Bloody Lymey

A Blog About Living with Lyme Disease

How Do I Do This Again?

on September 25, 2012

I haven’t written anything in a while because, frankly, I’ve been feeling great — and living a life proportionate to feeling great.

Just three days ago I was in Boston walking the Freedom Trail.  There were steep hills and steps and I walked and walked.  The sun beat down on me, I took pictures, and I cherished every minute of it.

On the drive home,  my hands ached.  I thought maybe I was gripping the wheel too hard in the thick traffic on the Mass Pike.  I mindfully loosened my grip.  The aching continued.  It increased.  As we climbed the highest point on I-90 East of the Dakotas, my hands were killing me.  I did my trick:  extended my arms to brace myself with my elbows and palm the steering wheel.  This is great for long-distance, straightaways.  Not so great for city driving or lots of turns.

Climbing out of the car, my knees were creaky.  My hands were killing me.  The temperature in Boston was well into the 70’s with no breeze – just the warm sun.  At home?  It was nighttime and it was settling into the 40’s and smelling of frost.  I thought it was as simple as an extreme weather change in a very short time.

Now in three days, it feels like gravity is oppressing my limbs. It feels like my arms and legs weigh hundreds of pounds and I can’t sleep enough.  My joints are killing me.  The sore throat I woke up with after the day in Boston gave me hope that perhaps it is an arrival of the flu or something …….. something blissfully temporary.  But the sore throat has receded and here I am feeling lymey.

I had been abstinent from wheat and thriving.  I know in Boston we went out to eat.  I wanted a HOT meal and that ruled out salad, the only thing I could eat that was wheatless.  Everything else was a sandwich, pizza, or some other verboten thing.   I had pizza.  Could it be as simple as that?

I had pizza on my son’s birthday party without much incident.  Could it be that this pizza had more wheat or more gluten or more something?  It was very very thin …… less dough than what I had two weeks ago.

But Friday we went to a concert and underestimated how long it would take to get there.  For dinner I munched Dorito’s and a dark chocolate bar sold in the concession stand.  Thought I was playing it safe, avoiding pretzels and other gluten-gimmes.

My doctor hasn’t called yet about whether or not I have Celiac — – and I haven’t called. I keep forgetting.  I think deep inside I don’t want to know.  If I don’t have it, then there’s Lyme Disease.  Period.  Nearly everything else has been ruled out [again].  If I DO have Celiac Disease then……. no more “social eating.”  No more birthday cake.  No more cheese & crackers at a party.  No more pizza.  No more lasagna with curly layers of noodles.  No more fettuccine Alfredo.  And frankly?  Scrutinizing ingredients for hidden sources of gluten is not as easy as I had once thought.  Flour is a thickening agent in soups, gravies, salad dressings …… it serves as an anti-caking source in spices.  It prevents ice cream from crystallizing.  It’s everywhere.   Sometimes all there is to eat in a restaurant or when out of town is f**king SALAD.  And then you probably better ask for oil & vinegar with it because …… who the hell knows?

So here I am.  Somehow when this is my everyday life, I get acclimated to it.  I intuitively back down the stairs to spare my knees the agony, and the threat of falling on my face.  I get used to feeling like I’m constantly grinding gears in a stick-shift — ’cause that’s how my knees feel when I walk.  Crrrrrrrrch.  I get used to being tired and don’t feel like thinking is such a struggle.  The pain is always there and I sort of forget about it.  With this newness I’m acutely aware of all of this shit again.

Remind me:  How do I do this again?


2 responses to “How Do I Do This Again?

  1. Dj Deelux says:


    First let me say how sorry I am to hear about your current re-occurrence and struggles. As I read your blog I could not help but get reminded of the power of seasonal allergies. Especially with going into Boston for the day. It is not a huge geographic change but I have had a major autoimmune response when traveling to the Cape and back.

    I also want to say that the gluten intake does immediately make my symptoms worse. Going out to dinner can be very challenging. Maybe you and I can go grocery shopping together and share some pointers? Don’t let eating gluten free become this huge, daunting ordeal. I’ve learned to have fun with it. I know that may sound odd.

    So, to respond to your question above: You do this with friends who care and understand and not alone.


    • Becki says:

      Thanks, darling. 🙂 I tend to have a bad emotional reaction to recurrences after a period of feeling well. I think I’m back on track mentally. It is what it is. There’s also a BAD bug going around at work and I seem to have the fatigue and muscle weakness that everyone else has ……. just not the sinus stuff, so I’m hoping this is my body fighting the bug and perhaps overreacting. My joint pain cleared up today. I do way better with the pain than with the fatigue.

      You need to call me, Elana. 🙂 Miss hearing from you!

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