Anything, just not Lyme...

Today's post is probably going to be a bit scattered. I apologize in advance. It's been a week since I wrote. It's interesting because I think in book and blog form in my mind all day everyday, but cease to find the energy to write. As things happen, I word whatever it is into different sentences, then edit, delete, retype. I can see the words in my mind typing across a page or often as already printed on the pages of a book. That has been the case all my life. I knew as a small child I was meant to write. One of my fondest memories was in 6th grade when a fellow classmate, Clarissa, and I put together a newspaper and had it printed. I remember editing it and deciding how to cut, paste and place the different articles. We also put together a book of poetry and illustrated it. I don't have many fond memories of middle school, mostly moments of feeling awkward and different and fearful imprint my mind. But, I can remember vivid details about those projects. Thoughts I was having, the dried glue stuck to my finger tips, the room on the first floor of the tall, cold gray building on Forest street we worked madly away in. Just beyond the old mis-colored paned windows were picnic benches littered with the popular kids. I dreaded ever having to walk through the courtyard that entertained them all. I felt much better tucked away in the room on the other side of the glass working on our newspaper. I won a writing award that year for one of those projects. Interesting, as I write this, I realize that is the year the tick bit me. I wasn't thinking about that at all when I first started writing just now. But, that right there is a perfect example of how consuming this disease is. It seems to poke it's head into every moment I have in one way or another. It's like being in a peaceful room minding your business and having the door fling open and some, dumb loud, ugly creature babble and wave " I WAS THERE!".... Get out already. Ugh.

If Lyme is not popping into my memories to show me proudly how it's been a huge presence in my life for so long, then it shows it's ugly face in physical manifestations. I'll fall down in the grocery store, stutter in the middle of a sentence, get lost in downtown Pacific Grove where I've lived 20 years of my 34 years on this planet. My hand's will shake uncontrollably, my face will twitch, I'll fidget because I can't get comfortable, my heart palpitates loudly and I am short of breath often, my body "buzzes" and doesn't allow me to sleep. The laundry list goes on and on. I spent hours on the bathroom floor two nights ago doing my own personal rendition of the Exorcist. I had terrible shooting pains through all of my body, was sweating profusely and chilled to the bone, but couldn't leave the toilet to go change my pajamas or get warm. I had moments where I literally thought to myself I CAN NOT DO THIS! What choice do I have? I guess I should have thought I can not do this gracefully. I have to do it.

Some of the most troublesome parts are the mood swings. Some people refer to it as Lyme-rage. It often feels like I've taken a mean or grumpy pill. I don't feel like myself much of the time. I feel angry about things and say things that are totally out of character. As I am saying them, I just want to stop, take a deep breath and close my mouth, but I can't. It feels like someone else is operating my body. I feel like a ventriloquist doll. I often feel like a prisoner or stranger in my own body. It's scary. Days when I'm being awful, I try to tell my friends and family that I'm just feeling "lymey". Maybe it's a neurological thing or maybe it's just from being so sick of being sick and feeling out of control. I don't know.

The more I study this disease the more contradiction I run into. It leaves me feeling helpless. There are doctors pitted against each other, miseducation plagues the internet and the minds of many medical personnel, there is political controversy, someone in each room that seems to have an opinion one way or another on the matter, corruption from government, insurance companies and big pharma at every turn. It is maddening. I had no idea how amazingly iniquitous our system could be. I started reading a book about the lyme epidemic & controversy. Maybe not the best idea. It fills my heart with grief, disappointment and doubt. There isn't much I don't doubt right now... myself, our government, the health care system, the very illness that is stomping through my life, the future, the world. The list goes on and on. I think I may be in the bargaining phase of grief right now. I keep begging for this to be something else. Not Lyme. Not such a controversial disease. Many people are believed to have it without positive blood tests. I have wished for moments that mine weren't so profoundly positive because then maybe I could go back to blaming myself, compensating and adapting to the conditions of my body's changing environment. Then I remember how it has come to this point, where adapting to, was just no longer an option. You can't ignore tumors, large swollen joints, a heart murmur, central nervous system damage, fatigue, mineral deficiency. As one of the doctors said in a documentary I watched, "even if your blood tests present a false negative and you really do have this disease, it still needs to be treated." So that would only add another irritating level. I guess I have to remember 'how lucky' I am that I actually meet the standards for the CDC, IDSA and insurance companies as far as my tests are concerned. Wow, like winning the lottery. The luck I carry :-) It matters though. It matters in the context that when people start spewing their rhetoric about how they've heard chronic Lyme doesn't exist or it's all a scam, I have my blood work to turn to. Apparently many people don't have that. I wonder how people can believe this in the first place. There are 3 stages of Lyme, the third being 'Late stage neurological'. So if there is a late stage phase of the disease, how can there not be a chronic form? Also, the misinformation that Lyme is hard to get and easy to cure contrasts greatly with the fact that they have been spending millions of dollars on a vaccine to market for it. If it's rare, hard to get and easy to treat, why a vaccine? You don't have to dig too far to find the contradictions.

I have never taken the easy road. I suppose it is fitting that I would fall ill with a controversial illness. An illness that needs a voice. I am tough. I've fought worse odds than this I suppose, but somedays I just don't want to do it. I want to just stick to my hospice work and working with the grieving children and the animals. I like giving them a voice. I don't want to be a face or voice for Lyme disease. I don't want to be sick. Or, if I have to be sick, can't it just be something else? I want it to be something that can just sink under the radar, something that is understood or respected, something that has lots of specialists close by to choose from, something not so life consuming, something with an end in sight.

I'm feeling overwhelmed and unsure of what to do. I can't tell where one thing ends and another begins. Which of my symptoms are just Lyme progressing? Which are herx reactions? Which are depression induced? Which are created by power of suggestion? Which are reactions to the drugs I'm taking? I finish today's post thinking that just maybe... I should join a support group before I spin into total insanity.