and tempt fate. The weather is unseasonably warm and I wanted to throw on my sweats and sit on my porch. Of course, throwing of any kind presents significant challenges of late (unless we’re talking temper tantrums during rage week), so it was really more an awkward slithering than anything else.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The application of hard lessons and the rare opportunity to enjoy such a temperate morning were not the only things driving me from my bed today. Yesterday was shot day, and much of the meds are still amassed in my right bum cheek. (Why are they called cheeks?? Do we smile there and not know it? I know I’ve been accused of talking out my ass once or twice, but I don’t get the cheeks. If I remember, I’ll have to look it up when I’m done here.) (Crap. I just remembered that I have looked it up before; I just can’t recall the answer now.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I digress, doubly this time. Shame shame shame. I’ve thought about editing out these side-routes and offshoots, the blue highways of Lymeland perhaps—the little roads that seem to wander off into nowhere, or into time warps where it seems the past three decades were just a dream. But I’ve been advised to leave them as is if I want these entries to offer up a reflection of my true interior landscapes. Or was it because misery loves company?</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Not that I would say I’m miserable overall. Yesterday I was miserable, which brings me back to the shot. See, I knew the road would wend its way back to the interstate eventually. My wife offered me a choice of taking it before or after work. The last injection wiped me out and I had an appointment yesterday morning, so I chose after work. Never again. I don’t know what I was thinking.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I don’t think I was thinking at all, actually. This was only the third shot, and the first my wife has given me at home. At the end of the day, we both had had enough of people (our own sorry selves included). It was a sad state of affairs, me crabby and anxious, my wife fed-up and frustrated. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">We were so tired we both forgot a cotton ball to hold against the injection site, and my wife’s hand had jiggled a little bit so when she pulled out the needle she gasped. I peered around to see what the hell was going on (gasping is not a good sign) and saw a steady trickle of blood running down into the small of my back. Then I gasped (still not a good sign). All I thought of in that moment was cardiac arrest. If she injects these antibiotics intravenously I could die of a heart attack within minutes. And there’s nothing like the threat of cardiac arrest to bring on its symptoms. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">While she ran to the bathroom to grab a tissue (she must have been panicking, too, since there was a box sitting on my night table—we just hadn’t pulled one out and kept it handy) I used my pajamas to stop the bleeding and gave myself a calming mental slap on the face. My wife had checked to make sure she wasn’t in a vein before proceeding. She’d really have to try hard to find a vein, from what I’ve been told by myriad grumbling phlebotomists. I hadn’t just imagined the jiggling needle. The poor thing was so tired and nervous that her hand was shaking and countless capillaries fell victim to its sway.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The bleeding stopped almost immediately, and obviously I didn’t have a heart attack. And next time will be better. It will be in the morning, at the start of our day, before I’ve had a chance to build up petty grudges and grievances against the world and my small place in it.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-16438822562512199512011-01-08T08:07:00.001-08:002011-01-08T08:07:20.031-08:00Trading Places<div class="MsoNormal" style="margin: 0in 0in 0pt;">Thursday, my wife drove me out to the new specialist and watched while the doctor poked and prodded my hips and backside, looking for sufficient flesh to safely inject the antibiotics without hitting a nerve or a bone. Next visit, on Monday, my wife gets to do it herself with the doc supervising and I don’t think I’ve ever seen her so nervous in the nine years we’ve been together.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">When we first got together, she would occasionally have to jab me with my migraine meds. The shot was one of those nifty automatic pens that she simply held against my thigh and pressed a button. Sure, it had the same kickback as the small pistol my grandfather taught me to shoot rattlesnakes with, and made about as much noise as that tiny weapon. But everything was hidden and fast. Speed of light fast compared to the abx. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Without forethought on Thursday, I opted to get the first abx shot in my right hip, which resulted in my back being turned to the action unfolding behind me. Before I rolled over, though, I caught sight of my wife’s face and the poor thing had broken out in a nervous sweat. She put on her brave face for me and squeezed my hand, but I could see the terror in her eyes.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">And that calmed me for some reason. I’d been so uptight I’ve lost sleep over this new course of treatment. And I’m not too embarrassed to admit I nearly lost my shit when I saw the needle, because I immediately realized there was no part on my body where enough muscle remained to accommodate it. When the time came, though, hearing the tremor in my wife’s voice gave me something other than the pain in my hip to think about, reminded me why I’m fighting so hard. So I just rolled over, did my breathing, and waited for it to be over.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">When my wife shoots me up for the first time, I’ll get to look at her. This makes her more nervous; when I pointed it out last night she went green and nearly threw up. She’ll see, though, that she isn’t hurting me. I didn’t feel the needle at all, and the compassionate doc was patient with the plunger so the experience was more uncomfortable than anything else.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Until I tried to stand up. I felt like I’d been hit with a baseball bat. The meds, of course, had collected into a gait-impairing monkey-bump the size of a tangerine. For the first time in six months I had an ass. Unfortunately, it was only on the one side, but at least it was firm and riding high.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-16409372005278028602011-01-06T10:35:00.001-08:002011-01-06T10:35:38.832-08:00Contact Lyme<div class="MsoNormal" style="margin: 0in 0in 0pt;">My wife rose early this morning and joined me on the porch to watch the sun rise. Not that there was much of a display today; the clouds were too thick to show anything but a gradual lightening from inky black to hazy gunmetal with the occasional wisp of white.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">While I sat contemplating this, she realized she’d forgotten to call her brother last night to wish him a happy birthday. She and I had talked about it, too, as we were heading into the house so I could finally go to bed. I suspect her sister arrived shortly after I went to bed and distracted her.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">But this is a common occurrence, her forgetting things. And while I have surely exposed her to the little spirochetes happily munching away at my brain, she has not been bitten so far as we know. Also, she has the opposite constitution as me, and so would most likely be able to fend them off quite readily as I have not.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">All the same, we’ve decided she suffers from Contact Lyme, as do all of the people currently living or having lived in our home over the past few years. My symptoms seem to bleed over into their behaviors. It’s terrible. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">When I first noticed this, I stopped complaining or being specific about what hurts (not that I was much of a whiner to begin with). But this had no appreciable effect on what was happening. Or at least what I was seeing. There are, of course, other explanations. My wife has caretaker burnout. My daughter is an adolescent, which says it all I suppose. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Nonetheless, I wonder if others are seeing anything similar in their own homes. My wife and close friends notice it, too, so at least I have the comfort of knowing it’s not all in what’s left of my poor little head.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-53040588455748424762011-01-02T08:43:00.003-08:002011-01-02T08:43:29.541-08:00Flipping the Switch<div class="MsoNormal" style="margin: 0in 0in 0pt;">Thank God for another beautiful sunrise this morning—flat low-lying clouds glowing pink then orange from underneath. Gorgeous enough to drag me up out of my funk. I woke too late this morning, or I should say I went back to sleep when I woke at four and didn’t wake again until almost six, when my body and head hurt too much for me to ignore anymore. I must have been crying for a while, because my pillow and hair were wet.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The crying continued as I made my way downstairs, running into every doorjamb on the way, and it increased when I remembered I’d used the last coffee filter yesterday and had forgotten to get more. Not that I was sobbing, just leaking really.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Our paper towels don’t lend themselves to back-up filters, leaving too much lint in the brew. So I use a French press as a back-up means of life-support. But my wonderful wife, who does all of the shopping for our family, has taken to grinding the five pound bag of beans at the store in their industrial beast to save me the time standing at the counter doing so one pot at a time. And, being a wonderful wife, she knows that if I can see through the brewed coffee in my cup, it’s too weak; I want to be able to see a reflection in my coffee, I want to be slapped around by a rich, full flavor. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Again, I digress. I love coffee. My point was, the drip grind is much much finer than what I would use for the press, and since my wife is now grinding all of my coffee for me, I can’t adjust it at home. And so, the press is not such a convenient back-up. This morning, I began to get angry as I visualized all of the grounds seeping up through the strainer, making mud soup.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I didn’t even try to avoid flying into a rage. I’ve found that the best solution is to not get angry to begin with, since once it starts, the cascade doesn’t stop. I feel like the Incredible Hulk, once that switch is flipped there’s no turning back until the rage has run its course. So most times, I focus on my breathing, try to put the situation into perspective.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Not this morning. I thought for a few seconds I’d hit the jackpot and skirted the rage when I remembered out of nowhere some beans a friend had given me for a gift. I dug them out of the freezer, what precious few remained. It’s really good coffee. I had to hide it from myself to save for days when I need something special to savor or when I feel I’ve earned or want a special treat. Like today hahahahaha.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">So what if the delicious little dark brown nuggets needed to be ground? I have a grinder. I can do that, and leave them coarse for a change. I had coffee and my morning was back on track. Until I spilled half the beans on the floor by missing the grinder and not pulling the bag back up in time. Then I over-ground them because I’d been trying to be efficient and roll the bag back up at the same time. With great trepidation I lifted the lid on the grinder, and my hand was instantly coated in a fine brown powder. Perfect for the drip. Terrible for the press.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">That’s when I went over the edge and I’m sure I turned green. I slammed the grinder back on the counter and started to cry in earnest. My hips, knees, and shoulders complained that I was a crazy woman and exhorted me to sit down. I ignored them, making my way toward the electric kettle. Which was almost empty, damn it all to hell and back again. Could nothing go right? The sink is at least eight steps from the socket for the kettle. I tugged on the cord but it wouldn’t come out of the kettle. I tugged again; still nothing.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">If I’m feeling this mean and green why do I not have the strength to get the cord out of a simple kitchen appliance? In retrospect, I probably should have tried my left arm, the one not bruised and sore from running into things. But at the time, I was going to get that cord off that kettle whether I broke the thing or not. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Oh what a battle. I yanked; it went into a full retreat. I held the cord firm and pulled the kettle away from me; the cord slipped through my fingers. I beat it once flat against the counter to show it who was boss—I am the one with the thumbs in this situation after all—and pulled again. It remained unimpressed with my flaccid display of brute force. I cursed at it fluently, vehemently, in multiple languages. It bucked and resisted my every effort, overturning the other items on the counter. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The ruckus at this point brought my wife out of bed to call down the stairs, inquiring if I was all right. She knows I’m not, but she also has learned to leave me alone because I will take down anyone and anything that tries to get between me and whatever I’m battling. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Or I’ll try and end up hurting myself. I called up that I was fine, beat the kettle randomly on the counter again, and gave one last pull. It gave at last, and so unexpected was the victory that I stumbled backward and spilled what little water had been in the kettle all over myself. I don’t see how I could have done that; the lid latches and clicks into place. I think it was sabotage. That damn kettle. We haven’t seen the last of each other, the two of us.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Yes, I know I could have brought the water to the appliance. I could have asked my wife to make the coffee for me. But the switch had been flipped and that kettle was going down. I was getting my coffee no matter the casualties.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">It makes no sense, and these moods are not reflective of my overall personality. I’m feisty and stubborn, yes. No doubt. But to dissolve into a toddler-like tantrum in the middle of my kitchen at six in the morning because I forgot to get filters, I spilled the beans and then overground them is not really me and I hate it.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">At least the rage dissipates quickly, if I let it out. Ten minutes after the whole battle royale, I stepped onto my frosty porch and sat down to enjoy an amazing perspective-shifting sunrise while enjoying some of the best mud soup I’ve ever had.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-35107059024918852192011-01-01T09:05:00.000-08:002011-01-01T09:05:25.206-08:00Happy New Year?<div class="MsoNormal" style="margin: 0in 0in 0pt;">Today, ostensibly, begins a new year. But apart from having to remember to change the date on any odd check or form I may fill out, I can’t say I feel any different. No big resolutions this year for me; those came a couple of months ago when I decided to take a short break from working full time and move in different, more aggressive, direction with my treatment.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">As long as the spirochetes run rampant through my body, I don’t know that I’ll feel any different no matter what year it is. These past twelve months (my first in treatment) have flown past, a blur of symptoms, pain, frustration, guilt. The next twelve, I expect, will do the same—though at the time the hours do pass with a torturous languor that marks a life equally void of momentum.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My family would disagree about the momentum, especially as they all look forward to and embrace the impending antibiotic treatment that still makes my gut knot when I think of it. But from my perspective, I’m exactly where I was a year ago—starting treatment, full of anxiety, but unable to sustain my current condition as is. Except this January 1, I’m nowhere near as healthy as I was 365 days ago. At least I don’t feel like it.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Still, I’m fortunate to have family and friends to support me. At least I think I do still have friends somewhere out there. Not having the energy to reach out much let alone go out to meet friends, I’ll have to trust that those connections I valued before I became more homebound will remain when I am better. I doubt it, else why aren’t they here? </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Aside from the neighbors with whom we are close, and who have very little choice about withdrawing from the situation unless they want to try to unload their property in a hostile marketplace, my wife and I have only one set of friends who have stayed in contact with us and understood that we have the heart to be with others but we don’t have the time or perhaps the initiative to be the ones to make the calls and set up plans. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">This isn’t to suggest I’ve ever been one to surround myself with gaggles of friends. Most people either fear me or dislike me for instinctive, unexamined reasons. And I don’t mind; I lack the social skills for high maintenance friendships, which I loosely define as anyone requiring contact more than once a month in order to feel secure in our relationship. Still, I am sorry that a few people have receded, even stopped returning emails and such, once I stopped working and getting out and about.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">So whoever you are, be you stranger or acquaintance, whether you’re struggling with Lyme or just browsing the web and finding the tedium interesting, I wish you good health and good friends throughout the coming year. For myself, I am going to fetch some more coffee and see if my dear friends (who wisely stayed over last night) are ready for some too. Maybe after a couple of cups they can answer for me, is it really a new year if the next twelve months are going to be filled with same crap as the last twelve?</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-5021989771004100942010-12-31T08:52:00.000-08:002010-12-31T08:52:37.535-08:00Gladys<div class="MsoNormal" style="margin: 0in 0in 0pt;">A few minutes after five this morning I turned on a local news program to check to weather forecast. I’ve cut myself off from the news almost altogether; I don’t even listen to NPR anymore and I check the forecast about twice a week.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">This morning, a traffic cam was zoomed in on a bridge, to highlight the dangers of black ice, and a man wearing hiking books, baggy cargo shorts, a puffy jacket, and some sort of hat walked into the camera’s path. Shorts? I know this is the <place w:st="on">Pacific Northwest</place>, home of hardy men who welcome the chilling kiss of the river’s mist on their bare calves.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">But the temperature still lingered in the twenties. I could see the frost twinkling in the hair on his legs. I smiled and concluded he was crazy, turned the tv off, bundled up and went out to the porch to meditate and watch the sunrise.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Later, it occurred to me, my neighbors probably think I’m nuts for spending hours each morning out there, no matter the weather. Colder temperatures just mean additional layers. I spend a lot of time doing what probably appears to an outsider as simply staring off into space.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">At least, I do now that I’ve changed which direction I face. I used to sit facing generally south, which grants me a panoramic view of the neighborhood on the other side of the street. It’s quite beautiful, regardless of the season, and I’m fortunate enough to know and care for nearly all of my neighbors.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Which brings me to needing to change seats. Early in the morning, as people rise and light their homes while the sky remains dark, it is easy to detect at least shadows as people ready themselves for their days. (Our own incredibly modest neighbor has in fact asked us to install thicker curtains on the windows that face his home. My wife complied; I still grumble and make rude gestures at the fortified window coverings.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">As much as I liked facing south and watching the lacy outlines of the bare trees become visible against the lightening sky, one day I realized it looked like I’d become the neighborhood Gladys Kravitz, peering into everyone’s windows.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Since I value my own privacy, I don’t tend to look into other people’s homes. It freaks me out when there’s a gap in our curtains, and I make the rounds a few times a night closing them up as the cats get into and out of the sills. But it is human nature to be attracted to sudden movement, and one morning an abrupt flash of white in the window directly across the street interrupted my reverie.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I looked up, of course, and noticed the curtain in the window moving slightly and a shadow moving away. I wondered if the neighbors had left it open the night before, had seen me out on the porch facing their window, looking—for all intents and purposes from their perspective—into their home.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Knowing what sort of reaction that would provoke in myself, I decided to move to a different chair. Now I face more northeast and have a tunnel view up the block, lined with trees, busy with foot traffic—I even saw another guy wearing shorts walking past my house just before I came up to write this entry. Really??</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I digress. Now, the only neighbors whose windows I face are the overly prudent family who would prefer to impose themselves and their morality on their neighbors rather than simply hang heavier drapes themselves. (The picture window in their dining room remains, to this day, bare.) But the far end of my porch and then some bordering bushes and trees block out all of his windows from the vantage of my new seat.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">So now, if I’ve been harboring a long-silent Gladys, she’ll have to be content with a narrower view full of strangers to observe and trees too far away to make out any meaningful detail. I think she’ll live. I’m not so sure about those guys in the shorts though.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-83932799054889243912010-12-30T06:45:00.000-08:002010-12-30T06:45:17.863-08:00Vigor<div class="MsoNormal" style="margin: 0in 0in 0pt;">I went back to sleep this morning until quarter to six after waking at four. Dumb idea, trying to get more sleep in the morning. I’ve learned I’m better off getting up and trying to take a nap later, but it was so late by the time I got to sleep last night and my physical pain was still so prevalent when I awoke that I just didn’t want to slide my feet from under my warm comforter to sit in my office or out on the porch.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Eventually, slowly, after much ibuprofen and coffee, I did make my way out onto the porch, bringing the copy of Doctorow’s <i style="mso-bidi-font-style: normal;">Homer and Langley</i> that I ordered online. I’m supposed to be reading light fiction, and until now it hasn’t been all that taxing or even provocative (which isn’t to say that I wouldn’t recommend it). But this morning I reached the point in the novel when the narrator realizes for the first time the full consequences of his blindness, understands fully that he is at a disadvantage. This blow to his self-image is nearly as damaging as his further conclusion that love will forever elude him.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">In describing this moment, the narrator explains that he’d lost “the mental vigor that comes of a natural happiness in finding oneself alive.” I wonder, do people really feel that? Mental vigor? Natural happiness? And from finding oneself alive, no less. </div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-16178025021190740722010-12-29T07:58:00.000-08:002010-12-29T07:58:52.607-08:00The Young and the Rested<div class="MsoNormal" style="margin: 0in 0in 0pt;">Where would I be without my two a.m. sweat-drenched epiphanies? Yesterday’s appointment with the new (to me) specialist and the anxiety it produced must have been playing on my mind last night. I awoke, shivering and nauseous, but momentarily clear in the head about my nervousness. There was quite the list of reasons, most of which have slipped away in the process of waking. Which is fine, for a change, since the ones I recall are enough for me to think about. I don’t want to be sicker than I am now; I don’t want to be in more pain than I am now. And right now, getting better for the long-term means getting much sicker in the short-term.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Who in their right mind would choose twice weekly injections of a drug specifically designed to kill everything in its path? And a painful shot at that? Ok, not everything in its path. And we’ve established I may not be altogether in my right mind at all times. But still, I’ve drug my heels about antibiotics since my early twenties. I harbor a strong pre-Lyme hesitancy about antibiotic overuse and its being a significant contributing factor to our demise as a culture. I recently read some interesting articles about MRSA, <country-region w:st="on"><place w:st="on">Norway</place></country-region>, and their successful anti-antibiotics campaign. Wait, that takes it too far; I think the campaign is really more for awareness and the judicious application of antibiotics, not their outright abolition.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I digress with increasing frequency these days. I fight my instinct to comb over what I write and tinker with it, check and recheck for wrong words, wrong usage, the language issues that creep into my speech. But I resist the urge to tinker for the same reasons I allow the digressions: there’s not much use fighting them and these entries should reflect not only what I think my brain is up to but how it’s really functioning. Granted, I’ve written all of these during my best early-morning hours. It still takes me far longer than it should to string these words together. But I couldn’t do it at all after noon.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Using Word to draft these posts cheats, in a way, though I could take the auto-correction feature off and see how terribly I’m really typing. I can see the letters rearrange themselves on the screen as if by magic when I’m reversing them or throwing them together in a barely recognized heap. It’s only technology, which to some today even still would seem like magic with the things we can do, smart phones, blue tooth devices for them and our cars, gaming devices, homes.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">One of the Christmas commercials this year assured me (in shouting voices) that the only gift that would not be greeted with raised noses of sneer would be this voice-recognition software that types as you speak, among other things. How can it capture punctuation, a necessary means of maintaining order and clarity as well as a subtle means of communicating tone or irony? What would Jonathan Swift’s reaction have been to this? To use the software to compose an open letter to the public, only after first discovering its pitfalls so that he could most effectively bring home his point? Ending all sentences with question marks and all inquiries with periods? No, that last would probably have been too facile for him, though it’s the best I can muster at the moment.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I remembered this morning, as I sat on my porch and let my mind wander, that at one point yesterday I’d started to go off on a ramble about feeling how my body and mind had betrayed me, in ceding to the onslaught of spirochetes. I’d lost the train of thought entirely yesterday when I’d struggled to find a word or a phrase and couldn’t, then started down an unrelated path instead.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I still feel that way, betrayed. I suppose I couldn’t deny being easily distracted, as well, but I’d been referring to betrayal, of not being able to rely on my body to push through and get whatever needed doing done. I’d been reminded of that yesterday morning, I don’t remember now what I’d been doing. And then later in the afternoon as I got ready to go to the doctor, the tremors in my hands and neck picked up. Sleep had eluded me, of course. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Before I got sick, this would have been a small consideration. I trusted my body entirely to get me through anything. And that which doesn’t kill us only makes us stronger, right? Wrong. At least in the short-term for me. I had to sit down and rest yesterday before finishing getting dressed. I’d gotten as far as my underthings and one sock, and I fell back onto the bed with my right knee still raised, poised at the ready for me to finish putting on the other sock. Thankfully winter cold eventually roused me. Had it been summer, I may have just called to cancel the appointment altogether. Or, with my luck, been suddenly overcome with the sleep that I’d been chasing since eleven in the morning.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">This was the third rest I’d taken since getting out of the shower. I’d had to sit down to put my lotion on as soon as I’d gotten out of the shower, and then had gotten light headed and weak-kneed while drying my hair.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">This morning, I began not knowing if this new course of treatment is the right thing to do. I wish I could say that all has become clear, that I now see how ridiculous it is that a relatively strong and active young(ish) woman takes two hours to get ready to leave the house. (And as one who values her time this rankles all the more since I certainly don’t close the door behind me to greet the world feeling refreshed from having spent three hours resting in bed nor looking like Heidi effing Klum having spent two hours getting ready.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">All remains unclear because I know that as bad as that sounds, I’m really quite fortunate to still be driving myself around, to still be able to shower and dress without assistance, to have any hair left to wash and dry. But these last vestiges of health and independence could fall under the ceaseless, munching spirochetes and whatever damage this a-bomb of an antibiotic stands poised to bring forth. I don’t want to get sicker, but I can’t sustain this half-life either. Maybe looking forward to jabbing me in the bum a couple of times a week will help offset my wife’s caretaker burnout. </div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-63356206008108014712010-12-28T06:25:00.000-08:002010-12-28T06:25:56.739-08:00From Dawn to Dusk<div class="MsoNormal" style="margin: 0in 0in 0pt;">Later this afternoon I have an appointment with a new Lyme specialist. Until a couple of days ago I wasn’t nervous. Maybe the last minute rush of the holidays distracted me. My daughter being with her dad and not under my feet, gossiping about her day also leaves a void into which these troubling thoughts creep.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Which is ridiculous; even the worst that could happen doesn’t bear that great a threat here. There’s no reason to be nervous. The task of bringing forth a complete and concise personal narrative including lists of symptoms, treatments, reactions and so forth is daunting, to be sure, but nothing fearful. I spent much of yesterday afternoon gathering notes and creating a timeline since I know I’ll forget nearly everything relevant the minute my bum hits the waiting room chair.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">So at least I’m prepared for the practicalities of the grueling marathon crammed into the timeframe of a sprint that will comprise the initial intake appointment. As much as I can be I suppose. The appointment is late in the day, and about thirty miles away, which wouldn’t be so bad if it weren’t in the direction all of the other commuting lemmings will be heading. But I’m fortunate enough to have a comfortable vehicle and I just got two new CDs. Plus, if I time it right (and if the doctor is running as late as I suspect she’ll be), most of the lemmings should be off the road by the time I’m done and I should be able to make it home just before I hit my wall.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Now that the day has arrived, I wish I’d waited for an appointment later this month but earlier in the day. Or had asked my wife to take the afternoon off to go with me, hold my hand, and give me a red sucker if I’m a good girl and don’t cry. Crap. I didn’t used to be like this. On mornings like these, when I can remember being different from how I am today, I sometimes sit and wonder at the damage the spriochetes are doing to my brain. I miss it.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Early this past spring, when the decline in my cognitive abilities was most noticeable, I began wondering if I would find an increase in other abilities. If I was suddenly struggling with language, for instance, a medium as comfortable to me as air, then would I finally find myself able to sketch the way my porch railings threw shadows onto the worn slats? (Alas, I tried and the answer is no.)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Instead, what I found is that I’d rather sit with the setting sun on my face, eyes closed, ears open to the sounds around me than sit trying to trace what I see. I’ve also found that timing really is everything. My days have fallen into a natural rhythm: chores and tasks requiring language or planning skills are best done before noon; errands are best run between the hours of ten and one; bed is the best place for me to be between one and three (for myself and everyone else); and anything most effectively accomplished with limited cognitive interference will bear the best results if tackled before dawn or after dusk, as my brain is more than happy to comply with any and all requests for non-interference at those times of day. And with that I should sign off, bundle up, and go back out to my porch to watch the sun rise before I begin over-analyzing everything I’ve written and end up posting nothing at all.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-76708336857211619982010-12-27T10:16:00.000-08:002010-12-27T11:36:59.728-08:00Queen for a Day<div class="MsoNormal" style="margin: 0in 0in 0pt;">Those of us with Lyme know all too well how utterly draining it is to have to socialize when we’d really rather be in bed. Everyone has these kinds of days, but the elements of the spriochetes, Lyme rage, and inestimable exhaustion combined with the expectations for holiday cheer can come of no good. To have my worst week of the month fall when the demands on my time, patience, and limited social niceties were greatest seems like some cosmic joke and I fail to see the humor. (Affecting the stiff upper lip: “We are not amused.” Has anyone seen my tiara?)</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I awoke this morning, as I have most days this week, wondering which of yesterday’s events made a strong enough impression that I actually remember them in sufficient detail to pass them on here, and hoping what I do recall might possibly be worth any stray readers’ time. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">What I remember most about yesterday was the daunting effort it took to control that mean cutting voice in my head uttering unwarranted obscenities at my wife because she wanted to spend the day with family and I had to choose between being alone at home or feeling alone in a house full of people who love me.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The obscenities went unuttered. I showered and went with her to the family, with the understanding that I was going to take the car and go home when it was naptime and she was to hitch a ride with someone else. Fair enough. As long as I said as little as possible, we should all be safe.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The previous evening, Christmas being an important holiday for the family, my wife and I were at her parents’ house and I had long since needed to go home. She had said something hurtful to me, more thoughtless than anything, in front of her parents. The voice in my head exploded with rage, the kind that makes your palms sweat and limbs shake, the rush of cortisol and adrenaline. I had to look at the ground and remind myself of what I’d realized a few months ago: I may not react over nothing but I overreact over most things during rage week. I kept my voice low and even (the tone that makes the hair on my wife’s arms rise up), said something to end the conversation and walked from the room to gain some distance and perspective. Her parents have yet to experience the joys and wonders of rage week.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">And yesterday, at about noon, I noticed people were starting to talk about food. I’d been stationary for too long and needed to get up, plus I felt that burst of energy I sometimes get about an hour before I hit the wall. So I went into the kitchen and was fetching leftovers out of the fridge when a family friend, who hadn’t seen me in months but had been hearing about my worsening physical condition from the family, remarked how surprised he was to see me so active.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My immediate reaction was to squirt him in the face with the mayo I clutched in my right hand. He didn’t mean to insinuate that the reports had been blown out of proportion, or that I was faking an illness. I think he was genuinely surprised, but he didn’t notice that my feet were firmly planted in one spot, most of my weight on my right leg to give my sore left hip a break. Nor that I wasn’t lifting anything heaver than the condiment cum weapon. He certainly wasn’t around an hour later when all my energy dissipated, and I could hardly muster the attention to watch tv, blinking only when my eyes got too dry to remain open any longer. Half vegetative, probably, I would have looked from the outside. Almost time to be turned, lest I develop bedsores.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Instead of giving in to temptation to scream at him and everyone else (I know for no real reason at all), I shrugged when he asked about the pain (I’m going to be in pain whether I’m sitting or standing so it doesn’t matter; it’s good for me to get up and move) and then launched into an explanation about getting close to hitting my wall and wrapping things up before I headed home for a nap. Then I wondered why I was explaining myself to him. To anyone. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The anger evaporated on the drive home, helped in part I’m sure to my blasting the radio so loudly that the side mirrors vibrated. Some music was made for that. Not all. And not in residential neighborhoods. The open road is fair game, though. When I got home, I was able to take a nap, to actually sleep for a change. And I slept well last night, too, to awaken this morning feeling more refreshed and comfortable than I have in weeks.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Of course, I have no social obligations whatsoever today. Apparently the cosmic joke wasn’t a one-liner. (Found the tiara. Still not amused.)</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-57666469439207792662010-12-26T08:38:00.001-08:002010-12-26T08:38:54.540-08:00Armed for Battle<div class="MsoNormal" style="margin: 0in 0in 0pt;">Perhaps my efforts toward embracing social isolationism have not been as successful as originally thought. Yesterday I’d been confident that I’d be able to take a short nap without the interruption of holiday calls and texts. No sooner had I posted my entry than my phone beeped, alerting me to the first of twelve messages over the course of the following few hours.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">It reminded me of when, years ago, my (now) wife and I sat down to draft an invitation list to the wedding reception we’d been planning at the time (and have yet to celebrate, by the way). I’d been appalled at the number of people; I would never have guessed that I knew that many. And those were just the ones with whom we wanted to share a special occasion, not even everyone whose feelings may have been hurt by not receiving an invitation because there were a few tussles over certain people not being on the list—in the interest of the greater good was my argument, which won out over personal interests and the desire to not cause personal slights.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Because my daughter is with her father and his wife for the holidays, the mom in me can’t sleep with the phone turned off. As ridiculous as it sounds, it’s true. Rationally, I know that if anything should happen there are no fewer than six people my ex could call. In fact, now that I think about it, he may not even call me directly should an emergency arise—he may call my wife to make sure I wasn’t alone when I got the news. They’re both like that, my ex and my wife. So fortunate we all are to get along. But these things do not warrant further examination.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The end result of my napping phone neurosis was that my wife and I spent Christmas with her family, both of us with very little sleep and one of us in great pain and a foul mood (guess who). If my Herx cycle stays on course, I should feel better today. Little good that did me yesterday, though.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Both mature mother figures of the family (as opposed to my wife, myself, and my sister-in-law who are all moms in our thirties) are currently experiencing great physical pain. One of the women has lived with pain all her life; the other has not had this constant companion. All of us daughters noticed the difference in how the moms coped with the pain, how it bled through in their behaviors differently.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">One wore it plainly in her facial expression and body language. Her syntax and diction even changed, along with the topics of conversation straying from their normal positive subjects. I’ll have to pay attention to the language shifts, though. That could be interesting.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Again, I digress. A person would have to be on a familiar basis with the mom who’s known daily pain to detect how much pain she was in. Partly because she’s learned to push through it and probably somehow compartmentalize it in her head. She distracts herself with multiple simultaneous conversations as a primary coping mechanism, I suspect, and this brings me to the other part of why it is difficult to detect her pain. She herself isn’t aware of it. </div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Last week she seriously injured herself and a dozen x-rays (insisted upon by her husband, otherwise she never would have gone to the doctor at all) revealed the full extent of the damage. She needs surgery and has been instructed to limit her physical activity.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">We discussed this briefly last night, she and I, that to the two of us it isn’t all that remarkable that she would have hurt herself to the point where surgery was required to repair the damage and her own assessment had been that it was just a bad sprain. At that point in the conversation I looked over at the other mom in pain, and she had her head back and her feet up in her recliner, eyes closed for a moment. But her face was not restful; even then her eyes retained that squinty expression.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Meanwhile, in that split second, the mom I’d been talking to had struck up two more conversations, so I went into the kitchen to fetch myself some coffee and Bailey’s. Again, I know my doctors would not approve. My sister-in-law even raised a brow at me but only grinned when I said it was worth the seizure risk. I think her eyes may have strayed to the living room to assess additional risks, but she would deny this if asked (as she should).</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">They must have been on my mind in my sleep, the moms in pain and how differently they’re coping, because this morning on the porch my thoughts turned to my daughter. She’s now a teenager, and she’s blessedly known little physical pain or suffering. But the blessing has a flip; how will she cope if she’s injured?</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">She was twelve before she fell off a scooter and scraped her palms for the first time. Only the shame of crying in front of her best-friend kept her tears at bay, she later told me. I hadn’t been there, but later I heard all about it and how unfair she thought is was that she was wearing a helmet, elbow pads, aaaaaaaaaannnnnnnnnd knee pads, but it was her hands that got hurt.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Mind you, she’d armed herself for battle better than I had when I rode my bike down mountain roads at her age, with nothing between my body and the gravel but air. I’d been fearless at her age; still am, relatively so, about some things. But she’s always been a cautious child.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My wife frequently complains that we are raising a mini-me, that she has to live with two versions of her wife: one grown and the other still a teenager, that we thus have an unfair advantage (three women living in one home with no offsetting testosterone is all I have to say on the subject for now). In thinking, this morning, about the ladies last night, my own crabby mood and pain, my cautious child and the own risks I’d taken at her age, I realized that we aren’t raising a mini-me at all. We’re raising my grandmother.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">She’d passed on by the time I met my wife, so she probably can’t see the similarities, but they’re there. Our child is a clear blend of her kind father and my cautious grandmother. When my daughter was born, my first impression was of how very old she seemed. And prepared. Not traumatized by the birth at all.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I remember, as a child, my mother complaining that my grandmother had been born old. And since my mom appears to have been born with a feather up her rear, so ready is she for flight at any moment, my grandmother’s reserved nature rankled her last nerve. I would bet it still does, even though this month marks thirteen years my grandmother’s been gone.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0tag:blogger.com,1999:blog-2882376417909113554.post-49799718613134451772010-12-25T07:56:00.001-08:002010-12-25T07:56:57.751-08:00Holiday Cheer<div class="MsoNormal" style="margin: 0in 0in 0pt;">Another four AM morning, but without the compensation of my usual seven hours sleep or a beautiful dawn sky. The air this morning, too, carries a damp bite that—in spite of my many fleecy layers—seeps into my joints and limits my time out on the porch.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">My coffee yesterday may have been free of grounds, but in the end that bore little indication of how my day was. I spent most of it in bed with a heating pad, seeking but not finding comfort and rest. My wife worked yesterday morning, but got the afternoon off for the holiday. She, too, was tired so we took a nap until it was time to have dinner at her parents’ across town.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">Even after that additional couple of hours of rest, I was in no fit condition to go with her to dinner. She went, though, which in a way made me feel better; I would have felt guilty had she stayed home just to be with me. But at the same time, I’d hardly seen her all day and I was feeling selfish. Not that it would have made any sense for her to have stayed with me anyway, since I was crabby and would sooner or later pass out.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">I can’t remember what we’re doing this morning, if anything. She was just getting to sleep as I was rising, so unless her alarm goes off I’m not waking her. I know we’re having dinner with her family, but I have forgotten what time. Probably early. It’s a good thing we have so little to prep. Perhaps I’ll have time for a nap before we go. One good thing about being a social isolationist by nature is that I won’t be fielding well-wishing holiday calls during naptime.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The idea of this blog still surprises me. I hold no grand hopes for its future; in fact, I strongly suspect absolutely nothing will come of it. I’ve not told anyone about it and only a few people know I’d even been considering it. I don’t think I will tell anyone, either. I’d like to just let it be and see what happens without my intervention.</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;">The idea of blogging in general seems unnatural to me, but at the same time appealing in its anonymity. Those who know me well and stumble upon this would not be challenged to identify me. So in that regard, even the anonymity is limited. But who else would be interested in reading my thoughts? In spending their time on the mundane things that eat up my time and attention? I’m curious.</div>Lymelandhttp://www.blogger.com/profile/06336697459855413407noreply@blogger.com0