How Can I Become a Better Lyme Advocate?

Hola, peoples. Summer break is in full swing, and I am very glad to report that I have “survived” another school year. BTW, surviving is only related to my health and by no means implies that I do not love my work because, I do love my work! Yes, there were many, many bumps in the road health-wise, but with tons of support from family, friends, and my colleagues and students, I have made it to a 4th summer break post-Lyme diagnosis! Woo hoo!

Just a few weeks ago, I finally found the time and the wherewithal  to submit an official complaint to the state medical board about the infectious disease doctor who saw me in January 2013. This doctor was completely terrible. I debated whether or not to file a complaint, I am not one to rock the boat, but after many in my Lyme support group continued to discuss the importance of bringing the issues with Lyme, the diagnosis, the care needed, to the state medical board, I decided that I needed to do so. Sending to him was the last resort of my GP who had been trying to treat me for 3 years of unexplained symptoms. While I am quite positive that my complaint will not even warrant an “investigation,” I am told that at the very least, it gets recorded, thus, it can be helpful in the long run for the continued fight for awareness of Lyme disease.

As advocates, we have to start somewhere. I debated about submitting a complaint. But, several of the members of the group are also very active in attending the state medical board meetings, in particular to communicate about Lyme disease and lack of diagnosis and treatment options during the open forum portion of the meetings. Right now, I am unable to attend for a variety of reasons, but I really do hope that some day soon, I can be a much more active participant in pushing for much more Lyme Disease Awareness in Texas.

Too many people are being lost to the monster that is Lyme.

Update: TMB reviewed my complaint and sent me a letter stating that my complaint did not “warrant an investigation” because the infectious disease doctor was following guidelines (looking for the bull’s eye rash – only found in 30-50% of patients). I did not have the rash. I just had new daily headaches, lower back pain, nausea, severe fatigue, joint pain, cognitive issues and severe neck pain. And, I had had these symptoms for over 3 years off and on and that is exactly why my GP sent me to and ID doctor. She was stumped and had tested me for as many other things as she could to rule out other diseases. The ID doctor told me to drink more water and carry my purse on the opposite side. THIS DOCTOR DID NOT HELP ME AT ALL. He sent me back to my GP. 

Less than 50% Lyme sufferers have a bull's eye rash
Source: http://www.lymestats.org

I guess I am a lucky one of the up to 50% that do not present with a rash that the Lyme infection was caught. Otherwise, where would I be? Way worse, and literally dying to find the correct diagnosis. 

Although I had already started this blog before I took the step to submit the complaint, I do feel like I have taken the first step in the right direction – the direction of real Advocacy.

Where is the CDC??
Source: http://www.lymestats.org

There are SO many of us not getting diagnosed correctly, SO many of us who end up with Chronic Lyme, SO many of us not receiving treatment. It is wrong, and it is time for me to SPEAK UP MUCH LOUDER!!

I want to send out a huge thank you to LymeStats for permission to use its AWESOME informative posters!! Visit the website today if you can!!

Do you do any advocacy work?  I would love to hear about it!  I hope you and your people are having a wonderful weekend. Please make sure to do tick checks. Be safe – Belle

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Escaping Lyme – Memory #1

When I feel really horrible, a migraine, nauseated, joint pain, and it is difficult to be here in the “present”, I escape if at all possible into my mind, into my memories. Usually, it is a worthwhile distraction.

 

When I was a child, my family and I lived in Upstate New York. My parents married young, my mom 19 and my dad was 21 or 22? My father became a high school Physics teacher in a rural New York township and my mom stayed home with us, me, then my two brothers. I think I was a little over a year old when they bought a very old farmhouse. Located on a mountain and accessed by a dirt road, we were isolated as the only family in that area to stay year round. There were other homes up in that area, although one could not see them from our house, but these other places were weekend retreats for New Yorkers who lived in the City. We lived in this house and in this area until I was 12. Most of the memories I like to escape to are from this time period.

Memory #1 Escape – Snow:

Sometimes, when I feel so horrible I like to think about the snow. Yes, of course I romanticize it; I wasn’t the one trying to keep the house heated, or the one trying to get to work. For me, snow was always awesome and amazing. One of the best feelings ever is being outside in the deep, deep cold, the silent, penetrating cold, breathing hot air into the ski mask you have on because breathing in the cold air hurts your lungs. It’s the simultaneousness of breathing in the bitter chill, burning your lungs and nose hairs alike, then breathing out the hot, the hotness of your breath that turns to steam that rises on your cheeks and into your nose.

So snow. After the storm rides through, it becomes an irresistible and impenetrable quiet. All I can hear is the crunching of my moon boots through the crusty topping of the snowdrifts. If I stand for a minute, the silence itself is almost a sound. Some describe it as a blanket, the snow, but more so and for me, snow is a buffer from the outside world. Out in the wintery landscape, one feels enveloped and safe, encapsulated in the moment. Nothing breaks the eloquent silence and you don’t want it to ever end. The closeness. The buffer. The insurmountable quiet.

It’s cold but I am wearing a snowmobile suit. It takes forever to dress this 6 year- old ragamuffin. First, gloves, hat, scarf. Then legs of the suit and slide into the snow boots. Now, arms in, make sure the gloves are tucked into sleeves (this is why we put gloves on first), then zip up. OH. Make sure to go to the bathroom before dressing for outside. We never had ear muffs. Always a ski hat pulled down over the ears and maybe another scarf wrapped around the ears and the nose/mouth.

cold-snow-forest-trees-medium.jpeg

Heading out into that stillness, that world of endless white, hours of pure fun and exercise awaited us. One time, a blizzard came through at Easter. It blew hard and the drifts were monstrous. When it finally subsided, my brother Brad and I headed out to the side yard along the rock wall. The drifts were utterly amazing. We started digging. The snow was perfect. The outside of the drift was caked together and solid. It held fast as we tunneled into the pillowy insides. We worked for quite a while, scooping and moving snow. Finally, we could both sit inside. We laughed at our good fortune and our lovely handiwork. Our little hangout held fast for several days until it started to warm up a bit and began to melt.

Our faces burn red from the frosty air. When we get inside next to the warm fire that reaches into our muscles and works into our bones in a way like nothing else, our mom will put Bag Balm on our rosy cheeks and our noses so they wouldn’t chafe. We’ll be exceptionally tired out. The kind of tired that feels good though, you know? While we unthaw, we put up our suits, shake off our boots, put everything by the stove so it will dry out. Once warm, we can barely keep our eyes open to eat even though we are starving. We drift off to sleep into one of the very best night’s rest we’ll ever have again.

Peace out there today – Belle