Month: January 2019

Clinic Day 1-14-19

tragerstreit2 Comments

Hello my lovelies!

Monday the 14th was Clinic Day. I had originally wanted to do a video update for this, but I just haven’t felt up to it? And if I wait until I feel up to it this update is going to take for freaking ever and then you all will start to worry because you think it’s all bad news. Spoiler: it is not. I am just lazy.

When we first checked in, I was given a sheet to fill out. I am pretty sure I did this last time as well, but I do not remember. It was a self assessment sheet for the ALS functional rating scale (ALSFRS-R). This is a standard way to track the progression of the disease. Usually though, the care team fills this out for me. During the nursing portion of the appointment, it was explained that they are heading towards having patients fill this out for themselves, as a sort of experiment to see how the self assessments differs from the professional assessment. I actually assumed that the self assessments would be worse, since I tend to understate my difficulties when talking to someone, but am more honest with myself filling out a form. Apparently not everyone is like that, since the nurse would tell me that for the most part the scores are consistent. Huh. There are 12 categories, and each category is rated from 0 to 4, with four being completely normal and zero being nonfunctional. For instance the walking category is rated as 4 being normal, three being early ambulation difficulties, to his walks with assistance, one is nonambulatory functional movement, and zero is no purposeful leg movement at all. I am currently at a two. So then you take all of the numbers and add them up, which gives you a number from 0 to 48 and 48 is a normal human being with no difficulties at all. It’s a nice numeric way of tracking progression, and encompasses a lot. It isn’t perfect of course, but it’s a nice shorthanded overview of everything at a glance. You can check it out for yourself here, if you wish.

Last Clinic Day, I was at a 34.

My first appointment of the day, after getting to our assigned room and being handed a schedule, was nursing. In addition to explaining a couple of substitutions in scheduling (I’ll get to those) she went over what I just talked about with the self assessments. Nursing checks are always an overview of the big picture in my life, if I need any special appointments made, if there are any concerns I have outside of the specialists I’ll be talking to that day. We talk about any changes since last visit, and in general she is my master coordinator of all things. Nurse Nancy is amazing and I am lucky to have her on my team. She also explained she would be playing the part of my dietitian for the day, as Kelly was sick. Poor thing. I always look forward to talking to Kelly, even though I never have anything to report. My eating is fine, we usually wind up just chatting for most of the appointment anyway. Today, however, it was noted that I had lost a whole 11 pounds since last clinic. Normally, this would be a good thing for someone, but not so good when you have ALS. I weigh 211 pounds currently, up from 160 when I was diagnosed, all of that on purpose. I am under strict orders to not diet to lose weight, as extra weight statistically helps with prognosis, and when I am no longer able to eat I will need that extra wiggle room. So to speak. So we talked a little bit about my dietary habits and I mostly attribute the weight loss to no longer being at work and on any kind of schedule, so I kind of eat whenever I feel like it, which is usually only once a day. Anymore I also need help with food prep, so if I want to eat something besides the frankly embarrassing amount of snacks I have stashed in my room, I have to bother my mom. Not that she minds, at all, but I am terrible at inconveniencing others for my own sake. Nurse Nancy made me promise to stop that. I am making an effort to stock more snacks and not just drinks in my fridge that I can get to whenever I want.

My second appointment was with Dr. Goslin. It had actually been a few appointments since I’d seen her specifically, since the previous appointment was my introduction to the new doctor, Dr. Olney, so it’d been half a year. We spoke mostly about the medications for this appointment, my increasing depression specifically and overwhelming anxiety. Unfortunately no longer reporting to work means I no longer have a distraction to keep me from spiraling into bad moods when I think too much. It’s been a rough couple of months because of that. I still don’t have a permanent place to live and I am continuing to freak out about that. We doubled my dose of Ativan in the meantime, and she gave me a couple of options to think about for ongoing anxiety and depression. Otherwise, as usual, she is very pleased with the rate of my progression.

My third appointment was with the power duo team for occupational and physical therapy. Physical therapy pointed out that my calves are getting tight and I need to be better with my stretches, and since I can’t really stand on my feet and touch my toes anymore to stretch them out, I was given bands to put around my toes and use my forearms to pull up on them while I’m laying in bed. The whole point of that is to keep my muscles limber so that I can continue to use the walker to visit the bathroom while I am at home for as long as possible. Occupational therapy was entirely centered around keeping my hands functional as long as possible, and preventing my fingers from curling up and cramping while I sleep at night. We also measured my hand strength as usual, and of course they are still garbage meat noodles of uselessness, no big surprises there. Deb the Amazing OT had previously suggested a new kind of brace for me to buy, and I had, but they need adjusting and some modifications to make them actually usable on my own as they are primarily built for bicyclists and didn’t have crippled people like me in mind so they’re not exactly easy to get on and off. We made plans to have another appointment outside of clinic to go over all of those things. I’ve since had that appointment, and like a total genius I forgot the braces in question at home, so she wasn’t able to adjust them for me and now I have a second appointment this coming Monday to take care of that. I was told if I forget them next time I’ll be sent right back home. Hehe.

The fourth appointment was speech. This appointment also includes swallowing, and all of those muscles in general. Luckily, this is the one area that I have yet to experience any problems, so these appointments always go very fast. She just verifies that I am not choking on my own spit anymore than a normal human being does, watches me swallow liquid, and eat a dry graham cracker, and make some funny faces including blowing my cheeks out and trying to touch my nose with my tongue etc. to prove that all of those muscles are still in tune in good shape. So far so good.

The ALS Association was fifth, for social work. I remain eternally grateful for their help. Unfortunately the problem I most need help with is housing, which is not their specialty by any stretch. They do however have resources and connections to other services that are useful, and most importantly they have always been willing to do research on my behalf to do what they can to help. During this appointment, we talked a lot about senior services to get my mom some assistance in whatever way we can. It’s all very useful information, and I truly appreciate the help. They have connections I would never even dream of and that alone is extremely helpful.

My sixth appointment was respiratory. This is the one I hate the most. It’s exhausting, and for the last few Clinic Days, it’s also been somewhat disheartening. We spoke a little bit about new policy changes, specifically about the clinic no longer being able to keep equipment for their patients and so I have to take my respirometer home with me every time now. No big deal, it’s not that big and it fits in my purse just fine. The breathing test came and went as usual and I was surprised to find that my breathing has actually remained perfectly stable since last time. I don’t even need to tell you how happy I was to hear that. I think sleeping with the new AVAPS machine has been helping, and I still need to recommit to breath stacking of course, even though I hate it. A lot. I still owe you guys a demonstration video of exactly why that’s so miserable. But still. No change. Great news. I will take it.

Usually, that would be the end of it. I typically have six appointments. However, since I have graduated to the new sleepy time breath machine, we have added a pulmonologist to the mix. I met with him last. My standard doctor was apparently on vacation in Ireland or something, so I met with a substitute from his practice. It’s a shame he was a substitute, because I really like him actually. He had some suggestions about the mask I’m using at night, some accessory suggestions for the machine, and sheepish apologies that a lot of these commonsense accessories aren’t covered by insurance at all. I came out of that appointment with another doctor appointments to make for a new mask fitting. That will happen on Tuesday.

After that, I headed downstairs to the lab for some overdue bloodwork – I was supposed to have done so last time apparently, but we missed it. Most of my levels came back normal, but I am once again experiencing a vitamin D deficiency. Probably because now that I’m not going to work I don’t really get out into the sun at all. Ever. I take a 1000 IU supplement, but after seeing my levels Dr. Goslin told me to bump it to 4000. Apparently my deficiency is not screwing around.

After all of this, and my summary letter came in the mail, I discovered that my ALS FRS rating has gone down to 26. Down eight points out of 48 total in three months worries me a bit, I admit, but I don’t know if that’s me shifting from doctor to self evaluation or what. I certainly don’t feel like I’ve declined that far in so short a time. But my breathing is the same, and that’s what I care the most about right now. So I’m happy.

And that, my loves, is how Clinic Day went.

The Best Present

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I received a happy box in the mail yesterday! Something very cool was inside of it and I wanted to tell you about it.

Occasionally, I get random happy packages from certain friends. My friend Jim particularly, he sends me random boxes of completely bizarre things that he finds and thinks of me. Anything from Pez dispensers that have no head, to creepy little trinkets he finds in thrift stores, to snippets he cut out of a magazine. Lots of chicken related things. I adore getting random packages in the mail. I think everyone does, really. Something like 10 years ago, I did a happy box exchange in which I invited my friends to participate, and I sent out a box full of things that made me happy to each of them. I burned CDs of music that I like, made little packets of cake sprinkles and stickers, made happy little finger puppets from IKEA into refrigerator magnets. I included a note on everything to explain what it was and why it made me happy. Why it was important to me to include in that particular box. The idea was for it to be in exchange, and once they had received my package, they would send me a box of what made them happy back. Not everyone sent me a box back, but many did (with a couple notable people going way, way overboard above and beyond), and I adored every single one of them. Satou-chan was one of those who reciprocated (in spades).

I’ve known her for many, many years. She’s one of the very first people I ever met online and forged a real-life friendship with. We bonded over a common love of Japanese culture, writing, and a particular manga called Fushigi Yuugi. I flew all the way from Oregon to Atlanta, Georgia to attend my very first anime con with her and Holly, our other anime obsessed writer friend. It remains one of my happiest memories. I’m grateful every day that we kept in touch. She wound up moving to Arizona, and I was lucky enough to be sent there for work sometimes, and on one happy occasion we were able to sync our schedules and meet up in person again. That, also, is one of my happiest memories.

Satou-chan just sent me happy box.

She had texted me to let me know it was coming, and to confirm my address, and to apologize for the length of time it’d been since we last spoken. I truly wasn’t worried about that last thing, because communication works both ways and I’m just as guilty about not keeping in touch. I honestly don’t get offended when people go long periods of time without contacting me, because I am absolutely awful at it myself. My most cherished friendships are the ones in which I usually don’t speak to them for months, sometimes even years at a time, and when we do pick up it’s right back where we left off like no time at passed at all. My friendship with her is one of them.

Inside the box were many truly happy things. Including one of the most amazing cards I have ever seen in my entire life – it was a paper craft tray of sushi. Inside, she’d written all sorts of almost embarrassingly praising words, letting me know how much she cherished me and my friendship. The sushi card was because one of her favorite memories was of our Ariona hangouts and going to sushi together. I won’t lie; I totally cried. She also sent me stickers, because duh, and some happy fairy sparkly things, a glorious pair of socks, and probably the sweetest children’s book I have seen in forever. She said it was her favorite, and it reminded her of our friendship. (Yeah, I cried reading that, too.) Everything in the box was wrapped in tissue paper, separate little packages for me to unwrap and reveal surprises within. Every little packet had a note on it, explaining why she was giving me that particular thing, or what was on her mind when she bought it, or simply “This box contains tiny dinosaurs. I am sending them with love. <3 “

I loved every single gift, every single note, every single thought.

But the one that stood out the most, and the one that is probably my favorite thing in this whole entire box, was the note attached to a little bundle of things like lip balm, a keychain, and a little (freaking ADORABLE) notepad: “So… I realized early on that a lot of the stuff I bought for your happy box might be hard for you to use. (One reason I didn’t send.) Then I realized I had no business deciding that for you, and decided to send them anyway.”

And THAT, my friends, is how you be a fucking ALLY.

Tainted

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J likes rabbits. A very specific rabbit aesthetic, mind you. Get those Hallmark Easter bunnies out of here. Victorian rabbit dolls, like The Velveteen Rabbit, Albrecht Dürer’s Hare wood cut. When I see these kinds of rabbits, I think of him. If it’s something online, I share it with him through Facebook or text message. When I see these kinds of rabbits, I think of him and smile.

My brother Gecko likes birds. When I see something funny related to birds, I think of him. I forward bird jokes, and bird memes. When I see something funny about birds, I think of Gecko. Birds make me happy, because they make him happy.

Danielle liked manatees. I mean – I imagine she still does. She likes them because they were chubby and round and adorable. When I see something about manatees, I think about Danielle. I can’t share those things with her though; she’s no longer in my life. When I see things I know she would enjoy, I am reminded of her absence, and it hurts a little even though I like that thing. I enjoy manatees a little more than I might have otherwise, because they made her happy and I loved seeing her happy. But now they also make me a little sad because they remind me of her, and she’s no longer around and seeing manatees makes me miss her.

Sometimes I wonder what associations people have with me, and what sort of currently happy things will become bittersweet once I’m dead. Marshmallow Peeps, I’m pretty sure. Stickers and things with googly eyes maybe. Mister Rogers. Probably all of the things that people currently forward to me on Facebook and email, silly little jokes and references that make them think of me and smile; and knowing I would enjoy them also, send them along.

Sometimes I think about the time that will come, when there will be that thing that reminds someone of me, and I won’t be here to forward that thing to. Some cool fact, or happy little thing that someone will want to share with me, but they can’t. Because I will be dead. When some currently goofy thing becomes bittersweet.

What happy things I am going to taint with my absence?

It’s a pretty fucked up legacy, ruining something quintessentially silly. To be able to fuck up stickers for somebody. Stickers, for fuck’s sake. Happy little adhesive pictures. Someday, someone is going to be at a craft store minding their own business, and their eyes will wander to a happy display of delightful little sticky images, and they’re going to get really sad. Because they know how much I love them. Loved. It’s a completely ridiculous thought. An adhesive cartoon octopus is going to have the power to make someone cry.

We don’t truly possess the power to control how we are remembered. We can only try to steer the shape that our selves create in someone’s memory. A vague outline, to be filled in with the colors of experiences and emotions and perceptions beyond our control. I hope to be remembered first and foremost as kind. Death positive. My almost unhealthy obsession for cats, Mr. Rogers, stickers, googly eyes, nature documentaries, Halloween, spiders, cartoons, marshmallow Peeps, swearing, Bob Ross, Skyrim, Pokemon Go, etc etc etc etc notwithstanding, I really hope kindness and death positivity are the first things people think of when they think of me. I’m okay with those two things being a little bittersweet. I’m comfortable with someone coming across an article about green burials and thinking how much I would’ve approved and appreciated it and getting a little bit sad that they can’t hit that forward button.

Those other things, though, are all really happy things and I hope my death doesn’t ruin them too much. At least, not for very long. Marshmallow peeps have no business being maudlin. Sometimes I almost regret liking shit that is so silly, so fervently, because the thought of an adorable cartoon bat making someone tear up a little is really fucking depressing. It instead would make me very happy to think that someday one of my friends is going to slap a sticker on their laptop and think fondly of me without sadness coming in and fucking it up. Because stickers are awesome.

Bonus points for googly eyes.

Retrospectacle

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Obligatory 2018 retrospective post coming right up!

This last year seemed particularly unkind. I honestly can’t recall another year in my life in which I was so tightly wound, all the time. My stupid disease actually seemed like the least of my worries. I distinctly recall thinking on many occasions, “please can this bullshit be over so that I can just focus on actually dying?” Our current political climate was a massive source of stress, every day, all the time. I had set up filters for my Facebook and other social media to automatically purge all mention of that asshole currently terrorizing us via the White House just to maintain some shred of sanity. Even still, it intruded too much of my reality, too often. I lost entirely too much sleep just panicking on behalf of those I love, and myself, and total strangers. Too many nights spent in abject fear as I watched my country descend into absolute fascism. In our last session together, my therapist actually told me that his wish for me in the coming year is to stop giving a shit. I can do literally nothing about any of this, and I would be so much happier if I could just let it go.

But then, he conceded, if I did somehow managed to pull it off he wouldn’t even know who the hell I was.

January I got my new wheels. She is named the SS Opportunity, because even before I get in that chair it weighs almost 400 pounds, and so if you do not get out of my way when I am in it you will have an opportunity to experience being in a wheelchair for yourself. I didn’t start using the chair right away, primarily because I had no real way to transport myself and the chair to places I needed to be. I needed a wheelchair van first. I also got a new boss at work, my sixth in 10 months. He came with a bold set of new ideas and new plans and promptly set about firing all of my techs and replacing them with new guys. It’s a given at that company that every time there is a new leader, they have to put their fingerprint on everything. It was a lot of shakeup and stress I really didn’t need.

February was particularly ugly. There was a very abrupt end to a very young life that fucked with me more than I can tell you. It’s not my business to tell you. I questioned a lot of things. My mom had a heart attack. Fuck February. The end.

March. I had my first clinic day of the year, my hands were officially decreed garbage as they registered nothing at all on the grip test. My estranged father, whom I had not spoken to or heard anything about in 20 years, died. I paid for his cremation. That’s all I have to say about that. Stephen Hawking died, and so ALS lost its one celebrity.

April was my fourth Sadiversary. I also had my 43rd birthday. We road tripped to Arizona to buy a wheelchair van, because they averaged five to $10,000 cheaper there. The road trip was entertaining, we learned a lot about how ADA regulations are apparently just a suggestion in Arizona, and no one who writes the rules actually has any fucking idea what it’s like to be in a wheelchair. Spoiler alert: a grip bar behind the toilet is absolutely useless and in it self does not make for an accessible bathroom. The van was at the mechanics within the month for a door closing issue. However, thanks to having the van I was able to start taking the SS Opportunity to work. She makes everything not only easier, but sometimes possible at all. I had gotten used to doing without a drink at work, or waiting until I was nearly peeing my pants to use the bathroom and planning what else I could do while I was up, because of the effort required to do those things with the walker. With the chair, I could just… Get up and go whenever I wanted. Wherever I wanted. It’s kind of nice to be able to put in a full day’s work and still have a little bit left of energy at the end of the day. I had forgotten what that was like.

May was blissfully uneventful.

In June, I put in notice at work. I lost a lot of sleep over that decision, and popped more Ativan than I’m probably comfortable admitting. My manager was kind of the opposite of devastated, which cemented in my brain it was absolutely the right decision to make. I gave him almost 3 months notice, and set to work making sure I did everything I could to keep the wheels at my job turning after I left. I was asked many many times why I bothered, and towards the end I started asking myself the same question. I freely admit though, to enjoying heaping spoonfuls of schadenfreude (I am fucking amazed that this program knows schadenfreude) when the CEO of that company was ousted for unethical behavior. I watched an amazing, very positive and life-affirming concert, and a burlesque show. June was pretty all right.

July saw me making official announcements to coworkers about leaving, and many many things happening at work that cemented it was a great idea to be leaving now. Which is not to say that I didn’t obsess and stress and freak out about it anyway. So much of your identity is tied into what you do for living, and I had – am having – a really hard time letting that go. The world at large collectively lost its shit over plastic straws. It had been quite a long time since I had seen so much ableist garbage on my newsfeed, so I guess we were overdue. I spent a good chunk of time educating idiots on exactly why plastic straws are a literal lifesaving device. I also got the bill for my wheelchair this month, and was eternally grateful yet again for the health insurance my job provides. I could have bought a very, very nice car for what this thing cost. I got angry again that the insurance company does not consider the lift feature to be necessary when they refused to pay for it. Still, I’m very glad I opted in for that anyway. I use it probably every time I sit in that chair, and it makes everything so much easier. It’s rather nice to be able to look people in the face when you’re talking to them; you really do become invisible when you sit in a chair. If you’re not eye-level, people forget about you.

August was when I stopped actually reporting to work. August 31 was my last official day, with three weeks of vacation to follow. So much angst. August was also when Jillian happened at me with her rotten cabbage juice bullshit. It takes a lot for me to get that angry. It was nothing however, compared to the anger of all y’all. That was a delicious thing to behold. I am grateful for you every day. I will never, ever doubt that you all have got my back.

September was the end of my working career for reels. It still doesn’t seem like a thing that genuinely happened. I had my last clinic day of the year, and my breathing was officially rated problematic. So that was fun. I had a team walk with me in the ALS Association’s walk to defeat ALS, and that was a very uplifting experience. As usual. And again, if I ever had any doubt that I have a tribe that supports me, that doubt is gone. I am loved and supported, and I will never forget that.

In October, I gave a death positive talk at an art show. It is probably one of my favorite things I’ve ever done. I’m genuinely proud of what I wrote for that show, and hopefully I convinced some people to fill out their advanced directive. Death positivity continues to become a mission in what’s left of my life. Halloween is my favorite season of the year, and we did a whole lot of celebrating and shopping and buying delightfully useless decor and stuffed animals. October is also Jay’s birthday, and I simply don’t have words to convey how important that man is in my life, and how grateful I am that he remains my best friend and my strongest ally and my chief supporter. I literally do not know what I would do without him.

November. Elections. Just… So much. I don’t think I really slept at all in November. It was the start of a pretty serious slide into depression that I am still fully immersed in. Hence my silence. Having nothing to do is waiting very heavily on me, but I also don’t really have the energy to do anything specifically. I’m not ready yet to look for volunteer work or anything. I bought a new laptop. That was pretty cool.

December has been spent desperately attempting to make something of what my brain has fixated on as my last proper Christmas. Also be around for the next one, but my hands won’t be able to open presents, or wrap gifts, or bake a fruit cake. Leaving my bed much less my apartment has become an ordeal. I fully realize a lot of that is the depression talking. But most days, things seemed pretty dark. Because they are. I have a terminal disease, and sometimes I just can’t find that sense of humor about it. Most days I can. Some days, it’s even actively hilarious.

Today marks the new year. Even if I die in the next five minutes, there is one number higher on how long I’ve lived. I have no fucking idea what the coming year brings. All I know for sure is there are a couple of concerts I have tickets to. In September, my short-term disability runs out. I really, really, really hope I have a permanent place to live by then. At some point during the new year there will be a post all about that I’m sure. Meantime, I have some eggnog and some snacks and a warm bed and very cute cats and no plans to do anything tomorrow but sleep and play video games. Can’t complain. I will take 2019 as it comes, and simply pray that it is kinder to me than last year was. I hope that for all of us.

Happy new year, my darlings.