Clinical Anxiety

Clinic was Monday! Let’s break down how it went, shall we?

PT/OT: My hands now no longer register ANYTHING on the strength test. Fuck. My arms are still plenty strong, though. My biceps are a force to be reckoned with from essentially doing push-ups on my walker every day. I have an appointment to follow-up with Deb the Awesome to reimagine my spider hand braces, since my wrists droop badly enough now they’re not helping much. It doesn’t do a lot of good to keep my fingers propped up if my hands as a whole are curling under. My finger joints are doing great though, still a lot of flexibility in them so I’m not going to be clawhands any time soon. Yay!

Dietician: (Hi, Kelly!) My weight remains stable, so I’m to keep doing what I am doing. I need to keep mindful of feeding myself while I’m at home, now, since I don’t have the routine of work to set that schedule for me. My mom doesn’t know to bring me food unless I ask her because she’s old as hell and eats like, a tic-tac a day and calls it a meal. (Hi, Mom, love you!)

Nurse: I forgot to ask her what my chair weighs. Dangit. It’s written down somewhere in my chart and I’m curious what that thing weighs without me in it. Combined, we are 627 pounds of geddafuggoutmaway. She arranged my appointment with Deb, and I didn’t otherwise have much for her. I rarely do. That’s a good thing.

Social Worker: Have I waxed poetic lately about how amazing the ALS Association is? Because damn. Single-handedly saving my sanity more than once, and saving my ass multiple times. We arranged for them to pick up equipment that I’ve borrowed (FOR FREE) that I no longer need because my disease has progressed beyond their use. We then spoke about some other situations that are stressing me out, like the lack of social services for my elderly disabled mother, and she promised to dig up what resources she could for my mom in our area. She sent me an email not even a day later with a bunch of places to check out. THAT is how amazing ALSA is. My mom’s not even on their roster, but because helping her would help ME, they were totally on it. I LOVE THE ALS ASSOCIATION.

Neurologist: Usually I’d be seeing Dr. Goslin, but today I met with her new partner. I’d seen him talk at the ALS Research Symposium, and I’d been given his bio before when I was asked to write something up for him explaining why the ALS Multidisciplinary Clinic was such an awesome thing. It was nice to meet him, and the dude has one of those old-school doctor bags that J wanted to steal. Plus for geek. It was a general get-to-know-you kinda appointment.

Speech: These appointments always go fast because I’ve got no symptoms at all yet. Puff up cheeks, move your tongue, eat this dry-ass graham cracker so I can watch you swallow. NBD, nothing to report.

Respiratory: Yeeeeeah this is always my absolute least favorite, not least of all is because it’s actually HARD. I’ve actually been noticing decline here, and since this is the part of ALS that actually IS going to kill me, I don’t like having a concrete measurement of how shitty my disease is. And yet. I want that measurement, so that I know, so that I can plan, and manage expectations. I came to this appointment knowing my breathing has gotten a bit worse lately; it’s taking a bit longer to recover when I exert myself, and there’s been a few times I wake up in the night because my breath is a little short. I also had to report that my CPAP machine (which I am now supposed to use every night) is busted, doesn’t power on at ALL. We are going to get me a new machine, called an AVAPS and I have no idea what the difference is because I keep forgetting to look it up.

Hang on.

“Noninvasive mechanical ventilation with average volume assured pressure support”

That tells me nothing. 2 secs.

…Oh. It’s…basically a non-invasive respirator. So it’s hardcore. OK then. That’s…intimidating. But I had the choice between getting my CPAP replaced or getting this new hotness, and since I still have Cadillac Intel Insurance for another year, I really want to get the expensive stuff now.

With that out of the way, we did all the usual tests. First they stick a rigid plastic thing in my mouth and I exhale as hard as I can to make these little indicators move; it measures cough strength. Cough strength is still normal; it was down ten points from last visit but she wasn’t worried about that at all. The next test involves a soft plastic mask over my nose and mouth and inhaling sharply; I always ace that one by going beyond what it measures; I guess I’m really good at..sucking…? Monday was no exception. The last test is the worst. Both in what it portends, and the work it takes to perform. My dudes, it is HARD. It blew goats even when my lungs were as strong as ten oxen. It involves inhaling deeply, plugging your nose, and then blowing out as hard as you can, for as long as you can, while getting encouragement shouted at you to GO GO GO MORE MORE MORE MORE and then when you can’t possibly exhale anything else and you feel like you’re going to pass out, another sharp, fast inhale.

Do that three times.

It actually makes J a little uncomfortable to watch, because it’s so obviously hard. It’s intense, it feels like hell, and at the end you have a number that represents your average lung capacity. When I started going to clinic, my scores were over a hundred percent – a very strong set of lungs. Over the last year, I’ve watched that number go down. She wasn’t concerned, really, even 80% was still really good! and she had no recommendations for me except to continue with the breath stacking exercises, which is where you inhale as much as you can and then use a balloon and tube to squuuuueeeeeeeeeeeeeze more air in. and hold. and release. And when you’re no longer light-headed, do it again. And again. I often describe it as reverse drowning, because that’s what it feels like. I do that, but not as often as I should. Six months ago at Clinic I hit 70% and she was a little less cavalier about me not doing them every day. 3 months ago on Clinic day, the machine was busted so I was spared. She wasn’t worried about it though, as my other tests were about the same as last time and she expected the same for this test, too.

I knew it wasn’t going to be the same. I feel a difference. When I eat too much food, I can feel that it’s harder to breathe – not that I’m short of breath, exactly, but I feel that when my lungs don’t have proper room to expand, there’s less strength in my diaphragm to bully the rest of my guts out of the way, maybe. It’s not harder to breathe, exactly, but I notice that I am breathing. And I was keenly aware that the breathing test this time was the hardest it’s ever been. I could feel veins on my forehead. She told me the result.

60%.

I’ve gone down 10% in six months.

I am now to do breath stacking twice a day, and sleep with the AVAPS every night, once it arrives. Next Clinic maybe we’ll do the respiratory early; having it be the very last thing in the day might have fudged my numbers a bit since I’d be tired. But somehow, I didn’t think that will matter. I didn’t take it well at all, and was in a shitty mood the rest of the night, and spent pretty much all day Tuesday crying or sleeping. I feel better now, hence why I have it in me to post tonight, but it kiiiiinda cemented something I’ve been thinking the last few months, something that I haven’t said out loud or posted or anything because I don’t want panic, either from myself or from any of you.

I am pretty goddamned sure I don’t have another 4 years.

I mean, it would be nice? But I’m not going to live to 50. I know that. I’ve been really fucking lucky to make it 4 years, and still be able to be on my feet awhile and wipe my own ass and everything. Some people with ALS don’t make it through ONE, and I’ve already had four, officially diagnosed, and probably closer to six since symptoms first appeared. I’m so, so fucking lucky. I get to see my death coming and plan for it. It was just rude as fuck to see that imaginary timeline become somewhat ..truncated, from what I was telling myself. But now, the part of ALS that will kill me has officially begun to kill me and I don’t have as much time as I thought.

You know what though?

That’s okay.

It really is. This is how ALS goes. This is normal. It’s okay. I’m alright.

Tonight, I am sanguine. There will be more freaking out; count on it. (See you at 3am, stupid brain) At this exact moment though? I have a clarity most people will never, ever experience. I see a world in 5 years without me in it, and it’s a good world and those I love are doing fine, in that long-term place. There’s a delicious release that comes with knowing so far in the future is officially Not My Fucking Problem. Today though, I am making many short-term plans. Hangouts with friends. An art show opening. The Walk to Defeat ALS on Sunday. A zoo trip with family. Neil DeGrasse Tyson – TWICE – in November. I still have a future to plan. It may be abbreviated, but goddammit I have SOME time. I get to make plans. It’s a fucking privilege to tell someone I’ll come to an event in April and know I can. After that. Who knows. My timeline is finite, truncated, and not guaranteed, but I have one. I can see what’s coming and make peace with it before it happens. I get the rare and amazing privilege to become friends with my own death.

And that is fucking awesome.

A is for ALS

A is for Almost.

Two more days. TWO MORE DAYS. And then I’m done with my working career. Three weeks of vacation as a formality. The rest of my life is a blank book, with ALS having already written in all the margins.

A is for Atrophy.

My muscles continue to waste away as ALS kills the neurons transmitting signals to them. My legs are meat stilts, capable of minor movement only; walking on them is a matter of mechanics and getting my knees to lock properly so I can balance ON them rather than WITH them. My hands are curling up into claws of uselessness. My mouth still works, to the detriment of some, and my brain always will. My body is wasting away into the meat shell it will eventually become.

A is for Avoidance.

Most days I don’t really think about it all, except as an abstract idea. Sure, I’m going to die. I have that roadmap. In my day-to-day life, though, the Big-M-Mortality idea makes way for the general practices of getting through life. ALS intrudes in all things, of course; drinking a soda is now a two-hand operation and I can never even pretend that my life is normal again. All of that, though, is background radiation anymore. It’s amazing what can become normal, given time.

A is for Abbreviated.

My life has a shortened length. For some ALS folks, this throws them into a fervor of living as much life as possible in the time they had left. I didn’t go that route. I’m far too pragmatic to have abandoned my job and traveled the world while I still could. I focused my efforts on making my future life more comfortable, and that meant working as long as I could. If we had universal healthcare I wouldn’t have had to worry about it so much.

A is for Adjustments.

The disease progresses, and whatever I could do a month ago, I can’t necessarily do today. Life is a constant series of micro-adjustments and new behaviors, new rules and limitations. I learn of these new limitations, often the hard way, and another compromise with life is created. The new normal evolves.

A is for Afraid.

Just cause I’ve accepted death, doesn’t mean I’m ready. I’m terrified of what this disease will continue to do to me, and what it’s going to cost my loved ones. What it’s already cost them. I hate that I’m so reliant on everyone around me, and it’s going to get so much worse.

A is for Advance Directive.

Seriously, you have to have one. Fill it out today. If I have one positive impact on your life, let it be that I inspired/coerced you to do this one thing. It’s a hard thing to think about, I know, but your family needs to know what you want. They can’t know unless you tell them.

A is for Assisted Suicide.

I don’t know for sure that I’m going to go out this way. But I’m grateful every fucking day that I have this option.

A is for Anger.

I don’t think I’ve ever questioned “why me” so much as outright stated, “It is pretty fucked up that this is happening to me.” No one deserves ALS. (There are a few people I would like to have it temporarily though. It’s a short, sharp lesson in humility and reliance on others.) I’m angry that this disease exists at all. That we know next to nothing about it. It’s brutal and unfair.

A is for Allies.

It’s absolutely true that you don’t know who your friends really are until disaster strikes. I’m grateful in a perverse way for this disease, for showing me what grace actually looks like. I knew my friends were awesome before. I didn’t quite understand the enormity of that power they have. I do now; I am witness to it every day.

A is for Alive.

For now. I continue to breathe, and so I will continue to write and think and feel and rant and swear. And as long as I am alive, I can bear witness to the ravages and the comedy and the love and the struggle and the disaster my life has become. Al of it, often at once. And so long as I have the best medical care team on my side (I do!), the support and love of friends (check!), and a sense of humor about it all (absofuckinglutely), I’ll be okay. Even when I’m really not okay. And when I die, you will know that it was all okay, too. Somehow. Someday. You’re going to be okay.

A is for Acceptance.

Bent Out of Shape

Holy SHIT people are angry about straws right now.

If you’re lucky enough to be completely ignorant of what I mean, now is a GREAT time to stop reading this entry and move on with other happier aspects of your life. No one would blame you. It would probably even save you some heartburn, because damn, there are a Lot of Opinions on the Internet right now.

Quick backstory: a picture of a turtle which had ingested some plastic straws (do not Google it, it’s super sad) has gotten a lot of people up in arms and clamoring for a worldwide ban on plastic straws. Whole and complete, no exceptions. PLASTIC IS EVIL AND MUST BE ERADICATED. This is a great and noble idea, and I fully support nature conservancy and saving the planet and all of that other awesome stuff. Go Mother Earth.

The problem, of course, is that some people actually fucking NEED plastic straws.

I have read more disability erasure bullshit in the last couple of days than I have read probably in the last year. Actual sample quote: “Why is this even a question? You just pick up the glass and drink from it, how hard is it? No one actually needs a straw ever.”

…Well, Susan, you ableist piece of shit, it actually is NOT that fucking easy. Friends who have been out with me to restaurants recently can attest to this, as they have uncomfortably watched me attempt to drink from a water glass without one. With my current rate of disability, picking up a drinking vessel means clasping it between my two fists (because MY FINGERS ARE USELESS GARBAGE MEAT NOODLES) and taking a sip before placing it back on the table, hopefully without spilling or running into anything. If I can pull it off and get the glass back to the table with a simple clink of glass on ceramic plate, I’ve done well. But that’s becoming impossible. FUN SCIENCE FACT: WATER IS HEAVY.

…I need a goddamn straw.

I currently carry around paper straws, for these instances. They’re still pretty wasteful, but it’s a compromise. Carrying around a reusable one is not practical, because I can’t operate fiddly little brushes or squeegees to clean the thing when I’m done with it, necessitating me to carry a sticky dirty straw in my purse until I can get home and ask someone to run it through a dishwasher for me. In a life already fraught with humiliating reliance on other people’s kindness for the simplest dumb stuff, and existing as an increasing imposition on others, a reusable straw is just one more fucking thing to have to ask people to take care of on my behalf. Paper straws are a concession to my disability and a temporary compromise for conservation.

I actually use a lot of disposable things, and feel ashamed for every fucking one. My liberal snowflake heart cringes every time I do, but using paper plates means I can actually lift the thing without spilling food all over my lap because ceramic is too heavy. Using a paper cup means a condensation-slick glass is not going to fall out of my hands and soak my bed when I try to quench my thirst. My hands don’t work well enough to clean out the cat food tin, so it goes in the trash. Every item disposed of makes me feel incredibly guilty, but these are things I have to do now. I don’t have the privilege of washing dishes anymore, or making my life more difficult in the name of reduce, recycle, reuse. It is an inconvenience to you, and a Major Fucking Undertaking to me. And I know in my heart that this is completely understandable, these are sacrifices ALS has demanded of me, and in the grand scheme of things, the amount of trash I accumulate is really not that big a deal.

Not to hear Susan tell it though. I am single-handedly raping the planet because I need a plastic bendy straw.

There’s an awesome chart going around on the Internet right now, and I’ve had the occasion to share it many, many times over the last few days. I’ll share it here, too, because it’s goddamn useful and I am tired of explaining why Product X is not a universally viable alternative to a disposable bendy plastic drinking straw. Observe:

Useful Chart of Usefulness

Currently, I have the luxury of getting away with paper straws. Keyword here: LUXURY. Soon though, soon that will not be an option. The day is coming when I’m only able to slightly turn my head to the side to get a sip of water. Eventually, not even that. I will not be able to lift my body and position myself above a cup with a straw sticking straight up out of it in order to hydrate myself. I need that stupid little bendy thing, that corrugation that makes it almost impossible to make out of any material but plastic and makes cleaning a major undertaking instead of a quick rinse in soapy water. I need the straw to be positionable, and I don’t have a devoted full-time staff who are able to hold a cup to my lips in order to hydrate myself, or constantly wash my dishes, and all of the other things that you don’t even really think about. Because you’re not disabled and you don’t have to.

But I think about them. Because I have to.

I’m learning new things all the time, myself. Before the above chart, straws as a choking hazard didn’t really even occur to me, but now that I think about it, of course they are. Of course putting a rigid thing between your teeth is an injury hazard when your jaw suffers spasticity and clamps down for no reason. Of course temperature tolerance is going to be a concern, when you are relegated to an all liquid diet and not just sipping cool drinks or refreshments. These seemingly no-brainer ideas are new to me, even.

So I’m simply asking that maybe you pause and think about these things too, before you go off on me and people like me who actually need the fucking things. Understand that the ability to do without straws completely is a luxury. Understand there is no simple answer to the horrible problem of plastic waste. Understand that consumer waste is a tiny fucking fraction of this problem, and huge corporations need to be held much more accountable for their part. As the chart says, the burden of a solution should not rest upon this shoulders of the disabled. We are the victims of this problem, not the fucking perpetrators.

Someone who thought they were being clever asked what people did before the invention of straws then, if they are so necessary? Medical professionals answered bluntly: people aspirated liquids, got pneumonia, and died. Plastic straws are LITERAL FUCKING LIFESAVING MEDICAL DEVICES.

So Susan, I’m extremely happy for you that your reusable plastic cup and rigid ass plastic straw is a viable option. For you. Captain Planet would be really fucking proud of you. Go ahead and wear that gold star. Just please recognize that other people on this planet exist, and that your solutions are not perfect ones. Recognize them for what they are. A good idea. A place to start. The beginning of the necessary conversation.

And understand you’re not taking my plastic bendy straws away from me until I’m dead. You can quite literally have them over my dead body.

Saddiversary Part the Fourth

Four years ago, I was told I was going to die.

Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.

I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.

My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.

For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.

But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.

Because fuck that shit.

Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.

My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.

One more year down. One more point for me.

Fuck yeah.

Brutal Honesty

Spoiler alert: I don’t really like children. I’ve never wanted them, I don’t generally like being around them, they are messy and loud and completely irrational and they trigger my social anxiety like woah.

Disclaimer aside: I fucking love how brutally honest and open children are.

They can, as Fred Rogers said, spot a phony a mile away, and they will call it exactly as they see it. And a quality I’ve come to adore: they will ask questions. Adults will stare and make a point of NOT staring, and talk about anything BUT what they want to ask, and dodge the subject so thoroughly you’d think it was a game everyone is playing but you. Don’t Mention the Wheelchair, the worst party game ever.

But kids? Kids will come out and ask and feel no shame, and it’s refreshing as hell.

We went to dinner tonight, at a place with a LOOOOOOT of stairs. There’s a secret elevator entrance way in the back, but you have to have a host/hostess escort you because it’s seriously a maze and you have to go through a business building’s security desk. So tonight, when J wheeled me to the front counter to await seating, it was understandably baffling to a little girl how someone in a wheelchair was going to get up all the stairs she’d had to navigate to get in.

She couldn’t have been older than four. Adorable little thing in sparkly shoes and pigtails, and she turned to her mother when she saw me rolling up. Asking in that louder-than-normal-voice-whisper that kids have, she asked, “How’s she gonna get up here?”

To her credit, her mom was unembarrassed and handled the question honestly. “She’s not.”

“There’s a back way,” I told her.

The girl asked her mom, “Why’s she in the chair?”

“I don’t know,” her mom answered. To my delight, she did NOT try to hush the child up or make a big deal about it. When parents try to silence their kids’ questions, it feels like I’m some sort of shameful thing that has to be swept under the carpet. And hey guess what, when you skirt the issue? You pique the kid’s interest. Oh I’m NOT supposed to talk about this? GUESS WHAT WILL BE OUR TOPIC OF CHOICE TONIGHT. I *can’t* say those words? Well then BUTTS BUTTS BUTTS FART DOODY oh hi Grandma! Today I learned FARTS!

The child then, sensibly, turned to me. “Why are you in that chair?”

“My legs don’t work,” I told her honestly.

“How come your legs don’t work?”

“I have a disease. It makes them very weak. I’m not very strong anymore.”

“Oh.” She considered this new information, and then very logically continued, “well *I* am.”

“I can see that! You look very, very strong.”

And she flexed her little arms for me, beyond proud.

And that was the end of that. We shifted the topic to her shoes, which were very sparkly and lit up when she stomped, and she danced her own little disco until our table was ready and I was wheeled away. Hopefully, she will retain that honesty and people in wheelchairs will remain something normal, to have frank discussions about, and hopefully her parents continue to raise her well and when the answer is “I don’t want to tell you why I’m in this chair” or “It’s private why I only have one eye”, both parties deal with it with grace.

I see it as a continuation of all the conversations I’ve had with children, “Why is there earrings in your nose” or “how come you got purple hair” or “why did you draw all over your skin forever”. I enjoy those conversations because of their complete lack of judgement, their total curiosity. Not, “ewww you are weird and that’s bad” just “why are you different?” It’s an honest, open conversation and the world needs more of that.

So that’s the story of a completely charming child I spoke to last Sunday.

Cyborg Status: Confirmed

So uhhh I have my port installed. It was …an adventure. Lemme tell you all about it!

When last we left our intrepid heroine, she had a really nasty reaction to the adhesives on her PICC line dressing. We moved to a different type of dressing that didn’t adhere for shit. The day I was done with the 14 day initial run, my awesome home infusion nurse came by to change the bandaging. She recommended we get the PICC pulled ASAP so I could get the dang adhesives off my skin.

It took a little convincing to get the nurse to refer me for a port; she was concerned that if I had a reaction to the adhesive as it was, having a port would be just as bad. I was concerned about not having tubes sticking out of me at all times; at least the port would give me a 2 week break every month. We eventually secured the referral, and my surgery was scheduled for 12:30 on December 27th, with a separate appointment that morning at 8:30 to get the PICC removed. When I told my home infusion nurse, she arranged to come by that evening (after her company holiday party, even!) to pull the PICC so we could get the wrappings off me and let my skin recover a bit. We love Deena, she’s rad. It was surreal to see her pull the line…it kind just kept coming out, like a magician’s scarf of surgery and horror. It was MUCH longer than I’d thought. And it was friggin’ DELIGHTFUL to have all that out/off. And the shower I was finally able to take was goddamned MAGICAL.

I received a call from St. Vincent’s hospital the next day – the surgeon I’d been scheduled with wasn’t actually going to work that week, could I go to Providence Portland instead? At 9:30am? Sure, no problem. The next day, they called again – sorry, could we make it same time, but back at St. Vincent’s after all? No problem. J worked that day, so I asked my sister-in-law-of awesomeness Jeanette to be my ride.

And then I made a terrible mistake.

OK so I’m a smart person, and with intelligence comes curiosity, and I wanted to know exactly what I was in for with this port. I watched a video of a woman demonstrrating how to access a port; no big deal, kind of persnickety with regards to keeping everything absolutely sterile, but whatevs. And thennnnnnnnnnn I watched a video of a port install surgery. OK, I am not really squicked out by surgery, and I found the whole thing fascinating until the phrase “BLUNT DISSECTION” came up, and the surgeon LITERALLY TORE A HOLE IN THE PERSON BY JAMMING HIS PINKY IN THE INCISION AND WIGGLING IT AROUND. HOLY FUCKBALLS. My brain went NOPE, FUCK THAT, FUCK THIS, AND FUCK YOU FOR SCHEDULING THIS MOTHEFUCKING MEDIEVAL-ASS SHIT. Intellectually I knew it was fine – MORE than fine, because I was gonna be hopped up on Versed and remember NONE of it and get some good drugs afterwards – but the actual crux of the mistake had been watching this video righe before bedtime, so my brain just did donuts in the parking lot for awhile.

The morning of the surgery, I got a call from the hospital – would I mind coming in early? It was 8:30 and I was scheduled to check-in at 9:30, so I was a bit confused, but I told them I’d be there as soon as I could. We parked too far away and I was a sweaty mess when we arrived at check-in, where I was told…I was scheduled at the OTHER hospital, still. I explained the conversations, they luckily sorted it out. I went upstairs, put the goofy little gown on, and waited. The nurses came in, partly to take vitals and start an IV and make sure I wasn’t pregnant, and partly to play peek-a-boo with my adorable niece. The doctor came in to introduce himself and ask if I had questions. he was delighted that I referred to the Huber needle I’d be using to access the port as “the crooked needle”. I was delighted by his use of the phrase “twilight sleep” to describe the conscious sedation I’d be under. They’d give me benadryl in my line along with the sedatives and a dose of antibiotic, he said, hopefully I’d just sleep through the whole thing.

I remember them wheeling me into the surgery, and seeing the GINORMOUS fucking monitor he’d be using to make sure he was placing the port properly, with x-ray. It was weird to see my name there. The several nurses had their A-Game banter going, and we were having a great time explaining names and tattoos to each other. One nurse thought I had an accent, and asked how long I’d been a Yankee. “My whole life?” A male nurse/technician/whathaveya scrubbed me down with a blue solution, making me the world’s least convincing Smurf. I was freaking cold, despite the warmed blanket they’d put over me. The IV nurse told me he was putting the antibiotics in my line now, and I felt the cold sting. he told me he was starting the sedative now, and then I…

I do not remember a thing after that.

I woke up with a very large image of my x-ray on the monitor, showing the line running into my artery. I was shivering. They wheeled me back to the recovery room, and I slept a bit. Jeanette had taken my niece Jewel to get some lunch or something. They brought me a turkey sandwich, which I devoured. They had put the dressing on a bit shitty; I couldn’t raise my head all the way, or turn my head much because of the way my skin was taped up. It itched a bit. I was given discharge instructions and no pain killers (“Just take some Tylenol”). My sister came back, I got dressed, she took me home, and I slept some more.

The next morning I was aware something was up. I was naughty and pulled the dressing off a bit to allow myself the ability to raise my fucking head, and where the dressing had been tugging was now an angry red wound. I was very itchy. All over my chest. Angry red hives, all over my chest, up my neck, and across my chin. Tylenol, it turned out, did not fucking suffice, so I took some of the hydrocodone I had leftover from breaking my ankle that the doctor hadn’t wanted to give me either because ibuprofin should be fine. YOU JUST TORE A HOLE IN ME BIG ENOUGH FOR A 1 INCH SQUARE MEDICAL DEVICE AND ALSO CUT MY NECK TO SHOVE WIRES INTO MY VEINS – NEWSFUCKINGFLASH TYLENOL AND IBUPROFIN ARE NOT SUFFICIENT FOR THIS. BLUNT. DISSECTION. BITCHES. I slept some more. I woke up to even angrier hives, annnnnnnnnd my eye was a swollen bag of fluid.

IS THIS NOT LOVELY?

So uh…yeah. I was having an allergic reaction to something. It couldn’t be the dressing itself, since the hives were everywhere. It got worse and itchier over the night. I had a different IV home nurse visit that day, to change the bandage since they’d thoughtfully left a needle in the port for me to start the infusions, but I’d bled a bit so there was gauze under the dressing which needed to go. She was very concerned about the reaction, namely that it might be a reaction to the port itself. My delightful friend Lizzie was coming over that day with delicious food for me, and she kindly picked up some Benadryl on her way in. Luckily I had a doctor’s appointment already scheduled for the next day, for an unrelated issue and holy FUCK will I rant about that in a bit. I took Benadryl, ate delicious home made food, and slept a lot.

My PCP is a cool guy, and didn’t mind dealing with the reaction as well as the initial problem we were scheduled to deal with. He suggested two more antihistamines in addition to the Benadryl, and to contact the hospital if it didn’t clear up by Tuesday (Monday was New Year’s). Luckily it did, mostly. I think the problem was the smurf shit they scrubbed me down with, since the hives pretty much appeared everywhere they used it. I have no explanation for my eye becoming a blister, tho.

We’ve now completed the second round of infusions, the port works beautifully, and we pulled the needle out last night. I am once again dressing-free for two weeks. The scar is already nearly healed up, and the itching has almost entirely subsided now that I’ve got no more adhesives on me. I can feel the port under my skin, and it’s weird.

Now I am become cyborg. beep bloop bleep.

Welllp

Good thing we’re gonna go ahead and do the port; when the dressing was swapped out Thursday, my skin was all KINDS of pissed off. I was pretty sure I was having at least a mild reaction to the adhesive, because surely it shouldn’t be THAT itchy? Apparently no. It should not.

Soo we are trying a different adhesive that doesn’t adhere as well, I’m finding, and we will hopefully get the port installed soon.

Fall-ow up Post

Tuesday was not a good day.

It was the urology follow up, and the day began with a clear reminder of why the appointment was needed, followed by massively uncomfortable prep, and then the Lyft ride to the hospital. I was half an hour early, thankyewverymuch. Once inside, I don’t even know exactly what happened, only that my walker was moving faster than I was, and I didn’t have the strength to pull it back under me, and suddenly I was kneeling on the ground. Two older men noticed my plight, and asked if I needed help.

“Yes please?” The question mark was because I had serious doubts these two were going to be able to get me off the ground. Doubts well founded. They were not. A third, younger man assisted and we finally got me seated on the walker. They all left with my profuse, if a little breathless thanks. I wasn’t hurt at all. After catching my breath, I stood a little shakily (yay adrenaline!) and made my way to the urologist, who has a very heavy office door. A gentleman inside noticed I was having a hard time pushing the door open, and opened it for me.

…Only I was leaning on the door knob at the time. With my support pulled away from me, I lost my balance and landed on my back in the hallway.

Please ask if someone needs help before ‘accommodating’ them? This is the first time it’s actually caused a fall, but I’ve NEARLY been pushed or pulled off balance many times by someone trying to help. Please offer to help, but wait until I am aware of you and ready before doing the thing. Thanks.

I was surrounded by noisy, concerned people, including the really bitchy admin from last time who was actually quite sweet this time. One of the people who helped me up this time was one of the same older gentlemen from before. “If I’d known you were coming here, I’d have waited with you.” We got me seated again, and I was left to rest in the lobby, blissfully left to my own devices once everyone was sure I was OK.

The appointment itself was…uncomfortable. All sorts of probes and wires were inserted or otherwise attached, then my bladder was filled and i was instructed to bear down. Nothing leaked, which in retrospect was hardly a surprise because it’s only when I get UP that problems happen, but I didn’t have the presence of mind to point that out. The wires were disconnected, the doctor came in and looked at my results, and…instructed me to pee more often.

That’s it.

That’s her whole plan. Just get up every three hours and pee, maybe you won’t leak. Oh and keep doing those Kegels with muscles you no longer possess. She clearly does not speak ALS.

I left angry and frustrated, and took a Lyft home, only to find Amazon had delivered a package while I was gone. Right in front of my door. My case of Monster. My very heavy 24 count case of 20 ounce cans, right in front of the door. Annnnnnnnnnnd in trying to move it enough to get inside the door, I uh..yeah I fell again. Badly this time. Pain shot through my previously damaged knee and my freakin’ ankle that was broken. My mom, alerted by the noise of the fall (but not the swearing, oddly enough, she didn’t hear me yell), came out to try to help, but there wasn’t anything she could really do. Once I caught my breath and got my legs out from under me, I was able to shove the Amazon box out of my way and crawl inside. It was good to have my mom there this time; even though she could in no way help me up, she was able to get the walker out of my way and put our stepstool by my bed so I could use it to haul myself up.

Thank God I had taken an ativan that morning before leaving, or I’d have been a blubbery mess. As it was, I took a well deserved nap and was pretty sadbrained the rest of the day. Yesterday I was pretty dang sore all over and worked from home. Landing on your ass three times in 2 hours takes it out of a girl.

BUT! Yesterday was also the completion of my first week of Radicava! I think it’s going well. It maaaaaaayyyyyyyy be exacerbating my headaches though; I’m keeping an eye on it. It’s been an eventful and stressy week, so hopefully the coming one is kinder and a more useful baseline. I won’t know really if the meds are helping anything until March, the next Clinic day. I’m committed to keeping it going at least until then.

So now you’re up to date, and I’m gonna go play on the internet. <3

Rad

The latest word on the street in ALS Land is Radicava.

It’s a new, FDA approved treatment, and we’re all pretty dang excited about it because there’s been nothing new AT ALL in 30 years. All we have is riluzole (brand name Rilutek) which you take twice a day and maaaaaaaaaybe gives you another six months or so? Or maybe destroys your liver? Other than that, the only treatment is really an attempt to mitigate some of the symptoms, like the muscle twitches (‘fasciculations’) and cramps, your muscles locking in place (spasticity), the complete fatigue because everything is a lot harder when half the muscles in your legs are gone, depression and anxiety – because it’s not really the five stages of grief so much as the five constantly cycling whirlwind moods of grief. Sometimes I hit them all on the same day.

Radicava (generic name edaravone) isn’t a miracle drug, by any means. It’s completely ineffective for a lot of people, and at best gives just a 33% reduction in the rate of decline. It has a lot of issues, of course, it can cause problems in people with asthma, and well..it’s expensive as all hell. I’ll get to that in a moment. For now, here’s the basics, if you want to read some more, and here are some of the naysayings about it.

Me, though, I wanted to try it from the get-go. I’ve been abundantly clear (or so I thought) that I am willing to try any new treatment, just to be doing something, to provide a little more data for future research, if nothing else. Every Clinic Day, we asked about the latest updates, the most recent news, when is it available. And so I was frankly…crushed, and a bit angry when I found out at last Clinic that people have already been trying it and I wasn’t contacted. That anger increased when they seemed surprised that I was interested in trying it. Like..how could I have been more clear?

Anger turned to rage when I was told that insurance would not pay for it. Because..once again..I have had ALS for too long. Because statistically, I should be dying any minute now. The average life expectancy is three to five years, and I hit three years in April. Never mind in actuality I’m still VERY MUCH alive and not going anywhere soon, thenkyouverymuch. And it wasn’t the pharmaceutical company denying me, it was the insurance company. I wasn’t worth the cost. If I’m statistically almost dead already, it’s not cost effective for them to pay for this. You’ll recall I said it was expensive – let me show you how expensive. Radicava is administered by infusion. Each infusion lasts for about one hour and administers a 60mg dose. The cost for each infusion is as follows:

The medication itself: $1238.80
The medication to flush the IV/PICC/port line into your vein: $180
If you do in-home infusion, the nurse’s time costs $251.20 for the first 2 hrs, $86.10 each hour after if needed
If you go to an infusion clinic, the cost for nursing is $107.10 for the first 2 hours, $50 after.

Now, since it’s not easy to get anywhere and do anything with ALS, we’ll go with in-home infusions, so that is $1,670. Per dose. How many doses do you need? Well, you start treatment with 14 consecutive days of infusions. That’s $23,380. Then you take 14 days off. Then you do 10 consecutive doses over the next 14 days. Then 2 weeks off. Then 10 over 14. For the rest of your life. It’s over twice what I make a year, to use this drug. As much as I hate it, I get why insurance would consider this a dumb investment. I hate that that is even a consideration in whether or not I have access to this.

Knowing that I was going to get denied, I asked to try anyway. I filled out a form giving the infusion clinic access to my medical records, on the off chance they could use this to leverage my insurance company to pony up some dollars to help a dying girl out. Monday I got a call from Searchlight, the company coordinating the treatment, and they said that typically my insurance covered this treatment after a 5% copay. Luckily, she said, once I hit my out of pocket max, it’s all covered. Did I have any questions?

“Yes,” I said. “…Does this mean that I actually am going to be covered for this?”

“Well, we’ll be sending your information along to your doctor provider, but it looks like we’re good to go.”

I dared to let myself hope. Just for a moment. I went out with J and had celebratory sushi, but said nothing to anyone else (except my mom, who was here when I got the call) just in case it was a misunderstanding.

It wasn’t.

Wednesday I got a call from the nurse to discuss the actual cost, how much I was responsible for, and to start making appointments. She gave me the above price list, and we discussed would I like a PICC line or a port? Since this was pretty much going to be a regular thing, infusions by regular IV aren’t an option – imagine having to get your vein stabbed every day for an hour long IV drip. Folks on dialysis, infusions, or chemotherapy usually opt for either a PICC line or an implantable port. A PICC (peripherally inserted central catheter) line goes in your upper arm, and then into a central vein in your chest. An implantable port, or port-a-cath, gets implanted under the skin in your chest and also snakes into a central vein. PICC lines are technically good for a month, though if you treat it carefully, it can last much longer. A port-a-cath is considered a permanent implant. PICC lines are much simpler to install, it’s just a complicated IV insert with a chest x-ray to make sure it’s done right, but a port requires at least conscious sedation. A PICC line needs upkeep once installed; it’s basically two little ‘pigtails’ as she called it, sticking out of your skin and held in place by tape. You can’t get it wet, and have to wear some kind of sleeve to keep it from getting caught on things. A port is just a little bump under your skin, no maintenance required. PICCs are easy to remove if you change your mind. You’re kind of stuck with a port for the rest of your days.

So yesterday I had a PICC line installed.

If I tolerate the meds, we’ll install a port.

This is happening. Even if it does me no good at all, even if it actually makes things worse, we have tried. I am a data point. I did something. I did everything I could. I should start infusions next week.

I can’t wait to keep you guys posted.

A Humble Request

I’d like to formally ask all of you guys to do something that you really ought to be doing anyway:

When you wash your hands, and splash water on the counter, wipe it up.

Again, you should be doing this anyway. But I ask this of you, because I can’t support my own weight on my own two feet anymore, so I have to lean against the counter to turn the faucet on to wash my hands, so I get a big wet line across my gut. And my hands don’t work very well, so I usually have to lean on my elbows to get them under the water and rub them together to soap up, so now I’m also wet to the elbows.

Just, dry your hands, then run that towel across the counter before you throw it away. I promise it’s not hard. I’ve always done it, when my body worked like yours does, so I know it’s possible.

Thanks, darlings.

Time to Take the TMI Train to Tinkle Town!

Ok seriously, this is a TMI warning. There be candid, unglam talk about pee and even some butt stuff. So uh. Yeah. Proceed with discretion.

Soooooooooo the main reason I have not been posting is two-fold, with the reason being DEEEPRESSSSHUNS, stemming from 1) my stepfather dying and now my mom lives with me, and 2) a new symptom which is KICKING MY ASS in all kinds of fun physical, mental, and emotional ways. My surprise roommate situation – that will get its own blog, don’t you fret. Things are actually settled and pretty ok on that front now; that’s the GOOD part about avoiding blogging during a crisis – you get to walk in at the end of the story!

Ok so I just checked the archives for the first time I wrote about this thing and it was March of 2016. So I need to stop calling it a new symptom. Duly noted, self. Well. It was kinda a one-off thing, it happened a couple of times? But the last few months it’s been a serious deal and I am seriously not dealing well.

As you may have surmised, it’s about this:

And then I was just…peeing.

“Urge incontinence”. Only…there’s no “urge” part anymore. It’s closer to say that it will occur to me that I haven’t peed for awhile and should prolly do that, or I kind of have to go, and then before I can get to the toilet, I am just peeing. Everywhere. I’ve had to leave work early because I had to change my clothes, I’ve had to change clothes I literally just put on. And it’s not like I’m peeing in my chair, oh no, it fucking WAITS until I am alllllllllmost to the toilet and then just lets itself out all over me and the bathmat in front of my toilet before I have the chance to undress, much less sit the fuck down. Unless I physically cross my legs to contain it – and often, even then – there’s a mess.

I’m 42 and I wear incontinence pads every day now. As I posted previously, a lot of the articles about ALS say that usually bladder and bowel function aren’t affected. I took a lot more comfort in that than I realized. Like..sure I might be choking on my own spit someday, but at least I won’t be sitting in a puddle of my own urine. But no, I’ve not even begun to have speech or swallowing problems yet, but I have left trails of pee from my room to the toilet – while WEARING a fucking pad. They only hold so much, and I’ve peed through even the overnight Poise pads more times than I can count.

Fun fact – Poise pads are rated by flow, just like menstrual pads, onle they don’t use words like “light, medium, and heavy”. They use words like “drips, dribbles, spurts, and gushes”.

Additional fun fact: menstrual pads and incontinence pads are NOT THE SAME THING. Ask me how I found out! At work!

So, last clinic, I brought this up, and we started the road to Figure Things Out. It has NOT been a good road.

Like, at all.

We started the easy path, with a medication. That did nothing. We upped the dose. Nothing. I was referred to a urologist. He had me pee in a cup to make sure I didn’t have any weird infections – this is not easy any more. You kinda need functioning hands to maneuver this, and remember this point. It becomes VERY important later. He then did an ultrasound on my bladder to make sure I was emptying it completely when I peed. I do. He shrugged and gave me samples for a new med to try. I did. They did nothing. He gave me another months’ supply in samples, and said he was previously going to do a couple of tests that day, but given my whole situation, he instead referred me to his colleague, who could do an ENTIRE workup. He said they’d call to schedule that; it’s an hour and a half appointment that involved probes and a scope up my urethra, soooooo be prepared for that I guess.

A week later, I get a call to make the appointment, and they send me a pamphlet of what to expect, and a sheet of instructions on how to prepare. The word “enema” is involved. Two enemas, exactly. One the night before, and one the morning of. The informational pamphlet says they’ll be sticking a scope into my bladder, to take a look, they’ll also be doing a flow test which means I sit on a commode and pee to determine…something, I guess. How fast I pee? And then they’ll be filling my bladder with sterile saline and stick a probe in both ends, and then have me do some tests like bearing down, and standing up. I guessed there would be puppy pads all over the room for that part. I was not looking forward to this, like, at ALL.

And so, the weekend before the appointment, I had to muster the courage to ask J to take me to the store so I could buy a freakin’ enema. He’s actually been amazing about listening to the really awful details of this whole bullshit Godzilla Disease, and took it in stride, and sympathized about the scope part cause he’d had that done. We bought what I needed, and then the night before the appointment, I set forth to do the thing.

OK. Here is where it is important to remember the part about “you kinda need functioning hands”. If you’re not familiar with an enema, it is essentially a flexible little bottle of saline with a thoughtfully, pre-lubricated plastic tip. You insert the thoughtfully pre-lubricated tip into your butt, squeeze the contents of the bottle in, and then wait for nature to do its thing. The bottle, for reference, is smaller than a standard soda bottle by a lot. It’s also full of water, which is heavy. Sooooooo don’t actually picture this, because gross, but…entertain a brief thought about what kind of difficulties a person with ALS may have in this situation. Especially when she is also overweight, and seated on a narrow, raised toilet seat with bars that prevent her from say, separating the knees as far as one might wish to get access to that business.

If your imagined, hypothetical scenario included dropping the bottle in the toilet more than once, and then ultimately only managing to squeeze maybe a third of it in? Congratulations. Now do that again in the morning.

The night before the appointment, after dealing with the ahem..effects..of the ordeal, I have a worrying thought. The clinic has more than one urology office location. There’s the one at the hospital in NW Portland, where I’ve been seeing this dude, but they ALSO have a location in NE Portland, where Dr. Goslin is. The urologist just mentioned a colleague. Same office? I scoured the paperwork I had, nothing had an address on it. It was Monday night at 10. I couldn’t call anyone. I checked the web portal for the clinic, and they had NOTHING about upcoming appointments anywhere. I could check every fucking thing else in my medical files with them, but nothing about an upcoming appointment. They hadn’t called with an appointment reminder.

I took my chances and went to the same clinic. And…yeah, you already guessed it was the wrong fucking hospital. Amazingly, they had another opening at the right hospital the very next week, so I made that appointment. After the month I’d been having, and the whole enema ordeal and the humiliation of that and the frustration of my hands just not fucking cooperating enough to do this, and the nightmare scenarios of thinking I’d ever have to ask someone for help with that, and paying $30 on a Lyft to the hospital and knowing I was going to have to spend another $30 to go home….I went into the hospital bathroom and sobbed a lot. Then I went home and took a nap.

The next week, I had better ideas about how to do the prep work. It went better, but also involved having to do the thing twice, since I could still only get a half dose in. The morning of, I had a complete incontinence issue and peed alllllllllll the fuck over m,y bedroom carpet and the bathroom tile and the bath mat and the toilet seat and everyfuckingwhere. And then after I cleaned it all up, I had to deal with the second dose of enema funtimes, and then got dressed and called my Lyft. It is 20 miles from my apartment to the hospital, mayyyyyybe 45 minutes with traffic. I left around 7:30 for an 8:30 appointment. There was a 25 minute traffic delay. I got to the hospital at 9AM. When I realized I was going to be 10 minutes late, to a 90 minute appointment, I thought about calling them to apologize but didn’t think I’d missed the appointment It was an hour and a half, and they always keep you waiting 10 minutes in the lobby anyway. When Waze bumped the arrival estimate to 8:45, I contemplated having him just turn around and take me back home. When the arrival time hit 9AM, I just kinda…turned off and knew I was showing up just to reschedule with the receptionist. I got to the office, explained what happened to the Eastern European lady, told her I realized at this point I was probably going to have to just reschedule the whole thing, and she looked at me like I was stupid.

“You have to PLAN for these things,” she told me like I was a child. “You can’t think traffic isn’t going to happen.”

“I planned a 15 minute buffer,” I told her. “It took 45 minutes longer than it should have.”

“You have to think about traffic,” she shook her head at me, exasperated. I guess she realized I was very, very close to tears, because then she said “I’ll see if they can get you in. But I don’t think so.”

Cue about 8 minutes of me leaning against the counter while she talked to the other office folk about how I seriously expected to be able to show up 30 minutes late and then a muffled conversation around the corner with the nurses, and I was JUST about to tap on the glass and remind her snarky bitch ass that I had ACTUALLY apologized and asked to fucking reschedule in the first place when I GOT THERE when she came back and said they could do PART of the appointment today, and maybe if the next person doesn’t show up for their appointment, we could get it all done.

We did not, in fact, get it all done.

Wanna guess which part we did not get done? The part that required the enema prep? OH WELL DONE YOU GET A PRIZE. We DID get the part done where they put numbing gel in my ladybits and then jammed a camera scope in there. I got to see the inside of my apparently healthy bladder, and even watched my kidney spit a blurble of pee into it. I did the pee-over-a-cup-on-a-scale test, too, and then sat in the room alone with no underwear on while we waited to see if the next guy showed up. When he did, I was ushered out to the lobby to reschedule without being given a chance to put said underwear back on, and then stood at the counter with a breeze up my dress while I waited for Ms. Thing to get me another appointment. At least she was equal opportunity bitch, because another dude came out of the office and needed some followup something, and she barked at him to just sit down and she would get to him in a minute. And then told me that she just couldn’t STAND when people just HOVERED like that. And then she tried to be sweet and called me darling when she found an appointment a month away “so much quicker than I thought for you” and made a point of scheduling me for the LATER time, and wrote my appointment time as 15 minutes earlier for arrival on the reminder card. Like…yeah, I GOT it, bitch. I WAS LATE. And then I went outside and got a Lyft home that cost $40, like the ride in, and I guess the worst part is how everyone assumes I have a magical support network for free that can help with enemas and free rides where I need to go so it’s just an inconvenience to THEIR asses when I get caught in traffic or they send me to the wrong fucking hospital in the first place.

Oh, and this was on Halloween.

So now, I get to wait a month, do enemas again, and in the meantime just continue peeing myself all the time because it’s not at all disruptive to my life? And then pay another $80 in Lyft fare to have probes shoved in me? And in the meantime, the urologist’s advice was to do some Kegels. IF I COULD CLENCH THOSE MUSCLES IN THE FIRST PLACE, LADY, WE WOULD NOT BE TALKING TODAY. DO YOU KNOW WHAT THE FUCK ALS EVEN IS. It’s when you try to use a muscle and CAN’T. BECAUSE THE MUSCLE IS GONE.

So yep. I’ve not been living my best life lately. This has been really hard. And humiliating. And a big fucking mess. In every sense of the word.

Next time I’ll tell you about clinic day and all that. This was a difficult post to write. I’m going to go look at some cat pictures or watch some jellyfish for awhile.

Unsafety Net

I have Clinic next Monday, and one of the things I need to talk to them about is maybe upping my depression/anxiety meds. I’ve been having severe bouts with SadBrain lately, and while I have hella circumstances that warrant being sad, I don’t like being crippled by ennui just because a cat video looked at me wrong.

Last night, even though I KNEW BETTER, I watched a documentary about coral on Netflix. I knew it was going to deal with the devastation on our reefs caused by climate change, but I love coral and wanted some beautiful imagery. I wasn’t disappointed on either front, and when one of the guys involved with the project started crying over the devastation of his beloved corals, so did I. And I cried for a long time.

And I thought, not for the first time and CERTAINLY not the last, that I’m a little bit glad I’ll be dead sooner than later. I don’t want to live on this planet anymore. And I honestly couldn’t tell if that was SadBrain or Cynicism talking.

Either way, both them bitches need to shut up.

Broken

As usual, I can’t tell you exactly why it happened, what was the mechanism, only how it happened. I was in the bathroom, turning left at the sink, and I went down. Despite having a death grip on my walker, I fell to my knees with my feet doubled up under me. I’m getting pretty good at falling, but I was immediately aware that Something Was Amiss.

What happened next was a full five minutes of writhing and howling on my bathroom floor while my two cats freaked the fuck out. Now, I have a pain tolerance that has impressed doctors. I developed dry socket after a tooth extraction and was so unreactive when the dentist was packing it, he had to check that I hadn’t passed out. But this? This fucking hurt. There’s a difference in your body, when you’ve hurt yourself versus really fucked something up. A primal signal somewhere in your animal brain of “oh shit we have done it now.” Outside of a few memorable migraines, I’ve never been in so much pain. My stomach was queasy and I was visibly trembling as I tried to sit up, tried to breathe. Shivering. Panicking. Every movement spurred a fresh tirade of wordless howling, one long string of OWWWWWWWWOWOWOWOWWWWWWWWW and I’m honestly surprised that the neighbors didn’t call the police.

…I’m kinda pissed off that they didn’t, if I’m being honest. I know they were home, and I know how well sound travels across our apartments, and the fact that I was yelling myself hoarse (literally) and no one came? Pretty pathetic.

I tried to text J with my SmartWatch O’ Doom, but it told me SMS was unavailable. The shit, watch?? WE WERE SUPPOSED TO BE A TEAM IN EXACTLY THESE SITUATIONS. THIS IS WHY I BOUGHT YOU. I knew I could call him, though, or even 911, with the thing, but I resolved to try to at least give myself a few minutes to breathe and calm down and hopefully the pain would subside enough where I could think straight. I’d call J if I couldn’t get myself off the floor, and text him if I could. OK. Think. Plan. Move. Slowly.

I still don’t know how the FUCK I managed to get myself on my bed. But I did. I messaged J that I’d hurt myself and thought I needed to go to urgent care. My ankle was already puffy, and my poor previously damaged knee was pissed off again. He offered to leave work immediately, but I told him I could wait the 90 minutes for his shift to end. I didn’t think I broke anything, but even if I had, 90 more minutes was not going to make it more broken.

PROTIP: BROKEN LIMBS ARE NOT ACTUALLY LIFE-THREATENING EMERGENCIES. THEY JUST SUCK.

I popped three Advil and waited. The trouble with ALS is that you can’t really inspect yourself for a break – I can’t wiggle my toes on a GOOD day. It felt like a sprain, but I had no real frame of reference as I’d never broken a bone before. Everything still moved, no grinding feeling, it just hurt like hell. I hoped it was just a sprain.

Basically, I was fucked if it was a break. I’m already reaching the end of my ability to get around with a walker. I can’t use crutches, so a cast – or God forbid SURGERY – would pretty much be the end of me walking, ever. It would mean a wheelchair during recovery, after weeks of which I likely wouldn’t be able to get back on my feet. I tried not to think about it too much, and waited. Whatever I did to myself, it was bad, but I optimistically didn’t think it was THAT bad.

J came and got me, he helped me put clothes on (it was a Work From Home day, I don’t put real people clothes on when I don’t have to) and on to the walker so he could push me out to the car. It was about 5:45 when we got to Urgent Care. He got me into one of their wheelchairs and inside, and we waited. They took us back to a tiny little room that wasn’t big enough to turn the wheelchair around in and we waited. They moved us to a bigger room that we COULD turn the wheelchair around in and we waited.

See also: Broken/Sprained Limb = not life threatening emergency.

The doctor finally came in and did the obligatory I AM GOING TO HURT YOU A LOT BY PRESSING AND PULLING ON YOUR HURTY BITS AND ASKING IF IT HURTS torture session. Palpitation damnation! He recommended an x-ray of my ankle, which was turning quite purple by then. He seemed unconcerned about my knee, even though I told him it also hurt a lot and had been previously injured. Luckily, there was an x-ray lab onsite so I was able to get that done right away.

…Well I SAY right away, but the x-rays took forever because I fucking have ALS. Why NO, Nurse, I can NOT stand up on one foot to get on to the x-ray table. And your little 5 foot nothing ass is not going to be much help. Also not helping? Being in so much pain I’ve got cold sweats so my palms are slippery, so it takes like 8 tries . Once we managed to get me on the table, it was still a conversation about no, I can NOT just lift my foot a little to the left. I HAVE ALS MY FEET DO NOT WORK LITERALLY AT ALL. I CAN NOT FLEX MY TOES. I CAN NOT TWIST MY BODY THAT WAY, I CAN NOT ROLL OVER ON MY SIDE WITHOUT A GRAB BAR. FOR MEDICAL PEOPLE YOU SURE AS SHIT ARE NOT CAPABLE OF HANDLING PEOPLE WITH MEDICAL PROBLEMS.

We finally got the images she wanted, and then I was wheeled back to the room to wait some more. The three little Advil I’d taken had worn off their little edge-blur loooong ago.

The doctor returned in a little bit with a printout of my x-ray. “Have you previously injured your ankle?”

Confused. “No?”

He gave me a sympathetic look and handed over the x-ray. “I’m afraid it’s a fracture.” He showed me the little chip of bone that had broken away.

My busted-ass ankle.

FFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCK.

FUCK FUCK FUCK

He started talking, about making an appointment with the orthopedic specialists, about how they would splint it for me tonight in the meantime, how I was to Stay The Hell Off Of It. I asked if I could have some pain killers, maybe? and he said he’d give me a couple of tablets, sure. He left to write it up, telling me that the nurses would be in momentarily.

When we were alone, J asked if I was okay. I’d voiced my concerns about never walking again, and I wasn’t sure. Mostly I just hurt. The supercool nurse assistants came in, splinted and bandaged me up, and brought me the scrip to hand-carry to the pharmacist. I was free to go. We got milkshakes on the way home. J was amazing as usual and got me settled in and medicated and hung out with me for a little while, and then I slept.

Turns out breaking a bone hurts a lot and sleeping doesn’t make that go away. Especially when you need to elevate a limb and oh, what do you know, you have cats that like to stand on high places! WHAT THE SHIT MOLLY. I worked from home a bit the next day, I had lunch with J and my friend Eric when they brought me food, but mostly I slept. I made an appointment with the orthopedic specialists for the next day, to determine the next steps.

That turned out to be a ridiculously short appointment, because there was precisely fuck all we could do about the break, turns out. I had essentially sprained my ankle SO BADLY it pulled a chip of bone away. The chip was too small to screw back in without it disintegrating, so no surgery needed, and the damage was in such a spot that a cast would be useless. I was given a brace that hurts like the devil to wear and told to elevate, ice, medicate, until I felt like I could put weight on it.

I…guess that is the best outcome. I won’t be disabled by surgery or medical equipment, only by my tolerance for pain. For now, I’m mostly kicking it in bed with my foot propped up, mostly weaned off of the Norco, traveling by wheelchair as needed.

Oh. yah. Wheelchair. BECAUSE MY FUCKING WALKER BROKE ON SUNDAY. AAAAAAARRRRRRRRRGH.

The Universe has apparently had it with my shit.

J went out and bought my new one today. I will sticker that bitch up, too. And hopefully, soon, be using it to walk with for a little while longer.

This Was Spinal Tap

This Was Spinal Tap

So yeah! Part of my diagnosis cha-cha was getting a spinal tap – lumbar puncture if ya wanna be all techyface about it. It was primarily to eliminate the possibility that I had MS. Of all of the testing and poking and everything, this was the only procedure that I had any real nervousness about. I got some practical advice from t3h J03 who had been through one already, which helped, but I was kinda braced for it to be awful. I’d seen a lot of episodes of House, where they tell the patient to curl up on their side and brace themselves because… *dramatic sympathetic look* …it was going to hurt. I knew it wouldn’t be NEARLY as bad as House makes it look; I wasn’t afraid of the pain, but I had concerns about the possible side effects or complications and just kind of freaked out in general because OHMY GOD THEY ARE GOING TO SHOVE A NEEDLE IN! MY! SPIIIIIIINE!!! YOU HAVE A FINITE AMOUNT OF SPINAL FLUID AND IT COULD ALL LEAK OUT EVERYWHERE!! I COULD DIE!

Obviously I did not die.

It was actually a piece of cake. I’ve honestly had routine blood draws more painful. I wanted to post about it, for the curious, and also to reassure anyone who might need one. THEY ARE LEGIT NOT A BIG DEAL. Technology is amazing, and it’s not nearly as archaic as the tv shows make it to be, and it seriously did not really even hurt. Here’s how it all went down:

I was crazy early, and they also had some emergencies come through so they actually took me back 45 minutes late. They were playing The View on the little waiting room TV, which cemented my hatred of daytime television. So many screeching women talking about shit that doesn’t matter. When you have the former World’s Fattest Man on your show to talk about his amazing weight loss story and his reentry into society, and his girlfriend joins the panel, IT IS VERY RUDE TO ASK ABOUT THE MECHANICS OF THEIR SEX LIFE. Specially as he was so, so very British. I could FEEL the discomfort off of the television.  UGH HOW DO PEOPLE WATCH TELEVISION.

So I was very happy to be taken back!

I changed out of my clothes into pants and gown big enough to swim in. My tech apologized that she did not have smaller pants, just do the best I could. I could have fit in them three times over. We went into the radiology room, where I had a bit of blood drawn for something or other, and I literally did not feel it. I watched him do it and everything, and commented on his magic touch. Blood draws aren’t particularly painful or anything, but it was weird to feel nothing at all. 

The tech explained everything that was going to happen, step by step. Here is this big-ass table, upon which you will lie as still as you can, we will use live x-ray to see exactly where we are going, and if you feel any discomfort at all please tell us. The radiologist came in and did the same, and I signed the consent forms and crawled up on to the table. They had me lay flat on my stomach, and the tech was all “I’m just gonna pull these down a bit,” meaning the pants, and promptly exposed my entire ass to the room. THANKS LADY. HI HAVE THAT. They chatted amicably while they worked, about skiing vacations and everything while he washed my back down with iodine which I swear to GOD they store in the freezer. I was warned it was going to be cold but HOLY CRAP KIDS. That, I think, was the worst part of the whole ordeal, and really it was nothing. He marked the spot he wanted, and jabbed lidocaine under my skin. That pricked a little, but no big deal. He was watching himself work under the x-ray monitor to guide the needle through. I felt it push in, which was a weird jolt of pressure, and kept waiting for the pain, which never came. He pulled out a vial of maybe like, a tablespoon of fluid, and then three more vials of like a half teaspoon each. One of them would be tested for MS, and I’m not sure what other battery of tests were done. It was weird to see these vials of clear fluid and think that your brain is floating in that stuff. 

And then we were done. I think I was in that room for twenty minutes, most of which was waiting for the doctor to show up. Maybe ten minutes on the table, tops. I was wheeled on a gurney to a recovery room, where I had to lay for twenty five minutes or so to make sure my spine wasn’t going to leak out everywhere. They gave me a sammich to eat while hanging out. I kinda expected to feel…something. But I was totally fine. No headache, no nausea, no dizziness, nothing. So I got dressed and we got out of there. Danielle hung out with me that afternoon to keep an eye on me, but I think she was a little surprised at how little I needed tending to; she even made a comment as she left about feeling useless. I was perfectly fine, and able to get around okay.  The only result from the tap was eventually I got a bit of soreness across my lower back, which just felt like I was sitting too long, and the rare side effect of a spinal headache. I had actually resigned myself to getting a spinal headache, since headaches and I have such a close relationship, but most people don’t. Spinal headaches are strange; if you stand up, it hurts, but reclined in bed you feel perfectly fine.  I was able to go back to work quickly, but I had to kick my feet up on the desk and recline for most of the day. It’s not a conducive posture to actually getting much work done.

All in all, I think it felt a bit anticlimactic, if anything. I was geared up for ….something, and it was totally nothing. No big deal. At all.

So now you know.

Cry Me a River of Lava

I had a 3AM epiphany after watching one of many, many, many nature shows. I’ve been on a Carl Sagan and Brian Cox kick lately, having completely exhausted all things Sir Attenborough. My mind latched on to the idea and wrestled with it rather than letting me sleep: people are like volcanoes.

No wait, stick with me.

Our outer shell is a hard rocky thing, but internal emotions are a seething, writhing mass of potentially deadly stuff. Some people bottle that up and become a tall cold stately thing, very impressive to look at but not all that interesting. Some people let emotions seep out all over the place until they are thin, flat, and stretched out to a similar on interestingness. Most of us though, keep it bottled in until it can’t be bottled anymore, and there’s an explosion. Sometimes there are signs for months or even years before the event that an impending irruption is eminent; irritability, depression, reclusiveness the equivalents of smoke and the occasional ash plume. Sometimes the eruption is sudden and violent, and nothing around it is ever the same. And once the eruption is over, we may become a stark hellscape of stripped trees, chartered earth, and acrid air. Or, we may become an amazingly fertile landscape of lush vegetation, the ash of emotional eruption fertilizing our lives afterwards. We can either be scarred by the experience, or renewed by it. And we can, if we are lucky, even use that emotional lava to build something new.

I suppose I saw it coming for weeks, this latest eruption. I had a serious bout with Sadbrain, to the point last Wednesday while having dinner with J, he repeatedly asked me if I was okay, because I clearly wasn’t. I didn’t know what to tell him. Of course I wasn’t. I’m never going to be “okay”, not ever again, but I can be okay with what’s happening. Occasionally. Right now, in this moment. Naturally sometimes are going to be rougher than ours, of course they are, but Sadbrain is another beast entirely. It’s born of, but not entirely created by, current events of course, but there is an insidious undercurrent of malignant chemistry in the mix to make things even worse.

He and I had had a chat about suicidal ideation lately, I don’t even remember how it came about. I told him I’ve never been properly suicidal, never really wanted to commit suicide, to which he immediately scoffed. I corrected myself that of course I’ve thought about suicide, everyone does, even if only in a sort of philosophical way. But I’ve never actually thought about killing myself. “I don’t want to kill myself,” I told him, “but …sometimes I just don’t want to be alive anymore.” Being alive is hard, and often it would be so much easier to just …not. I don’t have the impetus or the energy to actually end my life, and I would never want to, but I can’t help sometimes to just… not want to exist.

And, this is the space I was in. Everything seemed unnecessarily difficult. My job had thrown a bit of a curveball at me, physically of course things are continuing to decline, there was drama with my cat, bad things happening to the people I love, horrors occurring daily in the world which I keep failing to protect myself from hearing about, and my continued search for a living situation is so desperately difficult it deserves its own post. Which, I may or may not get up the emotional fortitude to create some day. And so, two days ago, I completely erupted.

I was working from home that day. I had a role-playing game session that night planned with my friends, and was kind of freaking out about just not wanting to deal with the outside world. Not that I didn’t want to see my friends, and it’s not that I didn’t want to play, but that the concept of existing I any capacity in the outside world seemed untenable. Jay gave me an opportunity to decline to go, but of course my social anxiety and sad brain told me that if I couldn’t even manage to go out and have fun, then I was truly worthless. I was determined to make myself go out, even if I didn’t feel like it. I was watching Cosmos with Carl Sagan while I worked that day and I listened to Sagan talk about our thousands of nuclear bombs and how one of them is the equivalent destructive force of the entirety of the destructive force of all the bombs used in WW2. And then he wistfully pondered how we could wipe out the entire world population in the space of “a lazy afternoon” instead of one small corner of the world over 6 years and I just …totally lost my shit and started bawling.

Completely erupted.

The next 30 to 40 minutes were spent sobbing like a heartbroken thing, wailing into my hands, hyperventilating, or staring at a space on the wall with tears spilling down my cheeks. I can’t even articulate why I was crying, or what I thought it would help to rub the scratchy hand towel into my face until it hurt instead of blowing my nose, or why it just seems natural to rock my body back and forth or hold my fists in front of me and just shake, but that’s what I did. For almost an hour. There was no one sore spot, no one trigger, just that everything was terrible and I was broken and I wanted more than anything to just… Not have to exist.

Needless to say, I did not go to game that night.

Instead I took more than my usual dose of Ativan, put on a nature show that had not a shred of social commentary in it, cuddled the hell out of my cats, and eventually tried to sleep. Eventually I succeeded. I guess that’s one blissful thing about mental and emotional breakdowns, they leave you so completely exhausted that it’s easier to get to sleep.

I feel that this particular eruption is not quite over, there’s still a little hiccups that keep happening. I came across an image today, posted below, and I kind of lost it again. Just for a minute. Molly woke me up at 5 AM this morning to be petted, and I’m probably projecting but she seemed frustrated that I can’t quite had her properly anymore. And this is the first post I’ve ever cried while dictating. Sad brain has a lot to do with this, but of course there are legitimate underlying reasons for all of my distress definite geological pressures to go with the mystical phases of the moon and planets aligning just right. I wish I knew what drugs to take, how many virgins to sacrifice, to prevent these eruptions from happening again, but I know they’re going to. For as long as I am physically able to draw breath, and think, and feel. All I can really do is monitor the seismic activity of my emotional state and declare a state of emergency when I feel interruption is pending. And do my best to mitigate the damage when these eruptions are sudden severe, and catastrophic.

And try my damnedest to make sure this results in a verdant forest instead of a hellscape.

http://thelatestkate.tumblr.com/

Bad Mood Bears

It really doesn’t take much to tank a mood when you’re already predisposed to depression. I’m pathetically prone to frustration, as well, so it really doesn’t go well when I try to do something and am thwarted. Especially when it’s something simple, and I really ought to be able to Do The Thing, dammit, only Godzilla Disease says “HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAnnnnnnnno.” I’m getting better with accepting physical limitations, but I’m still having a really hard time with accepting that I just don’t have enough mana to do a lot of things anymore. Like..the strength is there, but the exertion makes the thing impossible, or damn near. Or makes it impossible to accomplish anything AFTER Doing The Thing.

This comes up today because I was gonna do a video for you (really, honestly I truly was), but there were certain “beauty” regimens I’ve been completely neglecting and I’m FAR too vain to let y’all internet strangers see me with no hair extensions in and no makeup on. So I was doing stuff, and I wore myself the hell out even getting READY to take care of things, and then I got really frustrated and headachy, and my mood tanked. So rather than cry and feel sorry myself and sulk for the rest of the afternoon, I’m posting instead.

So here’s a list of things that wear me the hell out, that didn’t used to, and it’s frustrating as all get out.

1. Walking to my desk from the car when I go to work.
2. Restocking my minifridge with sodas.
3. Taking a freaking shower.
4. Laundry.
5. Feeding the cat AND getting food for myself in the same trip.
6. Putting on tights.
7. Shaving my head.
8. Going to more than two stores in one trip, even if I use the stupid little go-cart things that never work well.
9. Petting a cat for even half as long as they want me to.
10. Any stupid little repair/decorating thing like putting the poster back up that Molly knocked off the wall because she is a bitch.

Godzilla Disease is hard because it removes your ability to do things, but slowly, and gradually, so you can’t even get used to your new limitations because they are constantly changing. Which is DUMB and stupid and frustrating.

Anyway, that’s why you don’t get a video today. Soz.

Stabbity Stab Stab

One thing I love about being one of Dr. Goslin’s goslings is that she is super, wicked smart and stays on top of the latest research. Any time someone sends me an article about some new breakthrough or other, I am completely confident that she has already seen it and researched it to pieces. The upshot of this is that, when she suggests I try something, I know it’s a very well-considered proposal.

In our last Clinic Day, she told me about this article. Massive megadoses of B12 have been tentatively shown to maybe possibly potentially help with some of ALS’ stupid symptoms. She gave me the article, asked me to mull it over, and let her know if I’d like to try it.

Roadblock number one? Insurance won’t cover it. She told me it ran between $250 – $300. I could either get it in a vial with needles, or pre-filled needles, for more dollars. Now, I can manage to afford that now, while I’m unemployed, but when I’m not? Sucks to be me, if it works. I had me a nice angry meltdown on facebook about how stupid that is, sulked, and researched some more. My friends assured me that if it worked, they’d help me fundraise to get it, so don’t let that stop me.

Roadblock number two? Self. Administered. Intra. Muscular. Injections. Now, I’m tattooed, have multiple piercings, I am in NO fear of needles. But I didn’t know that I’d have the nerve to stab myself every day in the thigh. In the morning! And then there was the problems of mechanics, having enough hand control to push the plunger in. So, a mental AND physical challenge.

I decided to try; they recommend one month at least. I decided to go for it all three months until next Clinic, and I’ll likely still be employed all that time to afford it. I sent Dr. Goslin an email, she gave me the prescription, and thus began the Wacky Comedy of Errors. Holy crap.

First of all, only several pharmacies compound the stuff. For some perspective, the average over-the-counter supplement is 2.4 micrograms. This injection is 25 MILLIGRAMS. That is more than TEN THOUSAND TIMES the dose. Understandably, there’s a limited number of folks who make it that strong. So I had to *gulp* CALL A PHARMACY. IN PERSON. They got the prescription from Dr. Goslin. Then they called me to get my personal information. Then they called me back with pricing. A vial of it would run me $215, plus $30 shipping because it has to be kept refigerated and mailed cold. Oh. But they can’t ship it to Oregon; they’re not licensed to ship there, did I know someone in California or somewhere I could have them ship to, who could forward it to me? For another whatever-it-costs for overnight shipping to keep it cold? LUCKILY I have my dear friend Amanda in Vancouver, which is not so far away, and she was happy to recieve the package on my behalf AND dose it out into the syringes for me. Two days later, she got my vitamins.

With no syringes.

No big deal, she went to a pharmacy. …Who would not sell her any without a prescription. They gave her 4, though, so I could get started while I waited over the weekend for my doctor to send in a prescription. Doc Goslin was in a conference, turns out, so she turned the task over to her nurse, who mistook the instructions and sent in a scrip as though the injections were WEEKLY, so they only gave me 11. And to the wrong pharmacy, but that wasn’t her fault, DocGos didn’t tell her that part of my request. So I sent in an email to get it corrected and to the right pharmacy, only insurance now wouldn’t cover it because I was trying to fill the scrip too soon. You’d think the fucking things already have heroin in them, with how hard it’s been to get hold of some. FINALLY we’ve got it sorted and I can go pick up the rest of them tomorrow.

Theoretically.

I started the shots a week ago. You have to keep it refrigerated, take the shot out of the fridge 20 minutes prior to administration, and keep it in a dark place while it waits, because B12 is light-sensitive. And THEN you may stab yourself. It took a couple of tries, mind you. 1mL is a LOT of liquid to get in there. The initial stab isn’t bad, unless I hit a nerve, but sometimes it takes some doing to get the plunger all the way in. And sometimes some of the liquid comes back out when I withdraw the needle, which sucks because it’s a blood red liquid that stains. I was warned that it gets metabolized quickly, and I’ll pass whatever doesn’t get readily absorbed, so my urine miiiiiight turn reddish or pink.

It totally does. So, thanks for the warning.

I haven’t noticed a difference in anything yet. I’m still experimenting with where to do the injection, as there’s not a LOT of muscle left in my thighs, and it’s blanketed with fat. Shooting my bicep though, feels like an immunization shot and leaves my arm sore all day. I’m sure it will get easier. It’s still taking one or two false starts before I manage to work up the nerve to stab myself though.

I’m not sure what I’m hoping for, with this. If it does something, then I’m tethered to $245 payments a month out of pocket. And eventually finding someone to stab me with a needle every day. If it doesn’t, then I’ll be out a lot of money with nothing but soiled cupcake band-aids and self inflicted puncture marks to show for it. I mean, of COURSE I’d like it to do something, even if it does mean weighing the pros and cons of perceived improvement vs. cost and hassle.

I guess I’m just saying, this disease complicates everything. At all times. For everyone. It really SHOULD come with a secretary and a kitten.

And someone to do the shots for me.

Bruising for a Cruising

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.