One of my favorite things to do, EVER, is laugh. I will go anywhere and do anything I’m able to do if I know there will be laughter involved. All those movies that critics pan for having no plot but massive amounts of toilet humor, I’m there. And my favorites of these movies all have one thing in common: Mr. Mel Brooks. This man is a genius. He’s also not afraid to make fun of himself and this weird, wonderful world he lives in. My title today echoes one of my favorite lines from The Princess Bride.
Miracle Max: See, there’s a big difference between mostly dead, and all dead. Now, mostly dead: he’s slightly alive. All dead, well, with all dead, there’s usually only one thing that you can do.
Inigo: What’s that?
Miracle Max: Go through his clothes and look for loose change.
I feel like I have been floating through life for the past 6 weeks being “slightly alive.” My lupus has been flaring up to the point I ended up in two ERs over the Christmas holidays, the first time the Saturday before and the second time the Friday after. That whole week was horrible. And while some of the symptoms have subsided, many are still trying to throw a wrench in my plans to finish my Masters. My joints have decided to join in the fun with a gusto I envy. If I could only channel that energy into something useful, like driving to work….
I had truly hoped by this time to be done with my Masters thesis but instead I was stuck in bed over the winter break, unable to do much at all. However, there were a few days that allowed me to work on my thesis. I just need more days to get something done. I always though writing the thesis would be so easy. You just take the experiments you’ve done and write it out in long hand, right? If only it were that easy and actually that part of it WILL be fairly easy. I’m having issues writing my introduction and literature review. You never know when you’ve got enough. And don’t even get me going about formatting issues. I’ve said more bad words opening up my thesis and seeing the formatting all screwed up than anything else in this process.
And, after all that’s gone on the last 6 wks, it’s about to get even crazier. Since I can’t stay in this Lupus flare for much longer without organ damage taking root, my rheumatologist is adding in a second immunosuppressant drug, methotrexate (MTX). This drug was first used many decades ago (and sometimes currently) for some breast cancers. They won’t be giving it to me in the same dosage as those first cancer patients but it will be enough. I’ve been told to expect nausea, vomiting, diarrhea and my personal favorite, hair loss. Yes, hair loss got me more than any of the others. It took some time before I could actually say it out loud. Of course, the amount of side effects differs from person to person and I will be getting the drug by injection (which I have to do) which they say brings less side effects with it. I lost some hair when I first started the Plaquenil but I’ve been able to control it so far. I’m hoping the MTX will be similar. But just in case, I now have a stock of three cute hats (not baseball caps although I also have several of those) and four scarves that I hope to use.
This could also be a definitive time for me. For years, well, since middle school probably, I have “hid behind my hair.” While I may not have taken care of my body (wake boarding, trying to ski at 31, scuba diving, and not to mention using my pregnancies as the opportunity to eat any and everything in front of me) I have ALWAYS been fairly meticulous with my hair. I generally didn’t take too many chances with it. Now, I’ll have to rely on something else. Maybe this will be the time I finally throw off all the things that make me WANT to hide and I’ll be able to shine from the inside instead of from the glossiness of my hair.
But then again, there are always wigs…………
Until next time, light and loving hugs.
We gave ourselves a great night out at the Lupus Gala put on by the Oklahoma Chapter of The Lupus Foundation of America.