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!

Louie's Getting Older

I’ve been having a hard time lately. This whole idea of being. Every day. All the time. Forever. It’s been a little harder to swallow these last few months.

After pushing everything way too hard for about 6 weeks (due to work, loved ones in the hospital, school…) I had my worst flare ever. This was in March, and I went on Prednisone later that month simply because I couldn’t focus enough to do my classwork and was about ready to drop my class. (The pain and everything was manageable.) My brain fog cleared and some of the pain is gone, but I feel like I haven’t gotten over it yet.

It might be due in part to a few bad doctor’s appointments. I saw my cardiologist, who is not my favorite doctor anyway, and he didn’t think there was any problem with anything even though my docs who I work with regularly thought there were things to be concerned with. I told him fatigue was my main symptom and he replied, “is that all?” Yeah. I can’t stay awake more than 6 hours and sleep 16 hours a day. That’s all. I did a tilt table test and passed out in 4 minutes without drugs. (Normally it takes a few hours.) He wasn’t concerned though.

Then I went to see a new doc, who is a chronic fatigue specialist. He’s fine and was well-prepared, but I left really discouraged. I think because he had nothing good to say, gave me a zillion more pills to take (I’m pushing 40 a day now, without pain meds) of if it’s because he talked to me like a sick person. Granted, I am, but it was a little off-putting. “This is caused from the stress of being sick and worrying about it all the time.” Things like that. In hindsight, it’s not that bad, it’s just not anything anyone else has said before. Basically, his verdict is that being sick is making me sicker.

The Justice League, my team of super-hero doctors- continues to quest for a solution. What exactly is the “and?” In the mean time, I continue to sleep through my alarm on a regular basis, sleep 12-16 hours a day, hurt most of the time, and I’m pretty sure if I die soon, it will be from choking… on my pills.

I think Louie has matured and gotten older. He’s no longer a baby, easily quieted with a little Plaquenil and an afternoon nap. Now he’s 6, and running rampant whenever he feels like it. I sort of dread the teenage years (which is funny because anyone who knows me knows I’d hang with teenagers rather than kids anytime.)

All of this just leaves me tired, and sort of worried, sometimes sad, unsure of what the future holds, confused, lonely. I want someone to help me, but no one knows how. I don’t want to talk, but I want people to understand. Are you seeing the flaws in this logic?

Maybe someday, they’ll have an answer. Maybe even a solution. Maybe.

Until then, it’s just me and God I guess. As if that isn’t way more than I could ever need. Tonight I was reminded that I offered my life to Him years ago and several times since. When I did that, I released control.. And, I offered it to Him for His glory. I believe, and have felt this way since the day of my diagnosis, that He can and will use Louie for His glory. People will see Christ through my life with Louie. That’s all I can ask for.

Who's Crazy

I’m sure I’ve written about this before, but I love the new Broadway show Next to Normal. It’s about a woman who is bipolar and her struggles with life and disease. In one song, she and her husband are asking the question: Who’s crazy? At my last appointment with Dr. Superman, I asked that too.

After an hour of discussing sleep test results and talking about more and possibilities, we were wrapping up. I asked him a question that had been burning since my last test results came up negative. One can only take so much exhaustion without answers before she thinks she is off her rocker.

I looked him in the eyes and said, “Am I crazy?” Just like that.

He clarified. Was I asking if he thought it was all in my head? Yes. Absolutely. That’s exactly what I want to know.

My wonderful doctor assured me that I, in fact, am not crazy. He would tell me if he thought differently. I have a lot of concrete things showing up time and again in my blood work. These point to… something… to be named later. He strongly believes there is something wrong in addition to Louie, but it will take some time before we figure out what it is.

Normally I don’t mind going to see this particular doctor, but on my way there I got nervous for bad news. I called my dear sister who let me vent and nearly cry. For me, the worst news would be either “You’re making it up” or “We have no idea and are out of things to try.” That is what I was dreading.

I left that appointment with a list of “next steps” that we will try, a list of possibilities for Louie’s little brother (or sister) and, most importantly, a peace of mind that I’m not out of mine. Having someone believe you is one of the biggest gifts, even if they don’t fully understand it.

And Options

I wrote about having an and. Lupus and… something.

I’m not talking about a small and. Some people with lupus list all sorts of other, smaller (to me) diseases, but personally, I feel like it’s all covered in lupus. Sjogren’s, Raynaud’s, arthritis… all of these are things that just come with the territory of autoimmune. These things have all been brought up in my appointments, but I really don’t care to have a diagnosis of something small that they can’t do anything about that really is just included in a lupus diagnosis. I have no desire to have a long list of ailments.

The nice thing about my lupus diagnosis is that it named the beast, yet wasn’t scary. My case is fairly mild as of now, is treatable- though not curable- and really isn’t as bad as some other problems and diseases. Plus, it’s probably not going to kill me. This makes explaining it to people much easier.

The and we’re looking for is not so small. My doctor mentioned a few things he thinks it could be and told me to do research. (I love that my doc encourages me to do my own research!) These diseases have words like “degenerative” in them. “Life altering and debilitating at times.” “Nerve damage… central nervous system.”

It makes me laugh, though, because there are so many similar things between the new possibilities and Louie. Occurs mostly in young females. No one knows what causes it. Can be “managed.” (I love that term. Manage. Sometimes I feel like I do a good job managing symptoms, but often I feel like just managing to get out of bed is a good step for me.)

I’m not going to divulge the information of the various possibilities. I don’t want the rest of you doing research and getting worried. For now, God is still God, and I have an amazing team of doctors helping me to figure out what is going on in my body. And they keep telling me I’m not crazy, which is sometimes just what I need to hear. I will continue to have faith that God will use these trials for His glory. And just as he said to Paul, “My grace is sufficient for you.” I’m going to hang out with that idea for a while and rest in His presence.

The And

As a kid, my mom always said, “No buts!” People don’t like “but” statements. But statements are excuses. People like “and” statements. And means more, and we like more.

I have an and. Well, I have it, but we don’t know what it is yet. My wonderful doctors are now on a quest to find out who and what Louie’s friend is. I now have lupus and… While Louie was evasive and hard to find, his friend is even more so. I have a feeling it will be a long search.

My doctors all say that I am more exhausted than any other lupus patient, and once I started sleeping through my alarm on a regular basis, I set the hounds on the scent again. [Sidenote: My brother, who is 10, sometimes wakes me up when I don’t get up on time. He decided that it is so hard to wake me up that it would take “an elephant and two ten-year olds.” Interesting observation.] We are back to the drawing board diagnostically.

Fortunately, we have already ruled some things out. I don’t have diabetes. (I actually had this tested long before my lupus diagnosis when my GP kept saying nothing was wrong.) I did a sleep study a few weeks ago, since they thought it might be a variant of narcolepsy. I don’t have narcolepsy or sleep apnea or any other sleep disorder. (Though I got into REM within 10 minutes, which is not so common and points to a basic need for more, deeper sleep.) I also scored 0 on my snoring test, which I could have told them.

Another sidenote: When you go to take a sleep study, they ask you lots of questions that are kind of silly. “Do you snore?” “Ummm, I’m asleep when I’m sleeping, so I don’t hear anything.” “Do you ever stop breathing when you’re asleep?” “Not that I’ve noticed.” “Has anyone ever told you you snore or stop breathing?” “How many people do you think I sleep with?!?!” I asked my sister if she’s noticed. Her response: when you’re asleep, I’m asleep. Duh!

It’s not a thyroid problem, anemia, B12 deficiency or any other deficiency. I’m just tired.

My doctor said that the fact that I get into REM so quickly means my body needs and wants more sleep. It needs to go into that deep, restorative sleep. Healing sleep. Probably having something to do with the fact that Louie is tearing apart parts of my body, so when I sleep, my body not only gets to rest from using so much energy to run my immune system on high, but it gets to repair any of the damage done by said immune system.

The doctors have a few ideas, and are going to do a few more tests before we move forward. I will keep you posted on the and.

It's Everywhere You Want to Be

Fatigue, that is. It’s like American Express. It’s everywhere you want to be.

I did a sleep study last week to try to nail down why I am so stinking tired. (They didn’t find anything, by the way, but that’s a different post.) During the course of my week, I found that fatigue has a way of creeping into seemingly innocent conversations.

After one of my torture naps, the guy came in and asked if I slept, if I dreamed (dreamt?), and if I remembered my dream. Yes, yes, and of course. My dream was about fly fishing. We continued to chat about fishing- he grew up in Montana and loves to fish. I said I really like to, but I don’t go as often as I’d like, especially ice fishing.

That’s when it hit me. Why don’t I go fishing very often? I’m too tired. My dad and brother get up early (like 7) to go, and I am just too stinking tired to go, or I know it will ruin my day and possibly a few days. I just can’t afford it. That fishing spoon, though I love it, is not one I can afford to spend.

Even when I’m not talking about Louie, thinking about him, or explaining him to someone, he crops up in conversations. He is the reason I do what I do, even more than I thought.

This begs the question- to what extent to I let him dictate my life? Does me having more control make him more upset? At what point is it worth it to fight with him?

Detox

I’m detoxing. Withdrawals and all. Most of the time I’ve heard that term used, it’s been for people who are serious addicts, often of street drugs or narcotics. Mine is not the same.

About 6 weeks ago, my doctor put me on a drug called Vyvanse. It is most often used to treat ADHD, but is also a central nervous system stimulant used to keep me awake. It makes my resting heartrate around 90 (normally 65 or so), so I was able to give a pint of blood in under 4 minutes! I kinda like it, as I can stay awake pretty well most days. A nice treat. But at the same time, several of my docs have mentioned that I am way too tired for a regular lupus patient. Thus, the search continues.

I went to see a new doctor to do a sleep study. He mentioned that I’d have to go off Vyvanse and Provigil (which I take as-needed in addition to the Vyvanse) for “a while” to let them clear my system. He hemmed and hawed and made it sound like it would be forever, but I only have to go off the for 2 weeks. He is doing two tests, and the other one requires that I don’t take Zoloft for two weeks. Again, he made it sound like it would be months, but I figure you can do anything for two weeks. That’s where I’m at now. One week in, one week to go.

For a few days, I was fine, then I started feeling pretty funny. I feel like I have electrical voltage going through my entire body. It continued to get worse, and today I called my prescribing doc to see what was going on. He’s one of my favorite docs, but he has my least favorite MA. I talked to her after trying to schedule an appointment and she said she’d call me back. A few hours later, she said she had talked to the doc and he said it was just from going off the drugs and I should take ½ dose every other day for 4 days, then stop, to wean myself off. But I am supposed to take zero during this two weeks for my sleep study. This is when the call dropped and I never heard back. I’m going to stay off it and just work through it until next Wednesday and go back on it first thing Thursday morning.

The odd thing is that I started noticing other detoxing symptoms earlier. Between going off stimulants and mood regulators, there’s a lot going on! (Plus add PMS into the mix! Especially since I don’t usually PMS much due to the Zoloft I take.

I have been super needy lately. Which mostly just affects my sister, on whom most of my need lands. Normally we talk once, maybe twice, a day, but this week, I’ve been calling her 4-7 times, easy. She’s been great about it, but I’m sure it’s driving both of us a little nuts.

I also totally have the munchies. I can’t stop eating! Pizza is the only thing that sounds good, but I also ate an entire container of rainbow chip frosting, too. I’m not so much hungry as craving food. Could be lack of drugs, could be PMS, could be emotional fatigue from the rest of life.

Fortunately, I’m not feeling the withdrawal symptoms that actual addicts have. I’m not craving a next hit or the need to get high or buzzed or whatever.

So I’m watching the House episode (I LOVE House) from season one called “Detox.” I wanted to see what House did while he was detoxing from Vicodin (much more severe than me, but I thought it would be interesting) and the patient they are treating is a young man, and they think he has lupus. Just another interesting factoid in this journey.

My new goal, medically, is to become an episode of House. Wish me luck!

Something Familiar

I’m at camp. Well, it’s a winter retreat, not a full week, but it’s at the campground where I spent a lot of my time and energy in my late teens.

For several years, I was either the head cook or one of the main cooks in the kitchen. Cooking for up to 400 people, 3 meals (and a snack a day) for 6 days. Usually for multiple weeks. And man, nothing could stop me. I was up every day between 3 and 3:30. Out the door, ovens warming, quiet time in the dining room, breakfast rolling before anyone was stirring. Coffee on at 5 for those early risers. Breakfast. Lunch. Lots of clean up. Nap and shower between 1 and 3ish. I usually napped for about an hour, unless I got in a great conversation with one of my work crew girls, in which case I skipped. Then dinner, snack, prep for the next day, in bed around midnight. What a life. I soaked it up!

God spoke so much to me at this location, in this kitchen and dining room. Down by the river. In the tab. I learned to lead here. Learned to serve. Learned to cook for a crowd. Learned patience (sort of.) Learned how to invest in students- both because I was with them all the time and because I was invested in here. And I learned that if you’re ever anywhere like a camp where someone else is cooking, make friends with the kitchen staff.

I found myself naturally jumping in at dinner. Helping serve. I haven’t done a camp in almost 4 years. Hard to believe it’s been that long. That’s when I started getting sick. I was honestly too tired to do anything even remotely close. The glory days are over.

Tonight, I’m sitting in the kitchen. I came in to bless the kitchen staff and get the dirty dishes washed and the clean ones put away. (Something that always made me smile in the morning.) The smell. There’s a certain smell of this place. So familiar. So perfect.

It was natural for me to come into the kitchen. To put away dishes and offer to help. That’s who I was. Unfortunately, not so much who I am now.

I couldn’t figure it out before, but now I know why. Since I got here, I’ve felt myself being pulled into the kitchen. Tonight, I figured it out. This place is the last place my body was whole. The last place I could do anything for any amount of time. The last place I was invincible.

But the glory days are over. I’ll do what I can, and what God gives me the strength and ability to do. I’ll never be 17 again, but moments like these will live in my heart forever.

The Lupus Card

I hate playing the lupus card. I never do. Except maybe when I want my sister to bring my ice cream or my daddy to make me breakfast in bed. But mostly, I try not to use it as an excuse for getting into or out of things.

But I played it a few weeks ago.

I get really cold, and often it hurts. I use an electric blanket 12 months out of the year to keep me warm and relatively pain-free. I’ve had mine for a few years and absolutely love it. At the beginning of the year, it died. At some point between when I went to bed one night and went to nap the following day, it decided to be done. I was very sad, and also hurting more than usual.

Quickly, I googled the company for warrantee information and emailed them, asking for a replacement. Two days passed and still no reply. Getting desperate, I pulled out my deck of cars. In another email, I wrote, “My blanket power died. I have a chronic illness and use my blanket to manage pain. Please let me know as soon as possible when I can get it replaced.” I got a phone call in under an hour.

Sometimes you gotta do what you gotta do to take care of yourself. Even if it means pulling out that 53^rd card from the deck.