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.

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.

I’m still alive.

I have a lot to say, but not a lot of it is good, so I tend to not want to talk about it. Some days just suck. I’ve been in a state of..depression is not quite right, more like barely contained terrified panic, since the election. It just keeps getting worse. Thank you, everyone who voted Republican, for voting to repeal the Affordable Care Act, so I’m not entirely certain I’m going to have medical coverage when I’m forced to leave my job, because I have one hell of a pre-existing condition.

I had clinic recently, not much to report. Same decline, my hands are getting worse, swallowing and breathing are still normal.

My 23 year old cat is dying, and I feel like I want to, too, when I think about it. I’ve known him for more than half my life.

Christmas was…good and bad. I’ve had more falls lately.

That’s the baby update. There will be more; I have a lot to say and I promise to say it soon.

And then I was just…peeing.

I wanted the title to be something more…dramatic/appropriate/somber, but Jack asked if that could be the title of my autobiography and I said no, but it COULD be the title of this post. So. This is a glamorous post, sure to make you fall madly in love with me.

Wednesday my body totally betrayed me. I mean, with ALS it does that as a matter of course, at all times. There have been FAR more instances of yelling at my legs to Do The Thing (including one total failure and forced sit-down while trying to get in to a car lately), and opening string cheese is becoming less of a struggle and more of a “forget it, I’ll get sscissors”. And now that I’m posting this, I’m realizing how awkward my typing is now. But Wednesday there was an Incident.

It started with a fall. I was cleaning up puppy pads because my elderly cat can’t stop peeing everywhere, and my little brother was coming over to steam clean my carpet for me. Balancing while operating a machine is no longer possible. So while scooping up the wet pads, my knees buckled and I just sat down. Wrenched my ankle a bit, still hurts. I was upset, but not crushed or anything, it happens. Justin the Wonder Brother came over, steam cleaned the office carpets and most of the dining room, and then ran the Spot Bot when Parmesan sauntered in and peed on the still-damp clean carpet.

Asshole cat.

The rest of the night proceeded without incident until I was ready for bed. I went to the kitchen to rinse out my cup and get more juice (see, Dietician? I’m drinking juice instead of soda with my evening pills like I promised!) and as I’m standing there with the water running, I just..start peeing. And I can’t stop.

Now, with ALS I was told soooometimes there is some ‘bladder urgency’ because of muscle spasms. And I’ve definitely experienced that – just all of a sudden YOU GOTS TA GO. And there’s been a couple of times I almost didn’t make it. But this was the first time I just completely lost control. I couldn’t do anything about it but stand there, fervently wishing it would stop, just hold it, just wait, the bathroom is LITERALLY ten steps away, but there was nothing. Just grab the roll of paper towels and wait it out.

And when it was over, I cleaned up the mess, took a shower, and bawled like a broken thing. Because one of the silver linings in all of this was the solace I took in the fact that people with ALS generally maintain bowel and bladder control. If I have to be trapped in a meat shell, at least I don’t have to be a meat shell sitting in a wet diaper. But then this, and I don’t know what to think, and I hope it’s an isolated incident, but it was jarring and scary and I spent alllllllllllllll day yesterday in a terrific funk that I’ve still not entirely shaken.

And then yesterday my nephew fell asleep and peed on my couch so I guess my house is just kinda a pee zone. Hooray for that.

Sorry I’ve not got something more lighthearted for you today. Sometimes with ALS that’s how it is. But I’m still mobile, still alive, still working. Still mostly happy. Still loving all of you.

But ya ARE, Blanche! You ARE in that chair!

Me versus life, some days.

The cruelest trick about old age and ALS alike is that you don’t know you can’t do something anymore, until you try and your body says HAHAHAH NOPE. I have a full list of things in my head that I probably should not do anymore, and every so often I say to hell with it and try anyway, and then inevitably said thing is moved firmly to the NOPE category.

It’s hard to even complain about this stuff, too, because inevitably I will say something like, “Well I found out for sure that I can’t crawl under desks at work to recable power cords anymore, cause it’s too hard to get up off the floor” and I guarantee it will be answered with “what the hell are you doing crawling around on the floor in the first place! Find someone to help you!”

And it’s not that I don’t want to, it’s not even an “I can’t admit I need help” thing, it’s just that sometimes I feel the need to push my own limits and find out for definite certain if I can still do X. Just to see. To know if I should even bother to make the attempt, in an emergency.

To wit: twice now I have needed to move fast to save someone from harm. Over a year ago, my nephew was riding his little plastic car in my house, he knocked into a piece of furniture, and it began to topple over on to him. I couldn’t move fast enough to prevent it falling, and fortunately it wedged itself against the wall first so I had time. Last night, my cat got caught in the handle of a paper bag and startled herself, which sent her tearing around my apartment with a paper bag around her neck. This might have been funny except that she was so terrified she was peeing the whole time, and the last time I had a cat do this, he managed to rip off his entire claw in panic. I could not even get up to begin to get to her, this time, and by the time I was up, she’d wedged herself in the corner under my couch. I pulled most of the bag off of her, but didn’t get the reinforced cord strap before she dashed off again. I sat on the couch a moment, looking at the little trail of pee all over the place, and was really upset that if she’d been in actual danger of choking, she’d be dead by the time I got to her.

I cleaned up the aftermath of Idiot Pee Hundred, calmed her the hell down after I found her huddled under the covers at the foot of my bed, and resolved no more handled bags lying around on the floor, whether they’re fun toys or not. And now I know that if this happens again, there’s REALLY nothing I can do about it. Cause ALS is a bitch.

Sometimes silence seems safer.

Hey guys.

I’m doing that thing I do, which is to just not say anything if I’m having a bad time, but the point of this space is to document all of it. All of the awesome, all of the real life boring stuff, all of the hard parts, all of the ugly bits. And while I hate burdening people with my woes, it feels disingenuous to not talk about them. Here, of all places. Where I’ve purposely carved a space.

So here goes.

I had a bad weekend. It kicked off Friday, when about an hour before I was supposed to leave, I was asked to provide information in the aid of making people unhappy, basically a sort of “we have to take some toys away from our kids, which ones?” and I know that it’s just going to make things harder and everyone’s already stressed out. There is literally nothing I can do about this, and while realistically I know it’s not up to me to be the Morale Champ of our group, most of the time I feel like it is. So when things are stressful and I can’t fix it, I get unhappy. I have a very limited power, and I use that power beyond what I probably should to keep things together, but it’s worth it to me if I can help my coworkers feel less shitty about their jobs, because I like them.

I’ve been watching my job take things away and make things worse, and it’s the nature of business, I totally get that, but it is supremely frustrating to see things happen and know that it didn’t used to be like this. And so I fell in to a sort of employment despair, because I can’t see things getting any better at all. And in that dark space, I reverted back to the thought that I STILL don’t know the origin of, “one more year. You just have to put up with this for one more year.” And my brain seized on that and began planning my exit and I completely freaked out, both because massive life change and holy shit could I afford this, but also a sort of egotistical WHAT THE FUCK ARE THESE GUYS GOING TO DO WITHOUT ME. If I leave, the smallest, stupidest things will cease to be, things that don’t mean much but make their lives easier. Like a goddamned supply cabinet. We’re supposed to fill out a form on a web tool when we need office supplies, but I deemed that Way Too Fucking Stupid and spent a couple hundred bucks outfitting us with a goddamned supply cabinet so that you can get a fucking PEN when you need one instead of filling out a form and waiting for an intern to bring you one. If I leave, no one is going to maintain that cabinet.

It’s all stupid shit, but it was my first moment of “holy shit my absence is going to cause problems for someone when this disease takes over”. There’s an intellectual exercise in “what would happen if I leave” that I think everyone indulges in, and to a revengey sort of degree when it’s to do with stressful relationships or jobs and we imagine how screwed they’d be if we just walked out; but this was a for-real, scary, “I am going to be gone and my void is going to cause someone genuine discomfort.” And it hit me kind of hard. And my brain, of course, spun in to the nightmare world of trying to plan financial escapes and mentally going over all of the homework I still have to do and…..

My brain still in this space, I went to game night with some coworkers, and that was awesome! Except when filling out a character sheet, and my hands just..wouldn’t work. I have very good penmanship when I take the care to do so. I have been complimented on my ability to write legibly on white boards. I’ve noticed some decline there, but that night I could barely read my own writing. And it sat in my gut and festered, and when I got home that night, I probably should have allowed myself to cry it out, but I tried to medicate it away instead. And that led to a whole weekend of moping and sadness instead of one night of crying jag catharsis.

I laid in bed and my cats sat on me and it was hard to move them off of me, and that made me sad.

I thought about the special pen and ink I got in New Orleans to write my goodbye letters and now I’ve waited too long to do that, and that made me sad.

I looked around my kitchen and the drawers of baking things and knew I’d never bake to the level of professionalism I wanted, and that made me sad.

I read Facebook and found out that my friend with cancer is taking a downturn, and I was sad.

I watched a new series that people were excited about and I just couldn’t get into it, and that made me sad.

Fun plans were canceled for Sunday morning and I just didn’t have the energy to do something else instead, and that made me sad.

A friend with MS reached out to be in a bad space, and I provided what comfort I could, and her pain and anger made me sad.

My cat barfed in the hallway, and I just…couldn’t get up to deal with it that moment, and that inertia made me sad.

It’s lifting now, it’s still there around the edges, but it will fade, it always does. But I need to be honest with myself when I get sad, and I need to give myself permission to mourn, and I should probably find a space to talk about this with someone who gets it but isn’t my therapist, but all of the ALS forums are just so AWFUL, one part “MY LIFE IS THE TERRIBLEST AND YOU DON’T UNDERSTAND AND HERE IS MY LITANY OF WOES” competition and one part “We sadly announce that our member Whassisface died this morning.” Neither is helpful. Cause sometimes it ISN’T terriblest, and I’m going to die, but not today. And sometimes you just need to say “This sucks” and have someone say, “Yeah I know” who really DOES. And then lie and say it’s going to be okay, even though it isn’t.

I’m learning a lot of things. I’m learning to let myself be helped. I am training myself out of assuming that when I accept that help, it is a burden to someone else. I’m learning to let myself be weak. I’m learning to give myself permission to breathe in the in-between times without becoming a lazy depressed lump. And I’m learning to let myself grieve for myself. They’re all hard lessons, things I’ve trained myself out of over a lifetime of only ever being able to count on myself. It’s hard to be vulnerable. And it’s hard to put these things here, it’s so much easier when it’s energetic anger or joy.

But for now, I’m a bit depressed. It’s okay. It’s understandable. And allowed. But it’s hard to be. I want to be my usual bouncy optimistic self, and she’s still around here somewhere, but she’s taking her sweet time coming back around.

So, sorry it’s been so long. I’ve been quiet and I shouldn’t be.

I think of you a lot, though. And I miss you.

Dreaming of a Different Me

Dreams are such fickle things.

I’ve always dreamt strangely. I mean, really strangely. Everyone’s dreams are weird, but I’ve had several people tell me with impressed shakes of their heads that mine are especially so. “Dreams are weird, but YOU, man. YOU dream in another category.”

I learned how to fly by throwing myself at the ground and missing (ala Douglas Adams) but I was really crap at it and could only hover a foot or so off the ground, and it pissed me off that everyone I taught the trick to was so much better at it than I, and then was desperately trying to fly better when Lucille Ball was trying to kill me for some reason, and she was chasing me across the rooftops as I tried so hard to get it right…

It doesn’t help that I dream very vividly, I can draw you maps of places I’ve been, I can remember the tiniest details. And some of them seem…Significant, somehow. Some more important than others. They stay with me for days. I write those ones down, and I try to figure out what they mean, if anything. Sometimes dreams are just dreams. They’re nothing more than your brain’s way of sorting out events and memories and people, in the background, when you don’t have to try so hard. Your brain takes ideas out of the toybox and sees how they work together. Usually it’s a jumbled mess, mine usually have a storyline. ‘m usually a far more powerful person in my dreams, someone with psychic ability or superpower or something outstanding. Someone who can fix things. My brain takes important ideas out of the toybox gently, trying them out for size, seeing how they fit, and usually putting them away before they get dirty. If I dream about work, I know I’m under way too much stress. If I dream about past jobs, I know there’s still some resentments there that I probably ought to work out. Sometimes my dreams show me things that need to be addressed, things that I haven’t admitted to myself, things I haven’t allowed myself to think about.

…And sometimes my subconscious is just an asshole. “Hey, I know you haven’t thought about your dad in awhile, so here’s a dream where he shows up at work and you have to be polite to him because you’re at work and in public and he makes small talk with you and you really want to like him but you just can’t, and now he’s introducing himself to your boss who is saying maybe they can find something for him in your department, yay, father/daughter work day every day isn’t that great!” “oooh, hey remember that girl you crushed on, like, 20 years ago? Here’s a fun little what if scenario where she confesses it’s TOTALLY mutual and right in the middle of happy makeouts your ex husband shows up and sits down even though you are hinting STRONGLY that he should go away and he tells her terrible lies about you, so she leaves, crying. Wasn’t that fun?” “Storytime! Everyone you love is dead and everything is ashes and darkness and you’re all alone and you hear a cat crying in distress somewhere but you can’t find it! YAY!”

I’m usually not disabled, in my dreams. Not yet. It takes a bit of time for something to seep into my identity to the point that it’s who I am when I am dreaming. My tattoos took ages to show up. I There have been maybe a small handful of dreams so far that have ALS in them. Usually it’s a sideline thing. One time I almost got into a fight because they kicked my cane or something, one time I wanted to do something but I couldn’t, because I didn’t have the ability. It’s usually a minor thing, nothing existential or terrible, just…this shows up as a piece of me, subconsciously from time to time.

But last night, in my dream, I sat and watched my four year old nephew happily playing with toy cars on the floor of my apartment, and was suddenly overcome with a terrible grief, that this kid would never know me as anything but disabled. And I woke up crying.

My brain is a DICK.

Moved

Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.

He, She, Me.

He:

A few weeks ago, a few very short weeks, a friend posted something in her facebook along the lines of “our routine doctor appointment turned into a little bit more. He’s being admitted right now, but please don’t worry!”

…and I worried.

She’s like me. Bubbly, happy, all about best possible outcomes, optimism, and smiles. She’s a joy to be around. He’s a sardonic, sarcastic, clever man who used to be my boss. You know he’s awesome if he used to be the boss of me and we STILL talk. He’s snarky and hilarious. They’re both a pair of my favorite people. Still can’t believe they hooked up, much less got married, but they’re fucking perfect for each other and I’m really glad they did. I love them to pieces.

So when she, bubbly, optimistic She, didn’t SAY what had gone awry, I knew it wasn’t good. And then I was invited to a support/information group created in facebook, to keep in touch with what was happening and how we could all help. And then, scary words eventually saw the light of day. Cancer. Stage 4. Scant months to live. Maybe more if chemo works.

And just like that, their lives were over as they knew it. And just like that, the floor dropped away from all of us who knew and loved them.

I can’t even pretend to say I know what it’s like to be told you have a short and definite lifespan. I know how it was for me, how it continues to be, but I can’t even fathom what he’s going through. His time is so much shorter than mine, his notice so much more sudden. He has a wife. And while they’re publicly taking it with grace, no one knows what’s going on inside. Some aspects I can guess at; the panic of Time suddenly a companion, yelling at you about all the things you have to do before you go. The complete bafflement of, how did this happen. Is there something I could have done? But then there’s also the chemo – unlike my timeline, there’s a chance for an extended cut, but only if you can withstand it. And now they have to decide quality of life vs. quantity. And I know that mental argument very well.

There’s absolutely nothing I can do but stand by and love them, and listen, and hold space. And when they make decisions, honor them. Be there as much as they will allow me to be. And then let him go.

It’s the only thing within my power.

She

I wrote about her awhile ago. She was suffering from bulbar onset ALS, and she gave me the chance to figure out and to talk about how I feel about assisted suicide. And she gave me the courage to tell all of you, and start that difficult conversation. It’s a really hard thing, to tell everyone that you are probably going to take your own life and they’re going to have to forgive and be okay with it. She did it with perfect grace.

She had been fighting the Boss Fight of ALS for awhile. Her decline was fast. I only knew her through facebook posts, and it seemed like daily there was another struggle, another development. But she faced it with so much fucking GRACE, and smiles, and gratitude. Her posts weren’t about how she’d never live to see her son grow up, they were about the daily joy she found in his company and the treasure trove of memories she was building for him. Her posts weren’t about her medical suffering, they were about the gratitude for the people who helped her through it all. Look for the rainbows, she says constantly.

April 4th, she had fought enough. She left a goodbye, and a video for her son, and the last words, “Enjoy. I have.”

And then she let go. And so I, too, let her go.

Me:

I’m losing strength in my hands.

I’ve been noticing maybe a month or two now, but I’ve been in complete and total denial. The mailbox lock has ALWAYS been hard, it’s just a bit more difficult to turn the key; must have frozen or something. The lid to the cup is way more difficult to pry off because it’s new. Cutting a piece of steak cramps up my hands, but hey, it’s just cramps. I had AGES before my foot strength was lost after the cramps started, right? My hands are shaking while holding my laptop because I’m just tired. The word of the day and things that I write up on my whiteboard every day just SEEM a little shakier. But I’m sure it’s nothing. Right?

Friday, April 4th, I fell. For no reason. It was the first time that happened; I wasn’t tripping on anything or trying to maneuver, I just…fell. And wrenched my ankle. And felt very sorry for myself and frustrated. And so I told Dr. Goslin this, on Thursday during my appointment. And she confirmed I’m losing strength in my hips.

…And I said I think I might be losing strength in my hands. She did the usual tests. And proved that I am.

I was absolutely right in that this? This is a trigger. This is panic and terror and the beginning of the end. And this makes everything so much worse. My timelines have shifted, and things I thought I had some time to do, I suddenly don’t. I have to write the letters while my handwriting is still stable. I have to do all the things I can’t, soon. And I’m freaking the fuck out. Because I don’t know what else to do but scream.

She asked if I’d like to borrow a motorized wheelchair to see how it works out. And internally I flipped the fuck out because I am NOT ready for that. No way no how. But outwardly I politely declined and said I’d like to wait awhile before going down that road. She agreed that I have a lot more time of mobility left, so there’s no rush. But it’s coming. Danielle suggested one of those old-people jar opening assist things. And I panicked a little but kept it in. I said maybe a walker, but not a wheelchair. Not yet. But my hands are going to have to be accommodated for.

After the appointment we went to the store to get some meds and some air fresheners for the empty rooms in my house that I’m clearing out for sale. And I couldn’t get the fucking tops of them off. I had to use my teeth. I still have dexterity, but my strength is going. And so, too, are all of the things I thought I could do to keep the loss of mobility tolerable. For now I can still type. I can still play video games. But I thought I had so much more time before I had to think about the end of those things. To a time when I can’t use chopsticks, to when I can’t pull myself out of bed, to when I can’t dress myself.

And it scares the motherfucking SHIT out of me.

I’ll get accustomed to the changes as they come. I’ll persevere. But I feel like this is kind of when I really start to die. No mobility? Whatever, that’s okay. Seriously. It sucks, but a wheelchair isn’t that bad. This is a hardship, but not the end. When I am no longer able to draw stupid pictures, no longer able to frost a cupcake, no longer able to chat, no longer able to launch Skyrim…that is the death of me. When I am no longer able to even fucking pet my cats. That begins the days of the useless shell that I become. I wonder if I’ll want to go get the prescription the day I drop something for no reason. I won’t use it yet, but I wonder if that’s going to be the preflight check. When I will start thinking seriously about the endgame.

And I don’t know if I’ll have the strength to let go, when all I feel like doing is trying to hold on.

And I’m really, really scared.

Bad Days

I’m having a bad day.

Some days are fine, some days are normal, and some days it all just fucking gets to me.

I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..

FUCK.

And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.

No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.

And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.

I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.

Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.

I hate bad days.

Final Days in the Zombie Tramp House

Things are coming together. I have a schedule. I should be able to put the house up on the market in about 2 weeks. I have nearly everything upstairs packed up that doesn’t need to go with me to the transition apartment. I have just the kitchen stuff to go through now, and squirrel away what I don’t need. From here, I’ll shift everything into the garage and eventually into storage, and then ‘stage’ my house as best as I can. Primarily this includes turning the ‘den’ back into a den and not an extension of my kitchen, the way it has been.

It’s been…an interesting exercise. To say the least. There’s the melancholy duty of going through my things with a very different moving mindset. You know, typically there’s the “have I used this in the last year? Do I really need this?” sorting, but mine’s had an additional “Am I ever going to use this again, and do I want to keep it anyway for sentimental purposes and have my family have to throw it away later?” There’s a fine walking line between “center circle, bitches! Keep ALL THE THINGS! It’s not my problem to deal with it later, I’ll be DEAD!” and “my death’s hard enough business for them, I should make it easier as much as I can”. I don’t want to sacrifice my current enjoyment of life in the interest of making things easier when I’m gone. But at the expense of a little time now, I can save grief later. It’s a hard business, going through someone’s things when they’re gone. So much crap, so many things important to me that are meaningless to anyone else. Do I let them go now? Or do I keep them, even though I know I’ll never look at them again and in all probability they’ll stay here in this box until someone throws them away.

There’s a sort of freedom that comes with this, too, a relief of obligation. I don’t have to hold on to this anymore. There’s no reason. I can give this up, it’s okay.

But the kitchen.

I had such plans, and dreams, and schemes. A professional workbench, a partitioned off section for chocolatiering, baker’s racks for projects..

and now I can’t. Because I know damned WELL I’m never going to be able to do that stuff. I can still bake, for now, and make candy, but nowhere near on the scale I wanted to. So in going through my kitchen gear, there’s the extra bitter edge to it. “Am I going to use this ever again?” “NO. Because I CAN’T. And that is SUPER SHITTY.” It’s the second major physical concession I’ve had to make, the first being the sale of the house in the first place. But I know there’s no point to outfitting my new kitchen like a professional workspace, because I’ll never be able to use it to its capacity. And that sucks.

BUT!

It also means I am no longer obligated to bring the cake.

“Oh we don’t need a Safeway cake or anything, Vashti can make one.”

“Um. I’m kinda busy that weekend, though. I’m not sure I’ll have the time.”

“Well, I guess we can just grab one from Costco.”

“FUCK THAT I WILL MAKE YOU A CAKE. Such a cake you will never have SEEN. Because FUCK Costco cake.”

It also means no more random experiments like the Meatcake, at least not as frequently as I did. That might be better for humanity. No one should wield that kind of power.

So this weekend I hope to finish packing up the kitchen unneededs. Over this coming week I’ll finish up my office and everything upstairs. Next weekend staging. And then…put the house on the market and see what happens. I don’t expect to have problems selling. Hopefully I won’t have problems finding a temporary apartment. Or a new home.

Right now, though, I’d like to find a nap.

Honk-shuuuuuuus

Here’s something I CAN post about! The sleep study!

It went…yeah wow. OK. So in the morning, the nurse came in at 6:30, I was already sitting up and waiting for her to come in and turn on the lights. “Good morning!” I said.

She looked at me like I was a little crazy. “I dunno….is it? You had kiiiiiind of a rough night there.”

By which she meant I did not sleep at all.

I got there at 7 like I was told, and waited for the nurse to get herself settled and everything checked in, just chilled and read my book. She came in and hooked me up, and I noticed she did it differently than the previous time – there was no drawing all over my head with a blue wax crayon this time. We fitted me with a CPAP machine, and I was given time alone to adjust to breathing through two different kinds of masks to see which one was easier. I was pretty dang tired so we called it around 10, and I crawled into bed. We did the same equipment checks that made me feel just as ridiculous as before. You are lying there in the dark and you’re told to look up and down ten times. Now left to right. Now blink fast ten times. Now close your eyes, three deeeeeep breaths. Wiggle your left foot. Wiggle your right. (I sucked at those). Etc.

And then she bade me goodnight.

And then sleep completely failed to happen. The mask was not uncomfortable or anything, I just could not get to sleep and stay there. I woke up at one point with flutters – something I’ve had happen for years and years, it feels like a low current of electricity just under my skin next to my left shoulder blade. It’s not painful at all, just uncomfortable and they get worse the more I get frustrated because I can’t sleep. Usually I get up and take kava kava or something, but I didn’t have that option during the sleep study. I recognize them now as a weird sort of panic attack, but there was nothing I could do but just lay there, frustrated, not sleeping, until they went away. Which was….awhile. And then I woke up again later, just…awake. No reason. I think I slept like an hour and a half at a time. Twice.

She said to not get discouraged, people often have a rough time their first try, and it will be easier once I get it home. She tried turning up the machine, which made things worse, she said, and she has lots of notes for my doctor.

I’ll see the pulmonologist on the 23rd.

As always, I’ll keep you posted.

Gravity: It’s the Law.

I want this out here but I’m not going to say much about it because I’m trying really hard to not let it get to me so much so I’ll be quick.

I had a fall tonight. My first proper one. I was disembarking from an Amtrak train, stepping down from the train to the little foot step they have, and my leg just totally gave the fuck up and I fell. There was just nothing to catch myself on. I’m not really hurt, but there will be bruises and scrapes. Mostly I was humiliated. I was sitting on the ground trying to figure out how the hell to get back up because all I had for support was a stupid yellow footstool while total strangers were bending over me, asking am I okay, do I need help up?

“I’m fine, just really embarrassed,” I told a really concerned woman. She assured me there was nothing to be embarrassed about.

There was an Amtrak employee with the club car right there, apparently he’d been waiting for me because the conductor had told him there was a woman with a cane. The conductor had noticed me, because the train came on the opposite track that the station signage said, and everyone had to run to the opposite platform. And so I held up the whole train while I crossed under the platform and back up to the other side, and the only doors they had open were at the front, so it took me forever to hurry over. He knew damn well there was a woman with a cane on board. And that effort is probably why my legs didn’t quite have the strength to manage – I used up my fucking spoons just getting ON the damned thing, so when I got off, my leg just said “nope” and folded under me.

The driver helped me up, basically by having me wrap my arms around his neck and hauling me up. He asked a million times if I was okay. I repeated that I was, just embarrassed, and he also told me it was nothing to be embarrassed by. He just wishes he’d seen me before I tried to step down. “I’ve see perfectly healthy people WITHOUT canes fall while climbing down.” He gave me a ride through the station and out to the front, where my little brother Justin was waiting for me.

I knew my first fall would really suck, and it does, and I’m not freaking out but it’s really frustrating and sad because I know this is just the beginning. And I hate it.

The weekend was otherwise perfect, and I hate that it ended on this note. But it didn’t ruin anything by any means, and I’m going to end this before I dwell on it too much and it DOES wind up ruining it.

Oh yes.

Since I’m keeping record. I had another sorta-fall yesterday. I was just having a weak day, the walk to the bus took me a half hour and I was DRENCHED in sweat by the time I got there. The bus came at 12:18 and I did not stop sweating until like….1:30. It was a bit muggy, raining on and off, but man. It took SO MUCH EFFORT.

The bus did the kneeling thing, lowering to what would be curb level – but it was still a high step because that stop is on the street. I pulled myself up on the handrails and I just didn’t have the strength to make it up and I wound up kneeling myself. It took me a second to haul myself to my feet, and while I was paying my fare and showing the Honored Citizen ID that proved I qualified for the low fare, I thought, “Well I just kinda negated the need to show him the ID, he just got a demonstration.”

Another slight bruise on my knee, another slight bruise on my ego.

Concessions

I have an awesome bed. It’s a heavy black wooden frame, vaguely Asian looking, beautiful, and you could lose yourself in it. My boyfriend and I bought it together, had it custom made for us, and it was a California King sized futon mattress. You could sleep three in it; he was an active sleeper, so the expanse of it allowed for him to not bother me with activity when we slept. The two of us had our own universe sized bed to ourselves and three cats. We eventually got tired of the futon and got a pillowtop mattress instead. Being a pillowtop mattress on a futon frame made the thing come up to my waist, I had to hop up a bit to get in to it. The relationship ended, I kept the bed. It was the one thing I insisted on, though he gracefully capitulated without a fight over it.

I really fucking love this bed.

I had to make some small concessions for my elderly cat, when he became unable to climb in; I put a little set of stairs at the foot, up to some storage bins covered in a blanket. The bins became a bench for me to sit at and put my boots on in the morning. But lately it was becoming a bit of a chore for me to climb in, anymore. I found that I was bracing myself against the wall next to the bed and kind of pushing myself in, or vaulting up.

So today, I asked my handyman brother to cut the bed legs down. He took about seven inches off. It was a hell of an effort, because I had to break it all down and the headboard and footboard are each one solid wood piece, the headboard weighs a ton. I disassembled it, he took the pieces outside, and cut all but an inch off of the legs.

OH MY GOD so much easier to get in to bed now. I can just sit down on the bed and not have to climb up in to it. I’m so grateful to him for having done this for me today. The cats are a bit pissed off, because they can’t go under the bed anymore, there’s only an inch clearance. Which is AWESOME for me, because that means they can’t run under there to puke anymore. It was…pretty gross under there after I’d disassembled it. Took me the better part of an hour to clean my floor.

I’m feeling a little maudlin about the whole thing, if I’m being quite honest. This is the first concession I’ve had to make for myself. The first home arrangement, the first furniture change to allow for easier access with my diminished ability. And it sucks that it had to happen to my glorious bed. Someday I’ll need help getting in and out of this thing, when my arms no longer have the strength to lift me up. That day is far away, but the day I’ve first needed to make a change is today. The bins at the end of the bed, originally for convenience, will be mandatory someday too. This is the first in a long line of things I’ll have to change because I just don’t have the strength to do it another way anymore.

The sadness I feel about having to butcher a beautiful piece of furniture, though, is diminished by my joy at it being much easier for me to get IN to the fucking thing.

Home Owned

For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.

Almost.

I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.

FUCK.

But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!

Just..FUCK!

I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.

Breaking the News.

There’s not a lot of good in a diagnosis of ALS.  Probably there’s NO good in it, except possibly finding out the real character of the people around you.  Which does not always amount to a good thing.  You learn things you didn’t want to know.  Sometimes people show unexpected grace, sometimes they display amazingly cold-hearted selfishness.  And sometimes you find out that someone you didn’t pay much attention to is actually an amazing person, and now you don’t really have a lot of time to get to know them properly.

I’m saying it sucks.

I’m facing a lot of challenges.  The worst  is yet to come, I’m certain; I still have most of my functionality, I have a good job, everyone’s being really supportive.  No matter what I may be dealing with right now, it will all pale in comparison to the day I’m finally confined for good in to a chair.  When I need help to get dressed.  When I can’t eat.  When I eventually stop breathing and die.

But for now?  The worst part, EASILY the worst part, is having to tell people what’s happening.

I’m a stupidly empathetic person.  I don’t know how to simply be sympathetic.  “This must suck for you” may come out of my mouth, but my heart is breaking for you.  I don’t know how to not do that.  I don’t know how to just observe someone’s pain or anger or fear.  I’ve never, ever been good at this.  I have always reacted more viscerally to other people’s drama than my own.  I will let myself be stepped all over, but God help you if you fuck with a friend of mine.  There is no such thing as casual observation in my world.  All of the stupid sappy videos on the internet – ALL OF THEM – hit me square in the feels.  I can’t watch movies that contain a lot of suffering, they freak me out.

I don’t know how to tell someone I’m going to die without it destroying me on their behalf.

It’s really fucking stupid.  I mean – it’s happening to ME.  This is MY life cut short, but I find myself apologizing profusely when people find out, and I’m very quick to reassure them that I’m okay.  Even  though I’m not.

I told a coworker today.

He got on the elevator with me this morning, just the two of us, up three floors.  This guy and I are not close coworkers, he’s a total asshole, but I kind of respect him for that.  He’s blunt.  Very straight forward.  When I had a problem with another coworker, he was one of my staunchest allies because he calls bullshit when he sees it.  I admire his ability to stand up for himself like that.

He wished me a good morning, and asked if I’d ever found a solution to the back/hip/knee thing that has been plaguing me.

“Uh.  Yes, actually,” I told him.  “It’s uh…ALS. Lou Gehrig’s.”

And I watched the reality hit him and take the light out of his eyes for a split second.  He’s probably the first person I’ve told that immediately understood exactly what this meant.  “Oh my god, I’m so sorry.”

I smiled at him, “Thank you.  I’m doing okay, though.  I’m going to keep working as long as I can.  I’ve got lots of time.”

He asked what the prognosis was.

“Typically three to five years,” I said, “but my progression is really, really slow.  I’ve got time.”

It felt like I was stabbing him.  “I’m so sorry.”

And because he was shaken, and because this was terrible news to him, I felt like I had to cheer him up.  “I’m doing okay though!  I’m happy to have an answer!  I’m doing fine!”

He put his mouth in a smile shape.

“…I’m sorry for bumming you out,” I told him quietly.

“NO,” he said quickly, “no no no.  You didn’t.  I’m sorry this happened.”  His mind was elsewhere.

He and I didn’t say much else as we got off the elevators and walked to our cubes.  I sat here at my desk awhile, my brain going a million miles an hour, wondering how the hell I could have said that different, how do I frame that so that it’s not ….

…so that it’s not exactly what it is, which is a coworker/friend/family member/acquaintance telling you “I have a terminal disease”.

It is likely only so touchy and raw right now because the diagnosis is still so new to me.  I can’t expect someone to blithely accept something like this when *I* haven’t even dealt with it yet.  And there’s no real comfort I can supply.  “It’s okay” is a lie.  It isn’t.  And I’m not yet okay with it not being okay.

I’m saying it sucks.

I don’t have the tools in my Cabinet of Social Awkwardness to deal with this properly.  If I’m going to be so goddamned empathetic, I feel like I should at least ALSO be intuitive enough to know how to tell people something like this in a way that’s not going to be shitty.

“Do you like baseball?”

“Hey, heard of Stephen Hawking?  Turns out we have a lot in common!”

“Good news!  It’s NOT cancer!”

A friend with a sense of humor just as fucked up as mine suggested, “Oh, it’s not cancer!  And it’s not heavy metal poisoning!  They said that I don’t have to worry about either of those; because those take YEARS to kill you!”

…yeah I don’t think that’d go over so well.

For me?  I prefer to be told straight up, with a matter of fact idea of what to expect.  It’s how I was told of my diagnosis to begin with, and I couldn’t have asked for better.  But not everyone can deal with that.  This is why I tried to tell people all along that something like this was a possibility – I’d rather have that be mulling around in the back of their head for awhile, and then confirm their worst fear, than tell them “I have ALS, I’ve got a handful of years to live” and have them freak the fuck out all over me.  Because THAT is what makes me freak out.  Not my own diagnosis, but the way people react to it.

THAT, so far, has been the hardest part.

I’m sure in a year’s time I’ll look back on this and laugh myself sick that THIS is what I was agonizing over.

But for now, I am hurting those I love and I’m powerless to stop it.

And I hate it.

I’m saying it sucks.