Mind Reels Activity

Holy crap guys! So much happening on the Mind Reels front this morning!

Did a little promoting of our Patreon page, as per usual (http://www.patreon.com/TheMindReels – please share – every little bit helps!) and then moved on to other more immediate things.

Am just a step away from confirming the date for our next radio play, which will be happening next week, barring any unforeseen circumstances. I heard back availability from one person, then three more in a row said they were also free on those evenings, so suddenly I have a cast, and now just need to confirm that the studio is available before I cement the details! So excited! We’ll have a couple of new people and some who have done one before, but I don’t think any of them will have really done any together before. Maybe two of the guys. Anyway, I’m super stoked – we’re doing an episode of Ellery Queen this month, and it’s ridiculous! I love these old radio plays. They are so bad they’re great! It’s got to be one of the most routinely fun things I’ve ever done, and I hope this project has the legs it needs to keep going for a long time!

And speaking of projects, we just put the wheels in motion to start yet another one! This one will hopefully expand our content, as well, but in another slightly different direction, which – if it works out – should be amazing! While the radio plays act as a branch of our podcast, this new project will hopefully become a long-term branch of our blog. I am so insanely excited about it, I can barely contain myself! I’d been distracted from it for the past couple of weeks, but as soon as I started working on it again, the initial excitement came rushing back, and I couldn’t wait to take the first steps! Now I’ve started taking them, and while it’s a matter of waiting to see if there is any response from the parties I’m reaching out to, it’s hard not to kind of hold my breath in anticipation. I’m aware that there could be no response at all, or negative responses – I’m aware this might not take off even a little bit, let alone the way I’m hoping – but at the end of the day, I’m a dreamer. I’ll keep dreaming this until it either becomes a reality or falls on its face. I’ll keep believing in the possibilities until I have no choice but to concede defeat.

As well, we have a tentative interview coming up next week, but the only time it can be done is after I have minor-but-painful dental surgery, so it’ll be interesting to see how THAT goes! I was kind of hoping to go home after, walk the dog and go to bed. Instead, I’ll likely be heading downtown to try and hold it together while chatting with one of my favourite people about one of my favourite shows!

How do I get myself into these things?

The first time I did an injection of Avonex (the first MS meds I was taking), I had no idea what the side effects would be for me. Or, I knew the likelihood, but not the severity. So naturally, the next morning was the only time we could do an interview with friends who were in town. I was a mess, so it’s good that we were just audio in those days, but holy hell is that ever NOT a way to discover how a medication will affect you!

This situation will be different because, unless my meds react poorly with one another, I’ll mostly just be dealing with pain. Which is not ideal, but it still should be fine, more or less.

I just…how do I get myself into these things? #becauseicantsayno

Dealing With A Diagnosis

I read this thing on FB yesterday, and while the first line was something I could sort of relate to, the majority of the rest of it was not.

The opening line had something to do with there being certain moments in your life you would never forget – when you realized your husband was about to propose, the birth of your child, and being told you had MS.

Now…I don’t know about those first two moments, per se, but I imagine they are fairly unforgettable. And I agree that I probably won’t forget receiving a diagnosis any time soon.

But the whole rest of the post was so different from my experience that it’s almost funny.

Optic neuritis was the writer’s flare up which led to her diagnosis, same as mine.

She received a phone call; I was sitting in my neurologist’s office.

She’d waited a whole four days to find out why she couldn’t quite see out of one eye. I waited the better part of a year, which was still obscenely quick for an MS diagnosis. I lucked out in that all of the specialists had an idea of where my path was leading, and knew what to look for.

She collapsed to the floor sobbing and picturing wheelchairs; I went to work for the rest of the day.

Her husband held her like he’d never held her before; I dealt with it on my own, alone.

Mind you, I’d also done a ton of research. As soon as the possibility of MS came up, I went online and started reading about all of the horrifying things the disease can do to your body, but I also started looking into the 3 first line medications my neurologist told me he’d be considering if MS turned out to be what we were dealing with. I went into various forums and learned first hand what other people experienced with each one, and how they dealt with the side effects.

I even watched a video of someone giving herself an injection, but I was pretty sure I would be going the pre-mixed Pen route instead.

Anyway, there was one appointment when I thought the neurologist was going to call it, and I took the day off work, just so I’d have time to process. He didn’t, though, so I had a decent enough day off from there. The day he DID call it, I actually wasn’t expecting it, so still felt a glimmer of shock roll through me at hearing the actual words.

Then all my research brain stuff kicked in, and I told him which medication I’d decided to try first. He was super impressed that I already knew so much, and we filled out the application form right then, which he faxed in from his office. I was learning to do my first injection within a couple of weeks, I believe.

I asked a friend to come over for the injection training session, in part to help keep the kittens out of the way, and in part to help me remember the steps for when I would do the next one on my own. Probably also just so I wouldn’t be alone. Nurse Billy wasn’t the most comforting presence ever, to be honest. I dealt with the side effects alone, however. And they sucked. But I got better at it once I knew exactly what I was dealing with.

I remember Tim went ahead and set up a brunch/interview/chat with some filmmaker friends for the next morning. I was so mad – I had no idea how my body was going to react to the injection, let alone how I’d feel in the morning. I made it out, but hadn’t slept much and was still feeling many of the flu-like effects the whole time. I got better at managing the immediate and next day side effects, but man. A little consideration after that first injection would have been nice!

Anyway. Mostly I am glad that I can do these things alone, and don’t feel the need to have other people around me all the time. If I ask someone to go to an appointment with me, for example, or any of the tests I have to get done, I tend to focus on them more than on myself. I feel like I have to talk to them, entertain them, do something to make sure they’re not too sorry they came with me. But sometimes I don’t really want to talk. Sometimes I just want to wait until it’s my turn to get it over with and move on with my day.

Sometimes – most times – I’d rather just stay inside my own head for awhile, and not feel like I have to interact and be “on” all the time.

Do I think that makes me better than the lady who wrote the post about being a mess and having a large support system? Yes, yes I do.

Haha

Not really; it’s just different. Part of me is mortified at the thought of not having the time and space to process things on my own. But part of me is jealous of that level of support and help from other people.

Above all, however, is the understanding that I chose my own path, each and every time, for better or for worse.

The fact that I am mostly successful in making it work for me is what makes me awesome. Well…one of the things, at least!

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.