Aside

Welcome!  Spark. Mojo. Vigor. Groove.  Is it time to get yours back yet? Grab a cup of coffee or a glass of wine and read about my journey to reclaim my spark.  This is not a chronic illness blog.  This is a screw chronic illness blog. 

My Doctor, My Hope

Going to a new doctor is fraught with anxiety. Will she be able to synthesize my ridiculous medical history into a clear diagnosis and treatment plan?  Even more nerve-wracking: will I be able to remember all pertinent details? Will I be able to get through the history of my entire adult life – quitting this, withdrawing from that – without crying?  And there are all those damn forms to fill out in advance.

LLMDs (Lyme literate medical doctors) typically don’t accept insurance, so there’s also an enormous outlay of cash that goes with this first meeting. My new doctor’s initial (90 minute) visit costs $750. I should be grateful – my children’s LLMD charges $900 for a two hour visit to kick off the medical relationship. Sigh.

The biggest question, of course, is will the new doctor be The One who gets me well.  The One who returns me to the world, so I can work and exercise and slave away on the dishes like everyone else.

Well, I had my appointment today. She is only my second Lyme doctor, though I’ve certainly seen my share of specialists over the years. She is bright, experienced, aggressive. She offered me both hope: she thinks I can get better on oral treatments alone, and I won’t need a PICC line!  And realism: she said there is a chance I will not recover 100%.  This was really, really hard to hear, even though I know it to be true.

But that helped me trust her.  The ones who tell me they can make me better than ever? They’re just selling something.

So… we’ll start by treating Lyme and Babesia together, and we’ll tackle Bartonella down the road.  I have a plan, a hope, and a fistful of prescriptions.

Let’s do this.

Finding My Voice in the Disco Lights

Photo credit: Sandra Scherer via Flickr

Happy birthday to you… I used to sing in Latin, German, French, Italian.  But my classical training went out the window after the birth of my first child. I was incredibly, painfully hoarse. But you know all the advice about “Talk to your baby. Your baby knows your voice.”  So I talked to my baby anyway.  I’m not confident she recognized this squeaky, hoarse voice, but I talked all day long to her, best I could.

It took many weeks for my speaking voice to come back – probably exacerbated by my not giving my voice a rest.  But my singing voice never came back.  I couldn’t even sing the Happy Birthday song.  Each year that passed brought a bit more of my voice back. It still didn’t feel like me.

Both my health conditions (bad) and the immersion into motherhood (good) took some of my metaphorical voice, as well. Was I strong enough to speak up, to speak out? For my children, yes - I have no problem being a mama bear. For myself…it was much harder.

Last year, I decided it was time to find my voice again. I focused first on the literal voice.  For Christmas, I asked my husband for a karaoke machine. I had a set of disco lights from a party store, and after a few months, we finally got around to setting it up in the basement. I felt safest here, where no one could really hear me try to belt it out.

It doesn’t sound good. Maybe she’s just drunk…

It was awesome! And then it was awful. Who is that girl singing? What right does she have to pick that song? It doesn’t sound good. Maybe’s she’s just drunk. That’s right. In the privacy of my own home, in the solitude of my basement, I was judging myself. I fought the judging every time I caught myself in the act. I turned off all the lights, except the disco ones. I had an adult beverage. I relaxed and tried new songs.

What I thought would be a fun diversion turned into a form of cognitive behavioral therapy. Why must I be perfect? Maybe I can sing a few songs without sounding great, just because I like the songs. Each time I heard that judgy voice in my head, I kept singing, sometimes louder.

And then it happened. I found a rhythm to my secretive outings in the basement. If I started with a warm-up song – one that wasn’t too hard, but pushed me a little, the next song would sound better. I found some songs that were really fun to sing.  And a few songs that sounded…dare I say this?…good.  I did, I sounded good.  My vocal range expanded and my confidence grew.  It is still my secret escape. It’s also an incredible stress-buster. Sing it out, sister!

I gain strength every time I sing my – cheesy at it may be – warm-up song.  Oh yeah, it’s Eye of the Tiger.

Risin’ up, back on the street
Did my time, took my chances
Went the distance
Now I’m back on my feet
Just a man and his will to survive

Risin’ up, straight to the top
Had the guts, got the glory
Went the distance
Now I’m not gonna stop
Just a man and his will to survive

The Lost Days of Summer

I love being a mother, and Type A me wants to be an amazing one all the time. To be very honest, I stay home with my kids just so I can play with them. So when I’m in pain, or fatigued, or just distracted and cranky, and they spend their days watching TV, I feel like a failure. Sure, this happens to all moms sometimes when they have the flu or need to negotiate with the plumber.  But this can happen to me any day, any week, for any length of time. I can neither predict nor control it.

The last few weeks of summer, I desperately wanted to take my kids on fun outings.  The zoo, a farm, a waterpark. Museums. Make the most of our time together before they head back to school. But instead I spent my mornings nursing my headache, taking hot showers, popping pain relievers, drinking coffee, stretching, resting; doing whatever I could to feel more normal, more competent. Each day spent like this feels like one more wasted opportunity as the countdown got closer to the start of school.

One morning, feeling like I had a pinched nerve in my neck (upper back? sinus inflammation? Wherever that day’s pain was originating), I finally turned off My Little Pony and put on some Loreena McKennitt. The kids happily started destroying my house with their crafting (yay creativity??), and eventually went out back in their pajamas. One searched for “treasure” in the bushes. The other pushed a truck through the sandbox.

Unstructured time for creative pursuits? Freedom to explore? Maybe they didn’t have a bad summer’s end after all.

Roasted Potato Soup

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I managed to make soup the day after we dug the Blue Golds up. Roasted potatoes, leeks, chicken, roasted garlic. Nourishing Traditions-style chicken stock and celtic sea salt. It certainly won’t help me get back into my skinny jeans! Now let’s be honest, it took me all day to make the soup, because I had to take frequent breaks. I felt good about providing homemade food for my family, though, and an impressive 4 out of 4 of us thought it was delicious.