I Don't Think This Fits In That Hole (that's what she said)

Excuses Excuses Excuses. I'm full of them for why I haven't posted anything in so long. To appease my own guilt, let me share them with you. My laptop was sick, and spent 2 weeks at the Geek Squad. That did make it difficult. But how do I explain all the other weeks? 4 letters, L Y M E. It was 3 months ago today I began treatment. Since then I've spent all but 5 days on antibiotics. Some days my stomach protests at the mere thought of another day of the big blue pills. But luckily I see a nutritionist for nutrition response testing treatment, and she keeps my stomach full of the good bugs to replace the stuff all the antibiotics kill. I look back to the day my dippy Dr called me excited to have a Lyme diagnosis. On more than one occasion since then I've wished she was wrong and it had been MS. I know there's a better chance of getting better from Lyme, but some days it seems it will never end. She told me I'd start to feel better in a few days. I remember telling work I hoped to be back after the weekend. 3 months later I'm in the midst of applying for disability retirement, Social Security disability and short and long term disability. I'm preparing to pack myself up to stay with Mom while I begin IV treatment (and severe herx reactions) and wonder how many thousands of dollars this is going to cost me. (I won't get into the politics of all the bullshit controversy with Lyme here, if you don't know about it and care I'll gladly tell you.) What I will say is that I'm fighting a medical and insurance system that treats my disease like a political hot potato. Because of that I never know from day to day what my insurance is going to cover and what I'm going to get stuck paying for myself.

So excuses excuses, here's the skinny of it all. As time has progressed, so have my neurological symptoms. Because of that I will be going on IV antibiotics soon. But a big part of the neurological side of Lyme for me is what's referred to as Lyme brain. A fog that sets in on your mind. This makes it difficult to write. Even when I have good ideas. For that reason I haven't even attempted to post something (until today), for fear of posting a less than quality version of what I really wanted to say. Some examples of Lyme brain:

1. One night I got out of the house for a while to visit Michele in Rotterdam. I used to live with her for a while in between living with Mark and renting a house back in Albany. I've been there many times. But when I got off the Thruway I had no idea which way to go to get home. I ended up on the Northway, heading the wrong direction towards Clifton Park. It took a while before I got my bearings and was able to turn around and head back to Albany. Some nights my own street looks completely strange and foreign to me. Luckily I have GPS. On days I get confused while driving, I hit 'home' and it tells me where to go. When this happens it's not at all like I don't know how to drive, I'm fully functioning, but I just can't recognize where I am. It's scary sometimes, but knowing what it is and that it's from the Lyme makes it a little easier to wait it out until things start to look familiar again.

2. A few weeks ago I was telling my friend Ginger about my spinal tap and how the procedure went. Every time my brain told my mouth to say spinal tap, it would instead say post it note. There's no rhyme or reason to it, but the message sometimes gets a little garbled before it hit my mouth. The other night I was talking about my first cat, named Snickers (he was orange and white and I got him on Halloween). But every time I thought Snickers I said scissors. The person listening looked at me a little strange but didn't question it until I finally admitted I couldn't say the right word. Some times it makes me self conscious, but 9 times out of 10 I try to laugh about it, and to get you to laugh about it with me. It doesn't seem so scary when you can laugh at it. HAHAHAHAHA

3. Emotionally I am way off kilter. The only way to describe it is like someone has a remote control for my brain, and I have no control over it. The latest manifestation of this has been tears. Lots of them. More tears than a virgin the morning after prom. Over just about anything. Some times it's self pity. I dont let that happen often, or remain for long when it comes. But sometimes it feels good to let those tears out for everything this disease has taken from me. But that's not going to get me better, so I have to focus on not letting those thoughts in. I'll never get better if I don't keep my head above water. But it's easy for me to get overwhelmed. Some days just planning a trip to the pharmacy and grocery store can set me into a tizzy of emotional responses and inability to concentrate on getting anything done. Because of that I have to really take things slow, and allow myself the time I need for any given task. Luckily I have an amazing support system of people who are very understanding of this. Like this week, on our trip to the nutritionist, Kathy saw first hand how quickly my energy can drain from me and it's hard for me to even have a conversation. But like the rest of my amazing friends and family, she accepted the fact of what it was and didn't take it personal. But it's hard on me when I feel like I'm not giving my loves ones the full me they deserve. But in all honesty, at this point I'm really just trying to hold on to any last bits of me that I still remember before being stricken with this disease.

4. Memory is not my friend right now. It's hard to sit down and write when you really don't have a handle on the past. I know this will pass eventually and I will get my memory and my mind back. But for now, there are big chunks I don't recall, or that are not at all familiar to me. I think of my job. It's been less than 2 months since the last time I worked. But for the life of me I really don't remember the specifics of what I did, or how I did it. It's an eerie feeling to think you did something every day and then could lose grasp on it. Again, it's a comfort to know this will not be permanent, but it is a strange sensation nonetheless. I'm afraid I'll end up posting a blog about a dream I had in the 7th grade as if it were real.

Okay, so enough evidence to support my excuses. Here's the skinny of it all right now, pretty much all you need to know to be brought up to speed.

I am still adorable, even with Lyme induced bald spots and weird facial ticks
I have a beard not as a statement, but because my face is normally too numb to shave. That's my fancy excuse for laziness.
I'm out of work until November at the earliest, but it does appear it will be quite a bit longer than that. My personal goal, and high hope...is to be back in January. Dr's are less optimistic of that, but I'm not giving up on it yet.
IV treatments will begin in the next month or two, all depending on when I get in to a specialist (and which one will take me). All the prayers good vibes you got will certainly come in handy that I'll get as much of this covered by insurance as possible.
To minimize costs with the outrageous cost of medicines and Dr's, I will be moving Nov. 1 somewhere cheaper.
When I get better I plan to publish a best selling Lyme memoir called "Are you there vodka? It's me, Lyme" a la Chelsea Handler.
After this ordeal I think I am going to be the first one to stand up for medical marijuana.
I can't not get better, I have too much support, too many people giving me strength through that support. It's not possible for me not to succeed at getting better.

It's certainly kicking my ass...but each day I wake up breathing I'm ahead of the game. I keep looking at the bad days, the painful moments, the emotional rollercoaster...all of it as just that moment. The unknown can be scary, but it can also be a relief...and for me, the unknown future is what holds hope for me that relief is ahead. I'm hanging in there, and hope soon I'll be able to have some words of wisdom for you all.