I’ve decided that it no longer matters which disease I’m fighting. For so long, I’ve become wrapped up in finding out WHAT it is, rather than focusing on how to fix it. I’ve been focusing on trying to find a pattern, and the only pattern I can seem to find is that it just keeps getting worse. Whatever it is, it’s kicking my ass.
The thoughts in my mind are too loose, and trying to get it all down on paper is like herding kittens. I can’t think straight. All I want to do is cry, but I know that if I start I’ll never be able to stop.
A few months ago I would half-jokingly say, “what’s next, I won’t be able to walk?” I tried to picture the day that might happen. I couldn’t. I refused to. I was convinced that whatever this was, I’d have it all figured out and better before it got to that point. Now? Not so much.
Over the last couple of weeks — and more so the last couple of days — I’ve had a really rude awakening. The person I once was is gone. She’s dead and buried. As much as I’ve tried to come to terms with that, I couldn’t. Now it looks like I’m going to have to.
It started a couple of weeks ago, when I was house sitting. Actually it was the night after the Fourth of July, the night after the party Mike and I went to. (The one I went to wearing wedges, walking gracefully for the first time in my life. See what alcohol does?) That Sunday my right ankle ached a little. I wrote it off as a twisted ankle, considering the previous night’s shoes. I perhaps stupidly ignored the fact that the pain was awfully similar to the pain I get in my arms and sometimes my thighs and toes.
It went away — for a couple of days. Then it came back, and sometimes occurred in my left ankle, too. It came and went, and after a couple days I had to admit to myself that whatever was wrong with me was also now wrong with my ankles. I saw my PA on Friday and told her about it. She checked for pain and swelling, to make sure I really hadn’t twisted it. Nothing hurt when she poked at it or bent it, but she did notice a slight swelling in the tendon next to my ankle — which she said could occur with Lyme Disease.
I’ve been tested for Lyme Disease before, and the blood test results came back negative each time. Pam said that Lyme isn’t always detected in blood tests, and that it’s a great imitator of other autoimmune diseases — which would explain my crazy grocery list of symptoms. She said she might just put me on the treatment anyway, but that she had to check with Dr. Mongelluzzo (the practice’s head doctor) first. I also got my second B12 injection, and we also discussed the possibility of sero-negative arthritis.
At home, I did some research. No other doctor had ever told me that Lyme doesn’t necessarily show up in tests. They had all just written it off and gone on to the next thing. I was pissed. “If it’s been Lyme Disease the whole goddamn time, and I could have had treatment and relief two fucking years ago,” I said to Mike, “I’m going to flip shit.”
Saturday I was supposed to go play miniature golf with Mike, Robbie, and Jaysa. I was excited, but by the time it was time to go my right ankle hurt so bad that I couldn’t walk on it much. I canceled at the last minute, and convinced Mike to go without me. Granted, I got to go see Harry Potter instead, but I still felt bad. Here I was, giving up more because of the Disease With No Name.
Sunday it was a lot better. I felt a little twinge now and then, but in comparison to the day before I felt okay. I spent the afternoon at the beach with my mom and sister and made plans to go to Lake Compounce on Monday with Lauren and Mike.
By the time we got to Lake Compounce, my ankles ached a little but not enough to stop me. We went on a couple water rides and I let them talk me into riding Thunder and Lightening (which was actually cool, even though looking straight down at the ground the first couple of times was a little scary). But by about 8:00, both of my legs were aching, sometimes sharply, with the pain radiating up and down and all over. I could barely walk. In line for rides, I leaned on fences. While walking, I leaned on Mike. I went from amusement park Indiana Jones to feeble old man in less than a couple of hours. As much as I wanted to ride my favorite, Boulder Dash, I could barely stand the thought of standing in line for twenty minutes for it.
So I made us leave. Even though it was the last thing I wanted to do.
The walk from the park exit to my car was beyond excruciating. I’ve always been good with words but the closest I can come to describing it is saying that I wouldn’t wish it on anyone. I literally look teeny, tiny baby steps, shuffling at Mike’s side while Lauren tried to slow down and stay with us. People kept going around me. I think the old people were even moving faster than me. I kept joking about maybe stealing someone’s stroller, or where was that security van when we needed it, but I honestly don’t know how I did it. I remember thinking at one point, “wow, this really fucking hurts.”
My only consolation was that it’s probably going to get a lot worse.
Meanwhile, I’m not noticing any difference from the B12 shots. Pam says if it’s going to work, I’ll feel a difference by the third shot. If anything, she said it would make me feel less lethargic. I think, if anything, I’m feeling more fatigued — even on the days when I get a lot of sleep.
Today I’m having a hard time smiling. Because now, to me, “what’s next” is not a joke. It’s a nightmare and my reality. Am I going to be in a wheelchair? Will I lose yet more of my independence — my self? I used to be able to carry things, play with my friends’ kids and little cousins, go hiking. I’m losing more and more of who I used to be.
On a totally different note, I will be blogging during Blogathon 2009 (July 25th) with Donnie of Voice the Silence to raise money for RAINN. Please read my blog post about this over at Scars Can Speak, and thank you for your support.
