Lyme Blog

I keep a Lyme journal on MDJunction in a support group. Nothing too fancy, but I didn’t want my blog (when I have days good enough to blog) to be all about Lyme disease. The hard thing is that the last 2 months (it’s been 2 months since diagnosis, 3 months since getting so sick) it seems everything in my life has been about, or revolved around Lyme disease. Makes it hard to have much else to say.

Writing has been hard for several reasons. Most of all because I quite often have a thought, and then lose the thought forever. It is beyond frustrating. I try to keep note books and post its throughout my home in order to write things down, but sometimes I can’t make it in time. The other hard part is I have trouble with words. I get close, but then just can’t think of the word I want. That tends to cause me to use descriptive words like “good, nice, bad” instead of being able to properly portray with words what’s in my head.

I’ve also begun working on a side project, about Lyme disease. When I have moments of clarity or strength I try to steal away to work on that project. I’m hoping with Penny’s magnificent help it will quickly be a best seller that I can use to finance my very expensive upcoming IV antibiotics.

So here goes the quick update of things. I had 6 really bad days, and then I had 6 good days. (One of which the best I’ve felt in weeks.) Today has not been good, it has not been bad. I’ve had ups and downs today, but have made it this far able to write down a few thoughts and enjoy some hiphop jazz.

Mentally is a struggle. It’s a struggle with the wonderful hot summer weather, seeing my neighbors leaving in bathing suits, returning with sunburns, as I lay in bed watching TV Land marathons of Married With Children. It’s a struggle each day to not get lost in my own mind or in self pity. When I start to get down I like to go out and find homeless people to make fun. It makes me feel better about my own problems.

Physically each day is a new adventure. I’m going to start a gambling ring based on the concept of “what hurts today”. Kind of like shooting craps, only instead of picking a # you pick a body part. If that part is in pain that day you win the jackpot. Only I don’t have a jackpot to give. I’m working on that.

I twitch a lot. Sometimes my muscles tighten up and my hands become claws. I have neuropathic pain in my arms and legs, my left thigh beats to a rhythm only it can hear, the whole time making the fat on my leg shake one beat off. Arthritis comes and goes and moves from wrists to backs to knuckles to elbows. You just never know what’s gonna hurt when.

On the plus side I seem to be breathing better, sleeping better, and have had an appetite finally for the past few days. Every little thing is an accomplishment.

I’m supposed to be returning to work this week, but it will be at least another month. I just had my spinal tap yesterday (really went well, I’ve yet to have any pain or headaches from it), so will get those results in a few weeks. That will determine what course of IV antibiotics I’ll be going on, and also for how long term they will be needed.

It all blows chunks but what can I do? I face each day as just a day. 24 hours. 24 hours that can easily change, easily and drastically. But regardless I know after those 24 hours I have another chance for those 24 hours. Each day I have hope for the next. And I take each bad day as nothing more than a bad day. It’s not a setback, it’s not me getting worse, it’s just me being sick and I hang out in bed thinking of funny things to tell my friends because laughter is the best medicine. (Xanax isn’t so bad itself.) Speaking of Xanax, it all doesn’t seem so bad writing about the atrocities of a day in the life of a Lymie after an evening pre-sleep dose. And on that note, it’s time to take the rest of my medicines, supplements, liquid supplements, nutritional gel concentrates, and a donut for good measure and call it a day. I have high hopes for tomorrow.

I give today a C+. Thanks for asking. :)