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11:52am
April 19, 2015
This was a petting zoo my parents took me to a lot. My dad is feeding an animal while I’m delightedly flapping my hands.
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4:42pm
November 2, 2014
Amazing things about my new apartment
It looks like a home. Not a shoebox. Not a dorm room. Not a hospital room. An actual home.
Whoever designed it went out of their way to make it visually attractive. It’s truly beautiful. It even has these amazing wood columns throughout the apartment and the building. Some are left unpainted, others are painted white, all are gorgeous.
The walls have paneling part of the way up and then flat above that. Also gorgeous.
The square footage is smaller in this two bedroom apartment than my old one bedroom apartment. But the space is used more intelligently so it feels bigger. Much bigger.
The bedrooms are at opposite ends of the apartment. Once I get a roommate we can, if we wish, do our own thing in our rooms without intruding too much on each others space even in an auditory way.
The apartment has closets. One for each bedroom. My old apartment had no closets.
The smaller bedroom has two windows. If it weren’t for the need for space for my medical equipment, I would actually have taken the smaller bedroom. I don’t know why, I just like it, they managed to make it appealing despite being utterly tiny.
The toilets flush. As in, you only have to flush once. No more having to throw the toilet paper in the trash because it won’t flush without a serious fight. (Low flush toilets are not eco-friendly, not when it takes that many flushes to get anything remotely solid to go down. You don’t want to know the things we had to do in my last place.)
The ceilings are incredibly high. This contributes to it feeling more spacious than my old place. It also means more storage space, just stack stuff higher.
There are ceiling lights in every room, and they are indirect enough not to set off my migraines. No more lighting nightmares.
There are light blocking shades on every single window. Again, no more lighting nightmares.
There are ceiling fans in every room. Controlled by a knob next to the light switch.
There are more power outlets per room than I’ve ever seen.
The bathroom is fully wheelchair accessible with a roll-in shower and a shower chair that folds down off of the wall.
The bathroom has a medicine cabinet. Which I don’t need for medicine, but any storage space is great as far as I’m concerned.
I keep feeling like this is too good to be true, that I’ll be forced back into a crappy apartment or worse. I think this may be the best home I’ve ever lived in, ever in my life.
I don’t know how to explain this, but buildings and apartments have personalities. I have always been able to sense that and interact with them. The first house I ever lived in was physically in terrible shape by had a good personality. The second house was in better shape but had a mediocre personality. The third was big, but in bad shape and even worse personality, so bad that from a young age I would endure things I normally hated, just to spend a night away from that house.
My other apartments have had personalities that never rose above mediocre. And my last one didn’t want me living in it, which became especially obvious towards the end.
This apartment actively welcomes me, wants me to live here, and is very open and friendly. It reminds me strongly of my friend Anne’s house. It responded very well to my initial response to it, which was to move my shrine over before moving anything else, and set it up in the middle of the living room. That seemed very important. And the shrine and the apartment responded very well to each other. It was after I moved the shrine that I realized how little I belonged in my old apartment. The shrine had been somehow overriding the way I didn’t fit in with that apartment, and when it was gone, it just became apparent that I should leave too.
Actually the entire building I lived in had a bad personality and a terrible reputation around town. The individual apartment I had was not awful like the building, but it wasn’t good either.
Another great thing: Despite being a ground floor apartment, the front door opens into a hall and there are several more doors before you get outside. This means Fey would have a really hard time getting outside. That had been my only worry about a ground floor apartment.
So I’m very happy here despite a few problems that have cropped up (kitchen sink won’t drain, flooded) I never want to leave and am only fearful that for some reason I’ll be forced to. Because things this good rarely happen to me.
9:06pm
August 24, 2014
Another dad shirt. My dad’s idea of getting dressed for work often involved blue jeans plus a dad-shirt, and suspenders if necessary. :-) Plus the hat of course, which I’m not wearing because I’m getting ready for bed. But I love these dad-shirts and I love that this really was a dad-shirt my dad wore on a regular basis. He sent another one just like this in a more sage-like color. So happy ^_^ I love my dad so much.
3:12pm
July 23, 2014
I didn’t realize the DMV would just print my ID card and give it to me today! I thought they’d have to send it in the mail. So now I have an up-to-date photo ID (I’ve had an expired one for a year now) and it’s in my new name, and I’m happy. And especially happy that they put my entire name on it, not just initials. The Voicy part is especially important to me these days with the family roots being important, and Evelyn is my connection to Anne, so all of these things have to do with connectedness and rootedness and I’m very happy with all of it.
And my facial hair showed up on the photo which I’m quite happy about as well, you can actually see dark fuzz on my chin. It shows up very differently in photos depending on the lighting, same as my unibrow. So I’m very happy that the chin hair and the unibrow and everything is evident, because I never feel like I look like myself in pictures where they use so much contrast or glare that you can’t see any of that.
Each new piece of identification and paperwork and cards and stuff that I get makes me happier. I think that means that Amelia Evelyn Voicy Baggs is the right name. (Mel, of course, being my “real” first name. Amelia is for paperwork and camouflage. But as female-sounding names go, I like Amelia, and I like what it does to my signature.)
3:00pm
July 22, 2014
I’m home.
I’ve taken my butt pill.
I’ve taken meds for the pain in my leg.
It’s air conditioned.
I’m under my happy yellow and brown Hufflepuff blanket.
Things are as good as they get for after a strenuous PT session and a knee injury (and, at that, a knee injury that happened because I did exactly what the PT said not to do… and I have to face her Friday).
2:53pm
July 17, 2014
So the test I had is called a single-fiber EMG.
And it’s the most sensitive test for myasthenia gravis out there, it picks up on something like 95-99% of people who have it.
And I’m incredibly grateful that he did not stop at the other EMG and the antibody tests and say “Well obviously you don’t have a problem here.”
My neurologist is very thorough. I honestly thought this test was just a formality to make sure he got everything out of the way. But no, it’s actually that I probably have myasthenia gravis or hereditary myasthenia or another neural junction disease.
I’d thought it very strange that I could have symptoms so like my mother’s and have it all turn out to be a completely different condition (adrenal insufficiency). Now he’s saying that the same drugs work for adrenal insufficiency that work for myasthenia gravis, so it’s possible the extreme effects I’m having from the steroids are because I’m treating two things at once. My mother gets extremely good effects from Prednisone, so there’s some precedent here.
I’m actually excited, I’m almost as excited as when they found the adrenal insufficiency. Because this is another test that is written in stone, you can’t deny that it exists. And the combination of adrenal insufficiency and myasthenia gravis is… so fucking staggering that I don’t actually understand why I’m alive, given the events of the past years.
So this news is huge to me. I don’t have a firm diagnosis yet, of course. We still have to do further testing. I’m going in for blood tests tomorrow before physical therapy. And I think he might still want to test me for mitochondrial disease, given that it can cause the whole array of problems I’ve had.
But… seriously… this is enormous. Every test that shows the way to a new, firm diagnosis of something big, is enormous. Because that’s one less thing any halfway reputable doctor can doubt about me. These are not tests you can fake. I have gastroparesis, I have adrenal insufficiency, and I have some as-yet-undiagnosed neural junction disease. And I’m absolutely happy and thrilled to be getting answers, finally, because I’m sick of almost dying and nobody knowing why.
12:28am
June 24, 2014
Right now…
I have taken my anxiety meds, both the bedtime dose and the PRN dose. I’ve got my iPod shuffle playing my two favorite Kathy Mattea albums on my nicest in-ear earbuds. I’m covered in two of my favorite crocheted items, one a blanket and one a shawl. And I’m trying to just relax and be happy and cocoon myself in familiarity and good things, because I badly need that right now in order to keep functioning. I haven’t been doing enough of this kind of thing.
12:56am
June 4, 2014
seriously
Mel Baggs a.k.a. Amelia Evelyn Voicy Baggs is official. It’s just a matter of spreading out all the paperwork
I am beyond excited. I just keep thinking it over in my head. And staff are starting to call me Mel. And I don’t have to hide my name anymore. And EEEEEE!
(The previous name change is one reason you’d get “nobody by that name in this hospital” responses. I’d changed my name largely for privacy reasons, but it didn’t really work out, and trying to keep it secret and compartmentalize my life was a pain in the ass.)
12:10am
May 30, 2014
Yay I am so happy!
People are actually submitting to Autistic Thinking!
I was terrified it would just sit there dormant while I found more and more quotes from other autistic people to pour into it, or found things to write about my own thinking.
Thank you so much everyone who’s contributed!
12:35am
April 9, 2014
Here is the wheelchair at present, complete with brown and yellow duct tape that I put over almost all of the surfaces. :-) I haven’t got the brown cloth to put over the cushions yet though.
It’s smaller than it looks there. But it’s also much too big for me. But I’m planning on filling the extra space with side pouches. Better too much space than too little. But I’m still weirded out that a wheelchair of normal dimensions is too big for me now.
I have a couple of stickers on it too. There’s a Hufflepuff sticker on one side and an Alley Cat Allies sticker on the other (it says “cats nap, only humans put them to sleep”).
