The Old Cynthia

It's been months since I've posted a blog on Writing Lyme. Time to update and share some good news!

A re-cap of my Lyme history (see back posts for more): I became very ill in summer of 2007 (extreme exhaustion/heat intolerance/cognitive issues/balance problems/shooting, stabbing, grabbling, tingling pains) and after seeing a slew of doctors, specialists and undergoing many tests, I was diagnosed with fibromyalgia. My then-primary care doctor gave me that label (through her assistant, on the telephone) with these words—and I quote: "Let's say it's fibromyalgia so your insurance company will pay for your Lyrica." Lyrica helped my nerve pains.

However, I got sicker and sicker. I was unable to work outside the house due to fatigue and cognitive issues. I stopped driving. I asked my doctor repeatedly about Lyme. She tried to placate me with "it's not Lyme" but she did do two blood tests for Lyme (both of which were negative). To her credit, she tested me extensively for MS.

I decided that I didn't want to just "say it was fibromyalgia" and began seeking alternative (i.e. holistic) treatment. I underwent more extensive Lyme testing. Some indicators were present, although not enough for the current CDC-approved test to be positive. I underwent treatment with shots of gamma globulin as my immune system readings were very low. I underwent chelation therapy for high levels of toxic metals detected in my blood.

I continued to spiral downward. I found a doctor closer to home (we'd been seeing one fours hours away) and within thirty days of our first extensive consultation, he diaganosed me with Lyme based on symptoms, risk factors and a CD-57 blood test.

My treatment (oral antibiotics) began in the fall of 2010. As is often the case, I got much worse before I started getting bettter. I had the typical Herxheimer reactions (all those Lyme buggers being killed off released toxins into my system, thus my symptoms became exaggerated). I was in bed for a month straight. I saw little to no progress for months. The oral antibiotics began kicking my butt (digestive issues/dental issues). My Lyme doctor presented us with the option of self-injected antibiotics in the form of intramuscular shots of Bicillin-LA. We agreed. A visiting nurse came to show me how to self-inject. The shots were extremely painful and at the optimal dose, I injected both legs every three days with 1.2 million units of the thick white stuff. The shots hurt. The legs hurt afterwards. It was terribly inconvenient to travel with this medicine as it had to be refrigerated.

But after fifteen months of treatment, I am finally done. I am "back" to my normal self—almost. If there is any Lyme left, my body seems to be fighting it. I know full well that the likelihood of a relapse is high, and if that happens, I will see my LLD (Lyme-literate doctor) again and probably go right back on Bicillin. I am left with some symptoms. I still tire easily. I still cannot tolerate heat. But I am a completely different person than I was a year ago—the old Cynthia is returning.

No full-circle story is without its irony, though. That doctor who labeled me with fibromyalgia dropped me as her patient because I saw a doctor whom she felt threatened by (in that I was getting better under his care). She saw me at my worst and she saw me after Lyme treatment. I attempted to discuss the Lyme diagnosis, the controversy surrounding dignosis and treatment options, and she put her hand up (as in "talk to the hand") and left the room. She still insisted it could not be Lyme (because I did not test positive) and that my Lyme doctor's treatment was too controversial. One day I got a knock at the door and a certified letter stating that she was no longer my doctor.

This is probably for the best. I  have found a primary care doctor closer to home—one who is whole-health conscious, admits he is not a Lyme expert, but is willing to work with my Lyme doc if necessary.

I am optimistic about the future; I am glad I educated myself about Lyme; I am glad I did not give up, and I hope others who are struggling with this bastard of a disease can glean a bit of hope from my story. I am forever indebted to my LLD for my diagnosis, treatment and recovery, and to my husband for his unending support.

For Lyme-disease education, I highly recommend the documentary Under Our Skin (Open Eye Pictures, 2008)
http://www.underourskin.com

and the book Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim (BioMed Publishing Group, 2009)
http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801

I will continue to update this blog with info on Lyme. Those outdated, exclusive CDC guidelines for diagnosis are being questioned (thank goodness) and much work is being done on the research front. If you think you have Lyme, keep going until you get answers. Do not give up. If you have Lyme, have hope—because there IS hope.

The Disability Question/New Groundbreaking Lyme Book

Earlier this week, I saw a new neurologist. We hit it off right away (that hardly EVER happens with neurologists!). This is a neurologist who is completely open to the topic and diagnosis of chronic Lyme disease*. This is a neurologist who told me she could see my illness. While my Lyme symptoms are technically invisible, there are a few discerning people who can see them in me—in the exhaustion written on my face, in my struggle at times to speak/think with clarity. She noted that while my eyes are bright (lively, cheerful), she sees that I fight to keep going. She is a rare gem indeed. As she was going over my history and my neurological symptoms related to Lyme, she said offhandedly, "So I assume you are disabled from the State?" In her work, she treats many Veterans who are truly disabled.

Loved ones with all good intentions have suggested that I look into becoming declared disabled (I assume so that I can collect money). They see the difficulties I face. They see the difficulties my husband faces as he tackles many of our household chores, and as he drives his exhausted Miss Daisy (that would be me) arouind, as he works from home which, in itself, is a 24/7 job.

My reply to my neurologist was, "But I don't want to be disabled." Alone, that is not a good enough reason—I don't want Lyme; I don't want to weigh twenty pounds more than I should weigh; I don't want to ask for help when I need it; I don't want lots of things! But I quickly added: "I can work. I work from home. I can't teach the night classes I used to teach, but I can work. I ...."—explaining to her what it is that I do.

I publish a poetry magazine. I edit books. I take photographs and sell greeting cards with my nature photographs on them. I do whatever it is I can do...around my Lyme disease, according to my physical and cognitive limitations.

I don't begrudge anyone disability who needs it. That's what it is for. My first comment to my husband after our meeting with the neurologist was, "My father was disabled." And he was. As described in my last post, my father was disabled with polio to the extent of not being able to use his arms—or breathe on his own. He collected disability. But he also learned how to write by holding a pen in his mouth. And he taught me never to take what wasn't mine and never to take what I didn't need. I may need that kind of help someday. I could even need it tomorrow. But so many, many people need it today.

And I am recovering. I have cyclical backslides (a part of living with Lyme) but overall, I am becoming my old self. On the good days, I feel it, see it, taste it. Until the old self is back to stay, I'm going to try and focus on my abilities and not my inabilities.


*Speaking of doctors who are open to discussing and treating chronic Lyme disease, check out this newly-released book by Burton A. Waisbren Sr. MD FACP FIDSA. Dr. Waisbren, Sr. is a founding member of the ISDA (the prestigious medical group that looks down on Lyme-literate doctors who treat chronic Lyme and who diagnose Lyme based on criteria other than the current unreliable, exclusionary guidelines). This book will lend much credence to our cause!

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.