Random randomness and maybe a rant

Oh I’ll be relieved when November is over. I mean, I know I didn’t actually officially commit to writing a post every day for national blog month or whatever it was, but I told myself I’d do it, and I hate letting me down.

but man, I’ll all of the sudden get this panic like, oh crap I haven’t written today. I think yesterday I just copied and pasted an email lol. But today I guess I’ve got some random stuff to write.

I think I’ve officially forgotten to write about Silicon Sassy and the vacuum. I’ve just lost the urge.

this week has been busy. Well, really most of last week, the weekend, and this week have been busy.

I think I wrote about hanging out with Kevin and Georgie on Saturday. And then it was the normal Gamma on Sunday, and then it got interesting Monday.

I had braille scheduled for 10am. I hadn’t been for 2 weeks since I had been sick. And that guy had rearranged his schedule, since I had to be paired up with an over 55 for funding reasons. We hadn’t had our first lesson together yet, so Monday was supposed to be it.

I scheduled my transit, told them I had to be to Saavi by 10am so they scheduled me an 8:50 to 9:20 window. Ick.

After being sick, getting up and being ready to go for braille and a workout by 8:50 pretty much zapped my spoons. I get to Saavi at like 9:15 and have 45 minutes to kill. I decide to get on the couch and rest and try to get some spoons back.

Well, there’s this guy who takes a lady to Saavi and then hangs out. I don’t know why he hangs out there all day, but he does. And he’s taken to wanting to talk to me. Every time. How’s your MS? How does it affect you? I used to be a caregiver blah blah I delt with MS blah blah I knew so and so with MS and all of the sudden they were in a chair blah blah.

I’m slumped on the couch, eyes closed, nodding and grunting. Finally I say, I don’t listen to other stories about MS. MS is so different with every patient, that I don’t dwell on what could happen to me. My doctor told me from the get go not to go online. Don’t get over educated on MS. I took his advice. I know enough, I know how it effects me, I don’t want to hear about a thirty year old woman who couldn’t walk one day.

I was nice about it. I wasn’t like, shut up!! Just shut up!! But he got the hint and said, I’ll let you rest now.

So finally I can just rest my eyes. Now, I hadn’t looked at my braille. I’m realizing that I can’t do braille on command. Sometimes at 7am I feel like looking at braille. Sometimes at 5 pm. But I can’t be guaranteed to be able to do it at 10am on a Monday. So its about 9:45 and I remember that last time, we met in the back module, which I need help getting to. I haven’t mastered the route on my own yet. So I go up to the desk and ask if I’m meeting back in the back module. She’s like oh I don’t know, let me call. She calls my teacher and is not getting her on the phone. She’s like, maybe they took you off the schedule since you weren’t here. I’m like, no, she knows I’m gonna be here. I sit back down. Then she’s like, I’ve got her on the phone! So I pick up the phone and my teacher’s like, I totally spaced that I had a lesson today, I’m so sorry, I’m helping with the planning for the parade of lights. But L is there right? I want you to sit with him and go over punctuation.

At this point I’m thinking, I’m exausted. I could have caught my ride at 10 and avoided the last 45 minutes of falling asleep on the couch. I say, no. I’m here, but I’m not here mentally. I think I’ll just head back to the gym. She says oh, ok. And gets on the phone with L to let him know she spaced the lesson and I went back to the gym.

I pretty much decided right then and there that I’m gonna do self–taught grade 2 braille. I talked to another teacher and she was like, yeah once you have grade 1 down, you could do grade 2 yourself no problem. So that problem solved. I don’t like having someone else’s life being contingent on my spoons like L was, and I don’t want to feel guilty when I have a bad couple of weeks. So I’ll get the book and learn at my own pace.

The workout kicked my arse, but it felt good, and I was able to do everything I’d been doing, just a tad slower.

Yesterday I went to a meeting at noon, then was looking at some stuff for the job, then Carol and I had an impromptu diner meal before choir. Went to choir, came home exausted and passed out.

Go to Saavi today just for the workout and I like that, because I can head straight to the gym and bypass the guy that hangs out in the lobby. I worked out and i twas great! Weighed in, and lost 5 pounds! Even though I had been sick, I still lost 5 pounds, yippee!!

Go out to wait for my ride and MR. How’s the MS is there, but he doesn’t say anything. So the other how’s the MS guy asked how the MS is today. I’m like, oh I’m fine, just sore from working out. Oh, how does MS affect the workouts for your legs? I’m like, not really any differently knock on wood. I only have fatigue and blindness, knock on wood, and I”m knocking on the coffee table there. I like this guy though, and I was able to steer the conversation to computers. He’s really struggling because he used to program and really misses computers since going blind, and he feels like Saavi is taking too long to teach him. I told him he should say something and he has. He was told everyone in the class gets started off slow. Man, did I dodge a bullet there by teaching myself the Apple. I’d hate it if I was held back. I asked if he has Jaws at home, and I told him practice, try and find online help, you’ll get it, you’ll be amazed, its tedious, but you’ll get it. He thanked me for my positive attitude. I want to help this guy, man. I can’t imagine feeling all stunted with the computer. When I made the decision to learn the Mac, I dove right in. I didn’t have to wait on anyone.

So thats it. I really wanted to title this something like I’m not MS. I’m not dammit. And I never feel that way any place but Saavi. Its like, come on, we’re all blind, can we focus on that? Guess I need to just get used to it. Some days it bothers me more than others.

Oh yeah, there’s only one more official choir rehearsal before the concert. Yikes! Hope we can pull it together.

Oh, and I’m going to B’s fancy company party on the 19th, so my girlie girl part of me is getting excited about getting a new dress hehe.

Going to a nice buffet with the family tomorrow for Thanksgiving, where I plan on putting on those 5 pounds I lost. Yummmm turkey and prime rib and lamb and stuffing and desserts oh my!

Oh yeah, B just called and I got sidetracked. I forgot I was writing a blog. I decided to try on the brown dress that I tried on a month and a half ago that fit, but was too tight. Guess what? It fits perfect! So I can wear it for Thanksgiving yay!!

Oh yeah, I caught my microwave on fire today. That takes talent 😉

9 Comments

Filed under accomplishment, assistive technologies, braille, Choir, Gamma, NaBloPoMo 2009, proud geek, random stuff, rant, silly girl, spoons, workouts

9 Responses to Random randomness and maybe a rant

  1. Lots of topics covered! Sounds like good advice from your dr – these conditions impact us all so differently – have experienced some of that same with RP. Happy Thanksgiving and enjoy your buffet!

  2. LOL about the microwave. I’ve done that too. As well as the toaster. Nearly elctrocuted myself with one of those once. Lesson learned- never stick a metal knife in an eletric toaster.

    Hope you have a great Thanksgiving!

  3. Ro

    Hehe I used to stick in the knives but I always unplugged first. Now I need those little toaster tongs so I can toast english muffins again hehe!

    You two have great Thanksgivings too!!! I cannot wait for all the food!

    Oh, Becky, my friend has RP, so I’ve heard a little about it, but I never call her up and say, how’s your RP? Why do people say, how’s your MS? Hahaha oh well, I can laugh at it now.

  4. Damn MS guy, I’d wanna throttle him. I swear, nobody wants to talk about blinkitude in a sea of blinks, they’ve gotta find the different thing about you. Nosey dork. And then to talk about someone having to use a chair. Not what you needed to hear about. Gurg.

    Yeah everything I learned about computersI learned myself. I called it trial and error and error and some more error.

    And the offer’s still open if ya wanted to exchange braille letters.

    Have fun feasting on yummy food.

  5. Ro

    Carin, I actually woke up this morning thinking about, thinking you had been quiet on the lists and blogs lol. I was laying there thinking hmmm, I’m gonna email her if I haven’t heard from her. That was after the cat woke me up by stepping on my head and then B was snoring so I got up at 6:30, ugh.

    I really think that guy almost wishes he was blind. Its odd, and I don’t know why I think that. He said something about how he relates to us and I’m like, well you can’t really relate and he said he wore a blind fold during his training and I was just like, oh, yeah, uh huh. I really try to be kind. Talk to me about blind all you want, I’m cool with being blind, I have control of how my life goes as a blind woman, but the MS is a whole nother story. Anyway.

    I would love to do braille letters. Can you write grade 1 though hahaha. Guess I better get a slate and stylus. You know, I was totally against a slate and stylus when my teacher suggested it, but I’d do it for you hahaha! It’ll take me a week to write you one paragraph, but I’ll do it haha!!

  6. 6:30. Ah, just consider it fido practice hahahah!

    Oh don’t do the slate and stylus. I hate that mo fo with a passion. They tried to teach it to me when I was a kid and I ran screaming. How about this. If you want to practice your braille reading, I’ll send you braille letters and you can just respond by email. I guess if you wanted to write, unless you got a perkins, but they’re expensive, you’d have to do the slate, but I’ve got a perkins and I can send you braille that way, and yup. I can do grade 1. It takes thought, but I can do it.

  7. Ro

    Thats exactly what I thought this morning too. Doggy practice. Maybe Timmy said mom, you gotta practice. I’m gonna walk on your head.

    I would love to read braille letters. That would be such a fun way to practice! The Perkins, thats the writer with the 6 buttons and the space bar right? I want one of those. Have you any info on how to get one? I know they’re expensive, but its one of those things like a computer that I think I should have. Can you buy them re-conditioned?

  8. Go Timmy, thinkin’ of gettin’ mommy ready.

    That’s the beast with the six buttons and the space. I’m sure you can get them reconditioned. I’ll put my feelers out for ya. I’ll bet there are a zillion reconditioned old-style ones since they just rolled out their next generation brailler. I’ll put an email out to another mailing list I’m on that has about 1200 blinks on it from around the world. We’ll see what we can find! I’ll also email you the link to the Perkins site. Maybe they have a recycled braillers program of their very own or could direct you towards one.

    I love my Perkins for writing grocery lists and other little notes. I’ve had it since I was 4.

  9. Ro

    Awesome, thank you! Yeah those things seem to last forever, so its worth the cost. I definitely want one!

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