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!
Showing posts with label Lyme Disease. Show all posts
Showing posts with label Lyme Disease. Show all posts
Thursday, January 12, 2012
Thursday, December 22, 2011
Carlton: The Gratitude Teacher
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.
Wednesday, June 29, 2011
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.
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.
Saturday, February 19, 2011
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.
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.
Monday, February 7, 2011
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.
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.
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