Innnn to the bargain bin...

Well, I've been wanting to write all night, but my hands have been especially hurting tonight, along with everything else really. Everything has ben progressing so fast over the last couple years, then months, then weeks, and now days and even hours. Good and fairly normal moments come, but then I have unbelievably abnormal moments in between. I've had strange little ticks (not the bug, he's long gone, but neurological ticks) mostly facial, but tonight my feet were practically tap dancing without my being able to stop them. This came after a full body episode. My head felt like it was on fire, I had heart palpitations, I broke out into a sweat, and I started having strong shooting and stabbing pains from my abdomen and lower back down my legs. Tonight it was so bad that I just laid on the couch and cried and waited for the pain killer to kick in. I am trying not to 'suffer' with the pain. I try to acknowledge it, observe it and do what I can to not tighten up more and add to it. Sometimes this is easier said than done. But, I will continue to do so. And, thank God for the painkillers when they work.

Another lovely and attractive symptom that I have been experiencing is 'hand cramping'. I don't know how else to describe it. My hands just stick in funny positions and stay like that for hours at a time. I can slowly move them, make fists, and mindfully relax them. But, the minute I put my mind to something else they pop back into their previous position. This has been going on for weeks, so a handful of my family and friends and many strangers have witnessed this. I had a friend say to me with quite a smirk "Just don't go to Salinas like that"... Well, you've gotta laugh.

(Did I mention what a sexy disease this is?)

For those of you who don't live around here, Salinas has a lot of gang activity. You don't want to throw the wrong hand signals while driving through.

The more I learn about this disease, this invader of my body, the more outraged and saddened I am. And, the more determined. There is a lot of corruption in medical politics. In ways I didn't think possible. I will write more about this soon. I need to get the wording right. I'm not ready to go there in specifics yet. But, if anyone would like to get more information, please watch the incredible documentary Under Our Skin. I have a copy if someone would like to borrow it and will actually watch and return it. It won many film festival awards and helped (I believe whole heartedly) save my life. It was a beautiful friend of mine, familiar with this documentary and the battle with Lyme disease, that helped get me to the right doctors. Everybody should have this knowledge. Everybody. It's about more than just Lyme disease.

www.underourskin.com

When a family member got the news that I have been diagnosed with chronic Lyme disease, she sent a book she had just read. Strangely, Amy Tan (author of The Joy Luck Club & several other books) has just revealed in her memoir that she has Chronic Lyme Disease. She talks a little about the politics and this disease.

This is not as rare as you may think it is.

We have been pumped full of false information. I read the chapter she wrote on Lyme in her life. It was so familiar. I couldn't believe it. I could have written so many of her sentences almost verbatim from my personal experience. I had to stop mid chapter because I was having 'an episode' and couldn't focus my eyes or hold the book up. Apparently my feet were ready to tap dance. After my performance, I finished her words. I cried. There is so much relief in knowing what this is and yet so much fear in all the unknowns. I let go of fear, I return to trust everytime I feel it. Sometimes I do it several times a day. Every case is different. Some people get almost 100% better, some people continue to decline, many women develop MS, many people have irreversible damage, some are better, but not for years. After starting treatment, everyone seems to get much sicker before they get better. That's due to something called the HERXHEIMER REACTION http://en.wikipedia.org/wiki/Herxheimer_reaction.

I had to stop typing just now and put my hair up. Why? Because it smells like feet or garbage or something rancid to me. Yes, even though I just washed my hair and my Mother says it smells like shampoo, it smells nasty to me and makes me feel nauseated. A new symptom on board I guess, an olfactory issue. Many things just smell awful to me and shouldn't. I need to ask my doctor about this. I'm sure it's another neurological symptom.

So, on to the bargain bin. That's where I landed today. I'm desperately trying to hang on to all the normalcy I can. I can pull it off when I'm having decent days. The first part of today was pretty good. And, I am grateful for that.I had just done some shopping at Border's after my Griefbuster's assignment, had my yummy cup of coffee in my hand and was looking for my friend after paying for my items. Now, I'm not exactly sure what causes this, but I have been falling down a fair amount lately. I've always been quite a klutz, but this puts my klutz skills to shame. I usually get a shooting pain through my lower back, followed by what feels like some sort of spasm, and then I have trouble using my legs briefly. I thought my friend was over near the front of the store, so off I went. I was carrying my merchandise bag, my purse, and my coffee, when one of these attacks came on suddenly. I tried to step through it, but it became clear pretty quickly that I was going down, like it or not. I tried to grab onto the Bargain Bin table to stop the fall, but it only slowed it down slightly. I did manage to set my coffee cup on the table before landing in a heap on the floor. I looked up horrified into the many faces of the afternoon Border's crowd. Two large men were sitting in chairs reading magazines about a foot from me. I watched them watch me fall, my version was in slow motion. Their faces were priceless. One of them looked concerned and kept asking if I needed help. The other just looked at me with a suspicious, judgmental look. I really think he suspected drugs. Umm, no sir, just the kind that turn everything orange. No fun there. I knew I couldn't get up right away. That just seems to be how it works. So, I sat and waited while people stared at me and I did everything in my power not to cry. I was sitting on my butt with my legs out in front of me, I knew I had to flip over onto my knees in order to get up. I must've looked like a mentally delayed person trying to attempt yoga or stripper moves. I was just trying to get up on my own. The (nice) big guy kept asking me if I needed help and I just kept politely declining, smiling and twitching.

My friend arrived after the great spill had been cleaned up, but could tell something was wrong by my face. "What happened?" she asked me. "Nothing, just a little one of those episodes like last night by the fire, no biggie" I put my sunglasses on and tried to walk out of the store smoothly. Just as my eyes where beginning to spit orange onto the back of my dark plastic glasses, the humor of it all saved me. I went into hysterics. I could not stop laughing! The whole thing was quite comical. I kept playing it over and over in my mind. And, I laughed on and off for the next couple of hours. Loud, bottom of your stomach pit roars for moments. It felt so good. We all take ourselves so very seriously. That experience didn't & doesn't have to be humiliating, it's funny, it's material. So innnn to the bargain bin I flew... and came out happier. On another bright side, had there been damage to the $1 books in the bargain bin, the cost would've been low.

I was pondering many things this evening and one was this ~ I wonder if some of us have to get ill to remember that we are worth healing and being loved. ~ I do believe that's the case for me. I'm learning to love myself and be gentle with myself in ways I never was before. I have to love myself and be forgiving of my body if I'm gonna get through this. After years of fighting suicidal feelings and doubting myself, I finally have a sense that I really do want to be alive. I like who I am. I want my body back, I want my life back. I deserve it, too. And, I have things to do.

I don't want this disease, I wish I could change my circumstance, but those shadow teachers sure do reveal a lot of light. The greater the challenge, the greater the opportunity for growth.

Much love to any reading this. xo

Disclaimer- I am having problems with my new moments of dyslexia, word swapping and spelling because of the cognitive stuff. I caught several things and ran a spell check, but some probably snuck through.