Thursday, February 14, 2013

Oops! I Did It Again!* aka Over-Scheduling For A Sick Momma

I guess I took a sick day yesterday. Sort of.

I didn't mean to, but I guess my body knew what it needed and overruled my brain that had over scheduled me. (Actually, even my brain knew it was a bad idea.)

It's been a crazy week, and getting crazier every day.

It started on Sunday when I finally decided that I couldn't keep sending my kid to school in boots that were falling apart. And she's been insisting she wants jeans, after years of telling me she didn't. So we hit Target looking for jeans and boots. And struck out.

So we went to Sears, where I had to return a dress I'd ordered from Lands' End that didn't fit, and looked there. We found the boots, but again struck out on jeans, and called it a day. An exhausting day.

We also discovered we had lice. Again. (Have I mentioned recently how awesome it is to have a school-age child?) So that meant that my stay-at-home, recover-from-the-weekend-and-gird-for-the-coming-week Monday was shot because we visited the fabulous ladies at Lice Knowing You in Beaverton. Thankfully, we caught it much earlier this time and the bill was far lower than last time around. It didn't help that I couldn't fall back asleep after Scott got up at his usual 5:45 a.m. because my neck itched. So it was a long, exhausting day instead of a recovery day.

On Tuesday, I had acupuncture (thank goodness!) and then had to pick my kid up from school to take her to a Hebrew tutor. The downside to leaving a Jewish day school is having to figure out how to get your kid a Jewish education when a normal three or four times a week after-school religious school doesn't fit into your schedule. Sigh. The upside is her beloved Hebrew teacher from kindergarten and first grade agreed to tutor her. And Ellie was soooooo happy to see Morah Devorah again.

So when my alarm went off on Wednesday morning for me to prepare for a visit to my immunologist, apparently my body said, "Uh, uh!" I woke up two hours later, ten minutes before my appointment at his office that's at least 20 minutes away. So I called to see if it would be possible for me to arrive 40 or so minutes late (I had to get dressed! Take meds! Eat something!), but his schedule was booked so they kindly rescheduled me for next week.

Which meant I got a jammies day at home, which was just what my body needed.

And that's good, because my week is only going to get crazier because Scott is headed north for a roller-skating competition on Friday morning and won't be back until Monday afternoon/evening. While I'm pretty used to occasional solo weekends, this will be my first solo parenting weekend. (I got my first solo parenting in last summer when Scott went to Nationals in Lincoln, Nebraska, but that had the benefit of being on weekdays when Ellie spent all day at camp.)

I feel like I'm almost faking my way as a "normal" soccer mom this week: Out of four days of school, I'll have picked her up three and taken her somewhere. And today, on her first solo school bus ride home, I was waiting out on the driveway when the bus dropped her off. In my jammies, but I was there. :-) It counts, right?

But although I've managed to keep most of my balls in the air so far, it's clear that I can't maintain this schedule for long. :-/

I'm just aiming for long enough.

Wednesday, February 6, 2013

Chronic Illness Has Its Own Language

One of the most overwhelming things when I first got sick was all the medical lingo I had to puzzle through.

I consider myself fairly well educated, and during my days as an AP reporter, I had experience translating complex jargon (whether medical, scientific or government-ese) into English that the average newspaper reader could understand.

But when my brain was fuzzy from that onset of illness and the meds treating that illness, I could barely formulate questions much less understand the answers the doctors gave me. And they threw so much at me with tests and diagnoses I'd never heard of.

Thank goodness for the Internet. It started with LabTestsOnline, and from there to the Mayo Clinic website and various other sites online. I picked up the lingo to the point that my mom and my internist started telling me I should go to med school. :)

I didn't realize quite how much I had learned the language until my first visit with a neuro-muscular neurologist. When he asked me what I understood to be the reason I'd been referred to him, one of the reasons I told him was that my internist thought he might be able to figure out why my anti-ganglioside antibodies were abnormal and whether that was to blame for some of my neuropathy issues.

The fact that I even knew the phrase "anti-ganglioside antibodies" floored him. And when I explained my understanding of what they were and what they did, he asked me if I had a medical background because, he said, he'd never had a patient before who knew those details. (I'm still kind of proud of that!)

In these days of 10-minute doctor appointments, when even good doctors have so many patients to see every day that they can't keep up with the minutia of every patient's chronic illnesses, it's absolutely crucial for patients to develop some level of medical literacy because we patients have to be advocates for ourselves.

Despite the electronic medical records that should be linking all my specialists and my internist so they can all be in the loop, I frequently find that reports haven't been sent or that crucial information was left out. I'm constantly asked to provide test results and conclusions/recommendations from one doctor to another. Without my files of lab and other test results, I would have had to repeat tests so different doctors in different  health systems could see the results for themselves. (Having a fax machine helps, too!)

I can't think of a downside to educating myself to be able to understand what's going on with my body and with my various health conditions. And I would not continue to see a doctor who didn't appreciate my efforts to do so. (Early on, I dropped a doctor who told me to stay off the internet and that he would tell me anything I needed to know. Clearly, the man was still living in the 1950s.)

And educating myself helps me feel like I'm at least a little in control of my health. I might not be able to cure myself or even avert a flare, but at least I can understand what's going on with my health and ask educated questions of my various doctors.