Tag Archives: lyme disease

My Brain on Lyme

Lyme and the Brain December 7, 2012 Comments: 15
Lame brain, Jello brain... lyme brain. Credit: skpy's Flickr stream

Lame brain, Jello brain… Lyme brain.
Credit: skpy’s Flickr stream

There was a time when I thought Lyme disease meant a fever with other flu-like symptoms and a bull’s-eye rash lasting maybe a few weeks. Even when I read that these infections can cause problems with cognition, I didn’t really get it.

Early on as my mind faltered, I thought, “Damn, it’s really happening, I’m getting older and my brain just isn’t working like it used to.” Then I figured, “Wow, the pain and fatigue from this illness are really affecting my ability to think.”

My teenaged son would look at me like I was crazy when I’d forget something we were supposed to do together. I took him to the dentist on the wrong day, even though I looked at the appointment right there on the kitchen calendar a dozen times. On some days, my brain just could not take in information correctly.

I’d blank out on the names of long-time colleagues, or struggle to put together copy for an assignment that should have been easy after many years of writing professionally.

I’d turned 50. I thought the trouble was aging. Turns out it was my brain on Lyme. Continue reading →

No Whining

Mental Health, Staying Positive December 5, 2012 Comments: 4
Well, maybe just a little.

Well, maybe just a little.

Today everyone at my office is getting ready for the holiday party. I can just see them all, arriving in the kitchen in a flurry to stuff the fridge with their pot-luck contributions for later this afternoon.

I talked to Sonya on the phone last night while she made bread pudding. Charlotte can always be counted on for a gourmet surprise. I, however, will not be there with my hot buffalo chicken dip complimented in years past. I’m into my third month of being unable to go to work.

I know I should avoid whining, but  I’m going to embrace it and indulge in a little pity party. Then I’ll get on with my day. I decided to follow this approach after seeing a cancer patient interviewed on a t.v. talk show (yes, I watch talk shows these days, another lyme-inspired low). Continue reading →

Sometimes You Just Have to Laugh

Humor, Mental Health, Staying Positive December 4, 2012 Comments: 2

Last winter, housebound and often in bed, I watched the video above many times every day. Who knows why it makes me laugh out loud—though I will admit, dogs and food rank as two of my favorite things.

At any rate, more than 123 million YouTube views say I am not alone. I am pretty sure I accounted for a healthy portion of that number.

Let me just say that it’s a downer struggling to recover from a disease that affects your mind, your body, your family life, your career, and your bank account. Sometimes you just have to look to humor to get by.

To my daily task list (swallow pills, infuse IV drugs, inject blood thinner, follow steps to detox, rest, exercise (baby steps), rest some more, and eat loads of vitamin-rich food), I have added: laugh.

Continue reading →

An Encounter a Day

Battling Isolation, Staying Positive December 1, 2012 Leave a comment

Mo says, “Time to go out and greet the neighbors!”

I woke up this morning gripped firmly in the vise of depression. The minute I opened my eyes, I felt the weight of negative thinking pressing hard on me: “I will never again have my life back as I knew it.”

Sure, since my total relapse a couple of months ago thanks to a new tick bite, I’ve improved drastically. But still, on a good day I can manage only one or two activities—and manage is the key word. The rest of the day is an interminable stretch I try to fill with reading, movies, and rest enough to keep the pain at a tolerable level.

I miss walking, running, biking, hiking, traveling, shopping, visiting my kids, cooking wonderful meals, visiting friends, volunteering in my community. Not to mention working. I’m not always able to be positive about my slow but steady improvement.

Fear that I’ll hit a plateau weighs me down. But I’ve learned I can help myself by sticking to this anti-depression strategy: enjoy one social encounter a day.

Continue reading →

Running on Empty

Activity or Rest? November 29, 2012 1 Comment

Credit: Taylor a’s Flickr stream

I did it again just the other day. I ran out of gas.

I accepted an invitation to meet my friends Susan and Eva for lunch in Maryland 25 miles away from my Virginia home, even though I already had a doctor’s appointment on my calendar for that morning.

I climbed into my car and drove thirty miles to my appointment. Then I got back in the car and, instead of going home, I drove to the restaurant. And then I ran out of gas.

Meaning that I hit the wall physically. And this keeps happening to me because I can’t get it through my head that lyme means you never have the energy you wish you had. You want to do things you’d normally do, but wishing doesn’t make it so.

I’m learning to think of my energy like the gas in my car.  At this point in my treatment, I would say I have about 1/8 of a tank. Continue reading →

Lyme: Lessons Learned

Activity or Rest?, Battling Isolation, Co-infections, Healthy Eating, Lyme and the Brain, Lyme Basics, Mental Health November 20, 2012 1 Comment

Taking care of yourself isn’t, well, rocket science…
[Dr. Robert Goddard. Credit: NASA on Flickr/The Commons]

I’ve had the misfortune of getting re-infected just as I was pulling out of two-plus years during which I was largely sidelined by lyme and other tick-borne infections. There’s a bit of good news, however. I learned a few things the first time around, and I’m doing things differently.

Here are some lessons I’ve learned. Maybe you can benefit by taking them to heart now, instead of learning the hard way like I did over time and missing out on benefits you could have enjoyed much, much sooner. Continue reading →

Reading Days

Battling Isolation, Mental Health November 19, 2012 Comments: 5

I always keep a pile at hand, in case a book doesn’t grab me.

I have fond memories of reading days in college before exams, when I holed up in the university library to immerse myself in my studies. My life is a bit like that now, with many lyme-imposed reading days spent in bed or on my red sofa.

And right now, I have an added challenge. I had a couple of good days, so I thought I was cured. Right. Will I never learn? I did ten leg lifts lying on my back—and blew out my lower back. I did too much too soon. Excruciating muscle pain on top of lyme symptoms mean I’m literally flat out today.

Fortunately, stepping up reading time is a pleasure for me. In grade school, when our public library limited check-outs to three at a time, my mother got special permission for me to get ten so she didn’t have to make the long drive into town from our farm quite so often.  On a lazy summer day, I could knock out a couple pretty easily.

For the past two decades, I’ve met monthly with not one but two book groups, reading and talking about everything from plays to fiction and nonfiction. In one group, we decide on a reading list by committee. In the other, the hostess of the month chooses a title. The latter gets me trying books I might not have voted for, and I’ve made some great discoveries.

Needless to say, I have missed most of the meetings over the past year—but I have read all of the books. I also have many book-loving friends who share recommendations. Yet sometimes it can be hard to find those books that draw me in, the writers who take me away from my world and fully into another. Continue reading →

Shoe Shopping

Mental Health, Staying Positive November 18, 2012 Comments: 2

IMG_1822

Today I ordered shoes online. Three-inch heels. A purple pair. And another, goldenrod yellow. Such extravagance.

I am not normally the sort of person that revels in retail. Usually, I give my spirits a boost by seeking nature, not Nordstrom’s: the sun on my skin, bird calls, an array of wildflowers or beautiful leaves.

But today, as I was surfing the internet in bed, a shoe store ad appeared in my inbox. I felt compelled to indulge. The effort and strain of going to a store does not appeal these days, but I felt great satisfaction clicking through the pages and hitting the “complete order” button.

You have to understand that shoes have not been fun lately. Ever since a tick bite a couple of years ago, I’ve had a stabbing pain in my left foot. It seemed to be a nerve inflamed by bunion pressure. But now I am not so sure, now that I know I have lyme. The foot pain flares when other lyme symptoms do; it is the one symptom that has remained constant as others ebbed and flowed, flared and faded.

The podiatrist gave me custom orthotics and told me to stay out of heels; I gave most of mine away and bought expensive, practical, unlovely sandals made by a running company. But improvement in my foot pain came only when I started antibiotics for lyme.

So today as I lie in my bed working on my computer, my cheerful thought is that the treatment will ultimately fix my poor foot along with the rest of me. So I can get out of flats and back to strappy, three-inch heels.

I place the order for pretty footwear, and I can see myself walking straight and tall instead of scrabbling along limping and hunched in pain. I can imagine walking easily down city sidewalks, feeling strong and independent again in sexy, feminine heels.

And for once, I don’t mind calling myself a material girl.

Video: Tiny Lyme-Carrying Ticks — Know What You’re Looking For

Co-infections, Prevention Tips, Ticks: Where It all Starts, Video November 18, 2012 Leave a comment

You’ve probably read that ticks carrying lyme disease and other infections can be the size of a poppy seed. Sure, you’ve seen the seeds adorning muffins. But this video PSA with Katie Seeley makes you stop and focus on just how tiny they truly are.

It’s important to know what you are looking for, so that when you check yourself or your kids for ticks, you’re looking as closely as humanly possible. Someone I know pulled a speck from his skin with tweezers thinking it was just a minute scab, until he looked at it up close and saw tiny legs waving at him.

Indeed, these ticks are so small that I missed the one that reinfected me when it first latched onto my thigh. Despite my fanatical body check (I was recovering from a previous infection, so believe me, I was motivated never to be bitten again), the infinitesimal tick eluded me until it had been embedded in my skin for a couple of days and caused some irritation…by which time it had transmitted its dangerous cargo, causing my health to crash again.

Remove an infected tick soon after it bites, and you may well never be infected. Seek proper treatment right away if you are infected, and by most accounts you will feel great soon. Miss the infection for some weeks, months, or years—and you could be in for a world of trouble beyond anything you ever imagined.

So check out this video, and mind Benjamin Franklin’s words: “An ounce of prevention is worth a pound of cure.”
Lymenade, which produced this video with And What Productions, is no more. But the group’s creative work to get the word out about the lyme epidemic lives on. Learn more in the videos following “Poppy Seed,” above.

And to see a New York Times video on how a tick sticks to the skin, click here.

Lyme-Brain? 5 Tips to Help Your Flagging Memory

Lyme and the Brain November 18, 2012 Leave a comment
  1. Calendar. I use an actual calendar, not the virtual version on my computer, and keep it in the kitchen where I’m most likely to see it. The blocks for days are big enough to hold not just appointments, but my task lists. I cross items off as they are completed; with this visual record in plain sight, things are less likely to slip through the cracks.

    Post-its are the visual cues that help me keep track of everything from doctor’s appointments to sticking to 50% of what I think I can do instead of being too active and triggering a set-back.

  2. Post-its. A calendar is great, but on bad days when my mind isn’t working well, I’ve still missed things. A cheerful neon post-it placed to catch my eye – on the coffee pot, for example – serves as a reliable back-up prompt that I can literally carry with me when I leave the house if I feel the need.
  3. Smartphone apps. Our phones are always at hand, so if you’ve got a smartphone, don’t overlook reminder apps, the high-tech version of my post-its.  With many options, you can find one ideal for your needs.
  4. Daily symptom log. Remembering everything you want to tell your doctor can be a challenge. I use my daily symptom log  to make a concise list before appointments, so the doctor and I have an accurate picture of how I am doing over time.
  5. A system for organizing paperwork. Dealing with a major illness is a big job. I’ve felt overwhelmed trying to keep the deluge of information straight: notes, tests, doctor’s visits, bills, insurance claims, medications, treatment instructions. Even if lyme isn’t affecting your memory, you can’t remember all that! So you need to be able to put your hands on critical information when you need it. Create a notebook or folder system and file each item as it comes along. (Too much to handle right now? A former lyme patient and her doctor have done the work for you: My Lyme Guide.)