And then I waited too long…

..and the backlog of words waiting to be written backed up and I EXPLODED!

Okay, not really, but I’ve worked myself into that awful spot where updates are long overdue, but I can’t tell you about THAT because first I have to tell you about THIS, but it’s dependent on this OTHER thing for context, and I wanna talk about THIS but it needs to be a video but I really need to vlog about the cruise first, and then the wake…

And so for weeks I’ve posted nothing at all. Which is DUMB. So let me sum up some things, and then when I feel like I wanna say something, I can do that, and then fill in the back story as I can. The Cliff Notes version:

Clinic Days: Progressing as normal. Last time my breathing capacity was down a little, but it was still a strong normal. My hands continue to degrade. I made an appointment with Deb the Wicked Awesome PT who made me a Wolverine glove to hold my fingers up. I now have a wheelchair at home to get pushed around in.

Home search: Nothing. Despair.

Support Network: Lizzie is amazing and helps clean my place and I am VERY much enjoying the strengthened friendship that’s resulted out of the hangouts. She’s keen. Puce has become a freakin’ CHAMP-EE-UNNN in my life, to the point where he pushes me in my walker from the car to my desk every day. He’s amazing. Every dang day I am grateful for the people in my life who just kinda stepped into the roles I need, and I’m not at all sure what I did to deserve any of it.

Cruise: So much fun. You should do a cruise if you can.

Awake Wake: I literally don’t have the words. So many people, and so much love, and so much good food, and creativity, and hardly ANY crying, and SO MANY PEEPS OH MY GOD. My favorite part was sitting in the corner, watching all of my friends greet other mutual friends they haven’t seen in too long. It was the most uplifting thing I’ve ever experienced, and I’m so freaking grateful to everyone who came.

Vitamin shots: Don’t seem to be doing anything except make me pee pink, but I’m continuing them until next clinic day anyway.

Radicava: cautiously optimistic, but holy HELL is that expensive and complicated and..yeah. Every time I hear about it I think of Rikki-tikki-tavi.

Politics: Don’t even get me started. He wants to completely defund the ALS registry, which is the single most important tool we have to finding a cause and therefore a cure. I get angrier and more depressed with all of it every day, so I spend my days actively avoiding all of the news. It seeps in through my friends feed anyway, and I try to not be hateful and bitter. The world seems like a very ugly place right now, and I actively work to remain ignorant so that I can remain sane and functional. Bleh.

ALS Sucks: Someone else I knew with ALS died recently. I know his wife better than I knew him, and she’s an amazing person (seriously, caregivers are the unsung, underappreciated heroes of all time), but it brings the total number of people I know with ALS to….one. This is why I avoid the hell out of ALS forums. They’re seemingly all “EVERYTHING SUCKS” or “RIP So-andSo, who lost the fight with ALS today…” Meh. There’s only one cure for this disease, and it sucks.

Settling Affairs: Yeah, speaking of which I still need to finish that all up. It’s hard. I’m glad I don’t actually own anything of value.

Voice banking: Done! I have my digital voice and it is some serious Uncanny Valley stuff and I can’t wait to show it to you.

Work: I still have a job, I’m working from home two days a week now because it’s hard to do much of anything, and even getting out of bed and putting civilian clothes on and wrestling with myself to get in to work is a freakin’ challenge. But I still have to keep doing this because see: Home search.

So, that’s the quick (!) update. A lot. Realllllly need to post more. Soz. Soon. <3 I hope you're doing excellent things today.

The Week in ALS…

This should probably be a vlog post, but I don’t feel like putting on makeup and sitting in my hot office to record one, so you get a micropost update.

So to sum up:

1) The orthotics appointment for testing various knee braces was stressful and awful. Traffic was horrifying – it took us literally an hour and fifteen minutes to drive a 35 minute distance. When I called to give them a heads-up, she was AWFUL and rude to me, “Well HOW late.” “I don’t really know, maybe five to ten minutes?” “Well where ARE you.” “Two exits away, but traffic is unpredictable.” “I’m going to check with the doctor and make sure that he even has time for you.” I was literally ON the exit when she came back and told me I’d have to reschedule because they really needed EVERY MINUTE of my appointment time to work with me. “How about this. I’m on my way in RIGHT NOW. If I show up too late, I’ll reschedule in person.” When I showed up seven minutes late, they cheerfully had me fill out the paperwork and wait in the office lobby for five minutes. So I guess I’m not allowed to be late, but they can delay all they want.

And then, they had me try on a brace that didn’t help at all, made walking even NOISIER, and when I tried to take them off, I had to shove the velcro between my palms and push them hard together while I pulled at the strap in order to get them unhooked, because my hand strength wasn’t enough. And then they told me that anything sturdier would make sitting and standing nearly impossible, so they have nothing that can help me.

2) Dr. Goslin called and then emailed me yesterday (because I didn’t answer the phone) to tell me that I was disqualified for the new research trial. I did not take it very well; about as hard as I took the initial diagnosis, actually, because it felt like hope for SOME good to come out of this had been pulled out from under me. Again. I spent the entire day sleeping.

3) I woke up this morning still in a funk, and while getting ready for work, I had a fall. Just, knees gave out while I was coming out of the bathroom, and I landed very solidly on the linoleum on my knees like I’d just had a religious revelation. It hurt a LOT, and I resisted crying, but let myself just lay in the bathroom doorway for a little bit while Ianto very nervously sniffed me. Falling and getting up while wearing my braces makes everything suck worse, because it holds my ankles in a fixed and uncomfortable angle while I’m crawling. Usually when I fall at home, the first thing I do is yank my boots off if I’m wearing them, to make getting up easier. But I was already running late.

So, it’s been a terrible week on the ALS front. This is not to say the week has been terrible; I saw my favorite radio play live, with some of my very favorite people, had an awesome Saturday showing off Portland to a friend I hardly ever get to see because she lives far away, and my elderly cat is actually recovering quite well from his sickness. So yay for all those things. Yay.

And now you are updated!