Category: Checking In

Checking Up With DocGos!

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Man, I can’t even tell you how busy – STUPID busy – I’ve been. Sorry. I should have posted this one ages ago (last week) because it’s a quick check in.

I had another check-in with Doctor Goslin last Wednesday. It was a strength check, a meds adjustment check, and a general well-being lookover. I’d messaged her earlier with some concerns about my energy levels and OH MY GOD that became a whole thing because my insurance decided to be awful.

So, my energy levels have been in the toilet. Seriously in the toilet. Friday nights I was going to bed around 11, my usual bedtime. And sleeping until 2 in the afternoon. And then taking a nap at 5 until 8. And then back to bed at midnight. During the six hours I was awake, I accomplished nothing. Not even ‘played a video game’ “nothing”, just…stared at the internet and/or watched tv shows I’ve seen a million times and know by heart “nothing”. I like sleep, don’t get me wrong, and I’ve historically spent entire weekends sleeping a whooooole lot. But it’s not something I’m doing for enjoyment anymore. I sleep because I’m THAT freakin’ tired. Unfortunately I’m not really in a position to be able to waste time.

So as I posted before, she called me that evening and we set things up to get me a scrip for adderall. It’s a controlled substance – because let’s be honest, it’s legal meth – so I had to wait for a physical prescription could be mailed to me. We also started me on a low dose of Celexa to supplement the Wellbutrin I’m already taking for depression, because Celexa has better anti-anxiety properties and my fatigue COULD be caused or at least exasperated by depression. I got the scrip, took it in to the local Frederick Meyers..

…and was told Cigna wouldn’t pay for the adderall because they don’t approve of its use in people over 19 years old.

Thus began the Dance of the Morons, where we appealed, they said no, Dr. Goslin tried to clever her way around the restriction, and was shut down again because they do not cover adderall as a treatment for fatigue in ALS patients. But they WILL cover it for MS patients.

MS IS A FREAKIN SISTER DISEASE YOU JERKS. THEY ARE VERY SIMILAR.

Only mine is a guaranteed death sentence, but whatever.

SO they said no every possible way they could in response to every single way we tried to weasel through it. In defeat, during our checkup appointment I was given samples (a lot of samples) of a drug called Nuvigil, which is for sleep apnea, narcolepsy, and shift work disorder.

…I didn’t know there was such a thing as Shift Work Disorder either.

It’s diagnosed for people who work widely varied shifts, like nurses, to stay awake when they are working crappy hours. Just like it says on the tin. Anyway. Yeah. She gave me samples of that. We also doubled my Celexa dose, to be slowly ramped up over two weeks.

We also checked my strength, and she saw no change at all since I saw her two months ago. This is AWESOME. Super slow progression FTW. As she put it, she’d very likely be seeing me for years and years to come. Yayyyyyyy <3 During the visit we also chatted a little bit about assisted suicide, but that...that is its own post. That's been brought up a lot lately, and I want to talk about that. Later though. Later. So in the end of the appointment, she was really happy about how well I'm maintaining my strength, and she saw no reason to see me for another three months (but I'm welcome to email her with questions or concerns of course). I had been scheduled for a clinic day soon, but she canceled that because I don't need it. I started the Nuvigil the next day, and it seemed like I was a little more awake. Friday, a little better. Saurday? I slept until 9AM, screwed around on the internet for awhile, wrote that last emotionally draining post, and then took a nap from noon to two - because I WANTED to. And then I went through my closet and got rid of two bags of clothes, cleaned all the catboxes, tidied my room, went through some things in my office....SUPER productive day. I felt pretty normal. So, Nuvigil is awesome. I'm not sure what we're going to do about that in the long run. We'll figure things out. She always does. So that's the haps, man. I'm doing good. Meds are helping me retain a normal level of activity, my strength remains unchanged, and life is pretty freakin' great.

Updates Needed! ZoMG

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Hello babies! I owe you storytime for a LOT of things. I will get to them this weekend! Probably!

I need to tell you about:

The walk!

Passport Drama!

Neuro Checkup!

New Meds!

Elder Care Attorney Appointment!

Probably Some Other Stuff!

My job has been absolutely CRAY CRAY so I haven’t even had time at lunch to update this. Bleh! I am still here though! And I love you!

Falling with Grace

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I went out to get the mail yesterday after work, and waited for traffic to cross the street. My street’s the only one in the neighborhood that goes all the way through from one major road to another, so it’s busy. Coast is clear, I step off the curb, but here comes a truck. He’s waiting for me, how nice! But the other side is not clear, and it looks like there’s a few cars, so I don’t want the truck to wait for no reason. I think that I will signal to the truck driver that I intend to wait for traffic by stepping back on to the curb.

Except that doesn’t go so well.

Instead, I don’t have the strength in my legs to make that step back, and so I wind up on my ass on the curb in some very crunchy grass. My neighbors don’t water their lawn any more than I do. I’m not hurt at all, just embarrassed, and I laugh nervously, shake my head, and flash the truck driver a thumbs up. Like, hooray for that! ha ha ha I just fell that’s so funny. But I’m okay! He laughs, and drives away.

I wait for traffic to clear to try to stand up. It takes me a try or two.

And I’m not going to lie, when I got back in to the house, I cried. And felt an irrational anger at the truck driver, even though I know if he had understood why I just fell, he wouldn’t think it was funny at all. And I was laughing, too, and he has no idea that it’s a nervous habit I’ve had all my life. When I’m angry, I laugh, and then I cry. When I’m hurt, I laugh. When I’m being insulted, I smile. Until I’m alone. And then I cry. But still I’m a little angry that he didn’t understand it wasn’t my fault I fell. It wasn’t clumsiness. It wasn’t. fucking. funny.

This is the fourth fall. It’s not the worst. The worst one, thankfully, didn’t have any witnesses and was just scraped up palms. It was the day of my diagnosis and my mind was elsewhere so it’s hardly surprising I didn’t quite make the curb. They’ve all been the result of trying to step up and not quite making it, and then not having the strength to correct my balance. So I just kind of sit down. Or kneel. I’ve never been actually hurt, they’re gentle falls.

But they’re a precursor of things to come. A sign that things are going to get worse. Hateful little reminders that my time on my own two feet is limited. The fall itself is frustrating, of course, and humiliating, but they echo of disability and impending loss. There’s no outward injury, just a cringing inside and fear and future loss.

There will be more. Worse ones, too, I wager. And in public, I’ll fall with grace and good humor, and joke about it, and feel like dying just a little, and never let on that I’m not actually okay.

“Nothing bruised but my ego,” I joke. But that bruise hurts like hell.

Difficulty Level: Beginner

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There are things that are more difficult to do now. This is hardly a surprise, it’s a lovely happenstance when your motor neurons burn themselves out and your muscles atrophy. But there are some things it never would have occurred to me would be harder.

Like putting my shoes on. I have no strength in my toes at all, so when I put shoes on, they just kinda curl under when I shove them in. I can’t flex them so set it right, so I have to push on the tops and sides of my shoes once they’re on to get my toes to try to uncurl so I’m not walking on them.

Scrubbing floors is harder, not necessarily because my energy pool is lower, but because I have no muscles in my lower legs anymore so kneeling on the wooden floors hurts. There’s no real padding, so it’s like I’m knocking my bones right on the wood. And then once I’m done with that section of floor, getting up to shift a few feet away is hard because I don’t have the strength to push myself up from a squat, so I crawl on my knees, knock knock knock, and ow. Sucks.

Same for standing a long time. It’s not that my legs don’t have the strength to hold me up as much as it’s the lack of muscles in my feet so I have no padding to protect me. It’s like standing on concrete, even in spongy shoes. After about an hour or so, it’s not that I’m muscle fatigued from walking around, I have to stop because my freakin’ FEET hurt.

I’m also finding it hard to stop short, when walking. My toes have no strength to balance me out. So when I walk up to the elevators, I have to make a lot of little cha-cha steps when I stop in order to not fall over. It’s easier now with the cane, but it’s still weird.

Maneuvering in the hallways at Intel has always been hard. There are a TON of very…..self-involved engineers here. There are the ones looking at their phones walking on a direct collision course with you. There are the ones gathering in clusters right around the corner so you crash into them when you turn. There are the groups of them walking three people across down the halls, leaving you LITERALLY no way to walk around them, so you wind up just standing there, waiting for them to either physically crash into you, or notice you and pull the cluster a little tighter to squeeze by you as you’re hugging the wall.

Walking through work now is like dancing in a minefield. I have to be vigilant at all times because if I get bumped into, I’m going down. I can’t quickly sidestep someone turning the corner too sharply. In the cafe, when someone stops short, I can’t avoid crashing in to them. So I advance cautiously, looking for potential problems, and keep a two person length in front of me at all times. I have become the granny driver of walking in the cafe.

I didn’t foresee any of this. When they tell you that you’re going to lose strength in your legs, you think “walking is going to be harder, going up stairs will be nearly impossible.” You don’t think “I can’t squat down to tie my shoes ever again”. Or any of the things above. It’s a bizarre safari of self discovery, and it’s not even upsetting, not really, not OH WHY ME I CAN’T KNEEL ON THE FLOORS TO SCRUB UP CAT PUKE ANYMORE”, it’s just been, “Huh. Okay. So that doesn’t work anymore.” and working out what to do instead.

Milk crates. Milk crates are what you do instead. Milk crates are my friend. You just park your butt on it, and lean over for scrubbing the floor, or sifting the litterbox, or tying your boots. Milk crates are awesome. They used to be book shelves, then moving boxes, now they’re butt support. Universal problem solvers.

Eventually I won’t have to worry about any of this stuff. I’ll be in a chair, and I’ll just run over the engineers who get in my way. There won’t be a balancing act when stopping short, just brakes. I’ll be sitting when doing the cooking. And the floors…well, someone else will probably have to deal with that. Problem solved for ME, either way. But it’s interesting, finding out these little things that no longer work.

Yep….

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..Still liking the Ice Bucket Challenge videos, haters.

Suck it.

I’ve been SERIOUSLY overwhelmed at the amount of friends of mine who’ve done one and given me a shout-out. And most of them mention the Walk team.

OH MY GOD THE WALK TEAM.

SO GUYS. GUYS.

Okay. When I signed up for the Walk to Defeat ALS, I didn’t expect much, really. I thought a few friends of mine would join me, maybe kick in a few bucks. When you set up your account, they suggest you shoot for a target of $210. I knocked that down to $100, figuring it would be far more realistic. And instead of the automatic team goal of $2k, I knocked it down to 1. This was a lofty, pie-in-the-sky ideal though, I never expected to actually reach it. I’d have been happy with reaching $300 across my whole team of maybe 8 individuals.

I have 26 people in my posse. And we’ve raised $5 short of *three thousand freakin’ dollars*.

ZOMG.

As I said in the last post, there are dark days. But they are so few and far between, and a lot – A LOT – of that is because of these things. I am CONSTANTLY shown that there are people who love me, people who are willing to help, people who want to support me somehow. It’s amazing, and I am humbled, and so so fucking grateful. More than I could POSSIBLY hope to convey.

I have a posse. And they have my back.

And so I can live on.

Happy.

Most Days

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It seems like every time I post/say/THINK anything remotely depressed-sounding, I am blasted to smithereens by very well-meaning people giving me encouragement and light. Like, I have to be cheered up at all costs. But I don’t need it,usually. And when I do need it, I will say so. Lest you guys get some idea of me drowning in my own misery as I die slowly, let me explain something.

Most days, I’m good. Great, even. Most days I don’t even THINK about my disease, I don’t think about the ugly implications of my staggered walk. And when I think of the future on those days, it’s not a bad place to be. I’m a naturally upbeat person, and it’s easy to be in good cheer. I take the greatest of pleasures in the stupidest things, and that keeps me going. Life is good, everything’s great.

Some days, I am aware of my illness. Maybe it’s particularly hard to walk that day. Maybe I’m suffering from an overdraft of spoons from the day before. Maybe I have a doctor appointment that day. For whatever reason, I am aware of my disease and the limitations it puts on me. But on those days, even when I am aware of this disease cutting my life short as I breathe, I’m still good. My disease is present but it’s not really a problem. I have a realistic idea of what’s coming, but I have security in the knowledge that I have the best team in the world at my back. I can handle this. I can handle everything. Life is okay. Everything’s good.

Every now and again, there’s a moment of panic. It’s usually on the tail end of circumstances conspiring against me, for whatever reasons. My defenses are low. I am a bit “squishy”, as I call it. Just ..sensitive and prone to cry and things seem a little dark, maybe. And then there’s that moment it turns, and everything collapses in on itself and I am crushed under the weight of it all. These days are very rare. But they are inevitable. I’ve got a terminal fucking disease. If I didn’t sink under the weight of how badly I’m being fucked over occasionally, it’s likely I’m just in denial.

Things have been conspiring. I lost my 19 year old cat and just turned in his unused pain medication to my vet, so that someone else who can’t afford it can give their pet some pain relief. I’ve been GO GO GO the last few days and I’m exhausted. There was a screwup with the post office which made them think my house was vacant and that really, really fucked with me because it was a reminder that I don’t get to stay here. The motherfucking shingles. NOTHING seems good when you’re in pain. I’m kind of freaking out about money; I’m about a grand in to my credit card, with a $3k property tax bill going to come due at the end of the year and then January resets my $2k deductible and I’m supposed to go to Europe and I’ve got nothing to spend and…yeah. I feel like I’m financially drowning.

And then this video was shown to me this morning:

It’s…really fucking powerful. Stay past the bikini babe. It’s worth your time. And it left me really raw. And I talked to my brother about putting in a hand rail because I’m beginning to need both hands to haul myself up the stairs, and it hurt. I thought about having to throw all of my things in boxes and maybe not having the strength to unpack them by the time I bought a new place and I panicked.

Tonight I’m tired. And in pain. And lonely. And afraid. And worried. And weak. And angry. And depressed. And really fucking unsure where it all goes from here. And tonight I know there’s not a goddamned thing I can do about any of it.

Tomorrow I will be fine, but I am having a bad night.

And nothing will fix this. No amount of being told it’s going to be alright will MAKE it alright. And nothing will help except to let myself cry.

And so I lock myself away from the world, and I cry.

INTERNET uses ICE BUCKET CHALLENGE! It’s SUPER EFFECTIVE!

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(edit: Oh my dear, precious, sweet sensitive children. How ANGRY you all are. I didn’t write this in perfect seriousness, which I would HOPE was obvious (hyperbole is fun and mental! It’s fundamental!) but I also don’t expect to actually convert anyone to the cause with it. I don’t use gentle, persuasive tones in this piece because I’m not trying to be gentle or persuasive. It’s not a rally, it’s a rant.)

Seriously, world, why all the hate?

I realize that humans are hateful, spiteful creatures and will find a reason to hate on even the most innocuous things.

Awww a sweet boy-meets-girl love story! WHERE IS THE REPRESENTATION FOR THE GAY COMMUNITY!? Uh. Okay. Here’s a sweet boy-meets-boy love story then! WHY ARE YOU SO GENDER BINARIST? HUH? Okay…here’s a ..person meets person love story? WHERE ARE THE PEOPLE OF COLOR AND THE DIFFERENTLY ABLED CHARACTERS? Well I only wrote this with two people total… OH SO YOU ARE BIASED AGAINST POLYAMORY HUH? AND WHAT ABOUT THE ASEXUALS? THIS IS VERY OFFENSIVE.

Seriously, people, calm yo tits.

YOU ARE ASSUMING I AM FEMALE. I AM OFFENDED.

No I’m assuming you’re a bitch.

THAT IS INCREDIBLY SEXIST AND YOUR BLOG IS PROBLEMATIC.

Well my LIFE is problematic, fucker, so what. But while you’re here and angry, my little social justice warrior, let me explain the difference between ACTIVISM and SLACKTIVISM. And why the Ice Bucket Challenge is both, and why that’s okay. (tl;dr – IT IS OKAY BECAUSE IT IS FUCKING EFFECTIVE)

I have a deep-seated hatred for a lot of ‘awareness’ campaigns. I feel you. I cringe when I see pink ribbon bullshit on everything (SERIOUSLY SUSAN G. KOMEN IS AWFUL AND YOU SHOULD NOT GIVE THEM YOUR MONEY). I am actually ANGRY when those stupid games inevitably make their way around on Facebook again, where some girl sends a facebook message to all the other girls on her friends list asking them to post their bra color, or their handbag color, or shoe size, and not explain what that is or why. Let me run this by you:

22!

18!

10!

7!

293495!

…Are you now aware of breast cancer being a problem?

Well, yes, because EVERYONE IS AWARE OF BREAST CANCER. EVERYONE ON FACEBOOK KNOWS WHAT IT IS AND THAT IT IS TERRIBLE. But seeing a string of numbers on your friends feed does NOTHING. Except piss me off, because you’re wasting my time AND feeling smug about it.

This is slacktivism. “Post this status in honor of everyone you know who has died of cancer!” Okay, that does NOTHING. “Sign this online petition!” That does NOTHING. “Retweet this!” NOTHING. Nothing has changed because of you. When you post pictures of abused animals, you are actually HURTING your cause, because I do not like to see that and I will defriend your ass so fast you’ll see smoke.

Protip: If you are friends with the sort of people who need to be told that animal abuse is bad, YOU NEED NEW FRIENDS.

I can see why you might be tempted into Ice Bucket Challenge hate. But let’s see if I can’t calm yo tits FOR you. Hakuna your tatas, as it were:

1. “How does dumping water on your head cure a disease?” It doesn’t. Shut up. No one thinks it does.

2. “This is wasting perfectly good water.” Uh..we can’t send this one bucket of ice water to Africa. Just like the crusts from your sandwiches when you were a kid, this particular act of waste is not taking food/water directly out of the mouth of a person who needs it. If you want to be outraged about water shortages, go write a letter to Nestle and tell them to stop bottling water from drought regions and selling it.

3. “You bought that ice instead of just making some, you could have given that $2 to charity.” True. I also bought this soda, and this shirt, and my bus ticket to get to work. I have a LOT of money I could have given to charity. I didn’t. I’m just not that much of a saint. And neither are you. Until I see you selling your shoes to give the proceeds to charity, until I NEVER see you with a Starbucks in your hand or a store-bought lunch, you can shut it.

4. Most of the videos don’t explain what ALS is. No. Most of them are 7 seconds long, and it takes that fucking long to SAY Amyotrophic Lateral Sclerosis, never mind saying what the fuck it IS.

5. “You’re dumping water on your head rather than donating money”. That’s not necessarily true. In the original bet, it was an either/or. It’s evolved into an AND situation. You don’t get visibility into the bank accounts of the people involved, so you don’t get to see that part and don’t know for a fact that they aren’t. But a lot of people ARE. See #6. Also? There are some little kids doing this. Last I checked, 6 year olds don’t have $100.

6. “This is not doing anything to raise awareness.” You, sir, are a liar. And you should feel bad. Or maybe you’re so wrapped up in your cocoon of IBC hatred that you’ve not seen anything about the RESULTS. So let me educate you:

Today, the ALS Association reported that they have received donations totaling over 22.9 million dollars.

Last year by this time, they’d received 1.9.

Let me do the math for you.

In the last two weeks, the ALS Association has received ONE THOUSAND TWO HUNDRED PERCENT OF ITS USUAL DONATIONS.

ONE.

THOUSAND.

TWO HUNDRED.

PERCENT.

I have no statistic on how much of an increase OTHER ALS charities have seen. Oh wait, let me google that shit for you. Project ALS has raised $96,000 in a single weekend. Team Gleason isn’t reporting, but I know damned well they’ve seen a spike from co-opting this meme (bastards). The MND Association has certainly seen an upswing in donations.

The OTHER thing you don’t see?

Millions of people watching these videos, wondering what the hell ALS is, and then googling it. And learning.

THERE is your awareness, bitches. In these last two weeks, if even a THOUSAND people became aware of ALS without having been directly affected by it (because that’s cheating), then I’d consider it safe to say awareness has been raised. But tens of thousands of people now know what ALS is, when a month ago they were ignorant. And MILLIONS have heard the name.

How the fuck can you hate that?

You can’t.

Sit down. Shut up. Watch the fucking videos. Laugh. Donate some goddamn money. Lighten the fuck up.

Let’s Get Clinical! Clinical!

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Clinic.

When I was a kid, and my parents spoke of taking me to the clinic for one reason or another, my child brain heard “clink” instead. I had once heard of being in jail being called “thrown in the clink”, so my kidbrain thought my parents were taking me to jail, just because I didn’t feel good.

The concept of Clinic Day can sound a little bit like jail too. Five hours and a host of doctors and experts cycling through in a dizzying whirlwind. I attended my first one yesterday, which was primarily to get me introduced to the people who will be working with me to keep me alive and functioning as long as possible. I was warned it was long, it was overwhelming. My appointment was scheduled from 12 noon to 5PM. The long haul.

I showed up with Danielle and my older brother Gecko. They’ll be the primary caretakers of my health and my (so-called) estate, so it was important for them to know what to expect in the days to come. The practical upshot of this was that we were our own peanut gallery and amused ourselves through the day with HIGHLY inappropriate jokes. Which would have been even worse, only Lance from ALSA asked if I’d mind someone sitting in on my clinic – she’s just started her job with ALSA and wanted to know what the clinic experience was like. I said okay, since I knew there was nothing really major happening with me, and we tried our best to rein in the Your Mom jokes and gallows humor. Which is the best humor.

We didn’t always succeed, but she was a good sport.

The first appointment was with an occupational therapist and a physical therapist. Tag team! The OT was there to judge my hand strength and to see what kinds of things I can be doing differently to conserve my energy. She didn’t like that I carry my laundry up the stairs, and suggested a duffel bag that I can fill and kick downstairs, and then haul up by a rope or something once I’ve walked up the stairs. She also suggested a rolling cart for my kitchen, sitting down whenever I can, that sort of thing. She measured my grip strength with this weird metal handle device, and amused me greatly by shouting encouragement while I squeezed. “GO! GO! MORE! DO IT!” and I thought “People would probably pay a lot of money to have an Asian woman yelling at them.” And then I realized, I *am* paying her. My grip strength and arm strength were 5s all around, I’m good. My favorite suggestion of hers by FAR, though, was that I get someone else to come over and clean the litter box and hairballs so I don’t have to be on the floor. I am actually worried about my “I can do it” being overridden by my innately LAZYFACE nature – I mean, hell YEAH I’d rather not clean the litter box, but I don’t want to make someone I love have to make a special trip out to my place to scoop the freakin’ box for me. That’s dumb.

The PT was there for walking ability – I’d met her before, when I was doing physical therapy regularly before Godzilla Disease had its other name, my usual therapist had called in because it was snowing, so she filled in. She watched me walk down the hall after asking if I had any concerns. I told her I (and other people) have noticed that I lean on walls whenever I can while I walk. I’d kind of thought to myself lately that a cane would be kind of awesome to have around, something else to lean on. We tried me with a walker, which was really awkward. It’s instinctive to lean on it with some weight, but you’re just supposed to use it for balance. And while it’s awesome to have a seat that you carry around with you all the time, it just felt awkward and weird, so I won’t be using that yet. The cane, though, we had me walk with that (again – balance! not support!) and my gait was better. “You kind of..sashay without it, but you’re more stable with that.” I agreed. We tried me with two and THAT was ..comical. I mean, I don’t even get that whole two cane thing. Hikers do it. It looks dumb, and it turns out that it feels pretty goddamn ridiculous, too.

So I have officially graduated to a cane now. I am borrowing one from the ALSA loan closet (which if I have not said before? is a FUCKING AMAZING resource to be able to have, they’re awesome) but I’ll get my own. They said I can keep it as long as I want, spray paint it, whatever; I get the feeling they’ve got quite a few of them.

Speaking of ALSA, the next appointment was with Lance, with his Social Worker hat on. We talked about financial planning, and the major upshot of that was GET AN ELDER LAW ATTORNEY. It’s expensive now, but they can help me plan financially for the future care I’m going to need, and if I have tax-shelter like options, it’s better to take care of them NOW, since SSI looks back a little ways when you apply for benefits. We talked a bit about the Walk coming up, and then his time was up.

The next appointment was all about making sure I can still speak and swallow okay. This made me a little self conscious because it involves making a lot of goofy faces to make sure you can move your mouth fine – stick your tongue all the way out, now try to lick your nose, etc. With three other people looking at me. It was not helped at ALL when Gecko whipped out his iPhone like he was filming, even though he wasn’t because he loves me and I would genuinely be mortified if he posted any pictures like that. (*Author looks sternly at her brother* RIGHT??) Then she gave me a graham cracker and water, to watch how I eat and swallow. That, also, was weird to do with a total of four people watching me. She explained how the mouth moves when you eat, and how that starts to break down, when ALS progresses, and what to watch for. But I was doing excellent, she said, and everything is normal.

Then I met with a nutritionist. We talked about my weight, about my diet, about how evil prednisone is for that. She agreed that it’s not good for me to lose weight, because heavier people have better prognoses, and I’ll NEED that fat later, but I also don’t want to be super fat so I need bariatric equipment or anything, so take that in moderation. Losing weight is tricky, because the body burns through muscle before fat and…I really kind of need that. She gave me advice on what to eat, how to do portion control, and was justifiably disdainful of how much soda I consume (even though it’s diet) and was exasperated when I told her I hate water because it tastes gross. And it does. You can say all you LIKE that water has no taste but you’re a LIAR. She suggested infused water – which my work cafe has all the time, they just dump some melon or something in ice water and call it fancy. I guess I can do that. But…soda, man. Delicious soda.

Next up was Shana. <3 We were short on time for her appointment and ended up spending most of it talking about Doctor Who anyway, because Danielle is ALSO a Whovian and she hadn't met Shana yet so yeah, we totally devolved. But it was awesome. Then we met the respiratory specialist; I was gonna be cute and call her a breathologist, but that sounded familiar and it turns out it's a thing and it's a pretty dumb thing at that. So. ANYWAY. She had all KINDS of toys. There was a thing to measure my ...cough aptitude? (which is good) but I had to do it twice because Danielle is a bitch. hehe. It involved coughing really hard into a plastic kazooey thing and she said it was a good cough, but Danielle said, "you wanna do it again?" as a joke but then the specialist said, "That's a good idea". Damn her. And then we measured my lung capacity, which made me REALLY self conscious because it involves breathing out as hard as you can and keep going even after you can't. I sounded a bit like Muttley. And had to do it a couple of times. THAT one I'd rather not have an audience for again. But it wasn't as bad as the breath stacking. Oh my GoD. So! You get a thing (I walked away with fabu-less prizes!) that is a modified one of these: [caption width="800" align="aligncenter"]hurrhhhh...hurrrhhhh... BREAAAAAAATHE[/caption]

Mine is a prettier purple and collapses. It’s a mouthpiece that you clamp your lips over, connected to a tube, which is connected to that bag. You breathe in as much as you possibly can, and then squeeze MORE air into your lungs with the bag, and again, and again, and then hold all that in for five seconds. And then rest a minute and do it again. And then one more. It feels a little like the opposite of drowning? But you’re in total control so it’s not panic inducing or anything, but you think your lungs just can’t hold any more and then you squeeze more in and then again and oh my god I think I’m gonna pop and what do you mean I have to do one more squeeze oh fffffffffuuuuuuuuuuuuuuuuuu

I have to do that routine every day. For the rest of my life.

It’s to improve my lung capacity, and since ALS kills you by robbing you of your ability to breathe? I’m TOTES WILLING to put up with it. But it..dunno. I guess it was a big-ass reminder of HEY DUMBASS DID YOU FORGET YOUR DISEASE WAS TERMINAL OR SOMETHING? BECAUSE IT IS.

Next step was a quick check in with Dr. Goslin, we went over how I’ve been doing and the results of my clinic so far. We’re checking my liver again because Riluzole can cause damage and it’s no good extending my life by 6 months if I’m going to die earlier because of liver failure. We’ve got an appointment in 2 more months for an extended visit to just recheck everything and see where we’re at. It was good for Gecko to meet her, too. She did a quick strength check, we chatted just a little bit about anxiety and stress factors, and then that was done.

And it was only like…3PM with one more visit to go. During one of the waiting times, Danielle mentioned that she thought it would be more of a meeting room environment, instead of the standard doctor office with exam table that it was. “Yeah,” I told her, “I thought there’d at least be a table, so we could color.” The day was hot, and the room was a bit stuffy even before there were four bodies in it at all times.

The last visit was with a nurse. He was a very nice guy – well, EVERYONE I met yesterday was super nice and patient. His job was to talk to me about things like advance directives. He had a packet about all of that, we talked about what it would take to get the form all official – it doesn’t need to be notarized or anything, he said, just signed with witnesses who aren’t involved in the health care decisions. But just in case someone decides to fight it later, it’s a good idea to send a copy to your doctors, and everyone involved in the decision making. The only thing I ever expect would be a problem on that front is some of my very religious family might be opposed to yanking the plug when it’s time because sanctity of life BLAH BLAH BLAH just let me fucking die when it’s time.

I have faith in my posse, though, to see my wishes done.

We were done by 3:30, and I left with some lovely parting gifts – an appointment for next time, an appointment for a followup with Dr. Goslin in 2 months, an order for bloodwork to be done downstairs before I left, a loaner cane, a breathing excercisey thing (they’re called ambu bags when they’re not modified, but I don’t know if there’s a proper name for them when they’re in ALS patients’ hands after modification), and ALSO an application for a disabled parking permit.

Which, when we left, the DMV was still open so we did that so now I have a gimp parking pass! WOOO!~ Instant popularity when we go out for lunch! “Ride with me!” “NO! Ride with ME!” And I also discovered, because Danielle is ON TOP OF THINGS, that I get to skip to the front of the line when you get a disabled parking pass. I guess terminal diseases have SOME benefit, which is awesome because I was number 608 and they were serving 545.

Danielle was amazing through all of this. She kept very diligent notes, which she is transcribing and putting on our shared Google Docs drive where all of my care info is kept (like meds list, lab results, etc). I quite literally don’t know what I’d do without her. Gecko was also awesome in keeping me happydistracted and he had some really good questions. So I’m grateful that they came with me. And then we ate delicious gyros.

And that’s the story of how I did time.

Being a Force for Good

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I have committed and embraced the Walk to Defeat ALS in Portland. This is a thing. It’s happening. As my team is called The Godzilla Squad, it was suggested (jokingly) that we could all get these:

RAWR
Godzilla REPRESENT

I thought that was basically the best thing ever. I said I TOTALLY needed that. Though, that thing is like $75 and I didn’t really mean that; hahahah how would I justify affording that, no matter how awesome it was? Someone suggested that we make them our team costume, which I agreed would be awesome and hilarious. And then my darling friend Leendah said, “How many do you need and when?”

…I had almost forgotten that Leendah is a kickass costume designer in real life.

Long story short, she is making dinosaur hoods and hoodie sweatshirts for my team at cost.

And the amazing kept happening. People I have not seen in literally a dozen years have signed up to walk with me. My friend Marina not only donated to the walk, but offered to sponsor two people walking with me who wanted hoodies but couldn’t afford the $50. My team is already 8 people strong and has raised $450. That’s….amazing. Seriously, seriously amazing.

There are going to be two talks here at Intel, to recruit for the walk and to just flat out solicit donations, and I’ve agreed to speak at both of them. I am apparently the only person with the disease (that the ALS Association knows about) who currently works at Intel. It’s one thing to say “please give us support in the name of this guy who used to work here and has died”, but it’s another to say “Hi. I work with you guys. You might have seen me in the halls, even, I’m kinda stand-outy. I have this disease, it sucks, please give us a hand.” I’m hardly a Fundraising Warrior or anything, and I’ll never be a marketer even for this – I’m not built for it at all. But if my voice can help out, then I’ll use it towards this goal, while I can.

Tomorrow, for our team staff meeting, I asked my manager for permission to tell the team about it and see if any more of them wanted to join me. I’m not really asking for money, and it won’t cost Intel anything, so he said okay. I’m nervous about it – I’m not good at asking people for something, as I’ve said, but I also realize that for a fair few of them, it will probably be the first time they’ve heard about my disease. And that I have it.

So THAT will be interesting. I am hoping it’s a positive experience with a minimum of awkward.

This is not at all how I imagined my life would turn out to be. But I have to say, I’m not entirely discontent. Some fucking AMAZING people have come out of the woodwork, and my disease has given me some unique opportunities and put people in my orbit that wouldn’t have been there otherwise. I’m really very grateful.

As usual, babies, I’ll tell you how it went, tomorrow.

Walking While I Still Can.

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Yesterday was a very ALS-centric day.

Some days I kinda forget I have it. Some days it’s in my face. And some nights it breaks my heart. It’s okay, it’s just going to be like that. This is my life now. It’s not necessarily bad, it’s just …different.

Almost a month ago, the group leader for the American Veterans employee resource group at Intel reached out to me, asking if I would be interested in being involved in an event they were creating. For some reason, veterans are TWICE as likely to get ALS, and for this quarter, his group is working to promote awareness of the disease. I said I’d be happy to, and yesterday they had a table set up in our cafe. I went down to meet him in person and talk a bit, and there was another person manning the booth that actually had ALS.

Mannnnnnnnnn did that guy talk. And have opinions. When I told him how my symptoms were presenting, how for now I’ve just got trouble walking and use braces, he cut me off with, “That’s not ALS. That’s Primary Lateral Sclerosis. You need symptoms in both legs AND arms.”

“…which I HAVE,” I told him, and was ABOUT to tell him if he’d let me finish. “Stabs and shocks showed weakness in my arms, and I’ve got hyperreflexia in my jaw.”

“Oh. That’s ALS,” he conceded.

…Dude. Just because you HAVE a disease, you don’t automatically get more knowledge and authority than the neurologist that diagnosed me. Specially not Dr. Goslin. He also said it’s pretty much guaranteed that I’ll be suicidal sometime, but “don’t make any decisions at midnight. And don’t look at the computer after dark. Wait until the morning, things will look better.” I’m not sure about the “you will be suicidal” bit, but…yeah.

The two of them were promoting awareness about ALS, and recruiting people for the Portland Walk Against ALS. I got talked in to forming a team. I’m…not good at asking people for anything, much less money. This is important, though, so I’ll do it. And I am. Here!

http://webor.alsa.org/goto/TheGodzillaSquad

After a lot of thinking, I went with The Godzilla Squad as a team name. My other favorite suggestions were “The Walking Not-Dead-Thanks-For-Asking”, “Wokka Wokka Wokka”, and “Bracing for A Cure!”

I was kind of overwhelmed by that guy manning the booth, specially as later that day I was going to attend the first support group. Good god, what if the whole meeting is like this? I mean…really nice guy! Knew a lot! But …overbearing and a little argumentative? I’m a pretty meek person (stop laughing) in real life and he just kind of bowled me over. So I had a little trepidation when I left work for the support group.

I arrived craaaaaaazy early. Danielle met me there, and we snaked out for bubble tea before the meeting started. She has the best ideas. There were not many people there at first, though eventually there were about 20 of us. There were two people in chairs, a couple with canes, and one with this awesome walker thing that I’m gonna try for when things get that bad. It had a built in seat and brakes and everything! The idea of walking around with a guaranteed place to sit down when I got tired is AWESOME. He was pretty funny, too. One of the men in chairs had his wife and caretaker with him – he had slurred speech and a great attitude. He presented everyone with a list he’d compiled himself of how often Medicare replaced components on CPAP/BIPAP machines, because it’s not something they ever TELL you. I’m sure the laws will be different by the time I need that information, but it was awesome that he had taken the time to dig that up and present it to the community at large.

We went around and did introductions, of course. I found out that out of the maybe 8 of us with ALS in the room, 3 of us had been diagnosed in April. What the hell. I introduced myself, and told them that Danielle was amazing and wonderful, and she got a little misty. heh. What I FORGOT to say, was “You bitches have NO IDEA how much of an asset you won through my diagnosis. Danielle and I are both power planners, but she is ALL about the marketing and the data gathering and the everything. She is amazing and you are lucky to have access to her.”

The meeting was an hour and a half, but the bulk of it was dedicated to a show-and-tell with assistive devices. They showed everyone what AFOs were, and talked a little bit about options. Several of us had them, and we talked a little bit about our experiences with them. We were showed a power chair, and they talked at length about all of the options available with the seat cushions and controls and front vs rear vs mid drive. I had NO idea you could recline those things until you’re practically prone. I mean, it makes sense that you COULD but it never occurred to me. The two gents with the chairs happily demonstrated their capabilities. It was really informative, but I wish we’d had more time to just chat. Maybe the next one. I may not be able to convince my boss to let me go monthly, but maybe every other.

We had to bug out a little early to go to my therapist so Danielle could meet him. And then we went to a French bakery and had a delightfully snooty waiter (“We’ll take the cheese plate.” “No. Take the brie.” “”..okay, we’ll have the baked brie.” And his suggestions were all on point, but we disappointed him by not liking chocolate so we didn’t go with his dessert suggestions.) and some fancy delicious food.

And it was a really good day. I wasn’t crushed under the weight of what my future holds, it was actually good to see people in more advanced stages who are still doing just fine, thank you. It was nice to talk to a therapist with my primary caregiver to make sure we understand expectations (which really amounted to, I need to get over it and let people who love me do nice things for me). It was nice to volunteer to participate in the walk (teasingly coerced though I was). I hope that all goes well.

But overall? I was reminded again and again and again that I have a terminal disease, and it’s going to cause a lot of complications, but I felt like…it’s okay. It’s going to be fine. I really felt like I have a handle on this for now. And when I don’t, I have people who will step up and help.

Using my powers for evil

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I received a jury summons in the mail yesterday. Boooooo. I don’t want to sit on a jury! I have a friend who loves jury duty, but he’s crazy. (edit: I have, apparently, MULTIPLE friends and they’re ALL crazy) If I’m selected, I might have to deal with horrible people having done horrible things, and I have a really hard time dealing with suffering. I can’t watch horror movies – it’s not the gore that freaks me out, it’s the suffering. I’m far too empathetic.

I have a chance, of course, to ask to be excused. The most common way is to declare hardship; “I can’t afford to be off of work this long”, “I have no daycare for my children”, “my job is under deadline and it’s critical that I’m there”, etc. My employer is awesome enough to pay its employees for serving on a jury. I won’t accrue vacation time while I’m doing it, but I’ll at least get paid to sit there, regardless. So I can’t declare financial hardship. I don’t have kids to take care of. And “I don’t want to” is not a valid hardship.

But. A friend is egging me on to say, “I have a terminal disease and I don’t want to use any of the time I have left doing this.”

Which….is valid. Totally.

But it feels like a cop-out. I mean..yeah. Dying, limited time, etc. But, I’d be sitting at WORK if not in the jury box, so …..net time lost is zero, really. And money made, regardless. So, in the grand scheme, it doesn’t actually matter. But at work, I can feel like I’m being useful and screw around on the internet while I’m listening to meetings that don’t really matter. On a jury, I have to pay attention.

I’m likely worrying about nothing. In ALL the times I’ve been summoned, I’ve never had to actually serve.

….and because I just said that, I’m totally going to have to. Hopefully it will be a theft and not rape or murder.

What do you think, Hive Mind? Should I try playing the ALS card to get out of my civic duty?

6-11-14 Followup, Checking In.

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I had my followup with Dr. Goslin about the prednisone and whatnot. More shocks and stabs, more with the scrapey tool against the arch of my foot, more of the “hold your arms out” pushy/pully tests. She concluded that there’s no difference between this session and the last. So that either means the prednisone is keeping me stable, or my progression is just so slow that there wouldn’t have been a difference anyway. She’s taking me off the prednisone now, and we’ll check back in a couple months to see which is the case. If the prednisone was helping, then we’ll have to talk about alternative treatments, maybe IVIG.

You can’t, of course, just stop taking a steroid. It’s a recipe for bad times. So we are tapering me off; down 30 mg from the 40 I was taking, for 4 days, and then down 5mg every four days after that until I’m done. I’m happy to be done with it. I’m grateful that the bitchy side effect never happened; as side effects go, weight gain is not that terrible. It still SUCKS, do not get me wrong, but at least I wasn’t screaming at my loved ones while I bloated up like a whale.

Dr. Goslin is still a little stumped by me. I’m just…odd…enough that she’s not comfortable putting the ALS stamp on my forehead with assurance. She’s like, 99.9999999999999999999999999% sure that’s what’s going on, but how did she put it, something to the effect of, my symptoms are exceptional outliers. So basically, “I’m really pretty sure that this is ALS, but juuuuuuuuust in case some years down the road it turns out to be something different, remember she wasn’t completely certain.” She asked that I be open to further experimental treatments as ideas occur to her.

Let’s see. The only other thing going on with all of this is that I have a cough – which may just be a cough; sometimes? You just get a cough. It’s been about a month now, though. Eeeeeeverybody in my office got some kind of plague, but I don’t think it’s that, as I FEEL okay, it’s just that I cough and clear my throat a lot. My nephew was sick about a month ago and had a cough with it, but it also had a fever, which I never had. And my coworkers and nephew are all better now. For an unrelated reason, I was checking on the various side effects that my Fistful O Meds have, trying to track down the actual culprit for the heartburn I have a lot even though I’m taking ranitidine now. I found out that one of the possible side effects of riluzole is…coughing.

I’ve been on riluzole…about a month.

I really hope they’re not related. It would be a REALLY SHITTY CHOICE, do I live for a little longer? And have a cough for my entire life? Or no cough, but dead sooner. Or potentially take ANOTHER med to counter that.

Blehhhhhhhhhhhhhhhhh.

Cosmically Unfair

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Terminal diagnoses should come with a complimentary administrative assistant and a lawyer.

It’s not fair that you have to suddenly deal with the whole “you’re going to die, and here’s how” idea, but there’s SO MUCH PAPERWORK. Bills to pay. Forms to file. People to inform. Insurance to adjust. Huge, heavy decisions to make and then notifying all the people involved. There’s so much BUSINESS to dying, or preparing to. Shit that really, everyone should be cognizant of anyway, but you never really bother to think about it properly until it’s too late, and then your relatives have to deal with it when you’re dead. But because I have warning, and because I want to make this as easy as possible for those I love, I’m trying to take care of as much of this as I can. And quickly, so I can put it aside and not have to think about the end of my life every minute of every day anymore and just get back to living while I can.

..And a kitten. Terminal diagnoses should come with a free kitten. Yeah.

The Followup

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I had my followup with Dr. Goslin today. I had some questions for her, and I wanted her to meet my brother Gecko and my will-be-primary-caretaker and best friend Danielle. Gecko unfortunately couldn’t make it because the poor bastard got a migraine this morning. Suck.

I went in expecting to be taken off the prednisone, I haven’t noticed any change at all except in my weight. I’m all pooufeeh. She did the standard pushme-pullyu battery of tests, and then a little bit of EMG. She decided that I’ve actually gained a little (liiiiiittttle) bit of strength. There was a nerve signal she caught slightly today that she wasn’t able to get at all before. We’re going to keep me on the prednisone for another month, and if there’s another increase, then we’ll discuss more permanent treatment along that line, because prednisone forever is not an option. She not only told me not to worry about the weight gain, but that it’s GOOD that I have some extra weight. People who are a bit overweight tend to last longer, she said. And I’ve already got a slow progression going for me, so….keep that up.

So not only doctor permission to not lose weight, but an active advisement AGAINST it.

Now’s the time you kinda wish you were me.

We talked about familial ALS versus spontaneous, and she told me that there’s increasing evidence that a larger portion of ALS patients have familial ALS than the 10% everyone thought. There is a lot of research being done towards this, and that’s also where a lot of clinical trials are. Our next step is to get approval from my insurance company to get the genetic test that will show if I’ve got those markers or not, and thus make me a good candidate to participate in all the exciting things going on. I don’t think my insurance will turn it down.

We’re also going to start me on Riluzole. Because taking 8 pills a day wasn’t enough. But also mostly to see how well I tolerate it. Because it’s known to do SOMETHING, and if it’s not going to hurt me, then why the hell not. We did some baseline blood work today to measure against potential liver damage down the road, and we’ll see if I get nasty side effects that make the potential extra 6 months not worth it. I don’t wanna have 6 more months of feeding tubes and ventilators if I spend my whole life up to that point feeling nauseous.

ALSO I have an appointment in 3 months to attend an ALS clinic. Mostly to get a feel for how they work, and also baselining and meeting all of the key players in the medical soap opera that is becoming my life. That will be in August. I’m really curious about it.

I forgot to talk to her, but emailed later and discussed that way, about anxiety. I don’t want to be on a maintenance drug for it. At all. Most of the time I’m handling everything just fine. But there are some nights I need a little hand. Usually when I’m trying to think about something really important that I NEED to be thinking about. Like advance directive. I’ll sit and think about it and my brain suddenly goes all staticky and KRRRRSSSSSSSSSSSSSSSSSSSSH and then I either have a panic attack or my mind goes OMG KITTENS AND STICKERS AND SUNSHINE YAY and thinks about literally ANYTHING ELSE. So I told her it’d be nice to have a hand with that, sometimes. She suggested ativan, which I’m leery of because it can be habit forming and makes you sleepy more than just calm.

And then she said, “Medical marijuana can certainly help with anxiety and there are many non-smoking forms of it if you wanted to try that.”

..I have a lot of complicated feelings about pot. Mostly negative. I’ll be posting about that allllllll on its own. I’d be lying if I said I hadn’t thought about it, though – I’d actually mentioned it offhand before to her because I’d thought about giving it a shot for my chronic headaches, before. But yeah. I need to figure some things out. In the meantime, I have a few ativan prescribed to me. I don’t have work tomorrow, and no appointment until 1PM, so I’ll probably take one tonight and see if I can work on advance directive stuff.

So that’s where we are at with the stuff. Tomorrow is my followup physical therapy/orthotic appointment to see how I’ve been dealing with the braces (awesomely). And now you are up to date.

Concessions

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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.

ALS: FTS

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On April 1st, 2014 I was officially diagnosed with ALS.

Unfunniest. April Fools. Ever.

The diagnosis in a nutshell, as I quoted back to my neurologist, was “definitely a motor neuron disease, and probably ALS.”  90% probable.  I have some weirdness in my presentation of the disease, but I’ll talk about that later.  Basically I’m really young to have it – I was 37 when I first noticed symptoms.  It’s also progressing very, very slowly.

FOR WHICH I AM GRATEFUL, UNIVERSE, THIS IS NOT A CALL TO CHANGE THAT.

It’s really harsh, to say the least, to be told 10 days before your 39th birthday that you have a terminal disease.  Which you can do precisely jack shit about, except watch yourself deteriorate into infantile helplessness with a perfectly intact mind, and prepare to die.  Whee?  So my mind is in a million places, and I realize that it would probably be good to start documenting things.  If only to get them out of my head and to have some record of my disease’s progression.

What I want this site to be is a safe place for me to vent.  A diary of disasters.  Details that might have been missed if I didn’t have some place to put them.  A place to tell future me that it didn’t always suck.  An easy way for friends and family to check in on me.

It would be nice if this also becomes a place for people to find out about this shit.  Maybe someone newly diagnosed who just wants to see what they can expect.  Maybe some encouragement.  Someone close to someone newly diagnosed who wants a glimpse into that world.   Someone out there who’s got something kinda weird happening and is looking around on the web for someone whose symptoms match.

What it WON’T be is a medical diagnosis.  It won’t be an authority.  I can’t even pretend to tell you I’m representative of anyone else going through ALS; I’m a pretty odd duck to begin with, and my presentation is a little atypical, like I said; I’d be surprised if someone out there is exactly this way.  But maybe you’ll find pieces that are accurate for some people, some of the time.  It won’t be me telling you what it is like for people who have ALS – it’s me telling you what it is like for ME to have ALS.

SPOILER ALERT : IT IS PRETTY SHITTY.

I’m a pretty goddamned optimistic person, and I’ll find ways to irritate you with that, I’m sure.  I have always believed to my core that everything’s going to be okay, somehow, and while I’m kiiiiiinda finding flaws in that, right about now, I’m still certain that I’m going to BE okay.  Even if my “okay” is not what “okay” meant to me a year ago.  I have a pretty dark sense of humor about all of this, because fuck it, if I didn’t I’d go crazy I think.  So while there will be the occasional OH MY GOD WHY ME THIS IS TERRIBLE there’s probably not going to be a lot of that.  There will be swearing though.  Lots of swearing.  Even in the happy bits.  Especially the happy bits.

Wow. I’m rambling.  This was supposed to be a short and sweet intro.

The moral of the story is Hi, I have ALS, you’re welcome to read about me trying to figure this shit out, but I’m doing this for me, you’re just along for the ride.  Buckle up, fuckers.

The moral of the story is ALS: Fuck This Shit.