writer, warrior, whack-a-doodle

A Lived Life

A Lived Life

March 3, 2015
Posted in: Lyme Disease, Mastheads | Reading Time: 4 minutes


For as long as I left this blog limpling along at one or two posts per month, it seems like a daunting task take on a  project that has a daily due date. But I'm tired of waiting to recover. I'm tired of not being able to live my life because I never know when my health will go completely bonkers.  Since it's my project, I set the rules. And though my first rule is that my health comes first, posting one photo per day on three social networks, Instagram, Facebook and Flickr, without concern of a backstory, captions or entertainment, can be surprisingly liberating. Taking the photo for my entertainment and learning objectives is a healthy thing to do when you're faced with a limited lifestyle. It gives me something to focus on, be accountable to and I'm happy about it. I've also started few online, go-at-my-own-pace classes as well. 


005/365 Flashback Friday: Can you hear me now?

The best part of my seting my own project rules is I get to post any one of my shots from my own photo archive on Friday. 


007/365 Breakfast of Champions

Cocktail hour for a Lyme warrior begins first thing in the morning with a warm glass of lemon-honey water followed 30 minutes later with a shot of pills. Bottoms up!

This month, my doctors tried to change up my medications, removing two of them for one co-infection, Babesia, so they can start addressing the other co-infection, Bartonella, more aggressively. I didn't do so well. Within two weeks of going off those meds, my migraines, joint pain, fainting and extreme fatigue returned. Treating three or more tick infections can be very tricky as some of the medications interact. The medications that treat Babesia, unfortunately interfer often with the best medications for Bartonella. As painful as the Babesia symptoms are, Bartonella is more torturing---psychologically. When treating Bartonella, the insomnia, song iteration and light and sound sensativity, disappear and I feel calm and in control of my body. When not treating it, it feels like an alien inside me, controlling all my movements like a puppet, who won't allow me to sleep. Sometimes it's referred to restless leg syndrome. Ha! I wish it felt that way. Sometimes, it's so agitating that it feels like I'm wearing an Edgar suit. Those symptoms are much less severe than they were two years ago when I was twitching and trembling uncontrollably. It's easier to cope with it all knowing the cause, but it's still hard not having any control. No amount of meditation, sleep medication, calm enviornment can shut down the agitation and insomnia at times. Last week, when Mr. Wild Dingo was on travel, I spent a week with no music or TV stimulation and still woke up to Hootie and Blowfish in my head. Its unnerving when your body can't shut down.


006/365 - Baking Fail

Baking Fail. A Paleo Magic Bar gone very wrong. It's a good idea to keep a carton of heavy whipping cream on hand when learning to bake.

Treating one co-infection heavily over the other can feel like a choice between two evils. Symptom-wise, it's a choice between migraines, joint pain, faiting, extreme fatigue and sleeping heavily, or insomnia, song iteration, light-sound sensativity, rage and kidney problems. Since Babesia seems to be the more dangerous pathogen, the focus is on that so I'm back on the medications to treat Babesia. Because of all of these new clues about how bad my infections are, it's time to choose a more permanent solution for my IV therapy. I'm not thrilled about moving a PICC line, but I'll do whatever it takes for a chance at full recovery.


008/365 - Mono No Aware; The Cherry Blossom

In Japan, the Cherry Blossom symbolizes "mono no aware," which translates to "an empathy toward things or awareness of impermanence of all things---heightening appreciation of their beauty and sadness at their passing. Given the transience of the cherry blossom's extreme beauty to its quick death, if you blink you may miss the opportunity to experience both its beauty and its message. 

So it looks like it's going to be a quite a bit longer than I expected. And I don't have the patience to wait around to start my life. Dinged up or not, it's time to start making plans and living again. After all, a lived life is beautiful.

Happy Spring Readers!


March 2015
A Lived Life

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5 comments on “A Lived Life”

  1. I'm sorry your recovery has stalled. I guess none of us are guaranteed a 'normal' existence health-wise, so we have to make the best of what we've got on any given day.

    Your pictures are beautiful. As good as a professional photographer.

    Let's hope like Spring you will be rejuvenated.

  2. Once again, we are at a loss for words. We do admire your courage in the face of all you have to deal with. Mom always keeps you in her prayers that one day soon you will be well again. We continue to be amazed by the wonderful photos you take.

    Hugs and Woos - Phantom, Ciara, and Lightning and Mom Kathie too

  3. Good on you for getting on with life. Here's hoping the infections and medications stop using your poor body for a battleground soon.

  4. I'm so sorry for this setback! I was so hopeful you were close to a full recovery. It is possible to be cured of all three infections right??

    I had no idea you have an IG account! I'm following you now. Your photos are so gorgeous. I love them. I'm glad I'll get to start enjoying your photography again. I can't imagine how hard it is, but I'm so proud of you for choosing to live again instead of waiting until you're better. *hugs*

    P.S. I have mild restless leg syndrome that only kicks in if I'm really tired or on long plane/road trips (inherited it from my dad, he has it bad) so I know what it's like... the thought that what you're dealing with is way worse than that just boggles my mind. 🙁 I hope you can knock out the more dangerous infection quickly so that you can treat the other one and get relief from your symptoms soon.

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