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.

Two Years

I've always been a dates person. I remember dates like few other people I know. Dates I met people or did things, birthday and anniversaries, and random other dates that are pretty insignificant. But today is a date I make sure to remember. It comes every year. December, of course. Two years since my diagnosis. Hmmmm.

December

Decembers lately have had a patterns for me. And I’m not sure it’s one that I like.

In December 2007, my uncle got really sick. Shortly after the new year, we found out it was colon cancer, with a tumor roughly the size of a softball. Three feet of intestine later, he is cancer-free. But Christmas Eves will always come with memories of seeing him pass out from pain.

The following year, a man from our church was diagnosed with brain cancer. He’d had tumors two decades before, but they were back with a vengeance. The likelihood of him being around for the following Christmas was slim. He beat the odds, but in the spring of 2009, he went Home, leaving behind his wife and four sons and one granddaughter.

That same year, in 2008, I was diagnosed with lupus. I found out about this man’s cancer about a week before I found out what was going on in my body, and I am ever thankful to God for framing my illness with his. It was a great reminder that though my life will be forever changed, it won’t be shortened by any great amount. Still, that Christmas was surrounded by doctor’s appointments and blood draws.

This year, I was talking with my uncle, the one mentioned above, just a few days before Christmas. He told me that he had just received some news about another friend of ours. He and his wife have been on our teams forever. He and my uncle, with a handful of other guys, play disc golf almost every week. Apparently, for the last year or so, this guy has been experiencing weakness in his hands and stuff. Last week, it was named: ALS. Wow.

I don’t know why this is weighing on my so much. Whether is several Decembers of diagnoses or the thought that another dear member of my extended family is facing pain, illness, and impending death. Or maybe it’s the thought of this vibrant, energetic man laying in a bed, unable to move and fully aware of what’s going on, while his wife of who knows how many years sits beside him.

Two things give me hope in this. First, he is going on some experimental drug that should slow the progression of the disease. He’ll have more time with his kids and grandkids and wife. Second, and way more important, that he knows Christ. He’ll have a new body in heaven, where he will be reunited with all those he loves and love him.

But for now, I will keep praying.

Louisville

My dear friend lives in Louisville, Kentucky. But it’s not pronounced “Louisville.” It’s more like “loo-a-vul” or “loo-vul.” There are other Louisvilles, though. Colorado, Indiana, Georgia, Mississippi, Tennessee, New York, Nebraska, Illinois, Alabama, Kansas, Maryland, Quebec (Canada), and Belize (South America) all have their own Louisvilles. Some of them are pronounced as spelled, and others are more like “Louie-ville.” That’s where I live, I think.

Lately, the Louie part of my life has been much more noticeable.

The pain isn’t too bad. Some in my fingers and toes; small joints. Nothing I can’t deal with. But the fatigue is killing me!

A few nights ago, I collapsed into bed at 7, after doing my best to stay awake since 5. In the evening! Last night, I fell asleep at 5, slept through my alarm and woke up at 9 to a message on my phone. I did my best to be awake, and stayed that way for an entire hour, then slept for another 12. That’s 17 hours!

In the last few weeks, I’ve slept through my alarm more times than I can count. I can barely stay awake for anything. I’ve canceled big plans due to exhaustion.

Extreme fatigue is what took me into the doctor in the first place. Two plus years later, it hasn’t gotten any better. How is one supposed to do life? How is one supposed to live like this?

Bear Snores On

I flew across the country this week to visit some friends who moved away a few months ago. Tonight, Amy was reading books to her two year old before bed. One of the chosen books was called Bear Snores On by Karma Wilson and Jane Chapman. It was a pretty good book that I had never heard before, so I was listening and trying not to fall asleep.

The book starts out with the bear sleeping in the winter. He’s been sleeping for a long time. Then, the mouse comes into the cave and lights a fire. The bear keeps snoring. A hare joins the mouse and sleeping bear, more animals come in and they make food and eat and are noisy, but the bear continues to sleep. They make a stew and have a little party. The pepper from the stew floats around and causes the bear to wake up. We wakes up with a big sneeze.

The bear wakes up and sees that all his friends are having a party and lots of fun and he didn’t get to have fun.

Sometimes I feel like the bear. I miss out on a lot of stuff and fun because I’m sleeping. But at the same time, the bear has to sleep in order to function the rest of the time. I’m the same way. Sleeping is not an option. I have to do it to take care of me and function less like a bear, and in doing so, sometimes I miss out on things.

So, to all of you out there partying and enjoying your parties, I’m going to snore on.