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.