Neurologist-neursmologist!

So I had an appointment today with my new neurologist. The last one I was seeing, well let’s just say we didn’t exactly see eye to eye. He was super dismissive and made it seem like everything was just in my head.. I mean it is literally in my head, the whole brain lesion business, but you know what I mean! So I recently changed to a newer doctor at the MS clinic I go to and I saw him for the second time today. First of all, I wasn’t even sure if it was him when he called my name because he’s grown out his hair to resemble a middle aged Justin Bieber, which was a surprise, but his flowing locks aside, it wasn’t the most productive feeling appointment.

I’ve started to wonder if every neurologist actually has a stick permanently placed up their butts. Now I’m not sure on this, but I think it’s quite possibly a secret requirement to become one. Maybe in medical school potential neurologists are required to place said stick up there to join the club, and to encourage them to look constantly annoyed. Or maybe it happens after a few years of doing the job. It’s hard to say. But I’m sorry to say it, but I don’t know if I’ve ever met one that didn’t seem to fit this description!

Today wasn’t that much different than any other time I’ve met with a neuro, except maybe this one’s stick is slightly shorter than the last one’s, but he still definitely has one. It’s just disappointing to wait for so long to see someone and then leave with unanswered questions. I know he’s better than the alternative, which is a grumpy older man who clearly doesn’t enjoy his work – or people in general… But one thing they all seem to have in common, is giving that look of I’m not really taking you seriously. Brushing past any concerns without really addressing the problem. Sometimes really all someone is looking for is a “yeah, that can happen”!

It’s a strange experience to have a chronic illness and need to be followed by a specialist. At least it has been for me so far. For me it’s been just a guy I wait for months to see, for ten minutes tops. They’re basically in charge of the big stuff, but have barely gotten to know me! The last guy didn’t even learn my name and would just call me slugger, or kiddo. That’s probably the first time I’ve been a slugger!

Anyways, I get it’s not an easy job, and some of them do a lot to help, but at the same time it’s not easy being a patient either, and sometimes I think they forget that. I mean, would it kill ya to smile! ;)

In other news, I started a “mindfulness meditation” class today at the same hospital with a group of other MSers, which I think is going to be interesting! So I’m looking forward to that.
That’s all for now, off to research the stick-up-butt requirements. Which now that I think about it, could actually be a dangerous thing to google…

M

Is this real life?!

Let just be honest, MS fatigue is a real bitch sometimes. I think It’s one of those things that most people don’t really understand about MS, or know it can be a part of it really. I’ve been dealing with this lately and I just think it’s something I want to talk about.

For the past week or so I’ve felt really out of it. I mean I always have a really foggy feeling in my head, but I’ve been beyond exhausted, which is something new for me. It feels like I haven’t slept in a week! It’s a bit hard to explain, because it’s different then just feeling tired, it’s like a full body as well as a mental fatigue. I’m a bit like a dizzy zombie bumbling around these days (again, great practice for my future “Walking Dead” fame and fortune!). It’s also TIFF right now, which is actually the main thing I’ve been leaving the house for, because I’m stubborn and don’t want to miss any screenings I have tickets for!

The fatigue kind of varies throughout the day in intensity for me, and some days are worse than others. Like today is particularly bad, I don’t know how I’m going to make it to the screening I have later, but I want to, so this is where that stubbornness kicks in! I’ve been really excited for this movie for a while now (what we do in the shadows, look it up!) so I’m gonna go anyways. I never know when the actor/directors are going to be at the screenings, but I’m hoping Jemaine Clement will be there today so I can convince him of our meant to be best-friendship. He’s obviously missing out. I’m a great time..when I can stay awake :D

After that, I think I will spend about a week sleeping.

M

Update: Met Jemaine. Great movie. Worth it.

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2 years, and counting.

So, as you may know, if you know me, or read this blog, around this time in 2012, I was officially diagnosed with Relapsing Remitting Multiple Sclerosis. I spoke about this most in my very first post. I’ve jokingly been calling this my MSaversary, (which personally I think should really catch on). The past 2 years have truly been a roller coaster ride – I think I actually understand what people mean when they say that now. There’s been  a lot of ups and downs, a lot of emotions, and worrying about the future. Sometimes so much so I’d forget to focus on the present. Time both flew by and stood still at times. Some of hardest times of my life so far took place in these 2 years. There’s been a lot of change, a lot to get used to. Reflecting back, there are of course some things I would’ve done differently, but I think it’s important to learn from that, and to move forward, and really to just be glad we got through it!

Being diagnosed, was a scary and confusing time. Since then, well.. there’s still been a lot of scary and confusing times really, but I think maybe certain things feel less scary as time goes on. Like having to go to the hospital sucks, but doesn’t scare me nearly as much as it used to. I’m a bit of a pro now actually! The thing that’s been toughest is that it’s so unpredictable. Just when I think I’m starting to get used to it, something new pops up to confuse things! It makes it hard, but I’ve definitely come a long way in learning how to deal with that part of it. I try to just take it as it comes and not get worked up about the unknown. That’s not always so easy, but there’s not much else you can do, you just have to get through it, and be thankful for what you do have.

It’s been a long process, but I think I have finally come to accept that I have MS. Now this doesn’t mean that I’m happy about it, or that I claim to have it all figured out, but I no longer have that feeling deep down that maybe it was all a big mistake, or that things might just somehow go back to how it was before. I get that now. It’s a part of my life wether I like it or not, and I think I’ve come to understand that. When I was first diagnosed, I didn’t want to talk about it. I didn’t want to leave the house, really. I was scared someone might ask me about it, or judge me and see me as a lesser person now that I was “sick”. I don’t really feel that way anymore. At least not usually. Pretty often I get asked how I injured myself, because I’ve been using a cane to get around since my last relapse, and that’s what people assume. I don’t shy away from saying that I have MS anymore, because although that person probably has no idea what that means, maybe now they’ll look into it a bit, or ask me more about it. If I can eventually get more people to understand what MS is, then I feel like I will have done something right! This has started to become a bit of a passion of mine, and I hope to work more in the MS world to advocate for myself and others, and spread the word. I mean, why not? I think starting this blog was a positive step for me in that way, because no matter how many read it, I feel like I’m giving an honest account on what it’s like for me to have MS, and I think that’s a good thing! Why not talk about it? People should know that there is struggle, and it’s hard, and it sucks sometimes and life would of course be easier without it, but we’re all just trying to deal with the cards we’ve been dealt. I think thats really all we can expect anyone to do.

From the time I’ve spent researching, thinking about, and speaking to other people with MS during the past couple of years, I’ve come to the conclusion that the key to succeeding in life with it is determination. You have to decide what you want to achieve, and fight for it, because its probably not going to be easy. Things aren’t as cut and dry as they once were for me, though maybe it didn’t seem that way at the time, it really was all so simple! A lot more goes into each and every decision I make now, even little things I probably used to take for granted. Sometimes in past two years I think I’ve shied away a bit from making decisions because of that. I don’t know what the future holds for me. I don’t really know everything that’s worth fighting to achieve just yet, to be honest. But What I’m determined to do right now is figure that out! And to find the things in life that make me happiest.  

So two years later, and maybe not too much wiser just yet, but trying damn hard to get there ;)

M

How rude.

Sometimes, my body can be a real jerk. I mean I myself am of course a lovely person, but that body of mine.. that’s another story! I’m sure it sounds strange to be referring to my body as something separate from myself, but to be honest, when it does things you can’t control, sometimes it can feel that way!

Right now, my body and I are just not getting along, because lately, it really doesn’t want me to have any fun. I try and make plans to go out and meet up with people, try for a little while to forget about all of the trouble it’s been causing me, and my rude body just has to remind me that it’s not that easy, and it aint gonna happen.

It seems that my body only wants me to stay at home and watch Netflix right now.

At least we have our new found love of The West Wing in common.

M