Tag Archives: chronic illness

It’s been four years!

Uncategorized March 3, 2022 1 Comment

Wow. My last post was 2018. So much has happened since then. And now I’m living in southern Maryland, with a view of the Chesapeake Bay. I can even see it when lying in bed (above), which is awesome since I still spend a lot of time in bed.

I think I might be well now except for a lot of stresses that set me back, and two tick-bites that may have set me back though we treated right away, my doctors did I mean.

I’m wondering about using my limited energy to blog again. Is anyone out there? Can I be helpful?

Something I’ll consider seriously in the coming days. Because we always have to prioritize, those of us with chronic illness. I do need more things to do lying down, though, so in addition to a book idea I have, perhaps I’ll return to this space regularly.

If you are reading this – I hope you are doing well on this day. I focus on one day at a time now, and I’ve gotten pretty good at not worrying about the future so much. Try it and see for yourself if you can find some peace that way.

VIDEO: “Unrest”

Activity or Rest?, Battling Isolation, Staying Positive, Video January 11, 2018 1 Comment

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I would have missed this award-winning documentary on PBS by a young woman named Jennifer Brea had my brother not alerted to me to it after he heard a segment on NPR. (See below for streaming links).

Here are a few words that were in my mind as I watched: Brilliant. Inspiring. Courageous. Talented. Heart-rending. Timely.

Continue reading →

Beware Infection and Re-infection with Lyme

Co-infections, Lyme Basics, Prevention Tips, Ticks: Where It all Starts June 22, 2016 Comments: 5

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the nymphal tick. LifeLoveLyme

My friend Mickey gave me this magnifying glass cleverly disguised as a necklace. Note the thin tweezers for grasping the tick close to the skin, and the sesame seed next to the largish-sized nymphal tick.
LifeLoveLyme

Last week, I had just pulled out of my brother’s driveway in the gorgeous countryside on the outskirts of Middleburg, Virginia, when I felt an itch on my ankle. I looked down and saw a teensy tick clinging on by its mouthparts. Wrenching the steering wheel, I pulled over in a blind panic. Using my fingernails as tweezers, I grabbed it as close to the skin as I could and got it off.

Chanting “Be calm, be calm,” I got out of my car and scanned the parts of my body I could see. There on the back of one leg was a larger tick. I struggled with that one but got it off, too.

Making a U-turn like I was in a movie getaway scene, I tore up John’s driveway, jumped from the car and ran into his house. I shouted out what I’d found as I headed for the bathroom, stripping off my clothes as I went.   Continue reading →

10 Things I Wish I’d Known About Lyme Disease

Co-infections, Lyme and the Brain, Lyme Basics, Prevention Tips, Symptoms: How Do You Feel?, Testing, Ticks: Where It all Starts, Tips for Family and Friends January 23, 2016 Leave a comment

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…

 

 

It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.

Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes:  Continue reading →

O Canada

Lyme Basics January 3, 2016 Comments: 3

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I’m always a little stunned when I track this blog and am reminded that people from all over the world visit. So many of us are on the lookout for information.

Today I’m thinking about Canadians because lots of my traffic at the moment is coming from my neighbors to the north, who’ve been checking out my post from several years ago on how Lyme was affecting my brain at the time.  Looks like some of you are sharing the link on Facebook. Thank you!

Like others around the globe, many Canadians are having a tough time getting good treatment. Health officials just don’t get it (sound familiar?).

The nonprofit Canadian Lyme Disease Foundation says:  Continue reading →

Blackberry Cobbler

Healthy Eating, Staying Positive September 3, 2013 1 Comment

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Photo: LifeLoveLyme

I miss cooking, I really do. I used to prepare meals all the time—for friends, for my kids, just for myself. I’m not an amazing cook, mind you. But I love the process, from chopping and stirring to arranging everything on pretty serving dishes.

When Lyme hit and left me breathless with shock, I couldn’t stand up long enough to stir a sauce, much less haul my pain-riddled self up and down the aisles of the grocery store and stand in the check-out line.

Continue reading →

Believing in Lyme When Looks Are Deceiving

Battling Isolation, Lyme Basics, Staying Positive, Tips for Family and Friends January 13, 2013 Comments: 5

Credit: Lyme Chick's Facebook page

Credit: Lyme Chick

“You look great!”

Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”

I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain. 

Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.

Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.

I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.

The thing is, I felt like hell on the inside.

Continue reading →

Grief is a Rubber-band Ball

Mental Health, Tips for Family and Friends December 22, 2012 Comments: 6

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I’m no stranger to major loss. As a teenager, I lost my beloved family home and other ties to childhood in the wake of huge financial losses for my parents.

Then came the death of my father after a five-year struggle with lymphoma. Later came the excruciatingly slow passing of my mother-in-law to Alzheimer’s, and my own mother’s declining memory. 

Then, the nearly unbearable abyss of divorce. A few years later, I’d only just started to approach feeling whole when a tiny tick transmitted the lyme that knocked me to my knees—and even further down.

The holidays, a touchstone to the past, intensify the grief. I feel it in every cell of my being.

Recently I said to my therapist, who is helping me get through the many stresses of chronic lyme, “A year ago, I thought I had a handle on the losses lyme has sent my way. And I sure thought I had processed all that grief from childhood, and all that terrible pain from the breakup of my family. Why am I so overwhelmed all over again?”

And she said, “Because grief is like a rubber-band ball.” 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 →