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!

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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.

Too Much Of A Good Thing

I don’t know, guys. I am not feeling great on any level these days, really.

Do you ever get a little overwhelmed with life, but realize it’s kind of your own fault for wanting to do things you like to do, even if there’s not enough time, money and/or energy to do them?

I’m still trying to recover from Sunday’s massive CSA night. It’s now Friday, and I’m still so exhausted that I trip over nothing – nothing but the fact that I just didn’t life my foot up high enough while walking! What the hell is THAT about?! I mean, technically I know what it’s about, but at the same time, seriously? I can’t consistently lift my feet enough to walk? That goes beyond simply dragging my feet. It’s a level of constant fatigue that I’ve not known long enough or often enough to be used to yet.

Tonight is the usual Friday night Date Night with the girls (and possibly Austin), but it’s also the beginning of Toronto Comicon weekend, for which Mind Reels has been granted media access. This year it’s for the entire weekend, which we’ve never had before, and I’m crazy excited about that! Yet part of me is also, like, when am I ever going to sleep again? Comicon all weekend and then back to work on Monday.

That’s not to say that I don’t sleep at all, merely that I haven’t gotten enough sleep in a very long time. I’m not even sure it’s possible to get enough, really, as this whole disease and MS medication combination has made days much harder to get through than I remember them being. For the most part, it’s totally manageable, but the problem comes more when a)I’m sick or have recently been sick, and b) when I overdo things to the point of making myself more tired than usual. Everything takes longer to recover from now. I am still fighting the sinus cold from two weeks ago (I have just started getting a hint of my sense of smell back as of this morning), for example. And because I’ve had long days every day since Sunday night’s CSA gala, I haven’t had a chance to get enough rest to get back up to my normal level of tired. Throw in a time change and I’m kind of a mess.

I might be running mostly on adrenaline, really, because so much is happening that I am excited about and eager for that I have a hard time slowing down. The less spare time I have to do other things, the more I try to fit them in. I got some wool and felting needles last night after work. But when I got home, after all the regular things were done, I had a billion dishes to do. So that was my night. I got the supplies, but pretty much put them away as soon as I got home, because there wasn’t any time left to experiment with them. Even then, I was still in bed later than I would have liked, so today has been a bit more of a struggle so far. BUT it’s also really busy, so I’m ploughing through as best I can. The urgency of being busy keeps me going.

But it also stresses me out.

It’s weird to be so excited about so many things, but to also be so stressed out by those same many things. It’s like an emotional roller-coaster, but more of an invisible one, or imaginary one, because I’m still doing things. I’m still happy to do things. And they are mostly all things I want to do, not just have to do. I even enjoy most of them.

Every so often, though, I have to check myself and go, “Why are you so upset right now? How can you be happy and upset at the same time, about the same stuff?”

Sometimes brains don’t really make much sense.

Is It Just Me?

Sometimes hats give me headaches.

Sometimes ponytails do, too. Or did, when I had long hair. Possibly will again now that my hair is longer than it’s been in well over a decade.

Does anyone else ever have weird things go on with their bodies, but because it happens all the time to you, you find yourself wondering if you’re the only one, or if people just don’t mention it in casual conversation?

Like, not weird like a third nipple or extra digit or anything like that. Just odd aches and pains or other sensations that seem to have no obvious root cause. I remember reading a book when I was younger wherein a character – I think a teenaged boy – walked down a hallway at night, and reference was made to his toes popping. My toes totally used to pop all the time – possibly still do, but either not as much or I’ve just gotten so used to it that I don’t even notice anymore – but that was the only reference I’d ever come across in the general public. I don’t even know why they popped so much back then – is it a growing thing, or something? I don’t even know. As far as I could tell, until I read that book, I was the only person on the planet with toes that made popping/cracking sounds as I walked. It was just never spoken of before, nor since, really, whether it was weird and unique or not.

I’m thinking it’s a pretty common thing, though, if it was mentioned briefly in a book.

I’ve felt for a long time that bodies are just plain odd, and that there is still more that we don’t know about them than we do. Or maybe “odd” is the wrong word. Maybe I mean more complicated and unpredictable. It’s kind of remarkable that we all look basically alike, as a species, and yet there are literally billions of differences. Maybe even countless differences. We don’t all grow the same, parts don’t all work the same, things don’t all develop the same way, and then there are all the things that can go wrong throughout the course of a lifetime.

Having MS has introduced a whole new equation into my relationship with my body, too. For the most part now, when something different happens – some new pain, tingling sensation, numbness, vision problems – whatever the issue is that’s been introduced, my first thought is that it must just be an MS thing. For the most part, it’s all little things, temporary things, but my go-to explanation is MS.

Which…hopefully I don’t dismiss any symptoms of something else as just an MS thing! That has the potention for badness. So far, however, I’m usually floating between “it’s an MS thing”, or “it’s a my wacky body thing”, or sometimes even “it’s happened for as long as I can remember, so it might just be my body, or maybe I had MS the whole time and it’s always been an MS thing”. Who knows, really?

It’s funny, though, when a thread of commonality is found with another person, the sensation of relief, and humour and just momentary connection that’s made in that instant of recognition. That vocalization of “oh my God ME TOO!” holds so much emotion and connection in just a few simple words, and creates a bond of similarity between two otherwise different beings.

I have a ton of such little things, aside from the popping toes. Most of them involve pain, because that’s more noticeable and easier to remember when blogging. Examples include: if someone makes me laugh while I am eating, I invariably end up with a piercing pain at the back of my jaw – where my upper and lower jaws hinge together, actually. Like, horrible stabbing pain. Sometimes when I am walking I’ll suddenly be struck by pain so awful I wonder if my toes have actually all broken right off, and are just kept on my foot by skin and my shoes. In my mind, I picture them flapping uselessly, and painfully, in my sock. It’s so bad I end up with a pronounced limp until the feeling passes. Often for no reason I can think of, a stitch of pain in my side or across my chest will hit hard and fast, and be so bad that I can not draw a full breath until it passes, as well.

In the not painful but super annoying category, I sometimes experience a sudden ringing in either one ear or both, and usually it’s so loud that I actually can’t hear much of anything for a few seconds. It always fades quickly, though. A drive-by ringing. And for as long as I can remember, whenever I’ve had a certain level of nightmare, a muscle somewhere in my mid-lower back goes into spasm and not only wakes me up, but takes a concerted effort to calm down enough that I can stop my back from arching. I long ago began to equate that sensation with terror, so even when I’ve gotten a massage before, I’ve had to tell the person to stay away from that area of my back entirely. I can’t tell exactly where the muscle is, and by the time I realize it’s close, the muscle has been triggered and it feels all manner of not good. So brutal.

Has anyone else noticed that it’s very difficult to hear anything when you’re yawning – almost like being under water? Or is that just me?

I’m telling you – bodies are weird! And living inside them is an adventure and a half, whether we asked for it, or not! And we’re all doing it differently, with tiny sparks of common experience thrown in for good measure. I think we even experience feelings in different ways, just as we all process information and the world around us from differing perspectives.

And there are billions of us. No wonder we can’t get along, so hung up on difference as we are. The human race needs more “OMG ME TOO” moments in our days, methinks.

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. 🙂

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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.