Sunday, April 26, 2009

Groovin' on a Sunday... morning.

(I've just been working, sleeping, and doing chores - some of those more than others. So no photos to share of yours truly. If I had any they would probably look the same as this one but with worse bed hair.)

Monday, April 20, 2009

Life continues. First I worked one day in a week, then two, then three. This week I'm going for five! I told my parents and sister I worked all last week so they would stop telling me I'll get fired. I'm still waiting to hear from the specialist about when he'll take my $500 and deign to see me. Under HR's suggestion, I've applied for just about every program available to people in my position: Family Medical Leave, California Family Rights, Medical Leave of Absence, Short-Term Disability, you name it. If I'm approved for all these things, my job and paycheck should be protected. Any promotions, on the other hand - well, I'll wait until they're handing them out again before I worry about that.

I've been resting a lot since my crazy Hollywood weekend. Sleeping a lot, not too much physical activity, taking it easy at work (learned the hard way to take the elevator not the stairs!). I feel better but I have been BORED! Can stay energized for longer periods of time. Most of the pain has faded. I no longer want to die. I feel like that's real progress. My tiredness comes and goes; during down time like meetings if I hold perfectly still my body will go numb (it sounds scary but it's actually relaxing, like sleeping from the neck down). Other than that my main complaint is that my hands shake and my muscles sometimes twitch. Is that not supremely weird? And annoying. I look like the neurotic spaz that I am.

Now I'm debating whether I should slowly increase my activity and hope for a commensurate increase in health while risking relapse, or stay on the slow going in hopes of a more complete recovery. Knowing me, when I'm feeling better I'll get excited about something, overdo it, and land myself back in bed. But I know so little about how this disease affects me, at least that will be a data point. Gotta stay positive.

Tuesday, April 14, 2009

Weekend Cheeriness

This weekend I had a wonderful and much-needed break from the hum-drum of illness and boredom and hosted a visitor from long ago, Travjohn. We ran around on committees together at Rice. We lived in adjacent stairwells. Our roommates married each other. But we'd been out of touch for quite a while.

The party started Friday evening at Hermosa Beach Pier, where we looked around a little before dinner and sunset on a restaurant rooftop. We shared many many stories.

Saturday we headed Hollywood-way. We had a picnic breakfast in Griffith Park, which affords a great view of the "Hollywood" sign. I even wore my Hollywood sunglasses.

After that we went to Rodeo drive to spot celebrities. Didn't see any of those, but did see plenty of Bentleys, Maseratis, and Ferraris. Travjohn "fit in" with the local crowd.

We drove around Beverly Hills for a while and looked at the huuuuuge houses, some beautiful and some not-so-much. I spotted a Tesla, and now finally know who buys those things. A little more touring around the area, then to Venice Beach, where we spotted crazy people, dogs, and vendors of every useless product imaginable.

At night we saw "Observe and Report" at Grauman's Chinese Theater. The movie wasn't so good - it had its funny moments but it was also way over the top. For instance, there was a scene where Seth Rogen chases a flasher through the mall for WAY longer than necessary, with full frontal nudity in motion and everything. As the credits were rolling, I noticed the guys in front of me high-fiving one particular guy. On second look, I realized it was the actor who played the flasher! We finally had our celebrity sighting (and we saw a LOT of him)!

After that, we walked up and down Hollywood Blvd looking at the hand/footprints, stars, and impersonators. A Storm Trooper referred to me as Julie Andrews (don't know why), then I stepped on Julie Andrews' hand print, then on her star, all by accident! Travjohn and I also realized that we had some resemblances to celebrities ourselves. Check it out!

Sunday we drove through Long Beach down to Orange County and had lunch in Newport Beach. Sadly, that was the end of our visit. The weather couldn't have been more beautiful, the sights nicer, or the company better.

Blog therapy

I am sad today. So I thought I'd retire to the balcony for some fresh air and therapeutic blogging. It's a little chillier than I expected, so I may soon retire inside for some fresh air and therapeutic blogging.

If I have the energy, I'll make two posts today, one sad and one happy. This is the sad one. You can go on to the next one, I won't be offended.

It's a singular experience to feel like you've fallen through the cracks of the medical system. I am still suffering from an uninerrupted bout of the malaise I was bewailing in Detroit (for those of you doing the math, it's been over a month I've been feeling like this). The doctor found a virus with few links to my symptoms. The more I try to research it the more confused I get. There is no cure and few (highly-debated and highly variable) treatments. Most of the medical community doesn't even believe the disease exists in this supposed form. Most infectious disease specialists won't see me, and the one internationally-acclaimed specialist who might help wants a $500 to see me before Sept 29. I've missed so much work I worry about the stability of my job and HR still doesn't know how to handle my case. I spend most of my time in bed and am lonely. I had to drop out of choir this season. If one more person tells me to eat better (or the same person tells me one more time) I will politely jump off a bridge.

I know people have suffered much worse than this, and for much longer. I'm trying to keep a positive outlook, but it's difficult. I won't die, but don't know what to do, what to expect from the doctor and if it will be covered by insurance, or when I'll feel better and for how long, and that's a serious weight on my shoulders. I'm glad I have friends who love me.

As you will see in my next post, I had a visitor this weekend. It was planned before I knew my illness was long-term, and I went through with it because I wanted to see him and hoped some good company and fun times would cheer me up. Cheer me up it did, but it was also taxing on my system. We went slowly and took frequent breaks, but I got sicker and sicker until by Sunday I was hardly functional, nauseated, and in serious pain. So don't be confused at the apparent conflict between that story and this.