Did She Die?

I’m not dead yet!

Darlings, the move was a DISASTER. But it’s over! Now I just have to deal with my guilt over not being able to help unpack. J the Magnificent bought me Animal Crossing to occupy my brain instead, so my life the last month has been this

and this

J is doing what he can, and people are offering to help, but so much is dependent on other things – for instance, I can’t have most of those boxes unpacked until I get shelves installed because I have no places to PUT things yet. My awesome brother is helping with the shelves (as well as refinishing the floors before we moved in, and installing sink and toilets, and moving an entire wall) but he’s on-call as a tow driver so he can’t come over regularly to help.

So it’s moving sloooooowly.

This might well take the rest of my life (har har) but we’ll get it there. In the meantime I’m set up enough to be comfortable in my nest of a bed, the cats are introducing themselves to each other, and I have animals to cross.

I’m doing okay. I hope you are, too.

Home. Coming.

Seven years ago today, I had just started cleaning and painting my new home. I’d had keys for a scant two days and there was a lot to be done. Seven years and two days ago my dream of homeownership had finally come true. It was pretty much my dream home. Huge backyard, a shed AND two car garage for storage, five bedrooms, huge kitchen. I had such dreams for that house. I was going to convert one of the bedrooms to be a kitten room and foster kittens. I was going to install baker’s racks I my kitchen and get serious about patisserie in my spare time.  My office was set up for studying for my computer science degree in the works, a spare bedroom-slash-library for guests, my bedroom with a ceiling like the night sky. It was gonna be a giant garden in the back and a haven for the snakes I was delighted to learn lived there.  I was going to install bat houses.

Six years, eight weeks and one day ago I received news that changed everything.

One of the first things to hit me, after the whole “holy shit, I have a terminal disease and I’m going to die” thing was “oh no I have to sell my house.” My new dream house was two story you see. I was beyond crushed, I was devastated.  I hadn’t even had it for a year and now I was looking at having to give it up. And unfortunately giving it up was not a question. I tried every scheme I could come up with. There was no way to put a master bedroom downstairs, no way to expand the downstairs bedroom to encompass a roll in shower, no way to put a lift in to get the wheelchair upstairs. The hallway was just too narrow. The layout was just too open downstairs. The only aspect of choice I had was, do I sell it now? Or do I wait until I’m physically forced out of the place.

I chose option one. The thinking was, I could get out of this house and purchase a new one while there was still ability in me to decorate the new place. If I waited until I was wheelchair-bound and had useless hands, I wouldn’t be able to make the new place my own. So I sold it pretty much right away, at a nice profit, even.  It wasn’t even on the market a week. I had owned my dream house for just over two years. I rented an apartment as a temporary measure, because I knew it would be a little bit before I could find the perfect place. The new place had to be single-story, had to be wheelchair accessible or at least have the bones to renovated to be so. And crucially? It had to be affordable on what I was going to make while on disability. I had estimates of what I was going to be earning, and at the time Danielle was going to move in with me so I would have help with the mortgage.

It has turned out to be a nigh impossible task. The economy recovered in spades, and suddenly I couldn’t afford literally anything in the area. People were coming from California and other places with cash to purchase homes and I simply could not compete. Real life then conspired to interfere, Danielle and I split as friends, so I was suddenly going it alone. Jay decided to move in with me and so all of his needs also needed to be addressed in the house search.  My stepfather passed away, leaving my mother unable to afford her home, and so I moved her in with me in my 2 bedroom apartment and we weren’t sure what was going to become of that, if her living with me would be a permanent solution or not. My needs became very, very complicated, my buying power dwindled to almost nothing thanks to the booming house market and the pittance you earn on disability, and my “temporary” apartment became more of an unwanted permanent fixture.

Staying permanently in an apartment was never an option though. I need a roll in shower. Apartment complexes tend to frown upon you doing demolition in their units, so installing one here is not an option. Ideally I wanted to stay in the same-ish area so I could keep near my support network.  Leaving Portland metro, thus leaving the care of Doctor Goslin, was NEVER an option. I need a bedroom big enough for my bed, wheelchair, and a lift to eventually get me out of bed into the wheelchair. This place simply does not have that much space; I play a stupid game of Tetris with my wheelchair, walker, cat scratcher, and closet door every time I get dressed. And even after the economy recovered somewhat, and even though Jay was willing to commute up to an hour each way to work every day so I could extend our search parameters to include BanjoLand (where our neighbors were GUARANTEED to hate our liberal asses), there was simply nothing out there for me. Everything we found was falling apart, or the master bathroom wasn’t even big enough to get a wheelchair in, much less turnaround in, or the side bedrooms where J and my mother would be staying were closets.

Quick shout out here because credit where credit is fucking DUE.  My real estate agent Christina Griffith is one of the most patient people on the face of this planet. I half expected her to give me up as a client at any time. It was frustrating for us both, but she never quit on me.  I didn’t have an option to quit and she did, and I’m grateful as FUCK she did not take that route.

All I wanted was a place to live until I died, one way or another. My last breath in my own bed, with my cats beside me. No more transition housing. A place I could get around in my wheelchair, with place to store all of the necessary equipment (like a huge-ass Hoyer lift) that will become part of my life as the disease progresses, with space for the people taking care of me. (And the option for grocery delivery because I’m in a wheelchair and mom is blind and J can’t do everything.)  I didn’t care what kind of dwelling it was. House, condo, manufactured home, as long as it was accessible, and affordable, I could literally give a shit. It has been the single greatest stressor in my life ever since I was diagnosed. No hyperbole. All I want is a place to just be and be allowed to die in and not have to worry about my belongings getting packed up and my cats transitioned a to new environment separate from me while I still drew breath. The actual disease and its effects have actually been secondary to all of this. My life has primarily been all about finding a home.

It’s taken five years.

One thing I’m definitely grateful for is all of the people helping me look. My realtor is amazing, as I said, (seriously if you’re in the Portland metro area look her up) and I had lots of friends and family keeping an eye out for me, as well as automated searches on places like redfin. This lead came from my psychiatrist of all people. He’d been keeping an eye out, but most of the places he found were way out of my price range.  A client of his was sadly transitioning to a care home, and his wife had to sell their home. It was a depressing thing for them but could be a godsend for me – it was already ADA set up. Ramps to everything, even the backyard, doors wide enough for a chair in every room.  He gave me the owner’s email address, and I didn’t have high hopes to be honest, because there was no way I was going to be able to afford this place. I contacted them anyway, and the wife turned out to be a total peach.  She answered all of my questions gracefully,  but sure enough their asking price was $50,000 more than I had been approved for. I told her thanks anyway. She said hang on. let’s talk.  It meant a lot to her that we’d been introduced through my shrink, and she really wanted the accessibility features to be of use to someone. Let’s have me look at the place, she said, and we can discuss it.

I didn’t get my hopes up.  I didn’t dare.

We toured the place, and it was such an awesome feeling to be able to actually go into a house I was looking at purchasing, and wheel around freely with nothing off-limits to me. Typically when we go to look at a house, I stay in the van while J and Christina go inside and then report back to me. All I’ve had to go off of was their opinions and maybe a video tour taken on Christina’s cellphone. But here, here I was able to see for myself. And here I was able to see myself living in this space.  This could be My House. The space was big enough. There are already ramps everywhere. The shower even was already a roll in shower. It was not quite perfect, the other two bedrooms were still kind of small. But with a little renovation we could make things work. So not daring to get my hopes up, I checked with my bank to see if maybe I could get approved for just a little more money. It still wasn’t what they were asking, but it was all I could afford.  The bank said OK, and I presented an offer tens of thousands less than they’d said they were going to ask, fully expecting a counteroffer or flat-out refusal.

They said yes.

I get the keys tomorrow.

It’s been a very fast roller coaster ride, having to scramble to get all the paperwork together, and proving that even on SSDI I can make the mortgage (thanks ENTIRELY to Intel’s retirement plan), getting everything coordinated and submitted and 10,000 signatures on triplicate and witnessed by two rabbis and a chimpanzee, but it’s all sorted. It’s taking literally everything I have saved and my 401(k) and what little stock I still owned, but we’re doing it. There’s gonna be some work to do, we need to move a wall to make one of the bedrooms a livable size for J. There’s painting of course, but that’s just cosmetics. My fondest wish is to see what putting in central AC will cost, because the placement of the windows are not great for the window units that I have and I am a huge baby when it comes to heat and it’s going to SUCK when I’m too hot and unable to push the covers off. I’m not sure I’m going to be afford AC, but it’s a dream I have. Buying a house is incredibly expensive and there’s always going to be one more thing to purchase that you never thought of. I have to hire movers. Not that I don’t have a squad of willing volunteers, but for one – COVID is still very much a thing, even though America has seemed to decide that it’s boring now so we’re just not gonna quarantine anymore – and for two, most of my friends are willing but not necessarily able. I’m 45 years old and most of my friends are around the same age bracket. We can’t just haul shit around willy-nilly anymore. And my adjustable bed weighs a ton and I’m not subjecting people I love to that nonsense. So I’m doing what I can and praying that I am able to afford it all. So hey, if you ever thought about dropping a dime into my GoFundMe, now would definitely be a good time.

I called all of the utilities today to transfer them into my name, and every single one of them wished me congratulations on the new house. It’s a magical phrase. My new house. I was sincerely beginning to despair it was ever going to happen, and I would be relegated to sponge baths in my bed until I needed to be transferred to a care facility. I’m so happy it was wrong. I’m so happy this finally happened. I’m so glad I get a permanent address at last. I wish it hadn’t taken so long, and I’m no longer able to do all the decorating myself, but I can be a damn good supervisor and project leader. My friends are amazing and they will help me. I will have the space worthy of dying in, at last.

My final resting place.

Surfeit/Deficit

What even is time anymore.

I had a stray thought last night that it had been a couple of weeks since I’d updated the blog and it was probably time. I checked my blog and saw that the last post was on April 8 and I had a little baby crisis of time – holy shit it had been almost a month! It was longer than I thought! I had better get on this. I resolved to make a post the next day when I woke up, and went to sleep. Now that I’ve opened up my blog to post a little something, I’m actually awake enough to do the math and realize it had been only 12 days. Hardly a month. Calm down, past me. We’re fine.

I have absolutely no concept of time anymore, apparently.

To be honest? I started losing it when I was officially unemployed. Whilst working, it was a key part of my job to be keenly aware of what day it was, what week it was and how it relates to the rest of the workweeks, what financial quarter we were in, even. After little time away from my job, the days kind of started to blend together. It does that when you’re unemployed. The days of the week are the first thing to cease meaning anything. Or more precisely, weekends are the first concept to go. Everyone else is celebrating because it’s finally Saturday and you’re here thinking… Yeah okay, and? The days of the week all blur together eventually. And then the months. There is no clear delineation anymore between the months of the year. January? That was like a week ago wasn’t it?

Quarantine, of course, has brought the entire world to that level. Except for the “essential workers” being martyred on the altar of capitalism, a lot of us simply don’t know what time it is anymore.

And let me tell you, that is a really weird way to live when you know for a fact your time on earth is limited. “Hurry up and wait” has taken on such a different meaning. As I touched on in previous posts, there’s a part of me that feels very much like I am wasting precious time by sitting here and doing nothing. And there is that part of me that thinks if I had a complete choice in the matter, sitting in bed petting my cat and playing on the Internet is pretty much what I’d be choosing to do anyway. So imagine that… with an underpinning of urgency. There are things I really need to have done, and soon, and they’re not getting done. Now, when I have all the time in the world until I suddenly don’t. I have a will to file. I have an inventory of all of my belongings to document and set up for disposition for after my death. Holy FUCK do I have a lot of belongings. I’ve been trying to buy a house for the last five years – I should probably be starting to think about packing up. (Moving. Yeah, that’s its own post.)

Of course I need to be a little kind to myself, and realize that my capability is limited. I’m not who I used to be, I can’t just get on a tangent and sort and refile all of my paperwork in an afternoon like I used to. I can’t just decide to reoragnize and pare down my cosmetics. I have the time, I just don’t have the ability anymore. Unfortunately, I do still have that inclination. And so many afternoons I sit here in bed looking around and thinking about all of the things that need to be doing that I could do if only my hands worked. It’s not like I’m being lazy and not getting things done, I just don’t have the capability to do them myself.

I also need to give myself a little bit of shit; because while it’s true that I cannot do these things myself, I have a whole lot of friends who would happily come over and help me do exactly those things. Friends who would happily hang out with me for little while and put my stickers into albums for me while we chit chat about everything and nothing. I had a friend come by and completely clean out and reorganize my pantry for me, therefore I know these people are available and willing, I just need to ask. And I am so very bad at asking.

Obviously right now quarantine doesn’t make asking for help possible. So I have the inclination, but not the ability, and not even the ability to call for help. My only possibility is to sit here, and feel time slipping away from me while none of this gets done. I have so much to do, and so much time to do it in, and I just can’t. Time and I have a very complicated relationship right now. Someday, sooner than I’d like to think, time will run out. And there’s nothing I can do about that. There will definitely be many things left undone. I am guaranteed to not have as much time as I think, much less as much time as I want.

So in the meantime, I spend my too much/not enough time petting my cats, and playing on the internets, and stressing about everything I still have to do. I think right now with quarantine, a lot of people are feeling some version of this. And we all need to be a little gentle with ourselves right now. A little forgiving. A little softer. Not all of it’s going to get done and were going to have to be okay with that. We are all in trauma response mode right now, and for me there’s a weird sort of calm that comes with this disaster pandemic. I feel like the playing field is little more even between the world and me. Like, a lot of people understand where I’m coming from now that simply didn’t have that capacity earlier. And we all sit, and wait, and feel like we should be doing something with our time and not doing that thing and feeling incredibly guilty for it when really? We shall be congratulating ourselves for just existing right now. Things are hard. Time is its own thing, and it’s going to do whatever the hell it wants to.

I hope regardless of what’s happening in your too much/not enough time, you’re being safe and being kind to yourselves. And patient with each other.

Much love, from 6 feet away.

Washed Up

Yesterday began quite poorly. The tube going to my catheter’s drain bag popped out during the night, and apparently I slept hard enough I didn’t wake up until you could wring out my pajamas like a washrag. Thankfully I sleep with a mattress protector so it wasn’t a total disaster. Unfortunately my port is accessed right now, so I couldn’t take a shower and had to make do with washcloths and soapy hot water.

Fortunately I have a J. He’s more amazing than I could ever tell you and OH HOW I HAVE TRIED. He’s working from home, so he brought his work laptop over to monitor work requests and emails and changed out my bed. Best. Friend. Ever. While he was putting things through the wash, he asked me where a particular soap was.

“I don’t fucking know,” I told him, exasperated and in a bad mood. “Why would I know? I haven’t done laundry in TWO YEARS.”

The universe did a record scratch and the words turned to ash in my mouth.

“Thaaaaaaaaaaaat was not a happy thought,” I said quietly. A gross understatement. I haven’t done any real cleaning in my apartment in about two years. I can’t push a vacuum cleaner or wash a window. I can barely even wash my own hands. If I didn’t have my mother living with me to bring me food, I’d be screwed.

I know I am not just worth my productivity. I know I’m worth more than what job I can do, what tasks I can perform. But sometimes it’s so easy to forget. It’s easy to feel worthless when you have no tangible contribution to make. After a lifetime of hard-won self reliance, losing that control of my own destiny is a hard lesson I’m still learning.

And until I do learn – if I do learn – then every self-awareness moment like this is going to continue to punch me in the guts. All I can do is try not to let it under my skin so much when it does.

Meanwhile, I have a J to help me wash the sheets. Even if I don’t know where the soap is.

COVID Operations

So. 2020, huh?

HAHAHAHAHAHhahahahooooboy.

I came into the new year at a handicap – no pun intended. The holidays weren’t particularly kind, it feels a bit like I didn’t get a proper Christmas and with my Christmases so limited I really felt robbed. The new year was particularly rough. It was a prime chance to feel incredibly sorry for myself. Everyone was reflecting on the last decade, which forced me to do so as well, primarily reflecting on how much the last 10 years took from me. I lost my romantic partner. I lost my best friend. I lost my house. I lost my health. And then everyone started talking about the new decade, and all of the marvelous opportunities it was going to present, and I’m just sitting here thinking I don’t GET another 10 years. It is supremely unfair.

So yeah, not a great start. And then the world just conspired to keep everything as shitty as possible. The idiot in charge nearly started World War III with his playground bully behavior. Australia caught fire. And now this pandemic. Everything’s going wrong. It’s very easy to feel helpless and hopeless.

At the risk of sounding like a motivational poster though? I’m in a uniquely privileged position right now. Terminal diagnosis aside, I have a LOT to be grateful for. I’m very worried about COVID of course, but not in any immediate way. I know damn well with my already hindered breathing, catching it would basically be a death sentence. But I’m smart. I’m careful. Those people I physically interact with are also careful. I worry about it in a vague way, but all of the day-to-day concrete problems that are affecting most people aren’t touching me right now and I am incredibly grateful.

I don’t have to worry about losing my job, because I’m already medically retired. I don’t have to worry about keeping my job or finding a new one when this is all over. I don’t have a job to force me to interact with the public on the daily.

I don’t havr to worry about making my rent, because I’m on a fixed guaranteed income. Until they take away Social Security and disability benefits, I am secure financially. These stimulus checks everyone’s talking about would be nice if they happen? But I don’t NEED it in a strict sense. I have savings. Granted, they are earmarked to buy a house, but if things went seriously pear-shaped I can float us for six months. This pandemic has not been a financial hardship for me.

I don’t have to worry about cabin fever, because I’m an introvert by nature. I’ve always been self entertaining. Being pretty much bedbound for the last year or so has honed my skills to a sharp point. I have a lot of things to entertain myself with. Though of course now that I’m told I can’t socialize, I’ve been wanting to. I’m not an introvert or an extrovert apparently, I’m a jerkivert. I’m more like a cat than I thought; I do crave interaction but only on my own terms. And if you tell me I must remain away that’s when I want to be around. Meow.

I don’t have to worry about supplies, because I’m naturally the sort of person who buys groceries for 12 people even though there’s only two of us. Right before all this went down, I had bought a case of toilet paper and paper towels. There is food literally overflowing my pantry, I have a freezer outside in my storage unit chock-full of food. We are well stocked for a couple of months of absolute isolation if we had to be.

I don’t have to worry about emergency supplies either, because I have so many incredible people in my life who have made a point of asking me if I need anything. I’m already well acquainted with mail order, so that’s also been a blessing, but if I needed anything in emergency I can think of six people off the top of my head who would go get it for me. I am safe and secure and well positioned for whatever needs arise.

I don’t have to worry about a support network, because I already have the best one. We keep each other safe and protected and loved and secure. We do kind things for one another whenever we can, and I quite literally do not know how I would survive any of this without them. This includes you also, dear reader. I’m reminded time and time again that the kindness of strangers is a very real thing. You keep my faith in humanity alive. You give my optimism a serious reason to exist. There’s definitely precedent.

And so until – or IF it even happens – until myself or my loved ones contract the virus, this whole pandemic thing hasn’t fazed me, really. I’m in a good position to deal with this. I’m actually in a pretty good position to support others who are going through it, and that’s a massive blessing. Or stroke of luck. Or happy circumstance. However you want to view it. Things aren’t that bleak right now. It could have been so much worse for me. I’ve said it before, I will say it again, probably 100 or more times on this blog even – I am a very lucky woman.

I’m so fortunate to have what I have.

So how are you folks holding up? Anything I can do to help you?

Feed Me, Seymour

Well hello. It’s been a minute.

I’ve had a couple of doctors appointments which I guess I should tell you about, since I tell you everything. (Just about. More than I ever thought I’d tell someone. Never did I ever think I’d be telling absolute strangers about my poop. Welcome to this!) I had MRIs done to make sure there weren’t obvious physical deformities causing the problem and there weren’t – the MRI came up normal, except I apparently have a growth on my adrenal gland? because of course I do. We’ll check on that in six months to make sure it hasn’t grown. What’s one more medical problem to keep tabs on? Add it to the pile! I mean, even if it IS cancer, the fuck are we going to do about it except have a race to see which one kills me first? Winner literally takes all.

ANYway. We started down the road of gastroenterology to figure out what was going on there, and that whole appointment was a complete farce. It started out as a disaster before we even got there -literally everything went wrong in getting me out of the house and to the appointment to begin with. The first ice of the season needed to be scraped off my windshield, and I don’t have an ice scraper in the van yet (hooray for hotel card keys!), we missed a turn, there was an accident on the road causing a delay, and then we wound up going to the wrong place altogether, which was totally my fault for assuming I knew where it was. There is a huge Providence Hospital which contains many professional medical offices inside, and that’s where my urologist was, so that’s where we went. It turns out on that very same street there is a little business park next door, which is where I should have gone. It was ridiculously close but just too far to walk in the literal freezing cold. So we had to go back across to the parking structure, load me into the van, strap my chair down, drive half a block, park, unstrap, unload, get inside. I arrived 11 minutes late for my appointment and was told that exactly 10 minutes is the cut off and I would need to reschedule. She wasn’t even allowed to ask for an exception, she cheerfully told me. I had tried to call them to tell them I was running late, but wound up in a phone tree to press one for physical address, two for the fax number, and if this is an actual emergency etc. etc. and no way to speak to a human being at all. So, irritated, I conceded defeat and made an appointment for later that afternoon with a different doctor and apologized a lot to J for making him wake up at 6AM the day after Christmas for nothing and now he had to miss even MORE work because of me.

At that rescheduled appointment, the doctor was 25 minutes late coming in (because when doctors are late it’s fine), hadn’t even looked at the MRI which had been done, and so he wound up leaving the room to go do that while we waited some more. The doctor came back, confirmed that everything looked normal there and there seems to be no physical reason for my issue. He suggested a load of tests for bacterial infections, and a host of other possible issues in my guts. Also he told me to cut out caffeine and artificial sweeteners for week and see how that went. All of this can cause loose stools, he explained, so we’ll start with the basics and go from there.

All of which has absolutely nothing to do with the main problem.

In the meantime, collect a stool sample with hands that don’t work! Poop in this thing and then stand up and grab it from under you without spilling everything – you can do that right? Here’s four tightly capped containers – threemwith liquid to spill everywhere! – and tiny little spatulas to collect the sample. And gloves that you can’t put on because, again, your hands don’t work. Easy peasy!

I am legitimately afraid of the prep work that will be required when he decides I need a colonoscopy. I quite literally do not know how I’ll pull that off.

I’m sensing echoes of my treatment course with the urologist, where we try a whole bunch of stupid things that aren’t going to make a lick of difference, but at least we can be said to have tried something. And then we’ll get tothe invasive as hell tests and conclude that welp, there’s weak muscles there and that’s probably the problem. BECAUSE I HAVE A NEURODEGENERATIVE DISEASE. Because of course actually listening to me in the first place and taking into account I have a disease that’s killing all of my muscles is just crazy talk. My urologist outright stated I had no strength in my pelvic floor and then still wanted me to try Kegel exercises. YES LET’S EXERCISE MUSCLES THAT DON’T EXIST SURELY THAT WILL SOLVE EVERYTHING. My gastro apparently is focusing on the loose stool part of the equation as if somehow that’s magically going to help me retain poop. I guess the problem WILL go away once they get me constipated enough, and we’ll just ignore that that comes with its own problems. And as with my urologist, I am 100% certain that the ultimate solution is going to be surgical, it’s just a matter of waiting for the specialist to arrive at that conclusion.

So there.

This last Thursday was my follow-up with Dr. Goslin. I reported in everything that I just told you about, and she agreed that the ultimate solution will probably be surgical. And in the worst segue ever, like, “oh, speaking of surgery… ” she asked if I had given any more thought about a feeding tube.

I hadn’t come prepared to have that conversation. I repeated what I had told the pulmonologist, that I knew I was going to get one eventually, but I hadn’t really thought of it happening yet. She repeated his point about the breathing being the accelerator of the timeline; it’s not that I can’t eat on my own, it’s that my breathing is declining and is making the surgery more dangerous. She said that she really liked to strongly consider it once breathing hits 50%, and I’ve been hovering around 48% for a little while. It’s a bit different from the 40 to 20% that the pulmonologist told me. Whereas he had told me somewhere between six months and two years, she made it sound like, “so what are you doing on Wednesday?”

Even though I’ve been mulling over since last clinic, I still haven’t actually visualized that happening in a practical way. It’s an idea, not a visualization yet. It looks like I have to start that process now. She pulled out a rubber torso that had feeding tubes installed in it, to show me what to expect. She went over the basics on how to take care of it, and stressed that I’m welcome to eat for as long as I can, this won’t interfere with anything, it just needs to be flushed with water once a day. She gave me a photocopy of a photocopy of a photocopied pamphlet titled “So They’re Telling You to Get a Feeding Tube”. It was written by one of her patients and was actually pretty informative. It talked about who pays for supplies, how to get supplies, recommended procedures for care, what to expect from healing, and things like that. It kind of read like one of my blog posts if I’m being honest. Without the sarcasm. I’m grateful it exists, and really, really grateful I’ve got friends who’ve dealt with them personally, both as patient and provider to answer all the questions I know will come up.

It’s an outpatient surgery, but she said they like to keep you overnight for this one, just to make sure everything’s okay. It’ll be my first overnight stay in a hospital ever. For now I’m thinking it over and tentatively making some minor plans, but nothing set in stone yet. We’ll talk about it more in depth next month at clinic. I need to schedule it around the clinical trial that I’m still participating in. It shouldn’t be that big a deal. Physically. Psychologically, emotionally, it is a Very Big Deal.

It’s just that with the catheter, this, and a colostomy bag in my future, I’m beginning to feel like a reverse porcupine. A little more Capital-S sick. A little closer to the end of the journey. It’s hard to think about. I don’t want to think about it. I’m death positive as hell but that doesn’t mean I’m in a hurry. I’ve still got a lot more to say. More I want to do. So much more food I want to eat. None of this means I can’t do those things, it’s just a reality check that my timeline is more abbreviated than I want to admit.

And that really sucks.

In the meantime, I’m going to eat all of the delicious food that I can and get remarkably fat. That’s gonna rule. March is Portland Dining Month, where a lot of local restaurants serve a special menu on the cheap, and this year I’m going to take SUCH advantage. Food is awesome. Eat something delicious on my behalf, darlings, because food is amazing and so are you.

Inappropriate Friends are the Best Friends – Part 7

…Why is it most of these stories are about Jack?

Anyway, we’re chatting about VR rigs, like ya do, and I mention my mom can’t use them because she’s legally blind. He asked how that happened, like, did she stare at the sun or something (because Jack is Like That).

“It’s age related,” I told him. “Hehe it’s literally called Age Related Macular Degeneration.”

“Ugh I hope I don’t get that. I get feebles floating in my eye and that’s bad enough.”

“Yeah. It’s genetic, too, so I’m dodging THAT bullet! Hooray!”

“Though points in your mom’s favor, she’s not likely to see Death coming unless he’s trying to do a sneaky and flank her.”

A Punch in the Gut

First, a quick check in about the research study in San Francisco. That’s still going on, still going well, and now that it has shifted to once a month rather than every two weeks, things are calming down and much easier. My brother Gecko is the kind of advocate a girl dreams of. He’s been amazing throughout all of this.

So, clinic. Well.

It wasn’t an easy one. My breathing is only a little weaker than it was before, so that’s good. My overall limb strength is about the same. My diet is great, my weight is stable, although I am the heaviest I have been in my entire life and I hate it, I’m doing what I should. Overall, each of my many appointments went as per usual except for two.

For my one-on-one with Dr. Goslin, I had to finally admit that over the past few months I have been losing bowel control. Admit to someone besides J who I tell every-fucking-thing to and my mother, who’s had to help me with the um. Fallout. There have been a few major accidents, and many minor ones. It’s exactly as my bladder incontinence happened, I don’t have an urge to go at all until I suddenly do, and that when I stand up to go I’m just… going. It was a fucking humiliating thing to talk about, never mind in such clinical detail and with two other people in the room with us. But those two other people were J and Gecko, people who need to know exactly what’s going on with me. She listened carefully, asked a lot of questions, and then told me that she’s never had another ALS patient completely lose bowel control. Accidents, sure. But you have two sphincters and one of them is involuntary, so there’s no reason I should lose complete control.

So…

So that means I’m either a medical anomaly and an ALS first, at least for her, or I have another severe, separate medical issue happening.

I did not take this news very well. I’d already worked out before Clinic that the next step was going to be to speak to a gastroenterologist, and I did as much research as I dare and realize that it’s there is…really not a lot to be done about losing bowel control. I dared not delve into the humiliating tests that were likely to be performed; this has already given me too many panic attacks these last months. There are artificial sphincters that can be installed, but they only work some of the time and are not considered worth the surgery risk. Or there’s the colostomy route. Punch yet another hole in my abdomen, another medical accessory to be maintained. A very large piece of my dignity destroyed, at any rate.

…ALS sucks, don’t ever get it.

So I came away from that with a referral to a gastroenterologist, and a referral for an MRI of my lumbar spine and pelvis, just in case there is something obvious going on. Maybe the lumbar punctures I’m getting for the medical study screwed something up, though I’m pretty sure it started well before I was in the study. Maybe it exacerbated it, I don’t know. In the meantime, I was told to stop my magnesium supplement, and I’ve started taking Imodium every day. We have a plan of attack.

The last appointment for the day was with my pulmonologist. He looked over my chart notes so far for the day, and then asked me if I had thought about survival measures when the time comes and I’ve progressed too far. Do I want to be on a ventilator, that sort of thing. I told him I thought very long and very hard about these things, and so I have a POLST form (Physician’s Orders for Life Sustaining Treatment – basically an Advance Directive, but with a lot more legal weight).

“Well, if you’re considering a feeding tube,” he told me, “you had better consider that sooner than later.”

I… was not prepared to hear that. I blinked at him.

“It’s your breathing,” he explained. “Ideally we want to do the feeding tube when your breathing is somewhere between 40% and 20%. After that it becomes much too dangerous to put you under anesthesia. Right now you’re at 48%, so we’re looking at somewhere between the next six months and the next two years.”

Which, I knew this surgery was coming. Even back in the early days of diagnosis, when I looked at the roadmap ALS typically leads you down, I knew I would be getting a feeding tube before actually needed it. And I knew it was because my breathing would make the anesthesia too dangerous to wait until there was actual need. I just…

… I just wasn’t expecting it so soon.

I FULLY realize that soon is relative. I’ve had ALS for five and half years now, way longer than I have any right to expect. My progression is very slow, and I am very very very lucky. And I am very very grateful. And I expected this talk, eventually. It was just a really harsh reality check. A metaphorical punch in the gut. This is really happening, it’s really progressing, and the end stages are a lot closer than I’d like to think.

So depending on how the gastroenterologist appointments go, I may have three holes LITERALLY punched in my guts. I joked with my therapist that I’m going to need a little sidecar for my wheelchair for all of the medical gear coming out of me. I’m not really fooling anyone with the catheter bag at this point, I think. If anyone gives me more than a casual glance they can totally tell that’s what’s going on. Add to that a colostomy bag and a feeding tube, and it’s going to be nothing but baggy sweaters for me ever again.

A little bit of my old life chipped away. A new normal to adjust to. New change, new life, less a bit more dignity and control.

For now? On with the thing. This hurts, but it’s hardly the end of me. I spent last week feeling very sorry for myself, and now I will do what comes next. I will follow up with the GI and hopefully learn and control my obnoxious new symptom. I will continue with the study until it is completed or until I can’t. I will adjust to my new life of being completely on government financial support. I will embrace my new normal because it is my life and it is still possible. I’m still here dammit. And whether or not my dignity is intact, I will keep breathing until I can’t. And that’s not for some time yet.

I still have so much to do.

Like, FRS Sure

It’s been a long time since I’ve done a general symptom check-in to let you know where my functionality is at. I also don’t think I’ve ever talked in-depth about what the ALS-FRS scale is, at least a quick peek through the tags comes up with nothing, so I think this is as good an excuse as any to go a little deeper into something that is pretty dang integral to my life now.

In the simplest terms, the ALS-FRS is a way to numerically represent my decline. It stands for ALS Functional Rating Scale, and it’s a series of 12 categories that cover the basic symptoms of ALS. You rate your functionality on a scale of 0 to 4, with 4 being completely unaffected, 0 equals no functionality at all. The FRS very helpfully provides examples of each category’s numbering. At the end, you add up your score and that gives you a numerical score that tells you how badly ALS is impacting your life. By tracking this number over a period of time, you can also determine your progression rate.

The last time I took this test was for the clinical study I’m involved in, about 3 weeks ago. I gave my answers verbally so I don’t know what the tally was, but my last Clinic Day’s score was 29 out of the possible 48.

Let me show you around the ALS-FRS while I tell you about my current state!

1. Speech
Normal speech processes
Detectable speech disturbance
Intelligible with repeating
Speech combined with nonvocal communication
Loss of useful speech

For a lot of people, speech is the first thing they notice going wrong. A little bit of a slur, being slightly mush mouth, nothing too dramatic. That’s called bulbar onset, as opposed to limb onset like I’ve got. Fortunately I haven’t really noticed anything amiss in this department yet so my score here is four.

2. Salivation
Normal
Slight but definite excess of saliva in mouth; may have nighttime drooling
Moderately excessive saliva; may have minimal drooling
Marked excess of saliva with some drooling
Marked drooling; requires constant tissue or handkerchief

Again, this is a pretty common bulbar onset symptom. A friend of mine who had ALS had to keep a handkerchief in her hands at all time so as to blot up the drool. The same mechanism that doesn’t allow you to speak properly means you can’t swallow very well either, so there’s nowhere for your saliva to go. Another common thing this symptom causes is choking on your own spit a lot. Fortunately I don’t do that anymore often than I ever did. So for now, my score is a four.

3. Swallowing
Normal eating habits
Early eating problems-occasional choking
Dietary consistency changes
Needs supplemental tube feeding
NPO (exclusively parenteral or enteral feeding)

Slightly different than choking on your own spit is food going down the wrong pipe. That will eventually start to happen a lot to people with ALS. Eventually you move to a thick liquid diet (thin liquids are too easy to aspirate) and then eventually you can’t swallow at all so you have to make a choice about supplemental tube feeding or starving to death. Fortunately that decision is some distance away for me. My score here is a four.

4. Handwriting
Normal
Slow or sloppy; all words are legible
Not all words are legible
Able to grip pen but unable to write
Unable to grip pen

The key word here is functional. This scale doesn’t measure in terms of strength but rather in terms of what activities your symptoms are preventing you from doing. It doesn’t matter that my hands curl up when they’re at rest, it only matters that I can or cannot hold a pen and sign my name. It’s a very practical scale. More medicine should be based on practicality in my opinion. Unfortunately for me I do not have a perfect four in this category. I have to sign my name by writing from the shoulder rather than from the wrist in order for it to be legible at all. I can very painstakingly write a short simple note, but it’s gotten to the point where not all the words say what I meant when I wrote them. It’s hard to tell what I was going for sometimes. So right now my score here is a two.

5. Cutting food  
gastrostomy
Normal
Somewhat slow and clumsy, but no help needed
Can cut most foods, although clumsy and slow; some help needed
Food must be cut by someone, but can still feed slowly
Needs to be fed

Here the scale diverges. There is a 5A and a 5B. It depends whether or not you have a feeding tube. My hands fail me at this point to where I can’t cut up a steak or serve myself from a common dish. I can stab at food with a fork, or spoon something into my mouth, but if food needs cutting, someone else has to do that for me. I could probably butter my own piece of toast, but butter knives are pretty heavy actually, and so that’s becoming more and more difficult. If the butter is cold, forget it. My score here is a one.

6. Dressing and hygiene
Normal function
Independent and complete self-care with effort or decreased efficiency
Intermittent assistance or substitute methods
Needs attendant for self-care
Total dependence

This category should probably be two, in my opinion. Dressing and hygiene are completely separate, particularly if you are a woman. As far as self dressing is concerned, men would probably score higher in this category than a woman of the same progression, simply because that dude never has to deal with bras. I could pull a shirt over my head and sweatpants on, but dressing more feminine requires so much more effort than that. We won’t even talk about shapewear. Anyway, I digress. Gender and/or biology disparities aside, hygiene is also a completely different ballpark. And yet it is one category. At this point for me, taking a shower by myself is impossible because I cannot operate the mechanism to get the showerhead to work. I have to have my mom come in and activate the shower. Once the water’s on I’m okay, but it’s extremely difficult and exhausting and I don’t feel fully clean at the end of it. I never get that freshly scrubbed feeling anymore. Toileting – and that is such a great word – is going okay in the wiping up and taking care of things department, but it’s becoming very difficult. I have to use a wand that holds toilet paper. I resisted it for a very long time simply because those devices are the punchline of jokes about morbidly obese people. I’m fat by medical directive, but I’m not morbidly obese and I am stupid self-conscious about it, and so I resisted buying a device that actually made my life easier for far too long. Yay society. So while I am able to take care of myself in this department, sometimes some help is greatly appreciated such as when zipping up boots and putting on socks. I usually rate myself as a three here, but if I’m being fully honest I’m a two.

7. Turning in bed
Normal
Somewhat slow and clumsy, but no help needed
Can turn alone or adjust sheets, but with great difficulty
Can initiate, but not turn or adjust sheets alone
Helpless

See? Practicality. Pure and simple. This category represents something you don’t really think about until you start to have problems with it, and then it becomes dire. Turning in bed is no big deal until you spend literally all of your time in bed. I am so, so grateful I have an adjustable bed. My life would be so much harder without it by now. I’m not to the point yet where I’m completely helpless, I can still adjust my own blankets and adjust my body, but sleeping on my side is no longer possible. That’s more to do with breathing than physically turning in bed, and that comes later, but for now I don’t have to struggle so much to sit up in the morning because I push a button and I set up automatically. So for all intents and purposes, my score here is currently three. It’s teetering on two, but we’re not there just yet.

8. Walking
Normal
Early ambulation difficulties
Walks with assistance
Non-ambulatory functional movement only
No purposeful leg movement

This category is where my symptoms began. It is the most noticeable change in me. I can currently focus really hard and move my toes the slightest little bit, but with my heel on the ground I cannot lift my toes. I cannot turn my feet to left and right. I used to be able to wiggle my left little toe independently of the rest of my toes but that stupid party trick is now gone. With weight on them, my feet are now completely useless for balance. Even the weight of a blanket pressing down on my toes is too much, so I have a device on my bed that keeps the covers off of my feet. I described my legs as useless meat stilts, and that’s pretty much what they are. I can prop my body up on them and clumsily move one forward at a time to perpetrate some semblance of walking, so long as I have both hands on some sort of other assistive device. I can kick my legs up while sitting, but I can’t lift them parallel anymore. I can lift my knee just the slightest bit, but once the doctor puts any pressure on them they go right down. I’m currently able to use the walker to get to the bathroom, but any trip longer than that and I become winded and seriously worried that I’m going to fall. I’m technically able to walk still, but for all practical purposes I am in a wheelchair. My score here is a two, but in real life is much closer to a one.

9. Climbing stairs
Normal
Slow
Mild unsteadiness or fatigue
Needs assistance
Cannot do

HAHAHAHAAHHAHAHAHAHAHAHAHAHAHAHAHAAHHAAAAAAaaazero.

10. Dyspnea
None
Occurs when walking
Occurs with one or more of the following: eating, bathing, dressing (ADL)
Occurs at rest, difficulty breathing when either sitting or lying
Significant difficulty, considering using mechanical respiratory support

This is a very fancy word that means shortness of breath, specifically when exerting yourself. What makes you winded. Luckily my breathing is not so terrible yet that I struggle for air just sitting around, but I know that day is coming. Just not yet. I do get winded at the stupidest little things, and it is frustrating. Getting dressed for example. I break out in a sweat and breathe a little harder when I have to get dressed in people clothes. A walker trip to the bathroom leaves me very sweaty and breathless. Taking a shower involves frequent breaks to catch my breath. Talking for long stretches of time can leave me breathless. I claimed three here probably longer than I should have if I was being honest. For now I’m holding steady at a two.

11. Orthopnea
None
Some difficulty sleeping at night due to shortness of breath. Does not routinely use more than two pillows
Needs extra pillow in order to sleep (more than two)
Can only sleep sitting up
Unable to sleep

Another fancy word for shortness of breath, but this one pertains to breathing while lying down. I don’t use more than two pillows, but my bed tilts so that’s cheating. I can no longer sleep lying completely flat, because it’s hard to breathe. Not impossible, but difficult. My score here is a two.

12. Respiratory
insufficiency
None
Intermittent use of BiPAP
Continuous use of BiPAP
Continuous use of BiPAP during the night and day
Invasive mechanical ventilation by intubation or tracheostomy

When I was first assigned a BiPAP machine, I didn’t really need it. I had no breathing problems at all, and just enough sleep apnea to barely register. I was prescribed this machine more because eventually I was going to need it and I should get used to it sooner rather than later. That machine died, so now I’m using an AVAP machine – which is the strongest noninvasive ventilator there is. Not because I need that strength yet, but because I will. I can definitely sleep without it, but it’s beginning to get to a point where I like to have it. My breathing is still above 50%, but only just. My score here is a three. I fear this category the most, because this is what’s going to kill me.

So unless I’ve done the math wrong, my score is still 29. It’s a good thing, when the score stays steady.

So that ALS-FRS scale. It’s not perfect obviously. There are symptoms besides these that come up; my incontinence for example. There’s not a damn thing about that on the scale. There is nothing about muscle cramps or twitching. It only covers the major symptoms that happen to the most people with ALS. It is not a complete picture of living with ALS, but it is a very good numerical representation of how well someone is surviving – not necessarily living – with ALS. It is a standard against which to measure, a way to measure decline, a common language. It is a very useful start.

And hopefully this post was useful to you.

Why

Oh man, so the medical trial ate my life for awhile there – I was going for 3 or 4 days every two weeks and that was kiiiiiiiinda my job and existence for a bit. With all the attending fuckery, of course.

In the meantime, I was officially and finally terminated by Intel. I have applied for SSDI and not received it yet, though I’m not anticipating any troubles there. The agent I’ve been working with has been using the phrase “WHEN you’re approved” rather than IF. ALS is kinda a shoo-in. I’m not 100% confident that there won’t be something to go wrong, this is a government thing AND a medical thing soooooooo the situation is RIPE for angst and bureaucracy to do its thang.

I lost my health insurance through Intel as of the 30th of September. I don’t have Medicare through SSDI yet, so I am in Happy Funtime COBRA Land. I’m paying $750 a month to continue my coverage.

Orrrrrrrrrrr……I will be.

I signed up for it right away. And then I got a call on Tuesday the 1st about some parts I’ve ordered for the SS Opportunity, like longer armrests. They tried to bill my insurance and Providence says I’m not covered. I panic a little but not too much; I only just signed up for it after all and maybe it takes a couple days?

Wednesday, they delivered my $17,000 box of infusion meds. Thursday, the nurse came to my home to access the port. Friday, the wheelchair peeps called because my insurance was STILL not active. I start to panic a bit more. Saturday I had the home health nurse come out to swap my catheter. Monday I got a phone call from the infusion pharmacy because guess what? My insurance is invalid! So I called Intel’s HR in a complete panic and learned:

  1. I am covered by COBRA as of the 1st of October. HOWEVER….
  2. COBRA is a pre-pay benefit. So…
  3. I’m covered but it’s not active until I pay the $750.
  4. I can’t give them a payment over the phone to sort it all out.
  5. In fact I can’t pay them AT ALL until I receive a bill.
  6. I won’t get a bill until the 10th of this month, and…
  7. it will take up to two weeks for the payment to go through, AND
  8. I’ll be billed for two months, October and November.

In the meantime I have two options:

  1. Pay out of pocket and wait maybe months to get reimbursed once the insurance is active (Not with a $17,000 bill I’m not gonna)
  2. Call my medical providers, explain the situation, and ask them to please try rebilling in two to three weeks? But please keep my existing medical appointments anyway?

“I will gladly pay you in 3 weeks for a doctor today.”

I just….seriously. This is what I have. This is how it works. I hate the American (lack of) healthcare system SO MUCH. I should not be running interference between my insurance company and my medical providers. I should not be spending hours on the phone. I should not be worried about the financial aspects of dying, I should be allowed to just be DYING. I should be spending my time in bed watching Carl Sagan explain the cosmos to me while eating gummy sharks and finding cute Halloween pictures on the internet while my cats sleep at my feet, surrounded by a dozen blankets.

Dying should not require a fucking secretary.

Drowning

Still with you. Just…busy.

There’s a clinical trial that I can’t talk much about but it’s in San Francisco and the logistics of traveling in a wheelchair (and at last minute) got me like AAAAAAAA

The house hunt is on hold but I didn’t know it was on hold until we tried putting in an offer on a place and it’s got me going EEEEEEEEEEEEEEEEEE

I’m filing for SSDI at last and that will get its own post but for now I’m all BUUUUUUUUUUHHHHHHHHHH

I’m reaching the end of my short term disability and my financial situation is drastically changing so I’m going AIIIIIIARGH

The Walk to Defeat ALS is next month but because of all the above I’ve done literally nothing to prepare or promote it and it’s like UUUUUUUUUUUGH

Sadbrain has decided our method of dealing with all the above is: Don’t! and that’s just SFDSSDFGHJHGFDSA

So uh, I’m kinda drowning, here. How are you?

S-P/A Day

Unless you’re new to this blog, you know I’m an optimist. If you are new to this blog, welcome! Pull up a chair, have a look around. I hope you find something useful here. And oh, by the way, I’m an optimist. I can’t even tell you why that’s so, but I’ve always been. Even when things are absolutely shit, I still believe to the core of me in some way, somehow, things are going to be okay. Even if it’s a new definition of okay. I don’t think it really serves in purpose being pessimistic, because when you’re a pessimist and things go wrong, not only are things bad for you, but you’ve been miserable for a long time up to that point – because you’ve just been waiting for it turned to shit. “I told you so” is a cold comfort. Seeing it coming doesn’t necessarily make anything better. It makes you right, I guess, and if that makes you happy good on you. But the anticipation of misery just makes the lead-up miserable also. Besides, it really will be okay. I know it.

There are those of you out there who call yourself a realist. You’re not, really. You’re just a pessimist without imagination. If you are going to expect things to be bad, at least have some imagination on how you get there.

So, yeah, optimist. Even though the end of my path is set and dark, there’s still a lot of light here. More than I ever would’ve thought possible. I’ve waxed poetic elsewhere and I will again, and again, and again. Because it’s accurate. There is so much good in my life, more than ever thought I deserved, or possible, even. It’s here. I see it. It’sbright and glorious and why I continue to wake up every day.

But.

Sometimes.

Some days.

Some days it’s really fucking hard to see that light. Occasionally the darkness and the unfairness and the all-around bullshit and fuckery that is ALS creeps in the edges and obscures everything until it’s really hard to see anything good. Everything looks like a shit sammich and the world feels awful and hard. And when that happens, I take a spa day. Or rather, a S-P/A Day. A day to sit and think and allow myself to be sad. To dwell in self-pity and anger.

Because I mean, it’s really fucked up. I’m not such an optimist I can’t see how fucked my situation is. It sucks that this disease exists at all. It sucks that I have it. It sucks that I got it so young. I wasn’t even 40 years old yet. You’re not supposed to get this disease until your mid 60s. It sucks that it’s taking my hands, and my joys in life are all to do with using those hands to create. Create delicious things, create drawings, create these words that you’re reading right now. I’ll never make another wedding cake, or draw a pretty girl in a corset, or teach myself to knit, or pick back up calligraphy. No evenings whiled away on video games. No more dancing. I loved to dance. Eventually I won’t even have a voice with which to dictate these words. And alllllllll of that …sucks ass.

It sucks that I was diagnosed less than a year after I bought my house. My life was falling into place. I had a job I really loved, I was going back to school to further that career that I loved. I had signed up for driving lessons to easily get myself from my new house to the job that I loved. I had successfully dropped weight I didn’t want and was fitting in my cute clothes again. My plaid miniskirt was a wardrobe option again. I was wearing medium T-shirts and looking good in them. I was cooking healthy food for myself. I had my very own living room to dance in. I was dancing. I was mayyyyyyyyyyyyybe open for a new romantic possibility; my divorce was amicable and well in the rearview and there had been a few crushes. I was decorating my new home to be exactly the living space I had always wanted. I had a huge, gorgeous backyard just begging for a garden, and I had such plans for that garden.

It’s not. Fucking. Fair.

So yeah. Usually I can take it on the chin and keep smiling and find the good. Because there really is a lot of good. And it almost always outweighs the bad. But some days it doesn’t. It can’t. And on those days I sleep a lot, I take Ativan, I cry, and just generally wallow. I allow myself self-pity. I allow myself to get angry. And when the anger comes, I let it fill me and I feel it to the core and I rage. And I hate. And I keep crying. And then I sleep some more.

And then when it is over, when I’ve given it a whole day, I can put it aside again. I allow it one day of my life, and then the rage and sadness get shunted aside in favor of the day-to-day living that must happen. It gets overshadowed by the joy that still here. My anger serves its purpose and then it’s done. Until the next time. I try not to let mourning for who I could have been – and who I was becoming – overrule the happiness I could still grasp if only I allow myself to look for it. It’s not all doom and gloom, but sometimes it has to be. Just for a little while. So it can fill me, and pass through me, and keep me in touch with my own grief.

Every now and again it’s important to give those emotions their own time, so that I can put them away and get on with the day-to-day living that’s necessary, and to fully appreciate all of the fucking amazing things that are still very much a part of my life.

Aftermaths

Well hello. I survived the surgery, it went really well and I am recovering nicely.

…Except for the part where the nurse used chlorhexidine on my hand when starting my IV. Despite the bright red wristband stating I am allergic to chlorhexidine and latex. So that was a weeks worth of itchy fun.

…Except for the part where the IV came out of my hand during surgery so they had to start a new one on my other hand.

…Except for the super nasty UTI that happened and went undiagnosed for a couple of days because I figured it was just irritation from the catheter during surgery. That sucked, really really bad. PROTIP: urine should not be dark and cloudy with red bits floating in it. Get that checked out.

…Except for the doctors really, really not fucking around when they say OxyContin causes constipation. Do not ignore this advice when they tell you to get lots of fiber.

…Except for my hands being unable to fasten and unfasten the elastic bands that keep the bag strapped to my leg. So the bag just kind of kicks it with me in bed.

…Except for the night before last when somehow the bag became unscrewed? And I secondhand peed the bed?

…Except for my body apparently deciding overnight that since I don’t HAVE to use the toilet to pee anymore, getting up off of the toilet is not a thing we get to do. Not easily. Helluva thing to discover at 1 AM due to getting stuck sitting on the toilet for 45 minutes until I finally managed.

All sarcasm and bitterness aside, this thing is fucking amazing. I wore proper underwear for the first time in almost a year. I did not have to put on a pee pad for the first time since October 2017. It’s taking some getting used to, of course – being able to feel balloon inside my bladder has taken some serious adjusting. I also wasn’t really expecting it to be literally a slit cut in my belly with a tube shoved in. There is no connector, no futzy plastic anything, literally a slit with a rubber tube sticking out of it. Thank your lucky stars I’m not about to show that to you. I now have the most hardcore body piercing EVER.

There’s a couple of things I have to do to fully adjust, including hitting up my seamstress friends to help me build some kind of a cover for this thing – so that it doesn’t accidentally become unscrewed again, I don’t get super sweaty having this plastic thing that doesn’t breathe sitting against my skin, and I don’t have to look at a literal bag of urine sitting next to me all the time. I want to get some fat quarters of spooky fabrics and make cute little bags to stick the bag in and disguise it somewhat. Anything to make it look even a little less than exactly what it is.

For now though, I am obscenely grateful for having only to get up once or twice to empty this thing a day, which only involves me getting in the wheelchair and rolling up to the toilet to dump it. I don’t have to transfer all if I really didn’t want to, I have a receptacle to empty the bag into while still sitting in bed. But so far it hasn’t been a problem. I’m not sitting in my own pee right now. I can’t tell you how amazing it feels to be DRY. How awesome it is to be able to wear my cute underwear again. It was worth it. Absolutely no question about it. I’m so glad I did this.

And I’m sure you’re super glad too, because this is hopefully the end of my urine stories. I’m not even gonna make the title a pee pun. You’re welcome.

Clinic Day

Okay kids, it’s that time again. Let’s have the update on the status of things.

My first appointment of the day was with the social worker from the ALS Association. I was introduced to a new employee, and I had been asked if this new employee could sit in with me for the whole day to get an idea of what clinic is about. I’ve had a couple people sitting with my sessions; I think I’m a good candidate for kind of easing someone into the job. I’m not so far down the road that I’m a bitter, depressing train wreck, I’ve got a pretty good attitude about things, and – as evidenced by this blog – I am not opposed to sharing. He was a really nice guy and understood a lot of the gaming and geek references that J, Gecko, and I shot back and forth with each other throughout the appointments as usual. There was nothing new to report on my part for this segment, the house search is still ongoing, the appeals for help are coming along, I’m doing okay here.

Second appointment was with Kelly the dietitian. Because she is also my friend, she had brought me birthday presents of two graphic novels from a series I adore called Lackadaisy. Happy birthday to meeeee! The official part of my appointment went smooth as usual, I received my typical good-natured lecture about drinking water instead of soda, otherwise everything checked out. I remarked to Tony, the observer, that presents aren’t usually part of appointments, but I would never be upset if they were. ALS shuld come with fabulous prizes. Or at least an administrative assistant. Kelly is incredibly thoughtful and it’s a pleasure to be her friend – not just for the comic books.

Third appointment was nursing. I had a few things to talk about here, things that would be addressed by the corresponding specialists as the appointments happened that day, but it’s always good to give the nurse a heads up so she knows what to follow up on.

Fourth was respiratory. My absolute least favorite appointment of all time. We started with the standard cough check, which is still great. Second thing we always do is check my inhale capacity, a test where I put a mask over my nose and mouth and inhale as sharply and strongly as I can. I’ve always done really well on this test. The respiratory specialist agreed with me and told me my sucking was great, upon which J, Gecko, and I did our level best to not lose our shit laughing. We are 12. The last test is the worst one, where I lean into a mask again with my nose plugged and after a couple normal breaths I forcibly exhale as much as I can and keep exhaling and keep exhaling until I feel like I’m breathing myself inside out, and then sharp inhale. I do this three times. During this appointment, the test machine said “great effort!” on all three tries, which it doesn’t always do, so I felt really encouraged. Until she told me my breathing had actually still gone down a bit. Not as dramatically as before, though. Still not dangerous levels yet, but still very much declining. I tried not to get discouraged and mostly succeeded.

Appointment number five was neurology with Dr. Olney, the new partner for Dr. Goslin. I mentioned to him the biting my tongue in my sleep thing, and how I’ve been using a night guard to get around it, and he asked me a very obvious question. “When did you start your new medication, again?” I replied it was… Right around when I started biting my tongue. Derp. It had not occurred to me at all that it might’ve been the side effect of the new medication, but when he asked that question it seemed very obvious that it was the problem. It’s still not a dealbreaker, just like the weird sleep pattern is not dealbreaker. That is the price I pay for not spiraling into a black mood at 4 AM every day, and it is worth the price of admission. I also talked to him about bladder control, or in my case the absolute lack of, as a follow-up to my previous conversation with Dr. Goslin. She had told me what my options were, and I went home and researched the mall because that’s what I do, and I had pretty much made up my mind how I would like to address this. I’m getting really sick of wearing adult diapers, they’re expensive, and they don’t always work properly and I wind up wetting the dang bed anyway, and I’m getting preeeeeeetty tired of sitting in my own pee. I have two options for a catheter, one is the traditional Foley catheter which is just a tube snaking into your urethra and a bag attached to the other end. It’s functional, but prone to infection, and for women it’s not something that is fun to have to sit on at all times. The other option, the one I’m now pursuing, is called a superpubic catheter. It’s where they punch a hole into your abdominal wall, connecting a tube through there, which drains into a bag, same as the other. It’s reversible, it’s not a horrible procedure to have to endure, and it would eliminate the need for a very uncomfortable tube in a very sensitive place. We talked about my previous experience with the urologist, how I stopped going to her because it was obvious she had no idea what ALS was. (Here’s a clue: we are not going to fix my problem by doing Kegel exercises.) He gave me the names of two urologists that have worked with their patients before and were trusted. I’ll keep you posted on how this goes.

Sixth appointment was pulmonology. The last clinic had me meeting with the pulmonologist also,and so this is a new part of the Clinic routine. My standard physician was on vacation in New Zealand (jealous!) so I had seen a practice partner. Who I actually really liked, though my regular doctor isn’t a bad guy at all; his partner has a better sense of humor is all. He had grabbed my breathing machine records from the net, because my AVAPS automatically uploads my sleep reports to the cloud and that’s not even creepy at all what are you talking about. He was overall pretty happy with my results, but still chided me about needing to use my machine for more than four hours a night to get the best results, and more than 60% of the time. I was properly chastised and promised to be better about using the machine. Which I stayed true to by the way. So far. J came over and helped me this last weekend with cleaning and organizing, and now my AVAPS doesn’t live on the arm of my wheelchair or the corner of my bed anymore, it has a proper home now, on a shelf just out of reach when I’m lying in bed. Since I have to wake up properly and sit up to turn the machine off, I’m not pulling the mask off after only four hours anymore. I also was encouraged to keep up with breath stacking. Because of course I was.

Seventh and final appointment was with PT/OT. I didn’t get to see Deb unfortunately, but I like all the specialists. We breezed through the appointments since I didn’t really have anything to report. We tried the grip meter on my left hand just for funsies, and it registered nothing at all. “…You got it to move,” she told me encouragingly. But not enough to register as a grip. Meh. I promised to hit them up when I start needing help with other things, like toileting and whatnot. I’m still doing pretty okay on my own with those things, for now. But I will be very happy when I don’t have to get up to pee anymore. I can still do the necessary things, but only having to do them once a day instead of four or five will be a very welcome change.

So that’s what we did. And that’s how it went. Steady as she goes, with nothing new to report except a 6% decrease in breathing capacity. They didn’t even have me bother talking to speech therapy this time; I never have anything to report. Oh, there is one weird thing that happened. We did the FERS scale and my self-evaluation actually had me at 32, higher than the 26 I was last time. When I got the letter afterwards, they hadofficially put me at a 30. Which is still higher than it was last time? I have another appointment with Dr. Goslin in a few weeks and I will ask her about that then.

And now you are up-to-date.

Five

Five years ago today, my life was split in two. My life B.C. (Before Crisis) and A.D. (After Diagnosis)

Five years ago I was told I was going to die. Pretty horribly. My prognosis wasn’t great. ALS typically kills you in 3 to 5 years. I had a feeling I had a few years – my progression was pretty slow. Six months after exhibiting any symptoms, I was still on my feet with no assistance, no degradation in my hands, breathing was excellent, swallowing and speech still perfect.

Only ten percent of people with ALS live longer than 10 years. I optimistically vowed to be among them. (….as if I have any control.)

It’s five years later, and I’m still doing pretty well, all things considered. I may make ten years yet, though I don’t think so, honestly. I’m definitely showing signs of wear. I can no longer stand, let alone walk, without assistance. When I try REAL hard, I can still sliiiiightly move the big toe of my left foot sometimes. My hands are near useless garbage meat noodles,
my posture like a T.Rex . I can curl my fingers in but not flex them out, the only digits I still have some control over is my thumbs. I type with the knuckles of my index fingers. Bladder control is completely a thing of the past. My breathing is getting shitty, but it’s nothing I need assistance with, yet.

This last month, I’ve started to exhibit bulbar symptoms. Mannnnnnnnnnnnnn it’s hard to admit that. I’ve been biting my tongue in my sleep, but luckily I already had a night guard so it’s not a problem. No choking or drooling or slurring yet, but my tongue sometimes gets a little tired if I’m eating something really chewy or hard.

It’s not the end of me, but I’m starting to think I can see it from here.

Not sure I’ve got another five years, but I’m going to try like hell. I’m pretty confident I won’t make it to fifty years old. (..This disease sucks, man, don’t get it.)

BUT.

BUT!!!

I have outlived the average. Some folks don’t even get one year. I’ve gotten FIVE. So far. It’s been such a rare privilege to make friends with my own death, to know what’s coming and have a chance to plan for it. My employer had amazing benefits and was completely understanding. My friends, my circle, they have my back in ways I never would have dared to expect. I was already death positive and prepared to think about my own demise in very real ways. I am doing SO WELL, all things considered. I was positioned to handle this with some grace and lots of support.

This sucks, but it could have been so. much. worse.

Tonight, instead of mourning my life that won’t be, I can celebrate the life I’ve had so far. Old school – I’m throwing a freaking pizza party to mark beating the typical prognosis. It’s going to be great to be with my planets, to eat and have some laughs and be grateful for five years of life so far. A very full life containing an amazing cast, fantastic sets, a very interesting plot. I will have hopefully been a source of light for someone, a sliver of kindness, maybe a laugh or two. I have cool tattoos and cute cats and enough stickers to have my own boutique. I am eating delicious things with the best people.

When people ask how I’m doing, I tell them “so far, so good”.

And I really, truly mean it. My life, she don’t suck, you know?

Here’s to another five years. Let’s see where this road leads.

Body, Mind, Self

So as usual, it’s 3 AM and instead of sleep I am staring at the ceiling. It’s been kind of a rough day. I took a shower, which anymore is a Herculean task and wears me out pretty well. J came over and shaved my head for me, and the shower afterwards was both marvelous relief from all the little itchy bits and frustration at my newfound inability to scrub my skin properly. I am out of breath, tired, and not completely clean when I get out. I feel a little defeated, if I’m being honest. I’m still doing infusions, and so there is two weeks out of the month when I cannot take a shower. I scrub the best as I can with washcloth and baby wipes, and after the last infusion of the cycle is done I take a very long warm soak in the shower. It feels like a second skin sloughs off and it feels wonderful. Anymore though, my attempts to scrub are coming up short.

After J goes home, I’m sitting in bed and screwing around on the Internet as always and someone posts a meme on Facebook gets under my skin. It wasn’t directed at me personally, but it was something I am six shades of defensive about and it bothers me a lot. I left a sarcastic comment reply, closed my laptop, and declare that’s enough Internet for one day. As usual it takes me a very long time to fall asleep. As usual it’s because of unwanted conversation.

I feel a little queasy.

hey uh sorry about that i think it’s the new meds

Oh, hey, Body. How’s it going.

not so great today. i couldn’t get hands to work proper, so now i’m not actually as clean as i want to be, but i really don’t think there’s anything i can do about that? i mean i’m trying really hard?

Yeah, that sucks. It’s almost time to admit defeat,huh?

HEY LOSERS WHAT’S HAPPENING

What’s up, Brain. Kind of expected you earlier to be honest. Body and I were just talking and it’s probably time to start thinking about getting some help for real.

YEAH THAT SUCKS AND I DON’T WANT TO THINK ABOUT THAT.

Well, we’re going to have to. Eventually. And you know this.

WELL LIZ IS COMING OVER TUESDAY TO START TALKING ABOUT SHARE THE CARE NONSENSE. LET’S DEAL WITH THAT THEN.

We kind of need to think about that beforehand, though. And Liz can’t really help us come to terms with needing bathing assistance. She didn’t sign on for that. That’s something we have to do.

HEY REMEMBER THE SONGS WE USED TO SING IN SUNDAY SCHOOL?

… are you serious right now

For real though, Brain. I need you to focus for a second.

FAAAAAAAAAAAAATHEEEEEERRRRRRRR ABRAHAM! HAD MANY SONS!

Are you fucking kidding me right now. Brain.

MANY SONS HAD FAAAAAAAAAAAATHER ABRAHAM!

Dude. Get your shit together. This is serious. Body is not really able to help us as well as she used to. I’m not asking you to pick up the slack or anything, we all know that you can’t. You know Body is going to fail us completely, and you and I need a plan for when that happens.

i don’t want to let you down

I AM ONE OF THEM

I know that. It’s not your fault.

whose fault is it then

I really wish I knew. I’d kick their teeth in.

well we couldn’t really. not anymore

AND SO ARE YOU

Yeah I know that too . But we have an entire posse full of people willing to do it for us.

we are really lucky aren’t we. all things considered

HEY HEY HEY

YES, Brain, what.

REMEMBER IN SUNDAY SCHOOL? THE SONG WITH THE STOP AND GO SIGNS? AND HOW IT WOULD COMPLETELY MAKE OUR WEEK IF WE WERE THE ONES PICKED ON TO HOLD UP THE SIGNS DURING THE SONGS? WITH THE LYRICS ON THE BACK? “STOP!! AND LET ME TELL YOU”? REMEMBER HOW PROUD WE WERE WHEN SISTER MENG CALLED ON US TO LEAD THE SONGS?

….Yeah. What about it?

I MISS THAT. LIFE WAS SO MUCH SIMPLER.

i could do anything

Yeah. I miss that too.

DEEP! AND WIDE! DEEP! AND WIDE!

Yep. So much simpler. Go to sleep, asshole.

Needing the Dark

Today started early. I had a 9:45 AM appointment in Portland, and if you don’t think that’s early clearly you are not familiar with my 3 AM standard bedtime these days. I tried going to sleep at a sane hour, but my overly active brain had other ideas. In fact, my 4 AM conversation with body and brain almost resulted in its own blog post; I just knew that if I got up to write it I wouldn’t get any sleep at all. And I need sleep. I like sleep. Even before all this nonsense, it was my favorite hobby. ALS just gave my lazy ass an air of legitimacy.

I have recently made a crucial step and actually have started asking my friends for help. I know, I know! I was just as impressed as you are with myself. It was not at all an easy thing, as you can well imagine – especially if you know me. But I have doctors appointments to get to, and J is amazing but cannot be my sole source of transportation – particularly when I own the van and it doesn’t actually need to be him driving it. So I had put out an all call on my friends list for someone to come drive, and my friend Matt stepped up for today. Matt is also the storyteller for my Wednesday games, and as mentioned before is an all around good guy and excellent person to have in your corner. As we were driving to my appointment this morning, talking about video games and commercials and marketing and the abyssmal real estate market, the van’s brake warning light came on. It had done before, and usually came on and went off seemingly randomly, and we had previously resolved the problem by simply topping up the brake fluid. It it started doing this again recently, and despite repeated mental notes to ourselves, we had just failed to get more fluid in it yet. I wasn’t terribly worried. It didn’t seem like that big a deal.

…You can probably see where this post entry is going, yes?

By the time we were done with my appointments, and filled the gas tank, and got home, I’d forgotten all about it. That afternoon was my biweekly therapy appointment, which J was available to drive me for. As we were driving the 20 some odd miles to my therapist, the warning light came on and stayed on. And then, halfway there as we stopped on the freeway for a traffic snarl, there was a God awful smell of burning rubber and when we looked behind us, a bit of smoke. We weren’t entirely sure it was my van? But the presence of the smell and the light made us resolved to put more fluid in the van as soon as humanly possible. For some stupid reason we had taken the brake fluid out of my van and brought it into my apartment, so simply pulling over and adding more fluid wasn’t an option at the moment. Traffic started moving again, then came to a crawl again, and as J put the brakes on, more smoke. Something was obviously not right in a big way.

Fun fact! I have a debilitating phobia of breaking down on the freeway. When I was really little, our car broke down at night on the freeway and I remember vividly my father moving around outside the car trying to figure out what was wrong, while traffic screamed by us in the dark and I just knew in my little kid brain that any second now some car was going to hit him and splatter him up all across our vcar. I shook in terror waiting for my father to die. He did not, of course, but ever since then, any time there is a slight possibility of something going wrong with the vehicle I am in, it creates an instant panic attack. That’s the problem with phobias. There’sno reasoning with them.

Jay was talking, making plans of dropping me off for my appointment and then going to some auto parts place to get more brake fluid and I would make an appointment the next day to take the van in for proper repairs. I didn’t really hear him over the blood pounding in my ears, and my brain was already busy trying to figure out what to do when I vomited any second now. And then we got off the freeway, and I felt safer for a split second until Jay told me that the brakes weren’t responding properly. I just needed to get the van safely somewhere, and then…

… And then, what exactly?

My van is not exactly easily interchangeable with another vehicle. It is a proper medical device. Ever since I got the fucking thing I have been paranoid about getting into an accident because it is not going to be simple and easy to replace it. And if something should happen while I am away from home, I am completely screwed. Stranded. If I were in a manual wheelchair I can get into normal car, but the SS Opportunity weighs 400 pounds without me in it and is a God damn behemoth in her own right. I can’t just get another vehicle. I can’t just call a taxi for a ride home, anymore.

That uneasy feeling turned into outright fear when we parked in the lot of my therapist and the smoke just kept coming. I couldn’t see anything on fire outright, but something was smoking in the rear passenger wheel well and I literally did not know what to do about it. I texted my little brother – because let’s face it – that’s what I always do when I have a car problem because what the fuck even are cars they are magical beasts whose language I do not speak. Not only does my little brother speak cars, he is a professional tow truck driver so even in the worst situation he can bail me out. And has, in fact – when Jay got sideswiped by a probable drunk driver on Christmas in 2017 and the driver took off, it was Justin who went out to get him and help him figure out the next steps. When my brake error light initially came on, it was Justin who told me what to do about it. So when he didn’t immediately respond, and some minutes passed and smoke was still rising from somewhere in my van’s guts, and I wasn’t sure what we would do if we started seeing flames, I called him. He had been taking a nap and listened very patiently while his sister panicked at him over the phone about cars and smoke and I don’t know what to do. He told me to hang tight and he was on his way because he is my hero.

He was some minutes away, and so I went ahead and went inside and had my session with my therapist which was now all about my current crisis. J stayed outside to wait for Justin, and would come interrupt the session when my little brother got there. I wasn’t sure what I was going to do. I wasn’t sure what I even could do. Even if he could tow it somewhere, what the fuck was I going to do in my wheelchair and 20 miles from home? Again. You can’t exactly call a taxi.

After my 45 minute session, we went outside to find my little brother arrived in his giant tow truck, lights flashing, working on my van. Because again, hero. J came over and explained what had gone down so far, which is that Justin had pried the tire off the side of my van and had a look inside and formulated some theories. Apparently the brake line was leaking somewhere, as the inside of the tire was coated with fluid, and the passenger side rear brake had had to do all the work by itself and so had heated up red-hot and started smoking and had finally in the 34° weather cooled down to an oxidized white. He was going to tow the van to Les Schwab, and drop off the keys for them to take a look at in the morning, as they were closed by now. He offered to load me up in the van and transport me in it as he transported the van, but that was of course in his own words “illegal as fuck”. And you know, dangerous.

So we had a plan for the van, but I was still effectively stranded in Lake Oswego. My local public transportation service Tri-Met has a wheelchair transport service, but it’s the sort of thing where you have to get a special ID to qualify for it, and you schedule your pickups in advance and allow for a two hour window. The Lyft app on my phone has a wheelchair accessibility feature I had discovered some time ago, but I had literally no idea how that even worked. It was apparently time to find out. I requested a wheelchair lift, and the app cheerfully told me my ride would arrive in 45 minutes. After a moment it updated to 15 minutes. My ride was going to be courtesy of a local ambulance company, please look out for a white medical transport vehicle, license plate blah blahb blah. And just over 15 minutes later, fuck me if a wheelchair transport van didn’t pull up. It had totally worked.

We finalize things with my little brother to drop off my van, and for me to expect a call from the mechanic in the morning with an estimate before any work would be done. The wheelchair transport vehicle was a fucking sweet ride, the driver was completely awesome, and I found out that wheelchair accessible Lyft requests get priority even over his company’s scheduled patients because they are fully aware anyone desperate enough to need a wheelchair ride without a plan beforehand is obviously going through hella circumstances. And so I got a ride quickly, and my ride ended up costing me 10. Fucking. Dollars.

TEN.

Not only that, but my driver was an hourly medical transport driver and so I didn’t even have to tip him. I asked if I could, and he refused.

SOOOOOOOOO in review, my peesashit van broke down today, after standard business hours, in a very dramatic way. And yet, I have an amazing brother who was able to rescue the van and provide me with the next steps, and then I was able to get safely home for a very little amount of money. And I learned that Lyft access is absolutely a viable transport option now. I am home safe and warm with useful information and a solid plan. I have another appointment tomorrow which I’m going to have to cancel, and when I contacted my friend who had offered to drive me for that appointment and told her I needed to cancel and why, she told me her brother is an actual mechanic and as is actually not very far for me. So even after I get the brakes repaired, I have a plan to contact him and get my van checked over thoroughly to make sure I am not going to have any more nasty surprises coming up. Tonight things completely went to shit, and then the universe conspired perfectly to make things as best and as smoothly as possible. Everything could have been so much worse. I could have been completely stranded in Lake Oswego waiting hours and hours in near freezing temperature for a wheelchair transport taxi service to find time to come get me. I have a AAA account so I would have gotten the car towed regardless, but I literally would not have known where to take it. And we could have been waiting for hours for them to have the time to show up also. Instead my brother was there in minutes. With a plan. And a free tow.

Repeating in my head tonight is my favorite quote from painter Bob Ross, who explained light and shadow theory in painting with a profound slice of life advice.

You need the dark, in order to show the light.

My life is as bright as the fucking sun, and it is only these moments of absolute panic and misery that prove it to me. I am fortunate beyond compare. Even when things are chaos around me, the universe conspires to take care of me in a perfect way because of the people I am fortunate enough to be surrounded by. In my most dire circumstances, I am never alone and never without hope.

I see the light, because of the dark.

Clinic Day 1-14-19

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.