Carlton: The Gratitude Teacher

Twelve years ago today, I lost my Dad. While it is true that we had our differences, we learned to live with those differences and bridge those gaps in the end.

Here is a priceless photo of him at eleven years of age. It's priceless simply because I possess a photo of my father at age eleven. But more priceless is how it came to be in my possession and the inscription on the back. I don't know how old I was when I decided I wanted a wallet-size photo of him. It was sometime in my late childhood—I may have been eight years old, maybe ten. I dug through family photos and came across this one. Then I asked him to autograph it for me. He put a green Bic pen in his mouth, and from his hospital table (that was tall enough to roll over the special bed he needed to breathe while sleeping), he had me hold onto the photo to keep it in place, and he signed it. "To Cindy from Daddy."

I've kept it always. I will keep it always. It is still in my wallet, and it has been in my dozens of different wallets over the years. Thinking about him on the anniversary of his death is a good time to reflect on what his example taught me about gratitude.

The reason my father wrote with that pen in his mouth is that he had had polio. He contracted polio in 1955, the peak of the epidemic that lasted from the 1940s into the 50s, killing hundreds of thousands and paralyzing (by various degrees) those who survived. At the time, he was newly married, a body-builder, and a tree surgeon. It was the height of the hurricane season and he was working long, feverish days to clean up tree wreckage in Southeastern Massachusetts. He, my mother and my then one-year old sister lived in a city apartment building, on the sweltering third-floor. Two polio vaccines had been developed at the time, but none was widely available or used until the early 1960's.

My father went from his happy newlywed, Superman-like days to being hospitalized in an iron lung for almost two years. Doctors did not predict his survival. The polio wards were awful places to say the least, and many horror stories come out of them. I remember my father talking of doctors visiting a roomful of patients and openly betting with other physicians about patients' "making it."

When he returned home, he was a shell of his former self. He weighed under 100 pounds (and stayed that way for the rest of his life). He needed that special bed to push air in and out of his lungs at night. During the day he consciously had to remind himself to breathe. He could walk—his legs still strong, but he could not use his arms. They hung limply and he crossed them together in front of him. He had slight movement in a few fingers which enabled him to lift lightweight items. For example, my mother left beverages for him in the refrigerator and he opened the refrigerator with his foot, then used those fingers and a thumb to grasp hold of the drink, and then he placed it in a special drink holder that was attached to his wheelchair. He sat in the wheelchair and bent down to drink with a straw.

He learned to type with his feet, write with that Bic pen in his mouth (his pens were all chewed up at the tips), pick up the phone with his foot (then place it on the floor and bend down on his knees to talk). Basically, if it could be done, he would do it. He had to have his meals fed to him. He needed help with toileting at times and he had to be bathed and dressed. But he got out, he walked, and devoted his life to a life of study and helping others, and he taught his daughters everything he knew.

Most of all, though, he devoted his life to a life of gratitude. I heard not one complaint—ever—uttered from his mouth. Of course he had faults—he got endless joy out of nitpicking my mother—but how could one deny him any bit of joy (even if at my mother's expense)? And if I think of the things he could not do—basic things we take for granted—it is in those I learn the most from him. He could not scratch an itch, control the temperature of food being put in his mouth, pick himself up from a fall, reach something on a shelf.

What does all this have to do with a blog about Lyme disease? This: When I feel sorry for myself, I just think of him. I might not be able to drive as much as I want to, do as much as I want, think or speak as clearly as I'd like to, but I can scratch an itch, control the temperature of food going into my mouth, pick myself up from a fall, reach things on a shelf. And a hundred other things he could not. There is not one reason on this earth for me to complain. Yes, it is important that I acknowledge my feelings, but then I must get on with it and get on with my recovery. For there has been great strides in my recovery, and unlike my father's illness, mine can be recovered from. 

Here's to you, Carlton. With gratitude.

One Year Later: Especially Grateful

For those of you who've read my past Lyme blog posts, much of this will be repetition. It is a re-cap. It is, truly, an expression of thanks.

Last year right before Thanksgiving, I was diagnosed with Lyme disease. Thanksgiving night, I began treatment. As predicted, I got much worse before I got any better, as the insidious little buggers fought against the antibiotics and all my symptoms became exponentially exaggerated. For years, the buggers (spirochetes) had been comfortable having me as host--happy to thrive, multiply and wreak systemic havoc.

After fits and starts to find the right course of treatment, I noticed larger and larger strides in my recovery. I finally had hope. After one year, I am still on treatment (two 21-gauge needles attached to a vial of thick, white--expensive--self-injected, self-paid Bicillin every three days) but my life has come 180. 180 as in I now function at about half of my former self's capacity. I will be on medication until those buggers are dead or inactive.

I am especially grateful for the doctor who diagnosed me (we searched for a diagnosis for over three years prior to meeting him; he diagnosed me within one month). He treats me with respect and dignity. He is the expert, but I am in control of decisions around my recovery.

I am especially grateful for my husband who has been my driver, cook, errand-runner, support system and nurse. I don't know anyone with his steadfast patience and commitment. I wouldn't have made it without him.

I am especially grateful to the sons and daughters-in-love who support me and who go out of their ways to brighten my days. And to my grandbabies who are the gleaming rainbows at the end of this tunnel. To extended family for your love.

I am especially grateful for the best of best friends, for friends who are angels, for old friends and new. To my three furry-purries who instinctively know when I am in need of comfort.

I am especially grateful for an Assistant Editor/friend who picks up where I am forced to leave off to keep my poetry ventures on-track. And to the countless poet/friends who hold me up with their myriad kindnesses.

To Maine--where I found my soul--and that I am blessed to be able to work from my home in the Maine woods.

To ILADS (International Lyme and Associated Diseases Society) for their continued battle against outdated, exclusionary "conventional" wisdom.

http://www.ilads.org/media/ilads_jumbotron.php

To Under Our Skin (the documentary) for the courage to inform, lead, and press on.

http://www.underourskin.com

This is an especially thankful Thanksgiving.

With a Heart For Any Fate

As a writer, I have many favorite quotes, the following from Maine native and famed poet Henry Wadsworth Longfellow (pictured) high on my list: Let us, then, be up and doing, with a heart for any fate; still achieving, still pursuing, learn to labor and to wait.

I'm not very good at waiting. But waiting is part of Lyme. I waited over three years to find the right doctor for me; waited a bit more for the right diagnosis; longer to find the right treatment plan (and even after finding IT, found that IT could need tweaking at any moment); waited out a couple of awful months of feeling even worse than pre-diagnosis from what's known as the Herxheimer reaction (as the medicine started killing of Lyme and releasing its toxins after Lyme had grown very comfortable with me as its host); waited some more to be able to finally say I was cautiously, optimistically feeling better overall.

And soon, I will wait again. For my insurance company to give me their final decision on covering my medication. As you may know from past blog entries, they denied coverage for the medication that IS healing me—first they denied my pharmacy's request, and then, my verbal appeal. I have 180 days (tick, tick, tick, no pun intended) altogether from the date of their original appeal to make my last-ditch attempt at a written appeal. I'm certain that part of their strategy is to tire me out, and to a certain extent, they have done a good job. Because I have Lyme, I don't have any extra energy (physical or otherwise) to begin with (certainly not always able to be "up and doing"!). The task of a last-ditch effort seems overwhelming. Get all my ducks in a row; present a compelling case; muddle through the legalese of my insurance company's positions; muddle through other such cases and medical law. For the last two months, I have given myself some much-needed time off from this insurance battle (as we continue to pay out of pocket). But it's time to labor, time to pursue, time to achieve.

At the end of the day, I MUST have a heart for any fate. Whatever my insurance company decides will not deter me from continuing treatment. It's not easy now and it will be even more of a hardship if we must continue to pay out of pocket. But there's always another favorite literary quote to pull out of one's hat. This time it's Emily Dickinson, who said, 'Hope' is the thing with feathers. Who would have guessed that some long-dead (and very different) New England poets would be there to spur me on?

Fits & Starts of an Invisible Disease

I'm a "list" person. Figure it out. Write it down. Do it. Cross it off. Move on to the the next list, the next plan. I used to have my days planned out in writing in 15-minute intervals. Well, that's not the way it happens with recovery from Lyme. Not only is each day full of new challenges, each hour can be full of new challenges. Some days and hours are full of hurdles I thought I already surmounted! All this forces someone like me to contrive a new plan. But I'm learning: Soon it becomes evident that that plan won't work, either. So I make a new one. And then another new one.

But what I need to learn is this: Although I'm in control of decisions around how my Lyme will be treated and how I will handle my disease, I'm not in control of how my body is going to react to those decisions. I'm not in control of that in general—not for twenty-four hours, not for one second. So I change my mind, make new plans, write new lists, and recover from Lyme in fits and starts.

With my heat intolerance, I can't predict whether five minutes—or thirty minutes—in the sun (and I don't mean tanning!—I mean just being outside for whatever reasons normal people go outside) will do me in. I can't predict the temperature at which five minutes (or thirty minutes) in the sun will do me in. Two days ago, it seemed that at 73 degrees, just five minutes in the sun (walking at a normal pace) did me in. For thirty-six hours. I had symptom flare-ups (extreme stabbing/burning/grabbing pains) and the Great Wall of Exhaustion. My digestive system went haywire. Today, I seem (she says with great caution) to be snapping out of it. Two months ago, it may have taken a week for me to snap out of it. Six months ago, it may have taken a month.

So, overall, I am still getting better. BUT the danger is in the temptation to make a prediction based on my experience of two days ago—solely because what happened two days ago may not happen again. Or, I may go back into the "funk" later on today. Or next week. And one day, maybe not at all (she says with great optimism). But in the meantime, I am one of hundreds of thousands of individuals with an invisible illness (and some have more than one invisible illness). I don't look sick (only those who know me very, very well can look at me and see visually-minute changes and guess that I might be feeling badly on a given day). If one does not look sick, how can they actually BE sick? So (with all good intentions) reason the masses.

And so, I continue on, strong in the faith that my chosen treatment plan is working and will continue to work. If it stops working, I switch to another plan. And now, it's time to load myself up with my medicine and my morning vitamins. A rather daunting regimen as you can see, but for the moment, it's the best plan I've got. Upper left, moving clockwise: morning vitamins; 2.4 million units of Bicillin L-A with equipment* needed to inject said med into my thigh muscles; Lidocaine ointment to numb said thigh muscle; Lidoderm patch to stick to thigh after injection. Middle: assorted Band-Aids as needed; alcohol swabs for sterilizing injection site. Invisible illness made real. On "break" days my nurse-neighbor comes over and injects my med into another (unmentionable) muscle to give my legs a break. She is teaching my hero-husband to give me my injections but he's not quite there yet. He's going to practice on an orange first.

After my taking my medicine and vitamins: I'll get to my daily list of tasks—the one I still can't help but write—even though how much of it gets done is completely dependent on what my body has to say.



*All injection equipment is immediately medically and irrevocably disposed of after use.

Must-See Documentary, Insurance Woes and Before I Forget: That Grass

Before I forget, I'm going to roll in the grass a bit (metaphorically). In my last post, I mentioned the green grass you see on my blog page. The question is, Why on earth would a Lyme patient choose a blog background that highlights the prime habitat for her nemesis—those disgusting ticks from which she acquired Lyme disease in the first place? And the answer is, ticks are the enemy, not the grass. Not the woods; not Mother Nature. I chose the grassy background to emphasize that I will not let ticks intimidate me. I will not stay inside my house because they are out there. I will not stop hiking (for where else can I find peace and serenity and views like this one from a recent short hike in New Hampshire?).

I will not stop walking in my beloved woods in rural Maine.

I WILL bend low in the grass when I want to—perhaps to take a photograph of a lovely flower for my photo greeting cards http://www.encirclepub.com/com/gnstore. But I WILL cover my legs and arms. I WILL wear a hat. I WILL check for ticks when I come inside. I WILL use insect repellent as necessary. And I WILL get out there as much as my Lyme symptoms will allow.

Onto other nemeses: insurance companies. When I was first diagnosed with Lyme, my insurance company paid (without question) for the oral antibiotics I was prescribed. No red tape; no hassles, no denials. They paid for a few months of oral antibiotics (no red tape; no hassles, no denials). My physician wrote those prescriptions specifically for Lyme disease. After reading many horror stories about insurance companies denying Lyme treatment, frankly I was very surprised that they did cover my medication and I counted my blessings. Fast forward to just a couple of months ago, when I could no longer physically tolerate the oral antibiotics and I was prescribed the injections of Bicillin LA. Except for side effects that are tolerable, I am now up to the target dose (one shot in each leg every three days, or 2.4 million units every three days). And guess what??? I am FINALLY getting better. After more than three years of driving rarely because of my fatigue, I am driving more often. When the fatigue wall comes down, it typically comes down at 6 pm instead of 2 pm. My burning and stabbing pains are almost gone. (My cognitive issues and heat intolerance are lingering.)

But I AM GETTING BETTER! I know I will have relapses as more Lyme dies off in my body in cycles. I cannot predict from one day to the next how my symptoms will be. But just recently, I drove 240 miles to visit my children and grandchildren (a HUGE step). My work days are longer. And so what does my insurance company do? They deny coverage for the Bicillin. Finally, our very own insurance company nightmare.

My pharmacy appealed their decision and lost. Subsequently, I verbally appealed (pending now). If I lose my verbal appeal, I will do a written appeal. Meanwhile, we are paying over $1,200 out of pocket to receive the medicine that is helping me get well. I am lucky that we found a way to come up with the money. But it will be month-to-month if I am denied coverage completely. Who has an extra $1,200 a month? I had no documents in front of me when I made my verbal appeal by telephone. I made it on a cognitively-challenged day. I told them that I assumed they were denying me coverage based on the fact that they don't recognize my diagnostic criteria and that they do not cover Lyme medication for more than thirty days or so. Based on those assumptions, my three main points were: 1) they already "recognized" my diagnosis by paying for oral medications for Lyme; 2) they already were willing to pay oral antibiotics for Lyme treatment for longer than thirty days and 3) I am recovering—so wouldn't it be in their best interest to have me well (duh)? We'll see what happens. As in going outdoors, I won't give up.

Now onto the must-see documentary. If you have Lyme, think you have Lyme, love or know someone who has Lyme, you MUST see "Under Our Skin." From the film's website: "Unfolding like a real-life thriller, “Under Our Skin” exposes the hidden epidemic of Lyme disease and reveals how our troubled health care system is failing to address one of the most serious and mysterious illnesses of our time." Go to the website to find out when it is showing in your area. Better yet, buy the DVD and share it. The film opened my eyes to many sides of the Lyme controversy that I knew a little about, but now I feel much more educated. It presents both sides of the controversy. Go to: http://www.underourskin.com

So, get out there in Mother Nature! And don't (ever) give up fighting for your medical rights. We're going to get better.

A Shot in the Leg and, What's Up With That Grass?

In my last blog, I rolled out the welcome mat for my new Lyme treatment—deep intramuscular injections of Bicillin L-A every three days. I'm tolerating the injections now—a little over a month into starting them, although, I am only at half the target dose. Since I'm prone to getting migraines from a whole host of substances (concentrated soy—as in soy flour and soy protein; coconut—but not coconut oil; chicory root; a seizure medication called Trileptal; kava-kava—and a half dozen or so more), my prudent doctor started me on half the optimal dose. To muddle up a famous quote, with Lyme, the only thing you can predict is unpredictability itself. The unpredictability with my Bicillin L-A treatment came in the form of headaches (but not migraines), ear-ringing and digestive issues. Although none of those are uncommon side effects, I just didn't expect to have those side effects from a penicillin drug.

What's an anxious-to-get-better Lyme patient to do? Drop the dose down. Experiment. I cut the dose in half for a while and fell back on an old head-off-a-headache solution I learned about from a wise neurologist. Now, on my injection days, I drink two cups of coffee and down four ibuprofen tablets. Coffee's not the best thing for those of us with Lyme, but I decided that the benefits outweigh the negative in this case. Four ibuprofen is a lot too (800 mg), but for serious pain, that dose is routinely prescribed. I gradually upped my Bicillin L-A. Now, I am tolerating the whole (half-target) dose. I don't much care for the tinnitus (ear ringing)—it sounds much of the time as if a thousand crickets are in my ears. It may be temporary; it may be permanent. But I'd rather get used to a chorus of crickets than live with Lyme. I am still working on balancing the digestive issues. But I'm getting there; I'm progressing, and some more overall improvements have been made. Now that I'm not sporting a foot cast, I am out walking a bit in the woods. The exercise is good in many ways (of course), but it plays a key role in helping the digestive tract move along.

I have periods of time (usually around a week) of sliding back with symptom flare-ups and all I can do is remind myself that my medicine must be working. More Lyme is dying off in my body and as it does so, its toxins are released, causing symptoms to go haywire for a time. If the time between flare-ups gradually lengthens, then I will be jumping for joy. But with caution. Remembering that with Lyme, no surety is for sure and no magic pill is to be found. The protocol for each patient must be customized and adjusted along the way. Here's to ramping up to the full target dose. All this skirts around the issue that by most accounts (and I would agree), deep intramuscular Bicillin L-A injections are one of the most painful injections you might receive (or, in this case, inject yourself). But again, having one painful leg for three days and then switching legs for the next shot means that I can adjust my sleeping position as needed, or when taking photos in the woods, I can use the least-sore leg to move about if I bend down to shoot (no pun intended) a picture of a flower. It's the positive outweighing the negative again.

Speaking of getting out in the woods, did I mention green grass? Yes, I did. I refer to the background of green grass you see on my blog page (prime habitat for those nasty ticks!). And I promise more on that next time around.

New Treatment: Giddyup!

A little bit ago on this blog, I bemoaned the side effects of my first Lyme treatment protocol. After experiencing those unsavory side effects, together with my doctor, I made the decision to stop treatment to let my system clear out—most notably a) my digestive system, and b) whatever it was that had begun to discolor my teeth. A little over a month went by and things have cleared up.

Due to the time off of treatment, however, I've experienced a backslide in symptoms. My fatigue (probably the Lyme patient's biggest nemesis) has returned; the stabbing and burning pains have returned—not as bad as before initial treatment, but distressingly so. The "wall" (of fatigue, and with it, frustration) comes down earlier and earlier in the day. The burning pains feel like I'm constantly being sunburned. The stabbing is my favorite symptom (everything is relative!) as it comes and goes so quickly.

With the arrival of spring comes a new plan of action. Instead of two types of oral antibiotics which caused the aforementioned side effects, we opted for injections of Bicillin LA. No problem, I thought! After all, I wanted to be a nurse, needles don't bother me, and I actually wanted to be a phlebotomist! I give myself injections of Imitrex for migraines! Jump ahead to: Here comes visiting nurse to show me how to do the injections. I almost fainted. I said, I could cross-stitch with that needle! But she showed me how to use it, and although it really hurt for three days (it has to be done in the large muscle in the thigh), it is short-term pain in my viewpoint. In that I'll get better and better at it, and I only have to have to stab myself every three days, so one leg may hurt for three days, but then it gets a break! And we are treating the Lyme with a protocol that is showing promising results. And most importantly, this time period in my life is going to seem short-term when I am well and look back on it.

When I realized I was going to have to go off of the first treatment plan, I was fairly distraught. I thought, This is it, I have to stop treatment. I'll never get my life back. But there is always hope, a new plan—a different plan—a course of action. Giddyup!

Eat Better? Sure! But Cook???

We all know that one of the biggest symptoms/problems for the Lyme patient is fatigue. And I don't mean, I need a nap fatigue. I mean, I seriously can't think, and may, in fact, die at any moment from this fatigue fatigue (seriously).

And, we've all heard You are what you eat. Hippocrates said, “Our food should be our medicine and our medicine should be our food.” Over two thousand years later, Thomas Edison put his own spin on it: “The doctor of the future will no longer treat the human frame with drugs, but rather will cure and prevent disease with nutrition.”

And, most of us Lyme patients have heard of eating so as to reduce inflammatory symptoms—inflammation simply meaning our symptoms acting up. There are many different versions of this diet and my doctor has thoughtfully given me a simple chart of foods that tend to exacerbate inflammation in one column, and foods that can help reduce inflammation in another column.

So what's the brain-fogged Lyme-fatigued patient to do (aside from referring to such a chart)? If we are what we eat and we want to recover, it seems we have to pay close attention to our nutrition (as well as to whatever other treatment options we've elected).

I'm not a breakfast person. It's easy for me to down a few supplements (vitamins and probiotics) and a couple of cups of caffeine-containing beverages (bad, bad bad!) in the morning, get behind my computer and think every so often, I'm kind of hungry. That progresses to I'm starving! anywhere from eleven am to two pm. Some days I do better than others. Some days I make myself a bowl of oatmeal with fruit and nuts. Some days for lunch I have turkey and fruit (and maybe more nuts). Some days I remember to drink decaf green tea instead of that coffee. But many days, lunch is bought from the General Store (yes, I live in rural Maine). Or, famished, I start grabbing anything in sight. Some days I attempt to drink water. Some days I forget. My doctor has stressed the importance of drinking enough water. "Pee your way to better health," he actually said, as well as giving me a target number: drink half of my body weight in ounces of water each day. (If nothing else, that's incentive to lose weight: less ounces of water to drink per day.)

Bad writer I'm being, for in the last paragraph I failed to address its opening question. What are we to do? I've found some new tools. One is to make use of anyone living in your home and coerce them into helping you cook a good meal. For me, that person is my husband and he's usually (fairly) easily coerced. Secondly, cook a good meal during the part of the day when you usually are the least exhausted (for me, it's mid-morning/mid-day—although Lyme makes it difficult to predict). And lastly, find some new good-for-you recipes! If you are lucky enough to have someone to help you cook, you can undertake slightly complicated recipes. If you find yourself cooking alone, go for the easier recipes so your fatigue doesn't set in fast and furious in the middle of the prep or cooking time.

Your Lyme literate doctor can provide some good nutritional guidelines. And treat yourself to a Lyme cookbook (yes, there is such a thing!). Use recipes you will enjoy. Don't use recipes where the mere chopping of ingredients will send you to bed for days. Recently I've discovered Recipes for Repair: A Lyme Disease Cookbook. Frankly, I'm too tired in this stage of my disease to worry about its symbols (gluten-free; dairy-free; egg free, etc...) and its phases (in a nutshell, once you are feeling better, you can progress to different foods). But I know if I cook a recipe from this cookbook (no matter which recipe I decide on), it will be light years better for me than mozzarella sticks or fried buffalo chicken or fried haddock from the General Store (although they make all three very, very tasty—and we won't talk about their homemade brownies). I'll paste the link from Amazon here:

http://www.amazon.com/Recipes-Repair-Lyme-Disease-Cookbook/dp/0983097704/ref=sr_1_1?ie=UTF8&qid=1300485581&sr=8-1

Tonight, I'll try to remember to reach for an organic green apple with some almond butter when I'm really wanting ice cream instead.

When I'm not so tired I'll coerce my husband into helping me make some of those awesome-looking goodies in the Lyme Disease Cookbook!

Notes on Unpredictability: Jack-O-'Lantern Grammie, "Sit Up and Take Your Medicine!" (As Long as You're Hungry), and The Agony of Too Little (or Too Much) Fiber

There's somewhere I want to be today. Somewhere I committed to being today (shortly before the Lyme diagnosis). But alas, I'm writing this blog from the comfort of my bed. I get to watch the occasional snowflake meandering by my window while I sip blueberry tea to my cats' snoring-chorus. I also get to watch red squirrels go (happily) in and out of my shed. But I'd rather be at today's meeting of the Maine Poets Society.

I'm not there because of the unpredictability that has invaded my days and nights. Overall, steadily, I am improving ever so snail-paced slowly (I'm grateful for that). But Lyme patients can't PLAN on feeling one way or another on a particular day. Therefore, plans are always fluid. After embarking on a course of antibiotic therapy (combined with moving towards better nutrition, rest as needed, and a few vitamins/minerals), I seemed to be tolerating the combination. I worked up to this optimal dosing over the course of the last two and a half months. Monthly blood-monitoring tests: fine. Side effects: minimal (i.e. constipation—I could try to find a better word for it, but this is a Lyme blog; unpleasant is unpleasant).

Over the course of a week or so, I began to notice some discoloration of my teeth. At first, I thought I hadn't brushed/flossed/Reached/Waterpiked well enough and I'd missed a bit of a prune (which I'd eaten for you-know-what). I re-flossed, re-Reached, re-Waterpiked. Took a quick look and figured I'd gotten the prune out. I was getting ready to go out for lunch on Valentine's Day (I'd love to have said dinner on Valentine's Day, but I don't go out at night yet due to the overwhelming fatigue). There it was again (or, still). I grabbed my magnifying mirror and checked. Definitely a tooth was turning dark. I CANNOT BE JACK-O-'LANTERN GRAMMIE! My mind spun back to the laundry list of possible side effects listed on my antibiotic handouts. Tooth discoloration. I'd seen it mentioned somewhere. I called my doctor and he advised that I stop one of the meds (the one most likely to cause tooth discoloration). I see him next week, at which point we will determine where to go from here. If we make a substitution, we will have to attempt to achieve a fine working balance again. We will have to find a substitute that won't give me migraines (as did two others we previously tried and myriad other substances). We'll get to start almost from square one, navigating a new and unpredictable course.

There will be new instructions that come with a new antibiotic, new possible side effects. I've gotten quite used to the routine of taking one of my antibiotics while sitting up (as lying prone is apt to cause vertigo) and on an empty stomach. It's given a whole new set of things to think about. If I take an afternoon nap, I must wake up in order to eat dinner early enough that my stomach will be empty at bedtime. If I sleep late I have to wait two hours after taking my medicine to eat breakfast, no matter how hungry I might be. If we go out for breakfast, same deal. I'm fortunate here that I'm not a big breakfast eater and it's usually no problem.

And that just leaves us with one issue: how antibiotics can effect regularity. No day of fun can be planned if I need to be just a few feet away from my bathroom at any given moment (if, by chance, the combination of fiber I gambled on is working). On the other hand, any fun to be had is thwarted if I'm not regular. The cramping. The agony. Right now it seems to be one way or the other and I have not found a solution that is practical. We'll see what new challenges are to be had with a medication change next week. Ones I haven't even thought of yet, I'm sure.

But I vowed to write this out ("write Lyme away") when I began this blog. And that's what I'm going to keep doing. By addressing the small battles lost, and the small battles won every day. Every day that I (and hundreds of thousands of others) choose to get up and look ahead (even if we're not where we want to be that day) towards a new day in making recovery happen.

Charts & Graphs & Symptom Progress

About a month after I began treatment for Lyme Disease (and a little over a month ago), I started keeping a graph to track my progress (improvement of my symptoms). I began with a piece of graph paper, assigning numbers to indicate how I was feeling. The numbers go from 0–25. 0 indicates "The Worst Day Ever." 25 indicates "Like My Old Self Again." In between are descriptions such as "Very Good Day/Slightly Symptomatic" and "Bad Day/Symptoms Severe." I have not had a 25 day. Fortunately, I have not had a 0 day. But I have had an 18. And I have had a 2.

The graph paper, pencil, ruler and penciled-in dots soon became tedious. Lucky for me I have a son who gets paid to create and analyze financial charts. I asked him if he would make me a rudimentary graph and I gave him the basic information. He created one for me in Microsoft Excel. I must point out that he made it easy enough for a spatially/math challenged person like me to work with. (I am still bitter that my math grade in college prevented me from graduating with Honors. I had a 4.0 in my major, darn it! The math instructor tried to help me. The math tutor tried to help me. I really tried to help me. I'll tell the entire sordid story if I don't stop now.) Back to the Excel graph. I just type numbers in a column. The graph automatically shows up. Voila! I can see my progress. I can see if I'm backsliding.

I learned to never assign a number for one day until the next. That's because some of my worst symptoms can occur after I've gone to bed or to rest in bed for the night. I've been tempted to do my chart for the day around dinner time—especially if I'm having a fairly good day up to that point. But I learned the hard way. Up until dinner time is is never an accurate indicator of my day. My stabbing/burning pains can get worse at night. My muscle pains can get worse at night. So each morning I assign a number for the previous day.

The purpose of the graph is to see my overall progress. A psychological tool. If I can see my progress on a piece of paper, I can hold onto the hope that I will eventually move into the 20-25 range. A factual tool. I can use it when my doctor asks me how I've been (instead of replying in general terms such as "awful" or "better!" I can show him). A chart such as this should prove handy for a brain-fogged Lyme patient such as me. I'm certain that if any of you are even slightly spatially/math/or even computer challenged, someone you know could create a similar graph for you. But if not, the graph paper, pencil and ruler will get you the same results. Visual clarity regarding your progress. And, I hope—hope.

Why Another Lyme Blog?

There are hundreds if not thousands of Lyme blogs. So why another one (from me)? Because I'm a writer. Because I have Lyme. Because I write. Because I can't not write.

I don't have any special medical certification, although at one point (or another) in my life, I've been daughter to handicapped parents, nurse's aide, naval air station pharmacy technician's girlfriend, mother, and neighbor of an emergency room head nurse. I've been sister-in-law to a nurse. But none of the aforementioned comes with a degree (although I do have a degree in writing). My now-grown but then-teenage son once asked me why I knew so much about medications. It was because of his youngest brother, I told him, who had had asthma as a baby. As soon as the doctor began trying him on various inhalers and steroids, I picked up a copy of a drug reference guide. Having one on hand served me well as a mother. It serves me well today.

But there is no single book for Lyme. When you enter the world of Lyme as a patient or a loved one of a patient, you are faced with three options: 1) jump into a world of convoluted craziness, trying to sort out who/what is correct on this hot-topic/much-debated/controversial (even sometimes-taboo if you insert the word "chronic" before "Lyme") subject; 2) stick your head in the sand and hope it will go away even though we know it won't; and, my suggestion, 3) trust one good Lyme-literate doctor, shore yourself up with the best support system you can muster, delve into Lyme information/resources s l o w l y (ever so slowly) so as not to overwhelm yourself (since brain fog is common in Lyme patients, we are overwhelmed and often frustrated enough by the time we are diagnosed).

The words "frustrated" and "overwhelmed" aren't even adequate terms in the world of the Lyme patient.  Never-ending. Hopelessness. Exhaustion. (I know what it's like—thanks to Lyme—to feel as if I am going to die from exhaustion. Sometimes from a bit of physical exertion. Sometimes from a bit of mental exertion. Sometimes from getting out of bed.)

The word "unbearable" also comes to mind. Up until six-seven years ago, I was a do-it-all-er. I published a poetry journal (still do by the skin of my teeth and the support of a good Assistant Editor); attended and organized poetry events; went to college part-time; zipped 240 miles up and down Route 95 each week/every other week from Massachusetts (where my grown children live) to Maine (where we had moved) and vice-versa; hiked; snowshoed; cross-stitched—and often said, "Now what?". It is unbearable sometimes when I think of myself in those terms. The Cynthia That Was. Since moving to Maine, I have had three grandchildren. Of course, they are, like all grandchildren, the cutest children in the universe. They are blessings. They are miracles. But I can't zip down to see them. I can't drive (too fatigued/don't want to kill anyone). I (and this hurts the most) can't be more active in thier lives. I am the Grammie who Comes and Goes (not because I live in Maine, but because I'm too tired to visit longer than a few hours). Yes, Grammie does bring presents, and I'm sure they enjoy that. But I want to be the Grammie that zips down there in my Jeep and takes them out. For an ice cream. To the playground. Maybe surprise them with an unexpected visit! Perhaps babysit late into the evening hours so my sons and their wives can have a night out on the town. But I'm the one being put to bed early. And when I'm extremely tired, I'm the one who is having her food cut up for her in small pieces. I want Cynthia back and I want to be a Real Involved Grammie.

I will get me back and I will be the Grammie I envision. Even as I look out longingly at the snow falling softly this Sunday morning (longingly because I WANT TO BE OUT SNOWSHOEING IN IT), I have hope. Because I have the good Lyme-literate doctor I mentioned above. Because I have a husband who has not only supported me and taken over practically every single chore I used to be capable of doing, but has cut up my food in small pieces as mentioned above. Because I'm in charge of my Lyme recovery, because I'm taking it slow.

So I throw my hat in the Lyme-blog ring. For no other reason than to write it out. Write it away.