Archive for the ‘Awareness’ Category

All posts in Awareness category.

syringe

April 10, 2012 | 10:58 AM

Bitten By the Med That Keeps Me

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.

 

Ccsvi-3

April 03, 2012 | 10:58 AM

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

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!!!!

Spicy

January 31, 2012 | 12:01 AM

Reaching a boiling point FINALE

So I must confess, watching Dexter as often as I do is what sparked this three part blog. I liked the idea of suspense :P .. I have been thinking a lot about who I am and who I will become-all the time forgetting that the only one who can change my course of life is me. I often give agency to others-I let other people’s experiences cloud how I picture my life developing, and this is probably because I just don’t want to face my reality and I would rather know how things will work out-even if it is based on someone else’s account. But the truth (the scariest thing for me to admit by the way) is that there is still a lot I don’t know. There is still a lot I have to discover-about myself, about my MS-and all I can do is try my best to take charge of what I can and stop worrying about the rest. Read the rest of this entry »

January 26, 2012 | 12:01 AM

Metal Head

My teeth have always been slightly crooked and rotated and that’s always bothered me. I had an orthodontics consultation when I was in my early 30s, but true to form, I didn’t pursue it. A year after I was diagnosed with MS, I decided to get braces and straighten my teeth. Now that I’m averaging a brain MRI about every 6 months, what could be better than a mouth full of metal? Read the rest of this entry »

January 24, 2012 | 12:01 AM

Reaching a boiling point PART TWO

Hi I am Amanda and this is (the continuation) of my blog :)

Now where was I? Oh yes, masking MS. I have another person to tell you about. This person too hides their disease, but is not that good at it anymore. This person in question has loved with MS for a long time and has gone through a lot of changes-and not just ms-related. This person was left without a family, who left for reasons I have not been informed of other then that they had something to do with this person’s MS. Read the rest of this entry »

January 19, 2012 | 12:01 AM

Self-Care

If you’d asked me 4 years ago, how I looked after myself, I don’t think I would have had a clue what you were talking about. As my health (and by extension my life) changed with the diagnosis of MS, I had to start considering how I would deal with the stress of living with an unpredictable, life-altering disease. It was time to develop some self-care strategies.

The term “self-care” refers to activities and practices that we do in order to maintain and enhance our overall health and well-being. It’s small, mindful things you can do to be kinder and gentler to yourself. Read the rest of this entry »

January 12, 2012 | 12:01 AM

New Research

I am Amanda and this is my blog :)

I was recently in the news (no big deal :P ), but really I am just using being in this story as an excuse to share some very important info. This story was not about me-well any more then it is about any of you living with MS. If you were diagnosed early in life-especially at Sick Kids-you might want to read this, or maybe you saw the news report already. Read the rest of this entry »

Trinabio-2011

December 15, 2011 | 11:14 AM

My Speech: Part 2

However, as is often the case in life, out of the negative has come some positive. These past few years, I’ve been overwhelmed by the support and kindness of family and close friends. That my husband drags himself out of bed at 6 some mornings to help me with my injection before I leave for work, or that my friends work so hard to raise money for the MS Walk on my behalf, tells me that I am loved. I am forever grateful for this.

I’ve also learned to live as we all should, by enjoying today. When I was first diagnosed, the only way I could get out of bed in the morning was to say to myself, “Today, it’s okay”. Two and a half years later, I have taken that a step further. Read the rest of this entry »

Trinabio-2011

December 13, 2011 | 11:09 AM

My Speech – Part 1

I recently had the honour of speaking at the endMS Gala in Toronto. Here is my speech.

I work as an elementary school teacher. For a few years my school participated in the MS Read-A-Thon fundraiser.  The Read-A-Thon campaign starts with a kick-off assembly. Volunteers from the MS Society come and explain the disease in a simple way to the students. During one assembly, I remember thinking, “That is a terrible disease.” That there is nothing wrong with your foot, but you can’t move it because your nerves can’t properly relay the message from your brain to your foot; that is terrible. Each year during the event itself, I dutifully encouraged my students to read, felt sad for people with MS and, as we all do with things that don’t affect us directly or indirectly, I put it out of my mind and went on with my life.  Fast forward two or three years and I was in the neurologist’s office. Read the rest of this entry »

December 01, 2011 | 9:00 AM

Cape or Glasses?

Cape or glasses, decisions decisions!

I am known among my friends for being the quiet, reserved, and responsible one. I am the Clark Kent of the story, not Superman (or woman in my case). It is not usually in my nature to be loud, or attention seeking. I am routine oriented, organized and thrive in structure. MS is anything but these things. It’s like this disease lies in wait for you to make plans then mocks you and forces you to change everything. I swear I am only mildly bitter! I don’t get mad though, I get even; at least my version of even.

When I was first diagnosed with MS I felt like my world was spiralling out of control. I couldn’t control my legs, I had appointments all the time, important decisions I didn’t feel ready to make. At 21 I had a hard time coping. So I thought I would control what I could. I started dying my hair. I naturally have dark blonde hair; this would prove to be a very useful canvas. Read the rest of this entry »

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