Random Musings

With all due apologies to Vinny Barbarino and his wonderful portrayal of druggies, Kwipette’s started a new regime of drugs.

First up, she started Aricept (aka Donepezil) to try and improve her short-term memory. While for the most part she’s been maintaining her current abilities, she has taken a pretty big hit in her cognitive abilities, particularly in short-term memory. Which could be really fun if it went something like this:

(Kwip enters the room, start undressing)
Kwipette: “What’re you doing?”
Kwip: “Getting ready for nooky! You just told me to come in here so we could knock boots!”
Kwipette: “What? No I didn’t!”
Kwip: “You did! You just did!… Oh – honey, did you invite me to have crazy monkey sex with you and then forget? Curse that MS!”
Kwipette: “Nice try, jackass.”

Instead, we usually go back and forth with the same conversations a few times. She reminds me of things repeatedly – it’s like living with your mother, only she will NOT stop reminding you to pay the phone bill, even after you explain you haven’t had a phone in the house for 2 years. Which (admittedly) isn’t always bad, considering how often *I* forget things, but it can be a bit tiring. I don’t like Facebook in general; I certainly don’t want to hear the same story about finding an old boyfriend on Facebook 3 or 4 times a night…

When Kwipette wakes up, that’s a REAL test – after a long or busy day, she’s likely to fall asleep quickly and heavily – and if she wakes up from that sleep, she’s often disoriented. Sometimes she can only speak in gibberish (and REALLY hates it that I don’t understand!), sometimes she’s confused about where she is/when it is, and sometimes she wakes up completely lucid but asks me the strangest questions (“What did we use as a bookmark for our wedding guestbook?”).

But overall, it hasn’t been too terrible. Given enough time and patience (or the chance to just fall back asleep), she usually gets up to speed fairly quickly. I’m always worried about the day she wakes up and forgets she has MS and can’t understand why her legs don’t work. Or when she wakes up and doesn’t recognize me – you think MS is horrible, imagine waking up to ME!

The other new drug she’s trying is a relatively new treatment, albeit an old drug. It’s called “Low Dose Naltrexone” or LDN for the hipsters. It’s actually a drug that’s been around for some time and used to treat alcoholics and heroine addicts in normal dosages, but has been discovered to help MS patients in low dosages. There hasn’t been a lot of reliable studies done on it – which proponents claim is because it’s a “cheap drug” and thus there’s no incentive by the greedy pharmas. I’m not sure if I buy into that hyperbole, but there are plenty of folks out there advocating it’s usage in MS.

Of course, there’s plenty of people claiming Becky just needs more Flax Seed Oil, too…

Still, it’s a cheap drug – a monthly dosage costs us just $40, which is a Hell of a lot better than the $6,000/month Tysabri bill we get now (thank Gord for insurance covering most of that – as much as I hate insurance companies in general, at least they get most of that!). Granted, Tysabri’s been studied a lot more and has a LOT more documentation/research to back it up… But for $40/month? Why not try it in addition to the Tysabri? Kwipette’s Tyrsabri doctor feels completely fine with her taking them both, so that’s what we’re going to try.

She’s been on Aricept going on two weeks and LDN for all of three days so far. We haven’t noticed any major improvements (yet!), but neither have we noticed any big side effects. Well, Kwipette has had “bowel control accidents” for 2 of the past 3 nights, but hopefully that’s completely unrelated. Or at least something that will pass. Because I don’t like being woken up in the middle of the night as a general rule – but being woken up and invited to a “poop party,” as hilarious as that might sound, isn’t really that fun. You do NOT want to wear the hats at that party, trust me…

But that’s where we are right now. Folks always ask how she’s doing, and I never really have anything NEW to tell anyone about – we keep on, keeping on. But now this is something new, and hopefully very, very positive.

Sooooo…yeah. Gimme drugs, indeed.

May 24
Posted in Random Musings by Kwip 1 Comment  
Random Musings

Henry Dalton Thomas Fickes 11:55am 5/3/2010 baby and mom are fine.
That's am not pm!  on Twitpic

Congrats to Dr. Sexy & The Sexratary from all of us!

May 3
Posted in Random Musings by Kwip 1 Comment  
Random Musings

Yes, I know, it’s been forever since we discussed Team N3RD and our fundraising for the National Multiple Sclerosis Society. Since 2008, actually. I’m hereby declaring loudly that I suck, and I bear all the blame.

Last year (2009), it was a no-brainer. Kwipette was still in the nursing home, and I was what doctor’s refer to as “a wreck,” so I just couldn’t get it together enough to even think about organizing our team. That’s an easy defense.

But this year, I’m afraid I didn’t do much better, and have less justification. Kwipette has been back from the nursing home for almost 4 months now, and she’s doing very well. In fact, I can reasonably state that she will never, ever return there (much knocking on wood).

She’s set up with daily visiting aides now, so she barely spends any time alone. I can go to work without worrying about her falling – even though it still happens, and I’ve still made a few trips to get her back to the wheelchair. But she’s not alone, and I don’t have to worry about her lying in a pool of blood when I get home. Furthermore, we’ve had time (and friends, luck and money) to qualify for state grants to modify our home for a fully-accessible bathroom, as well as being able to afford some standard hospital equipment (bed, commodes, lifts, etc, etc).

Basically, anything she would need from a nursing home, we can provide here (apart from indifferent nurses, of course). I kid! Some of her nurses were quite wonderful, but she was one of many patients they had to deal with.

So. If she’s set up so well, why aren’t we doing the Walk MS this year?

The truth is, we’re still recovering. And I know that sounds lame four months later, but 2009 was a brutal year. Too many hospitals/nursing homes/family dramas/STOLEN IPHONES (dammit!)/general BS. Nothing completely insane – let’s be honest, I’m still doing the Pittsburgh Comicon next weekend (booth S071, stop by!), so it’s not like I’ve spent this time curled in a ball crying (that’s actually what I’ll be doing AT the Pittsburgh Comicon).

However, because we have awesome friends, some of them are doing the Walk this year without us (and will probably make better time, but there will certainly be fewer King Boo costumes).

Still, if you wanted to make a pledge this year, feel free to sponsor our friend Dawn. She’s a trooper, and we greatly appreciate her efforts (especially with us being so lazy)!

But NEXT year… Man… Next year?

MS won’t even know what hit it.

Apr 14
Posted in Random Musings by Kwip 2 Comments  
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