I Have a Secret

I have a secret.

I am vain about my hair.

Most people don’t know that about me.  It’s always tied up in a bun.  But it’s very beautiful, if I’m honest.  It’s long (usually) and curly and blonde.  Many people I have known for years haven’t even seen it!

That is secretly the reason I always wear visors at work instead of hats.  That way my hair will bleach, and I’ll have nice highlights.  But I would never spend money on such things as dye or treatment.

About every 18-20 months, I cut of 12 or so inches of my hair and send it to Florida for Locks of Love.  (They make wigs for kids with cancer and stuff.  Super cool.)  I had planned to cut it off in January, but my sister got engaged.  She said she wanted my hair long in her wedding, so I waited until after the wedding to cut it off.  Just a week ago, I cut off 15 inches!  That’s as long as I’ve ever cut off at once.

A friend of mine cuts my hair.  We usually trade.  I watch her kids, and she cuts my hair.  It works out well, and she does a great job.

While she was cutting it this time, she was having a hard time getting it even on both sides.  After looking around, she figured out why.

My hair is falling out.

On the left side of my head, there are two bald spots about the size of nickels or quarters.

When she showed me, my heart sunk.

I have thin hair anyway, and I know that losing hair/balding/thinning is common with lupus.  I’m not surprised it’s happening.  But I guess part of me was just hoping it wouldn’t.  Or at least not now.  When I’m old, it’s fine.

Now I join the ranks of thousands of women with lupus who, along with a myriad of other problems, are losing their hair.  And losing it in patches, nonetheless.

My secret isn’t so much that my hair is falling out as that I care so much that it’s falling out.  But now you know both facts.

I guess that’s all I have to say on the subject.  I was really disappointed about the whole thing.  But it’s just hair, right? 

Loss of Brain Cells

I’ve been feeling pretty well for a while. Weeks, actually. I’ve been feeling like a real, live person. I’m not exactly sure why, but that’s for a different day.

But lately, the last few days, I haven’t been feeling so well. I took two 5-hour naps this week. I don’t know about you, but I don’t have time to “nap” for half the day. The pain is back. I can’t fall asleep (ironic, I know.) My eyes are having trouble.

But the worst part, at least today, is the loss of brain function. Last night, I was working on something that I have done hundreds of times, and I ruined it. It is sort of like writing a 25-page term paper and deleting it all with no backup. Or rebuilding an engine, getting it all finished, and realizing you don’t have the right parts or did it wrong, and you can’t start the car. It was rough.

We recovered as best as we could. This morning, I was feeling pretty confident that it was all taken care of. Then, during a live “show,” about 15 things went wrong. Some of which was my fault and problems from last night. Some of it was actually problems with the technology I was using. It was so weird. I could not for the life of me figure out how to troubleshoot and fix it. Again, I’ve done it zillions of time, and I know how to do it. Not today.

Sometimes the worst part of having Louie around is when he takes away my brain cells. I need those. I’m old enough now that I’m not growing new synapses.

One of my good friends has Lyme disease. It’s literally attacking her brain. For Christmas, I found her some stuffed/plush brain cells. (I thought it was hilarious.) I guess I need some too.

(It proves I've lost some brain cells. Just the fact that I started two paragraphs with the word "but." Don't tell my English teachers.)

Don't Do Drugs

“Ceila, go grab me some tissues please. Right away.”

I said this to one of my dear high school students who is being a ninja for Christmas with me. I could feel it coming: a nosebleed. The kind that comes on suddenly and randomly. The one that may last for 20 or 30 minutes. Possibly even throwing clots.

This was not a good time. I was in the middle of a crazy Christmas rehearsal. I had people talking to me from all over the place. I had 20 musicians, 4 ninjas, and several technicians and a producer relying on me. I didn’t have time to sit in the bathroom leaning over the toilet until my nose decided it had run dry. Sometimes I'm jus too busy to have side effects.

Ceila brought me a box of Kleenex. How could she have known I’d need a whole box? I was several tissues in before she realized what was going on. (The boys were still oblivious.) I blew out as much as I could, standing near the garbage can to leave my bloody mess there. When it had slowed down somewhat, I rolled up a tissue and stuffed it in my nostril. Ceila said I needed a nose tampon. (Have you ever seen “She’s the Man?”)

I kept the box of tissues nearby for the rest of the night.

Ceila and the boys asked if I got hit in the face or if it was just random. Random. I looked her in the face and said, “Don’t do drugs.” Meds. One of the side effects of several of the prescription meds I’m on to help me feel better is nosebleeds. Does this make me feel better?

Ceila and the boys, my dear high school students, and I have been discussing what they are and aren’t old enough to do. (Read: what I am old enough for them to do.) Using the word “sexy,” for instance, is not something I’m ready for. Their graduation is another. While at a drama rehearsal a few months back, I told Ceila that moving away for college causes pregnancy. Maybe I’m a little overprotective.

I told them that doing drugs causes nosebleeds. Don’t do drugs, I explained. I wonder if they’ll listen.

Chris, on the other hand, is a different story. Chris has lyme disease. He is the same age as Ceila and the boys. I tell him all the time to take drugs. I guess it’s all relative.

Good Pain

I never work out anymore. I’ve never really enjoyed it that much, but now it wears me out way too much for it to be worth it. Twenty minutes of light exercise wears me out, and I end up needing a 3-hour nap. My doctor actually gave me permission to not exercise if I’m going to have to pay for it later.

But I’ve been doing physical therapy, and my therapist, Juan, has been having me do some exercises. (I guess that’s his job.) About two weeks ago, we were working on some things. He told me I’d be sore the next day. Actually, he told me it would hurt when I sneeze. This particular exercise involved whopping 4 pound weights.

For the next two days, I was sore. But it was a good sore. It was the first time in a long time I hurt from doing something. It was a good pain.

I guess part of me misses that. Either the pain-on-purpose or pain from working out made me a little happy. Sometimes pain can be good.

The Color of Pain

I am a lighting designer. I love doing lighting and playing with all the various colors. Several years ago, I went to a marching band competition and closed my eyes to listen to the music. All of the sudden, I saw the music in color. “I see music in color” because sort of my tagline.

A few months later, I was playing with magnetic poetry and made this little diddy. (see photo)

Lately, I’ve been doing physical therapy on my

knees and my back. Whenever something hurts, Whahnn, my therapist, asks me what it feels like. Sharp, dull, pinching… What I’ve noticed is all I ever think is, “It feels blue.” “It’s purple.”

Apparently I see pain in color too.

Is that weird? Does anyone else associate pain that way?

Just Focus!

I had two appointments in the last week that didn’t go as planned. I’ll share them with you one at a time, so you don’t get bogged down. Neither of them were terrible, relatively speaking, but both of them had unexpected outcomes and left me a little down.

I went in for my Plaquenil screening like a good lupus patient. When on the drug, you are supposed to get your eyes checked every year because it can leave deposits on the retinas. If caught early enough, it is reversible.

Going do the optometrist always makes me nervous. I’ve never had any problems with my vision, and I can see better than most people. Plus, for my job/hobby, all I need is my eyes and one appendage that moves.

Like normal, I did the field vision test. You know, the one with all the little dots, and you hit the button when you see them. I did my left eye, and the MA said I did it in record time. (The longer it takes you, the more you missed. If you miss them, you have to keep coming back to them over and over.) I did my right eye, and that was faster. One down.

Next was the color test. As a lighting designer, this one makes me nervous. What if I stop being able to distinguish colors? Even just a little change could make a difference in my craft. After finishing this one, the MA asked if I was racing someone. Deep breath. All done, and very quickly.

I sat in the second waiting room for a bit, then went in to do the normal “read the letters” test. Oddly enough, my right eye had a hair of trouble on the bottom line. I think I missed one letter. (I know, I know. Tons of people can’t even hope to read the bottom line. I’ve just never had a second guess before.) Then she dilated my eyes, and I waited.

Oddly enough, while I waited, I got really uncomfortable. I put my feet up on the doc’s little circle chair. I can only sit in a chair for a matter of seconds before I go crazy. Apparently, my blood pressure is too low to actually get enough oxygen to my brain when I’m sitting. The doc made a face at me when he walked in and saw me using his chair in this manner.

He did the standard tests, adding a few he hasn’t done before. I started to get nervous. We talked. I asked questions. Why don’t my eyes get unblurry very quickly after I close them hard? Why can’t I keep them focused when I’m tired? Why all the extra tests?

He answered me well, but not as I’d hoped.

My vision is going. Slowly, but going. Glasses will be on the docket soon. Damn. Over the next few years, things will get blurrier, and I will join the ranks of those who can’t find their glasses. My eyes are the only part of my body the consistently work and don’t give me trouble. My fail-safe is gone.

But there aren’t actually any physical problems with my eyes. I haven’t done much research into how the eye works because I ever thought I’d need to.

Here was the other kicker: I can’t focus my eyes when I’m tired. I asked the doc about this.

Well, he said, when the fatigue gets bad, you don’t have the energy for the little tiny muscles in your eyes to work.

You’re kidding me. I’m that tired, that tiny eye muscles can’t get the energy they need. Is this normal? I am so screwed, I though.

Then I think back. I’ve noticed that it takes energy to focus my eyes, and I can almost see my energy meter draining when I do. On top of that, I’ve had trouble smiling for pictures, as if the amount of energy to activate my face muscles was too much.

Still, no one can tell me why I’m tired.

What does this mean for the future? What does this mean for when I’m thirty, or forty, or twenty-seven?

More unanswered question. More loss.

I would love to end this with something like, “But God continues to be faithful, and He will take care of me.” Yes, it’s true. But it’s hard to imagine right now. All I want to do is be done being sick. Or at least be done being exhausted all the time. Really, what I think about is that in heaven, there will be no pain, no fatigue, no blurry vision. Just Jesus.

Until then, I wait. And let’s face it, I’ll probably fall asleep in that waiting room too.

Two Big Purchases

I made two really big purchases today.

The first one I made was a camera. I have wanted (and at times, not wanted) a DSLR for a very long time. I love taking pictures, and my point-and-shoot is amazing, but the flexibility of a DSLR is what I wanted. So today I took the plunge. (This has nothing to do with lupus, chronic illness, drugs or anything else that usually appears on my blog.)

The second thing I bought

was what I’m affectionately calling my Fourbanger. It makes me laugh just thinking about it. Today, I purchased a pill box with FOUR (count ‘em!) slots for each day. I finally did it. (Another thing I’ve been thinking about for months.)

I got sick when I was 19. A few months after I turned 20, I bought my first pill box. I was going on tour and taking 10 or so pills a day. (Maybe more, I can’t remember, but it was a lot at the time.) You see, I was recently diagnosed and heading out on tour. It knew it would be a pain having all those bottles in my bag, so I got a box in order to leave my bottles in the bus with my extra stuff and reduce clutter. Also, I was new at this and a pill box is way more inconspicuous than a bunch of bottles.

Now, I’m taking close to 40 pills per day, and they just don’t all fit into my regular 2x pill box. Some of the pills are large, and there’s just a lot of them. Plus, with so many, oftentimes in the mornings, I get overwhelmed and do

n’t want to take any of them. I really like only taking my pills twice a day, but having them spread out a bit might help. For instance, I can take some of them first thing, then take the rest of my morning ones after breakfast. Or after my morning nap. Or whatever.

On Sara’s blog a few weeks ago, she had a poll about how many pills you take. My favorite answer was “you can fill 3/4 cup.” I think that’s me. In fact, I’d love to weigh my pill box sometime just to see how many ounces (pounds) of meds and supplements I take each day.

Thanks for celebrating with me on my two big purchases!