Success! 

The first ever MS Can’t Stop Me young adults conference took place this weekend, and I was so happy to be a part of it! Being the first event like this, it was a bit smaller, almost like a trial run of it with about 30 or so young people in attendance, but it was really great! I met some really awesome people, with or affected by MS. There was an amazing feeling of comraderie and inclusion the whole time, and I was so thankful to be there in the midst of it. 

During the conference we had some great speakers, and I was lucky enough to be a part of a panel discussion. It was my first time really speaking like that on MS related issues, and it felt really good to be a part of it. It was such a great weekend, tiring, but worth it!  

I’m really hoping that this will become an annual thing, maybe even on a national level! It’s so important to make young people with MS feel like they have a community, I could just see it on the faces of the people there, and so many mentioned to me how much it meant to them. 

Fingers crossed!

M

World MS day

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Today is World MS Day. This year, we are asked to share what makes us “stronger than MS”. For me, what makes me feel strong are the people that support me through it everyday. First and foremost, my family, who I would never have gotten through the past few years without. Supporting me through every hospital visit, every doctors appointment, and every bad day. My friends, the ones that stuck around and continued to remember that I am still the person I always was, even though I may do things a bit differently now. Also the new friends that I’ve met because of my MS, who I am so very thankful for. My boyfriend, who makes me feel like it’s okay when I’m not up to doing something we had planned on, and understands no matter what, reminding me that it’s not my fault. These people all make it so I feel like I can get through it even when I’m at my worst, and remind me that I have to fight, even when I feel like I can’t.

For them, I try every day to be #StrongerThanMS

M

MyStory 

  

Back in the summer, I helped put together the filming of a great video project with the MS Society of Canada, aimed to reach out to young people with, and affected by MS. We shot these at my old film school with the help of some great volunteers, and I was really happy to be a part of it. I was able to do a few of the interviews, and was even on camera a little bit myself, which is not my usual area of expertise! 

The campaign finally launched today, and I’m so proud to be able share it with you all! One of the first videos being featured is the story of Billy Talent drummer Aaron Solowoniuk (https://youtube.com/watch?feature=youtu.be&v=zG3CKDhlDLs) but there are many more to come, and all being hosted on a great site that my very own brother kindly volunteered his time to create (http://mystory.someonelikeme.ca)

Please check it out, and share with anyone you think may benefit from it!

M

The joy of neurologists.

Fair warning, this is going to be a real ranty post. It’s just been one of those days!

I had an appointment today with my neurologist, and I’m just more frustrated than I can even explain right now. I don’t remember the last time I’ve been there and not left in tears. Probably because there hasn’t really been one..

Today was another pretty awful experience. Not only did the doctor make me feel like he was chastising me for contacting the clinic to ask questions, or for bringing up my “many symptoms” when I see him, but when I brought up the idea of changing meds, he tried to just shut me down before even discussing it. We talked about this the last time I saw him and the same thing happened. Now 6 months later, and I’ve continues feeling really unwell, just so run down all of the time, so I was determined to bring it up again.

The conversation didn’t really start well, but thankfully I had my father there with me today for support, and I’m glad I did because he was able to push the matter a bit more when the doctor tried to just dismiss my concerns. We talked for a while and went back and forth and it basically ended with him saying that it’s my decision, though he warned me it could be a risk going off of it in the time I would need to start something else. In the end he sent me to speak with the clinic’s nurse about my options. Now this is where it gets even more confusing. When speaking with her, it came out that I should be stopping the meds I’m on right now anyways, at least for a while, because my lymphocyte count is way too low. Now my last blood test was almost two months ago, and this is where she is getting the latest numbers, so my question is…why hasn’t anyone seen my results in that time? Shouldn’t someone have told me? And why is it that when I asked the doctor about changing drugs, did he not notice that he should be telling me that I needed to stop taking it. He even discouraged me from the idea of stopping for the amount of time I would need to in order to start another medication..but.. Now I have to stop anyways… WHAT! This has all left me with little faith that anyone in the medical world is looking out for me at this point. I kind of feel like I would be better off monitoring my results myself.

Now I’m sitting at the blood lab, waiting to have another blood test, which I now have to do every two weeks until my levels even out, and then I can decide which drug to take. It sort of feels like I’m on my own to figure out what the best way to go from here is…

Anyways, I really needed to get all that off of my chest. But now that I’ve calmed down a bit, I’m trying to shake it off, and am planning to just try to keep things moving, and possibly look into switching to another hospital to get away from the negativity I’ve encountered at this one.

And now I’m going to try and just focus on more exciting things, like my upcoming trip to Montreal!

Deep breath!

M

The singing MSer?

Now I wouldn’t say that having MS in itself feels very positive most of the time, but there are definitely some positives that have come out of my diagnosis. Before MS, I really allowed fear to hold me back in many areas of my life. I kept myself in a comfort zone, and was too scared to push myself outside of it. With all of the hard parts of having MS, the biggest positive has definitely been the feeling of wanting to push myself beyond that comfort zone, and try new things! One of the things I had always wanted to do, but allowed fear to hold me back from, is singing. Singing was always a sort of secret passion of mine. It was something I had always wanted to do, but was too scared to try. In high school friends of mine took a musical theatre class that put a play on each year, that I always wanted to take part in but was too scared to sign up for! I’ve always had a bit of stage fright, and avoided it because of that. But some time after I was diagnosed, and was feeling stuck and unproductive, I wanted to find something that would excite me again, something that would bring some happiness to my life. This was the time I started taking singing lessons. I wanted to try and get myself more comfortable with my voice, to learn how to control it, and maybe even one day sing in front of other people! I met a wonderful woman who would become my singing teacher and friend, and I’ve been taking lessons with her ever since. I even joined a singing group she started that meets every week, which was a big step for me as far as singing in front of other people goes!

Earlier this week, my singing teacher asked me to sing back up vocals for her with another student of hers at an upcoming show she’s having, performing her original songs (which are beautiful by the way! Check her out on iTunes- https://itun.es/ca/jAqV1 ). This is a huge step for me, and while I’m still terribly nervous, I’m also really excited, and feel proud of myself for even agreeing to do it! Lately I’ve been struggling a bit, this winter hasn’t been kind to me and I’ve been sick a lot, and just feeling really run down. Feeling this way can sometimes make it hard to see past the negatives of MS. It can be tough to stay positive. It’s hard not to get down sometimes, but stuff like this performance really helps to remind me of all of the things that having MS has brought to my life, and encourages me to try not to focus on just what it has taken away.

M

Merry Sickmas to me!

So Christmas has come and gone once again, and unfortunately this year I spent most of it pretty sick, hence my witty title ;)
The holidays have been a bit frustrating for me this year so far because of this.  Having to back out of plans at the last minute because of being a sickie, does not make me a happy camper. The main thing I was upset that I couldn’t do was Christmas dinner with my boyfriend’s family, which I was really looking forward to. Instead I spent the night on the couch, eating soup by the fire and feeling a bit bad for myself. Merry Christmas to my box of kleenex!

It’s hard not to get a bit mad at my body in these situations. I can’t help but blame my MS for my always catching colds and getting sick so easily. The meds I take are definitely not helping that, when they are meant to suppress your immune system, you’re not left with much to fight off any incoming germs. It’s upsetting because its just yet another time that MS has come to bite me in the butt… okay not literally, but let’s just say that my MS and I are not on speaking terms right now. My MS needs some time to think about what it’s done and apologize for it! Thankfully everyone has been understanding so far about the situation, because when I’m sick, it’s more than just the cold that is holding me back. All my MS symptoms act up a bit more than usual also. So I’m a little extra spasmy and foggy right now. Not to mention the lack of energy and leg issues.

I really just want to be better in time for New Year’s Eve, because I’ve been looking forward to spending it with my special someone for the first time, and I want to be able to get out and celebrate the start of a new year, leaving behind all of the craziness of 2014!

Keep your fingers crossed for me, bloggies!

M