Spirograph

If all lives really mattered, wouldn’t we all be a lot less douchey about those not our own?

So much reacting without thinking.

Whereas, some days, thinking is pretty much all I do. I’ve been thinking a lot about relationships lately. Not, like, the dating kind. Obviously I am far too angry to date. Not specifically those, anyway. Just the ways in which I relate to others, and how they relate to me. Friendships, mostly, though some family and date-ish-like relationships, too.

Tomorrow I get to spend a large part of the day with one of my longest, closest friends, and I can not freaking wait! I can’t even remember the last time we got to hang out together like this…unless you count the day we spent in a clinic while I took my first dose of Gilenya, but I’m sure both of us would have rather been hanging out somewhere else. Somewhere we could talk and laugh and be ourselves more completely. Maybe somewhere with alcohol. Haha

Tomorrow will be much more “us”. Outside of eating chips in our pj’s while watching old episodes of “V” on VHS, of course.

Anyway, I am ridiculously excited about it – about just having the plan, let alone how much fun and cathartic it’ll be to actually do it all!

Another of my longest closest friends is in town this week with his wife, whom I haven’t met yet but feel like we’re going to get along splendidly together. We haven’t created an actual plan to hang out yet, but we will…it’s just a matter of finding mutual gaps in our schedules. But since I am also off tomorrow through Sunday, I think we should be able to figure something out!

I am ridiculously excited about that, too – I don’t even care what we do, so long as we’re together for a time!

I’m not sure if I feel so close to those two people because I rarely see them, but when I do, it’s like no time has passed, or if it’s because I’ve lived with both of them before. In the same house, just not at the same time. Maybe it was the house that cemented our friendships. Maybe it was the time period – I was fully out and feeling pretty cocky about my awesomeness; I thought at the time that I was pretty open about who I was, or at least as much as I had discovered so far. So I wonder if my frustration now is in feeling like I am less open than I was? Or the same but wanting to be more? Am I just more aware of feeling like I don’t know how to be the kind of friend to certain others that I want to have for myself? I definitely feel more guarded with new people now. I hadn’t been devastated yet when I met those friends from my 20’s.

Maybe some people just better at seeing through my crap and calling me on it and moving both of us past it. Maybe my newer friends just haven’t been given the chance to get there yet.

The interesting thing to me is that – regardless of the when or the how long – none of my closest friends ever consider me to be their closest friend. Or rather, they’ve always had people in their lives who are closer to them than I am. Just as I always have people closer to me than anyone who’s considered me one of their closest friends. It’s like some weird spirograph of connections; always fluid and changing and growing and shrinking and yet somehow still working somehow.

For the most part. There are times I still long for a more balanced mutual connection – to the point where I find myself even trying to force it sometimes – but for the most part, the spirograph works, and everybody gets what they need, more or less. Trying to force something to be what it’s not just because we want it to be something else…really doesn’t work for anyone. Which I of course know, but that doesn’t stop me from trying sometimes, even though I know it’s not going to turn out the way I want it to. Sometimes I just can’t help myself, I guess. Maybe I haven’t figured out the difference between reaching for what I want versus fighting a losing battle.

Maybe I still haven’t been able to even tell the two apart.

Ketchup – Another Irrelevant Post

This is just going to be short and directionless, because I am busy today, but I don’t trust myself to write later. I’d rather write quickly now than not at all later.

So let’s see…what is on my mind today?

Got a call from my neurologist’s office earlier. I have to go get the round of bloodwork I had done last weekend RE-done in about 2 weeks. I guess he didn’t like something he saw and wants a second look. It’s funny, because my doctor mentioned it yesterday, that something about the last tests were elevated, but in my sleepy brain I thought she was talking about the ones from a couple of months ago, as I didn’t think she’d have the results of the most recent ones yet. I said my neuro had mentioned it but that he’d said it hadn’t been high enough for concern. Turns out he just hadn’t mentioned it YET! Haha

I’m still not concerned, though. I suspect all the rampant drinking I did at the beginning of March, while primarily just trying to get through the difficult memories that are now forever associated with that time of year, perhaps took a bit of a temporary toll on my liver enzyme levels. I’ve cut back down to almost nothing again, though, so I’m sure by the time the tests are re-done, everything will be back to within normal ranges. It’s happened before, and I guarantee it will happen again. The good thing is having a medical system that allows my team of doctors to monitor everything as often or rarely as they need to, and double-check when they aren’t sure.

I remember even going in for…something…I think one of the heart-rate tests I had to do when I was going on a new medication? Anyway, they took my blood pressure when I got there, but it was so absurdly high that the woman decided to do it again after the main test was done, at which time it was back to normal. Sometimes these things are all about timing.

I imagine the results from all the other tests my doc did yesterday will be back soon, too. I’m not concerned about any of those, though. They’re just the standard things people get checked out occasionally. It’ll be good for her to have a baseline medical history that’s not related specifically to MS testing, though. The last time I had any of that other stuff done was 2008, which was long before I had to find a new family doctor!

She didn’t check my weight, though, which is too bad, because I’ve totally lost some, and if I continue to lose, it would have looked even better next time! Ah well.

What else? I felted and attached a head to my blue snowman last night. I didn’t have much time but that’s still a good step to get completed. Now I can either work on details (like a face) or try making different shapes all together. Will see what kind of mood I’m in later.

I am much more about welfare instead of rights, especially where non-human animals are concerned. It just makes sense.

I’m bummed at the prospect of yet another winter storm, and will just hope we don’t end up with much more snow. I hate having to get Brody and I all bundled up just so we can go outside for a few minutes, and then have to get boots off and puppy feet dry as soon as we get back in the door again. It’s annoying and time consuming.

I also hate when I feel like I have to pee, but can’t seem to make it happen.

And I hate that I had raw veggies and hummus earlier but am still craving potato chips right now. Jason Isaacs mentioned that he loved that Canada has ketchup-flavoured chips. Which – I don’t really get how it’s that novel an idea. How many people have ketchup with their french fries? Potatoes and ketchup are good together, non-Canadian people! It’s at least not a wacky idea!

That being said, though, I hope he snagged a bag of Ketchup Doritos while he was here, because holy hell – SO GOOD!!!

Now I really want chips.

Damn.

Playtime With Brody

Playtime

Holy crap I’m tired today!

Like, my eyes are sore from just being open. Ridiculous.

I can’t seem to concentrate very well, so I’m just going to write a few quick little bits about daily life the last few days.

I came in late this morning because I finally went to see my doctor about my crazy cough. I’m not over my cold yet, but it was still worth going in to see her because this time the cough happened months before I came down with a cold, so they are unrelated.

She gave me another prescription for the ventilin inhalers I was on back in the summer, so that should help. She even added some repeats just in case I need more than one to control the cough longer. The inhalers mess me up a bit – give me the shakes and increase my heart-rate and such, so I don’t want to use it during the day, if I can help it. I started using it before bed, because at least I can sleep better and hopefully skip the uncomfortable side effects. The doc also suggested the cough might actually be a side effect of Gilenya, which I hadn’t considered. She even looked it up online while I was in her office and said it was listed as a possibility, so that’s cool. If the inhaler once an evening works to more or less control it, all should be well. Assuming I can afford it, but that’s a worry I’ll deal with later. It’s not the end of the world, either way, after all!

In other news, I started playing more with Brody over the weekend. Or I started playing with him differently, and more. He’s a pretty self-sufficient little guy, and doesn’t require a lot of attention. He just likes to be close to you, and cuddle, and get his belly rubbed.

Within the first few days of him moving in, he started to play on his own. He’d grab a toy and run around with it in his mouth, throw it up in the air, chase it, and throw it again. Sometimes he still does that – did it with a tennis ball just last night, even. I think I threw it for him once, but beyond that, he was happy to play by himself.

Other times, though, he wants me to play with him, too. He wants me to chase him and try to get his toy from him, but he prefers a slow-motion chase. And a light tug on the toy, rather than really pulling it away from him. Sometimes I’ll pull it away, but then let him get it back pretty easily. He also has this sweet soccer move where he knocks the toy out of my reach with his front leg, and turns quickly to pick it up himself before trotting away with it.

He takes everything to his blanket or his bed, and I consider that his safe zone, so I never take his stuff from him when he’s there. Mostly, though, he’ll bring things near me, then scamper off as soon as I notice. I end up playing with him without really having to get up from the couch.

So over the weekend, I decided the time Brody chooses to play with me is more precious than whatever I’m watching on TV, so I hit Pause, and got down on the floor with him.

He was SO HAPPY!

He basically would run back and forth from the bedroom to the front door, but with me crouched in the living room doorway, he had to get past me (and, occasionally, Jack Bear, who was also excited to have me down at their level, and had to get all up in ma grill) both ways. I’d wait until he got close, then he would speed up, I’d try to grab the toy, and even if I got it, he’d get it back from me and continue on his course. He always slowed down once he got where he was going, then run faster when it was time to blow by Mama Sue.

Cutest. Game. Ever.

We both had fun, and he instigated the game a couple of more times over the weekend, so I know he liked it. I love finding new ways to connect with him, even though it’s only for a few minutes at a time.

It’s some of the best few minutes of my day. 🙂

P1010768

MS and Gilenya – Some Possible Side Effects

I can’t remember when I first started taking Gilenya, exactly, but I believe it’s been just over a year. Sometime in summer 2014, I think. Considering I had to spend a day in a clinic having my heart rate and such regularly monitored after I took the first dose, you’d think I’d have a more clear recollection, but I was also going through some personal stuff at the time, and most of the past year and a half, or so, is pretty much a blur.

To be clear, though, I absolutely prefer the daily oral dose of Gilenya compared to the weekly injectible dose of Avonex I was on before. I’d lose a day a week to extreme flu-like symptoms that kept me home in bed, and feel like hell for another day or two after once I was functional again.

I’d also meant to keep a closer eye on any changes that cropped up in the beginning, and in the time since, as my body became more accustomed to the new medication, but I didn’t really do that. As well, it’s often difficult to tell if any of the changes I have been noticing are a result of my age (I turned 43 in Sept 2015), MS itself, or my body’s reaction to the medication. As such, I’ve often spent time online checking out what other people are saying in forums and the like, to see if I can find any similar experiences. This is my first attempt to compile some of my observations together.

Bruising

I remember pretty early on after I started taking Gilenya that I went online to see if anyone else was experiencing increased bruising in their day to day lives. I’ve mentioned I’m not the most graceful person around, but for awhile I seemed to be getting bruises without any recollection as to what I’d done to earn them. Like, more than usual.

That observation fell off my radar for several months, but popped back up again recently when I ended up with a fairly huge bruise on my upper arm – that’s still visible now, at least 4 weeks later. Maybe more, since I can’t quite remember when I got it. I seem to take longer to heal overall, really, be it a bruise, or cut, or cold virus, etc. I don’t get sick as often as I thought I would, thankfully, but when I do, it’s hella hard to bounce back from. Takes weeks.

After my Guinness World Record attempt, wherein I’d been awake for over 55 hours straight, I experienced numbness over pretty much all of one side of my body. That also contributed to physical injuries, because my sense of balance was off, my sleep pattern was disrupted, and it was easier to walk into things without noticing because the impact wasn’t registering in my brain. That’s pretty much cleared up now, at least.

Fatigue

I’m pretty sure it’s more the MS than the Gilenya, but regardless, the level of chronic fatigue I’ve been experiencing for the past few years or more is…ridiculous. MS is such a dumb disease, and if I could vote it out of existence, I would. It won’t kill you, necessarily, but it’ll make every single aspect of your life more difficult, uncomfortable, and in some cases, impossible. My body is tired all the time, but my mind struggles to keep up to day-to-day activities. I can’t remember things, so I put notes in my phone to remind me that I need to do dishes when I get home, or whatever. At work I write everything down because I can’t remember what I’d just been working on once I get interrupted for even a moment. It’s frustrating. And all of the effort it takes to focus on doing any mental tasks causes me to be extra weary by the end of the day. I feel like everything inside me has slown down, while the world keeps going at the same pace it always did. Again, that’s probably more an effect of MS, rather than Gilenya, but let’s just say I definitely don’t feel any more alert than I did before I started taking it!

Muscle Control Problems

Everything from weakness, to tingling, to nerves jumping, to dropping things, to controlling when I need to use the washroom versus when I just want to – even simple things like zipping up my jacket takes a lot more concentration than it used to. And that’s probably more MS-related, as well, but definitely worth mentioning. I feel like all of my muscles are just slightly out of control now. Not to the point where it’s noticable from the outside, but inside, I feel like I have to focus to keep from falling, or dropping what I’m carrying, or taking a billion attempts to screw the top back onto my Coke bottle.  I even have to schedule my loo breaks.  Activities that could previously rely on simple muscle memory – like zipping up a jacket or washing a plate in the sink – are more difficult, and things requiring more advanced motor skills – like threading a needle – are next to impossible. So much so that when I do accomplish something that used to be simple, I almost feel it’s worth a Facebook status update, or something. Maybe a nice shiny plaque. “In honour of Sue, for getting her key in the lock on the first try.”

Menstrual Cycle Chaos

Not something I love to talk about, either, but that might be why there is less information out there on such a new medication as Gilenya. Or maybe it’s just because I’m getting older. But the timing seems pretty coincidental if that’s the case, and when I posted a question to other ladies in a related online forum, the concensus seemed to be that I wasn’t the only one who experienced a sudden change. What was once pretty freaking regular has become so impossible to anticipate that I spend a good 2-2 and a half weeks each month trying to be prepared for anything. And that’s just not for the start. It also is difficult to tell when it’s actually done, versus just taking a nap. Haha

Ridiculous.

I’d like to say things have kind of evened out lately, but I’m not prepared to commit to such a statement just yet. It seems maybe a bit better – for quite awhile in the beginning of my Gilenya experience, it could be anywhere from a week early to ten days late. And then go on for however long it felt like it, apparently. Now, for the past few months, at least, it seems like there is less of a huge gap between the early and late ends of the spectrum, but that could be any number of factors affecting it all, really.

Tough to tell. Just another annoying aspect of life that I have to live with.

I know I’m forgetting things (why didn’t I write them down first?) but that’s a fairly good start, anyway. I’ll write another post if I think of more another time. The switch to Gilenya has definitely made my life much easier overall. Well, maybe not financially, but the drug company has actually been really good about working with me to make sure I don’t miss too many doses in a row, so that’s good. And none of these things are actually complaints – more just observations, because I know new side effects will be discovered over time as more and more people start using this particular medication to treat their disease.

It’s definitely the condition that’s complaint-worthy, not the medication for it!

But THAT’S for another post.