So, my iPhone calendar is being wiped clean after a month or so. I look back to check on an appointment or to plan something that should be a couple of weeks later than another date and there's nothing there. It's driving me crazy because I'm already having enough trouble with keeping up schedules, thanks to Lyme on the Brain. I used to be a master at it...work all day, go to a play rehearsal for 2 hours at night, go straight to a dance class, (come home, read till midnight and get up to do the same thing the next day.)
Now I don't know if I'm coming or going. I have the appointments with all our Lyme doctors stuck in my head, though. I don't even know when my hormonal cycles are anymore. I think they're off. But rather than becoming more spaced apart, as they should as a woman begins to gracefully age (!), they're coming closer together. I'm not having any more kids. I don't need this. I figure I spend a few hundred dollars monthly in supplies as it is.
So, why is everyone irritating me? I try to be a kind, good-hearted person, and I think that I am, most of the time. But I have very little patience for certain family members. My daughter hitting her head while cleaning her room, then crying because her back went out (which it never did before but I know how it feels because mine has, but not since she's been old enough to know, so it's not mimicry.) My husband who says he absolutely cannot cook 7 nights in a row. My kids who pick up my iPhone secretly and bypass the security code by hitting the camera feature, only to take 130 blurry, grainy, silly-faced pictures and videos of themselves.
I texted my son to let him know I'm putting the one of him saying he farted up on Facebook and tagging him.
I'm a good person. I didn't do that.
I'm not a good person. I'm writing about it.
Leave me alone, leave me alone, leave me alone, I want to scream from the rooftops.
I've got a gripe list. I'm sorry. It's ever so...negative. But here it is. Well, some of it.
The colleagues who started avoiding me when my son first got sick and I transformed from a smiley, jolly soul to an anxious, distraught one. Colleagues who are good teachers and care about kids (but apparently not mine.)
The friends who wrote me off (fortunately, there were very few of those) when my son showed these strange psychiatric behaviors that seemed to imply bipolar disorder, Tourette's Syndrome and OCD. The doctors to whom I just sent letters (thanks to a friend who created them, with footnotes and sources) explaining how they completely missed my son's diagnosis of PANDAS. Believe it or not, this was my new year's resolution. It's now October. I slipped a flyer for the upcoming Connecticut PANDAS conference in with the letter.
Oops. How to guarantee that doctor never shows his face there, right? Well, maybe they'll look up pandasnetwork.com or even Moleculera Labs.
Then there are those doctors who actually do believe in PANDAS but certainly not chronic Lyme Disease. After all, the CDC says that chronic Lyme Disease doesn't exist. And neither does the risk of Ebola in our country, right? Of course, right.
CDC = Criminally Defective Conglomerate.
I went for a bike ride today.
Beautiful autumn day with leaves on the ground, blowing across the path, through the woods and I wanted to turn around at half a mile. This is me, the bicycle rider, who was cycling 14 in one hour in June. If I were to graph my rides this summer, it would be downward in terms of speed and mileage. I did 9 miles today. Somebody passed me with his hands off the bars, just swinging along and I got mad enough to pull on everything I had, swing into gear, bring my bike up to 15 mph and pass him right back. Ouch. It hurt like crazy to stay ahead and not be passed again. I could feel myself breathing, could feel my right shoulder aching, the headache beneath my helmet. When I came to an intersection, I pulled over to wait for the friend with whom I was riding. Tried to look nonchalant as the guy passed me again (but hey, I was standing still--there's a difference.)
I'm resentful that laundry never gets done, that my back always hurts and I have to get others to carry the baskets up and down 2 flights of stairs for me.
Last night, I hosted a book club party and I was melting down before everyone came over. Me--having a party on a Friday night when I feel like crap? But it was OK. I actually enjoyed myself with some very nice (and funny) women. And I didn't have more than a sip of the wine. I slept well after.
And the last big gripe? Money. I work my butt off to do a good job, bring home what could be a decent paycheck if I lived most other places in the country and it doesn't go far enough. We can't keep up with the mortgage payments. We keep trying to pay off credit but get sucked into extending it. I don't buy all the supplements I should be taking.
There's always a positive, there's always a positive. Shut the he-- up, Pollyanna. Lyme affects much more than the brain and body.
So, do I leave us feeling blue?
Here are some good things, but not quite enough to fill my bucket today.
I just got my son's name added to a fund-raising PANDAS t-shirt. He's out tonight with friends at a football thingie. My family is planning on taking me out for a nice dinner to celebrate my birthday (and my husband's which comes shortly after) despite the fact that we'll have to pay off the credit card bill someday.... Still, it beats past birthdays.
The PANDAS conference is coming up and I'm excited about that (but have to start putting together the program and feel utterly overwhelmed by the smallest of things lately.) And we're planning a worldwide Lyme Challenge. I hope that between the CDC showing how inept it is and us spreading awareness, we will finally be taken seriously.
I think I'm just filled with everything I keep in most of the time. And I'm in pain a lot of the time. It's not horrible pain but it's pretty consistent, despite physical therapy for a few months.
In the meantime, I have my books. Take me away, to another place and time....