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.

Let’s Get Clinical! Clinical!

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.