Take a Bite out of Lyme Disease!

IMG_7624-1

May is Lyme Disease Awareness month.

As author Amy Tan points out, the greatest harm that borrelia causes is ignorance. I can’t pretend to understand why the CDC and IDSA dig their heels in further on denying the existence of chronic Lyme disease when there is a mountain of evidence-based science to support the fact that it persists in the body despite 30 days of antibiotic treatment. This weekend, a large group of protesters line up in front of the IDSA headquarters in Arlington VA, to protest the IDSA’s treatment guidelines which have left thousands misdiagnosed and untreated. My friends may be sick of me beating a dead horse with my constant posts about Lyme disease, but I assure you, Lyme disease makes you feel worse than a beaten dead horse. The CDC and IDSA’s Lyme disease agendas are nothing short of criminal. People ARE dying from Lyme disease and it doesn’t have to be this way. Continue reading “Take a Bite out of Lyme Disease!”

Bee Healthy

039-IMG_4897-1
039/365 – The Honey Bee — Borrelia’s worst nightmare!

As a person diagnosed with and treating Lyme disease, a disease with no known cure and life-debilitating symptoms, I find myself coming across “sure-cures” every day. One such cure that’s been floating around for a while is Apitherapy or bee venom therapy.  Ellie Lobel, who had been fighting chronic Lyme disease for nearly 20 years, was cured of Lyme disease when she was attacked by Africanized honey bees. Continue reading “Bee Healthy”

A Lived Life

IMG_1832-2

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.  Continue reading “A Lived Life”

A Day in the Life

IMG_1063-3

The day starts out innocently enough. I get up, do a few light chores, prepare my daily pills and sit at my computer, already exhausted from the morning chores. After receiving their fair share of my buttered toast, Juno starts to goose me.

“It’s time to go walkies, now,” she tells me with a sparkle in her eye and a gently opened-mouth smile. Continue reading “A Day in the Life”

This Side of Normal

IMG_0264-1

 

I’ve been thinking a lot about returning to normal lately and constantly wondering what normal will be for me in recovery. After all, I haven’t really been “normal” in a decade.

I think the first thing people wonder about someone who’s gone undiagnosed with a chronic disease for as long as I have, or longer in some cases, is why that person didn’t keep seeking answers. Isn’t that what a normal person would do? It’s one of those questions that only those with Lyme would understand. Lyme beats you down so much, you have so little in the tank to even think about where to look for answers if they don’t exist in standard medicine or even homeopathy, so you begin to live a different life. For me, I quit looking after 12 doctors. For others they quit looking after 25, 40 or more doctors. Continue reading “This Side of Normal”

Dingo Bells

dingo bells

Long time readers will recognize this month’s masthead from December 2009. I took a short cut and repeated one of my favorite cracker and criminal holiday adventures. As usual, Lyme and Co-infections company has left little in the bank for creativity. But the good news is, I’m getting closer to recovery. I swear internet. With the exception of some occasional back pain, all my joint pain is gone and what I’m left fighting are neurological and cognitive symptoms, along with enormous fatigue. Some days even climbing a flight of stairs will knock the wind out of me.

And just when one would think as recovery gets near, that drug protocol ramps down, it’s very much the opposite. My regimen has become so complicated, I need a printed calendar and iPhone to monitor it daily now. This month, I rotate through 11, that’s right, ELEVEN, different medications. Some I take daily; some I take 9 days on, 5 days off; some I take 5 days on, 11 days off; some I take 3 days on, 11 days off, and one I take twice weekly.  Included with that round-up are more IV antibiotics every other week.   It seems unreal to a person not familiar with Lyme but the more research done on the Lyme disease complex (Lyme + co-infections) the more that aggressive individual treatment protocols make sense. Through reading the tons of books and literature done on Lyme disease, I’ve learned that the last phase of recovery is often the most aggressive and drug rotating protocol. It’s comforting to know there are recovered patients who’ve gone through a program as nutty as this. Still, it’s no less embarrassing to be picking up 9 medications at the pharmacy in front of a line of 8 people with wide eyes wondering if they can catch whatever it is I have. Continue reading “Dingo Bells”

Adventures in Dogcations

Big River, Mendocino

This year, we were able to get away for a few days for our anniversary. I’ve been wanting to go up North to a dog friendly environment and hike some headlands and river trails. Last year I was too sick to even sit at my computer and this year, though I’m still on plenty of drugs for Lyme, is quite different.

Prior to this little get-away, in September, we managed a short stay in Maryland for Mr. Wild Dingo’s 30th reunion with his Navy Academy. I’ll never forget Juno’s disappointment in not going on that vacation. She literally sat by the trunk of the car  while luggage was being loaded and the look on her face said it all.

Continue reading “Adventures in Dogcations”

Where the Hell are my Wings?

IMG_9326-2

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”  ~ Martin Luther King Jr.

A flock of brawny pelicans soar the sky above the sea one evening. I’m feeling weak and my headaches have returned. All that gain I made in the past few months has withered slightly. With every change of medication, five steps toward recovery are made, followed by two or three steps back. It’s common to plateau or regress slightly, my doctor tells me. Continue reading “Where the Hell are my Wings?”

A Game of Inches

IMG_7884-3

Anyone can end up in hell: by the choices you make or by the luck of the lottery. Since nobody’s going to reach in to pluck you out of hell and plop you into paradise, you have two choices:  stay there and be miserable or claw your way out—one inch at a time. That clawing thing sounds much more fun.  Continue reading “A Game of Inches”

Standing Still at Warp Speed

IMG_7772-5

Sometimes I feel like Lyme disease is a black hole and I’m standing on its event horizon. Petrified, yet consumed with its mystery. My feet too heavy to move from the crushing grip it has on me. One second of my life spent frozen on the event horizon and a life time of the world around me has passed.  Events come and go and I’m powerless to participate. I’m standing still while life around me moves at warp speed. Continue reading “Standing Still at Warp Speed”

Around Every Corner Mischief Awaits

IMG_1300-1

It seemed like an eternity passed before I could find an angle that would capture both the dogs and a good portion of one of my favorite walking spots. After a few minutes of positioning the dogs, testing the angles and arguing with the cracker that “stay” means “stay” and that “look” means “look at me, not behind you for squirrels,”  I suddenly had their full cooperation.  I held the shutter button down and told them how wonderful they were and what a great payment they would receive.

Continue reading “Around Every Corner Mischief Awaits”

It’s Like Beating My Head Against a Fog Wall

IMG_7250-1

It was a warm, fall evening in Santa Cruz as Mr. Wild Dingo and I walked the dogs along the beach.  The usual sunset over the sea’s horizon was gone and instead a dense wall of fog rolled in. Though it was windy, it just sat there, motionless, blocking the sun set from above. I just started to hit a new downturn in my health, so the weather brought a kind of comfort. It was as if Mother Nature could truly empathize in a way nobody else could as she eased the burden of the bright light on my sensitive eyes. Continue reading “It’s Like Beating My Head Against a Fog Wall”

Passionately Dedicated to the Pursuit of Short Term Goals

IMG_6325-1

It’s time to take a page out of my dog’s book on living.

In my life, I’ve been disciplined, dedicated and goal-oriented. I’ve had ambitions and dreams, just like anyone else. For the past few years, I’ve been struggling a bit with guilt that surrounds my no longer having any dreams. Lately, even my hobbies have dwindled. Being chronically ill not only robs you of drive and a desire to be productive in society, but it also impairs that will to participate in hobbies you once enjoyed. It leaves you empty and indifferent. Maybe even passionless.  I don’t mean to sound dramatic or negative. I’m not sad, in fact, I’m fairly positive that I’m going to recover and get back to living my life with the vibrancy I once had. Continue reading “Passionately Dedicated to the Pursuit of Short Term Goals”

Excuse Me While I Kiss the Sky

IMG_6169-2

Purple haze all in my brain. Lately things don’t seem the same.  

I’ve got Jimi on my brain for September’s masthead.

In addition to having difficulty writing simple blog posts, it seems my amateur capacity for moderately decent photography has gone to crap. Sifting through all my photos taken in the past months was futile. Everything was out of focus or cropped just horribly wrong.

Out of desperation, I went outside the other night to take a few shots of the sunset from the west side of our house. Because you can’t screw up sunsets, right? Wrong! You can. However,  I managed to get this shot above and I’m proud to say, it is straight out of the camera. Not a single post processing tweak has been made. Seriously though, don’t you just want to kiss that sky?  Continue reading “Excuse Me While I Kiss the Sky”