Archive for April, 2012

MS Camp!

Written by on April 24th, 2012 – No Comments

Hi I am Amanda and this is my bloggg 🙂

THE WEATHER IS GETTING BETTER!!!!!! This means two things: symptoms caused by unbearable heat AND CAMP!!!!!!!!! 😀 😀

So hi everyone!  I have been MIA for awhile for many reasons (thankfully none of which are health related) but all of that you will definitely hear about (and if you are in Toronto and reading this perhaps you can even catch the plays I am involved with? Lol) later, today I gotta talk about my favourite week of summer: MS CAMP!!

You are probably thinking “MS camp? Lame.” If this is what you are thinking I guarantee you are not only wrong, but maybe also a little bit confuzzled, because MS Camp is actually the best. It is so amazing that I become this inarticulate pre-teen when describing it.

This is how I see it, when you go to camp you can just be. You can meet a bunch of people who know EXACTLY what you are going through. My friends from camp know me. They know me better than some people I have known for years and most of them I can only see at camp. They understand your frustration and your angst and your rage towards MS because they have it too, and the best part is you never have to talk about it if you don’t want to. You can just have fun, without feeling like you are misunderstood if halfway through an activity you are just too tired to continue. (more…)

We’re In This Together

Written by on April 17th, 2012 – No Comments

Recently, I attended the annual general meeting for the Lower Mainland Chapter of the MS Society in BC. Part of the meeting included an education series and I had the pleasure of hearing MS research scientist, Dr. Helen Tremlett speak about her work.

During Dr. Temlett’s studies, she received training about which drugs would treat which illnesses. When they covered MS, the instructor said that there weren’t any drugs (at the time) and they didn’t know how to treat it. This piqued her interested and she wanted to know why this was. Her curiosity led her to pursue a career as an MS researcher.

Dr. Tremlett came to Canada from the UK after receiving a research grant from the MS Society of Canada. When she left England, she told her mother she’d be gone for a year-that was 11 years ago. Today she has a research team of 18 people working under her direction at the University of British Columbia. Her team is made up of the best and brightest minds from around the world, including countries like Iran, India, Taiwan and her work is now fully funded by the government of Canada.

I wish everyone with MS could hear Dr. Tremlett speak about the research she and her team are doing. She is warm, funny and extremely passionate and excited about the work she is doing. I think it’s uplifting and inspiring to know we’re not alone in fighting this disease. There are amazing individuals in laboratories all across Canada who have dedicated their lives towards not just finding a cure, but also working hard in the meantime to improve the lives of those of us who live with MS. I for one am deeply grateful.

 

Bitten By the Med That Keeps Me

Written by on April 10th, 2012 – No Comments

Recently, after having a malfunction of my auto-injector, I experienced a known, but mostly rare side effect of Copaxone, called an immediate post-injection reaction. (Or IPIR.) Within 2 minutes of removing the needle from my skin, I started to feel like I was overheating. My face went beet red and I began to feeldizzy and nauseous. I sat down in my studio and closed my eyes, willing myself not to get sick. I began coughing because I had trouble breathing.

I knew immediately I was having an IPIR, but that didn’t help how scared or  helpless I felt in that moment. When you’re home alone and your body is freaking out, it’s hard to hold onto any sense that you’re going to be okay.

According to all the warnings about IPIR I’ve read, it’s supposed to last about 15 minutes and then blow over. My symptoms dragged on for an hour or so and eventually, I crawled into bed, shivering. I slept for about 4 hours. When I awoke, it was over, but I felt pretty drained.

Now the biggest hurdle is mental. I’ve been through this once and I certainly don’t want to experience it again. I called a friend who has also experienced IPIR, just to compare notes and to gain some reassurance that I shouldn’t have two IPIR experiences back to back. (Hopefully!) She laughed when I said “I am *SO* over this whole MS thing!” I laughed too-what choice do I have?

I’m climbing back on the horse, so to speak, alot more leery and a little more wiser. Some days this disease kicks my butt.

 

Do you want my opinion on CCSVI? Why – when it will just be judged and used against me?

Written by on April 3rd, 2012 – 1 Comment

The most sensitive subject in the past 2 years, CCSVI!!!  I’ve kept a neutral position on this topic as I realize it’s a personal choice and each to their own!!! I wish other people (with MS and without) could learn this opinion.  Why is it ANYONE’S business whether or not I choose to do the surgery?! I’m all for raising awareness and education amongst people, but the bottom line – IT IS MY DECISION!!! I’m tired of all the looks I get when I share that I’m “neutral” on the situation.  I know people it has worked wonders for and I know people it didn’t change a thing and I know people that it worked for in a 2 week period.  Again, do I judge them for what they chose? NO, where do people get off thinking they can judge me (or my family and friends).

I do realize that often people just care, but there are other ways to show you care besides sending people with MS articles and “proof” of this surgery.  Do I have an opinion about this procedure? Absolutely!!! Do I feel I need to share it with the world? No! There is nothing satisfying about proofing people wrong OR confirming people’s opinions … I prefer to remain where I am “on the fence”.   Am I satisfied that finally there is some more research and follow up going on? Absolutely!

One thing remains the same through all this; you live with your decision so make sure it is that … YOUR DECISION!!!!