Category: Meds

Walk This Way

tragerstreit1 Comment

I’ll be in a wheelchair someday.

 

This is just fact.  It isn’t sad or depressing, maybe frustrating because I’m powerless to do anything about my own impending powerlessness. For now, I’ve got braces on my legs.  Then probably a cane, and then probably those crutches that have the arm bands.  I’m sure there’s a medical name for them.  Hang on.  Lemme Google that.  They’re called “forearm crutches”.  Well, that’s disappointingly obvious.  There are some pretty cool looking ones tho.  ANYWAY.  Tangent.  Sorry.  After the crutches will be a wheelchair.  Maybe a manual one because my arms are still really good, and maybe not, but certainly, inevitably, an electric one.  Vrooooooom.

 

Even before my diagnosis, when I was losing the ability to walk, everyone told me “you’ll have the coolest wheelchair EVER” and “You’ll have the pimpenest cane EVER”.  And I really, really plan to.  I joke about cards in the spokes and streamers, but dammit, if I’m gonna sit in the fucking thing forever, I’m going to make it a comfortable and classy ride.  And if I’m going to carry something around with me everywhere I go, it IS going to be an awesome cane.

 

A dear friend of mine was having his own sudden health crisis, and he showed up to work with a cane.  He commented that it’s a lot harder to walk with than you’d think.  I don’t doubt it.  With every step of this progression, I am having to relearn how to walk.  I had to learn to be more conscious of my foot drop so I didn’t trip over things.  With the braces, I’m having to learn to trust them not to break and not feel like I have to stoop over when I walk so I don’t lean on them.  They’re so lightweight and springy I feel like they’ll snap, but carbon fiber’s pretty hardcore and as long as I don’t go all Portal with them, I’ll be fine.

 

In said friend’s post, a friend of his commented that he hopes my friend got a really cool cane.  And since my friend is a musician, he linked this one:

 

https://www.etsy.com/listing/93330041/custom-order-walking-cane-tenor-guitar

 

….WHICH IS FUCKING AWESOME.

 

And of course, because etsy is already one of my favorite wastes of time (as evidenced by the number of things from etsy on my Amazon wishlist (thank you very much Amazon for making that feature because it is awesome (okay I think that’s enough parentheses (no, we need to go deeper (ok seriously I’m done (let’s see if I correctly close them all out))))), I poked around on that sire awhile to see what kind of cane I’d buy for myself, if I needed one right now.  And I have a lot of options, just from etsy alone.  I’ve learned a couple of things.

 

  1. People on etsy make canes that would actually, physically HURT to use for their intended purpose.   I intend to wear gloves when I have to go this route so I don’t callus the shit out of my hand, but can you imagine having to trust your weight with your hand on this? http://etsy.me/1s3I1Jt
    1. SERIOUSLY.  http://etsy.me/1sIA2hu
    2. http://etsy.me/1r4zhSp  WHAT AM I SUPPOSED TO DO WITH THAT, SIR.
  2. You can go out in to the woods, pick up a stick, put a rubber stopper on it and call it a cane.  And charge $60 for it.  http://etsy.me/1jkM0O8
    1. Or $69.  http://etsy.me/1nfS31E
    2. http://etsy.me/1r4zIvL  $87 ARE YOU KIDDING ME
    3. HOW IS THAT A CANE http://etsy.me/1s4UxaO THAT IS CLEARLY JUST A STICK THAT YOU FOUND.
  3. You can buy canes that are going to break the moment you put your weight on it.  http://etsy.me/1ory69e
    1. Or might look awesome but still look like they’ll break  http://etsy.me/1jinDuJ
    2. Seriously this one is awesome but it feels like it would snap instantly http://etsy.me/1q0FvBT
  1. And then there’s this fucking thing.  http://etsy.me/1oJr971  *makes Skeksis noises*  Channnnncellor!
  2. Also, there is such a thing as a cane cozy.  http://etsy.me/1oOK1kn  I can’t tell you how much that weirds me out.  Or explain why.  http://etsy.me/U6Ye16  Just..wow.

 

But there are really good ones out there.  A lot of solid, dependable, suited-to-the-purpose-without-being-medical-looking ones.  If I had to get one today, it’d probably be either http://etsy.me/1xErFHy or http://etsy.me/1qoL3Ds .  Or both.  One for dailies, one for Sunday best.  😀

Outfitting yourself with a cool accessory is a powerful coping mechanism, I’m finding.  I feel SO much better about my pills and pills and pills since I made the apothecary shelves with them.  OH!! I haven’t showed you that lately!  I have Apothecabinet Mark II now.  Separate post.  Yep.  It’s like consoling yourself to go through chemo by thinking about all the awesome wigs you can get and have a different hairstyle whenever you feel like it.  I have to take a lot of damned medicines, but I feel better about it dispensing them all from little awesome jars.  Yeah, I’ll have to walk with a cane eventually, but it’s gonna be an awesome accessory, besides being functional.

My chair will totally have metallic glitter paint and stickers.

6-11-14 Followup, Checking In.

tragerstreit2 Comments

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.

Fatty McFattersons

tragerstreit11 Comments

Rooouuuuuuuuuundabout four, five years ago, I hit what you might call “a rough spot”. End of my marriage, purchase of a house, the move, mom had a health crisis, things like that. A rough spot. And I grew up incredibly poor, so food has always been a comforting thing. Thus, I have always been…a little rounder than necessary, usually right around 160 when the charts all say I should be 140, but fuck those BMI charts anyway, I like a little curvy. But this little “rough spot” pushed me to be far heavier than I’ve ever been. I freaked out when the scales tipped past 200, did the paleo diet thing, and lost 40 pounds.

I weighed pretty close to my target weight, I had a shiny new house that needed some decorating, I looked cute, my job was going great!

And then this whole thing kicked in for real. Annnnnnd I began stress eating. And so I gained back ten pounds.

And then my little brother and his family moved in with me while they wait for their new home to become ready, and they have a little kid, and they eat a lot of processed food. I am surrounded by unhealthy food and people giving me permission and non-judgment to eat it. And it tastes good and is easy, which is why I got fat in the first place. So I eat fast food while we are out, I eat processed food smothered in ranch while I’m home, and drink sugared soda again instead of diet. And so I gained another ten pounds.

And theeeeeeennnnnnnnnnnnnnnnnnnnnnnnnnnnn prednisone.

Fucking prednisone.

With the water weight gain and the wanting to eat ALL. THE. TIME. And there’s nothing around me but junk food. And so I gained another twenty pounds.

So now I’m just about back to the weight I was when I lost my shit in the first place and started hardcore dieting. I had to buy new clothes because I’d either thrown away or turned my fat pants into painting pants. I feel gross, I feel unattractive, I feel like a loser. …As I shove another handful of candy in my mouth because holy SHIT does the prednisone make me want to eat, like, ALL THE TIME. And my life is incredibly stressful right now, so I console and reward myself with delicious food. And so I gain weight.

FUCK IT – YOU ARE DYING! EAT ALL THE CREAM PUFFS. ALL OF THEM. ALL THAT EVER WERE. WHAT’S IT GONNA DO, KILL YOU? HEY IS THAT SALTED CARAMEL SAUCE? I BET IT WOULD BE AMAZING TO DIP THOSE CREAM PUFFS IN. YOU’RE DYING – LIVE A LITTLE. YOU CAN’T PUSH CREAM PUFFS DOWN A FEEDING TUBE, BITCHES. ENJOY THIS WHILE YOU CAN.

I tell myself I’ll get back on the paleo diet just as soon as my little bro and his family are out – I’ll be cooking for myself only, and I can buy non-processed shit. I won’t have someone else to cook for me, and I won’t be going out to fast food every other night anymore. I will Eat Right and Lose Weight. And I won’t be on the prednisone for much longer, so that will help a lot, too.

Except eeeeeeeverything I’ve been reading about ALS has said in big bold print that if you have ALS, YOU SHOULD ABSOLUTELY NOT DIET TO LOSE WEIGHT. Because…well….you’re not going to be able to eat, eventually, and you’re going to NEED that extra weight to live off of. And statistically, my doctor tells me, people with extra weight tend to have better prognoses.

It’s every fat girl’s dream! Not only PERMISSION, but RECOMMENDATION to stay fat!

HEY CAN I GET A SIDE OF RANCH WITH THESE FRIES?

…But I don’t WANT to be fat. Yes, food is delicious, but I really liked being able to fit into 32s. I felt healthier, I looked cute. I want to be there again. I want to be rid of this emerging double chin. I want to fit into medium girls’ shirts – I’d say small, but I’ve always been too busty for that nonsense, and I am OKAY WITH THAT – because I have some really awesome ones. My Night Vale shirts are all mediums and I miss them. I want to not sweat so goddamned much. I want to not have my shirt flip up in the back when I sit down. I want to be not so self conscious about it when it does.

I don’t want to be fat.

I have the power to not be fat. I have the self control. I have proven this. In 5 months, I lost 40 pounds. I can do it again. I just don’t know if I SHOULD. I mean, yes, eventually I will not be able to eat at all. Probably. It doesn’t always happen. I don’t think this necessarily gives me permission to eat whatever I want though. And I don’t know that hauling around this extra weight is any healthier, in the long run. It’s such a slow progression, and I can’t be fat for years and years “just in case” I start to become unable to eat.

So do I trade healthier and happier NOW for just healthier later?

I will ponder this some more, while I eat my Taco Bell lunch.

Mmmmm Baja Blast.

The Rules and Regulations to Rituals and Reminders.

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When I get up in the morning, once I’ve managed to drag my ass out of bed (NOoooooo sleep is my favorite hobby), this is what I have for breakfast. 8 pills and enough juice to wash ’em down.

one pill makes you larger....
Delicious.

And then once I get to work, I have Second Breakfast!

"These are gonna make you hyper. Hyper hyper hyper."
Delicious and nutritious
Like some demented hobbit on a day pass.

George Carlin wrote in one of his books, “The sicker you get, the harder it is to remember if you took your medicine.” I’m finding it’s truer (more true? Truthier?) than I figured when I first read it. With the sixteen pills I take a day come rituals and reminders. You can’t just take some meds and be done with it. They all have their own rules and regulations and side effects. I have to take Riluzole on an empty stomach, it is very specific: “One hour before or two hours after eating”. And then prednisone has to be taken with food. I have to take them both in the morning, so I have to create a behavior that takes those rules into consideration. I take the Riluzole along with everything else in the morning (so it’s not technically an empty stomach, sure, but pills aren’t food, even if the dinosaur multi and the vitamin C ARE chewable). It takes me about an hour to get to work, so by the time I get in, I can take the prednisone. So I have something to eat and then swallow a couple pills. I have a reminder set at 2PM to take my second dose of gabapentin. And then another at 4:30 to take the other Riluzole, so that an hour’s gone by when I get home and start thinking about dinner. When I get home, another three pills wait for me – the second daily dose of buproprion and ranitidine, and the magnesium supplement. At ten PM, another alarm goes off on my phone and I take the day’s final gabapentin.

Six appointments a day. For medicine.

Thank the merciful LORD ABOVE for technology. I don’t know how people did this before phone alerts. I’ve forgotten to brush my teeth some mornings, how the hell am I supposed to be able to remember at what times to take what? So I rely on my phone’s alarm function and one of those stupid little day-of-the-week pill boxes with night and day dose rows. Once a week, I tip the right pills in the right boxes, and then just empty the right one into my hand when I head downstairs to work and swallow them before I leave. And then there’s three bottles of pills in my drawer at work, to be accessed at the right time. I have pills EVERYWHERE. And I should have a small stash of those three pills in my bag, in case I go somewhere on a weekend. Again, a George Carlin quote. “Now you’ve got shit all over the WORRRRLD!”

The sicker I get, the more pills I’m going to have to take.

The sicker I get, the harder it is going to be to remember if I took my medicine.

It’s an obstacle I’ll overcome when I get to it. I’ll have to. At least my phone isn’t affected by all of this – the sicker I get, my phone don’t GIVE a shit – so as long as that works, I’m set. …As long as I remember to take it with me. These rituals and reminders are part of my life now, and that’s okay. It’s not bad, just different. Just one more habit I have to form, one more shift in my lifestyle. And someday I might have a feeding tube, so I won’t even have to swallow the little fuckers. Just bloop bloop bloop, in they go.

As long as I remember to have my phone, to remind me take them.

For those of you playing along at home…

tragerstreit2 Comments

Sixteen.

Sixteen pills a day.

Five supplements: a multivitamin, vitamin D, vitamin C, iron, magnesium.

Two OTC pills to counteract a side-effect of one of my meds.

2 riluzole. 2 prednisone. 3 gabapentin. 2 buproprion.

And then there’s the optional ones for anxiety and sleeplessness. But I rarely take those.

I am going to build myself an awesome apothecary cabinet for all of these and keep them in glass jars rather than the boring plastic bottles. If I’m going to be a walking drug store, it might as well be cool looking.