Friday, October 10, 2008

Even when I slept, I dreamt that people were trying to wake me up.

Wow, what a day.
Today was about… a 4, I’d say. But I was productive.
I have to write this out tonight because I already am losing the concept of what amount of time equals today. Before today, I’ve never EVER had a point where I seriously could NOT get out of bed. It almost felt like I was drugged or something—I couldn’t even tell if I was awake or asleep and dreaming; I guess that’s what severe sleep deprivation will do to ya.

I know that doesn’t make much sense, but I’m working with about 20% brain function right now, and I need to make sure I get some facts out for my future reference.

Last night (the early morning of Oct. 10, technically) I didn’t begin to fall asleep until 4 a.m.-ish. Bad, bad insomnia. But I told myself, “Okay, it’s not so bad. I have the day off school tomorrow, I can sleep in; it’s not the end of the world.”

But mom called me (earlier than I had wanted to wake up) and wanted me to go do something for her; got up, got dressed, task completed, back to bed, almost asleep, flinching and drooling— Ring Ring. Another call. The whole day was a miasma of near-sleep, half-dream-state where I was slogging through tornadoes, hurricanes, floods/mudslides, and earthquake wreckage in huge amounts of pain, interrupted by real-world phone calls for which I needed to utilize some brain power.

The Doctor Calls Saga:

I took my last dose of antibiotic today. My next appointment is five days away. My symptoms are getting worse. (Which is a good thing when relating to Lyme. It means some little bad guys are dying.)

Four days ago I phoned in a refill request to the neurologist who had prescribed it. They wanted to first consult the infectious disease doctor who I’ll be seeing on Tuesday.

I thought it had been worked out and taken care of. Went to the pharmacy the next day, nothing. Poop. Pharmacist is used to seeing me in there; took pity on me and gave me three pills to tide me over.

Two days ago I made lots of phone calls to try to get my schoolwork situation worked out. The counselor was TOTALLY nice and helpful, but there’s still basically nothing she can do if I don’t have any documentation. I need a doctor sympathetic to my plight to say, “Hey, she’s a dedicated student who is scheduled to graduate next semester, and you need to work with her to help make that happen.”

Yesterday, the neurologist’s nurse left a message that she was having trouble contacting the infectious disease doctor.

Today, due to mom’s prompting, I called my primary care physician’s nurse to see if they would do anything for me. Nope. (As I expected.) “We can’t usually give refills for things we haven’t diagnosed or medicine we didn’t prescribe.” Fine. Thanks. Have a nice day.

Then I called the neurologist’s nurse. She’s amazing. She’s gonna have a dozen roses and some chocolate headed her way petty soon.

She says, “Well, I finally got in touch with Dr. so-and-so’s office. They declined to comment on whether you could have a refill or not, so we can’t really give you anymore.”

Me: “Well that’s a POSITIVE sign.” (Note the sarcasm.)

Nurse: “Have your symptoms gotten any better?”

Me: “No, not at all, in fact, they’re getting worse. My appointment is only 5 days away. I feel like if it was serious enough for Dr. Neurologist to prescribe some antibiotics, that I should probably continue on them until we hear otherwise.”

Nurse: “Oh, I’m so sorry you’re feeling so bad. I didn’t know how your symptoms were doing. Well…”

(I can practically hear the wheels turning in her head.)

“I think we could give you five days… but…”

(I’m praying really hard right now.)

“Here. I’ll just call in 30 days to your pharmacy so that your co-pay can take care of it. And then if he wants you to stop it after your appointment, you can.”

Me: “You rock! Thank you so much.”

So. I have more doxycycline in my possession. And an appointment on Tuesday. And a school counselor that is willing to work with me if I can get a doctor’s cooperation.

Tomorrow I’m either going garage saleing (riding in a wheelchair is starting to look REALLY appealing to me) with Ariel for things for her house, or I’ll be doing butt-loads of research and making a bunch more phone calls getting ready for the upcoming appointment, or probably both.

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