Oscar madness

We are mad at the 2018 Oscar broadcast. I was not feeling well (UTI! Woo!), so Gina recorded the show so we could all watch it together. However, although we added 30 minutes to the recording, it went over even that. Way over. As in, we missed the Best Actress and Best Picture sections.

This is infuriating. Why in the world do they not just schedule the freaking thing for the appropriate amount of time? It can’t be hard to look in the archives, see how long the average acceptance speech actually takes, and then factor that in with the length of your features! Argh. Trying to bribe winners with a jet ski doesn’t cut it. Let them have their freaking moment. Don’t steal that because you make bad decisions.

Gina, as a screenwriter, is especially angry at the Academy Award producers. I am less angry, mostly because I’m in serious bladder pain and am dealing with this weird MS thing where my body temperature feels completely out of whack and I had to leave in the middle to stand under burning water in the shower until my teeth stopped chattering. My life is bizarre.

I go home tomorrow. I miss David horribly, I miss Bonesy, and I can’t wait to see Hudson Taylor on Wednesday. (OMG! Pinch me!) But my time with my sister is always so much fun (and goes by so dang fast!) that I hate to leave.

Parents, palms, and poker

Gina and I drove out to Palm Desert yesterday to visit Dad and Ann. It’s been a very productive visit: Dad and Gina went to the casino to play poker, Ann and I went thrifting, we’ve had some excellent meals, I got food poisoning (or whatever the heck has turned me completely inside out), we’ve visited and told stories and watched Wayne Newton sing on Bonanza.

I also gave Dad a detailed lesson on what Multiple Sclerosis is and how I know that I really have it. Since his stroke, he has been adamant that I don’t have MS, that there’s nothing actually wrong with me, and that doctors are all incompetent. It’s been discouraging for me. Since MS is an invisible disease, I always wonder if people think there is nothing wrong with me, that I don’t have real symptoms, that I’m actually faking. I know that’s ridiculous, but I often feel I have to explain or defend myself.

I think, though, that not understanding the details of how MS affects me (and how it might progress in the future) made him more nervous than he needed to be. Once I explained that I was not going to die from it, he seemed somewhat reassured. He just wishfully thinks I don’t have MS because he wishes I didn’t have MS. I can definitely relate to that sentiment!

Poker by Javier Morales / CC BY

The School of Shut The Heck Up

I had a hard week, physically. Exacerbation, steroids, lack of follow-up, more steroids, drug reactions, insane water retention, dizziness, wooziness… It was nuts.

At one point, when the only part of me that didn’t hurt to move was my thumb, I picked up my phone and got on Facebook.

Holy freaking prednisone. My body is rebelling against it, but every tissue is holding about three times the appropriate amount of fluid. I feel like I am literally going to burst through my skin. Oh. My. Gosh.

Guess what happened? My friends came through with sympathy, commiseration, offers of help, funny comments, and words of wisdom.

The next day I’d started to shed some of the water and I felt a bit better, and I started feeling bad about my griping status update. I thought of my Facebook friends and the things they don’t say: the friend with rheumatoid arthritis who’d rather talk about her work or her kids; the friend with Crohn’s disease who posts about his lovely wife and his golf game; the friend with Guillain–Barré syndrome who shares about paddle-boarding or lightens my heart with Bible verses of praise and gratitude.

I’m humbled by these friends, the ones who have physical conditions that most people don’t ever hear about. I wonder about myself, about my need to do all my thinking out loud, to reason and rationalize and – yes – moan and groan, all in public. When my transverse myelitis diagnosis was changed to MS last year, I decided to tap right into the power of social media and specifically asked my Facebook friends to pray for me and say nice things, because I needed to hear them.

One of my wise friend’s comments the other day was, “We are all social beings or social animals. :-)We all need emotional support.” I guess I just want to be sure that I am about more than the stuff going on in my spinal cord. So while my lovely husband played me fantastic music last night, I thought about what I wanted to say, and posted this:

Things I learned today from the School of Shut The Heck Up:
– I have wonderful friends.
– My blessings WAY outweigh any other issues.
– Other people have all kinds of stuff going on in life, and they just get on with it. Maybe someday I’ll get to that point and we will all be relieved.
– XTC is a really cool band.

Fifteen people liked it. Yeah, I know – they could have been agreeing about XTC… but that’s great, too.

xo – Lori

Daily Check-In:

I’m grateful for ride home and the Taco Del Mar dinner from Dad and Ann this evening. It’s always sad when fall comes and I know they’ll be heading to the desert soon. I’m also grateful for the incredible burst of energy I got tonight! Two rooms tidied and vacuumed, after a full day at work and a lymphatic massage.