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!