Anybody that knows me, also knows that I am a HUGE fan of TEDTalks. If you don’t know what TED is, it’s an international organization dedicated to spreading ideas and innovation around Technology, Education and Design (see what they did there?).
One of favourite recent talks is one by comedian and disability advocate Stella Young. In her talk, Stella talks about experiences she’s had in her life that have led her to see that in today’s society, disability is being objectified as a form of what she calls “inspiration porn”.
Being in post-secondary can be a very stressful time – so trying to figure out to manoeuver one’s MS diagnosis at the same time can make it even more difficult, especially if a flare-up hits at an inopportune time.
Luckily there are many services available to post-secondary students available at universities but at times it can be difficult to try to figure out where and how to get said services.
On September 20th, the Multiple Sclerosis Society is hosting an event titled “How will they know what I need? Accessing disability services post-secondary” at York University. Students with MS and their families are invited to participate as different services are talked about by staff.
I’ll also be speaking at it briefly about my experience in post-secondary with disability services and navigating the system.
I invite you all to this orientation and lunch. I’d love to see you all there.
Register for the event here: http://mssociety.ca/toronto/events.htm#postdisablility
(Kits Beach, Vancouver, BC, Canada)
So a few months ago, you may have read my post about Taryn Lencoe’s 12 hour solo ocean marathon swim for MS. My husband has known Taryn’s dad since he was a kid (he was my husband’s swim coach) and we had crossed paths at Vancouver Open Water Swim (VOWSA) events, but the day I interviewed Taryn to write the post was the first time we’d met.
Taryn is a beautiful woman-she is warm and funny and has a gentle, thoughtful spirit that belies the fierce competitive streak that lies beneath. When I met her, I just wanted to hug her and by the time we’d finished talking, I did just that. You can’t help but like her instantly. (more…)
We all know that at times, with MS, it can feel like we are weighed down by it. Sometimes the simple things become more difficult and time consuming. So when can we feel completely free? When do we feel thoroughly uninhibited and free? Can we? The answers are different for everyone and I certainly can’t speak to anyone else’s answers but I can give you mine. For me, I do think I can be uninhibited and free. I feel utterly free in the water. Water is the equalizer for me!
I pose a question to you … WHEN do you like to be reached out to? How often? Do you prefer someone of the same sex? Does age matter? What are your main concerns? It seems like ages ago that I had all these same questions but I was on the other side of the line … I felt like I had no one to talk to.
I am part of a newly diagnosed group, and our volunteer role is to reach out to newly diagnosed individuals. Often I find myself wondering; am I pushy? Am I neglecting? Am I over bearing? Am I scary? A million questions float through my head.
I often find that the volunteer who has had MS for 10 years now is often as nervous as the newly diagnosed patient. Will I be good enough? Will I be able to answer all the questions? Will I come off like I am a pro at this? How can I show that I too was once unsure of the future, and that I still get scared when I have a relapse.
So newly diagnosed … what do you prefer when you meet someone who is more experienced with MS? And what do you HATE?
THANKS IN ADVANCE!
Like it or not, most, if not all of us with MS or NMO are on daily medication. Understanding how to use that medication properly to get the optimum benefit from it and avoid the risks of drug interactions is important. That’s where your pharmacist can help.
Recently, I switched pharmacies from one I had been using for 23 years to one closer to home. (I stayed with the same company, just chose a different location.) It took me awhile to make this decision because I had a history with my former pharmacy-the staff all knew me by name and the pharmacist understood my extensive drug allergies. I had always received good service from them.
The reason for the change was that the store was located right in the middle of a very large and drawn out construction project (the extension of our sky train line) and getting in and out of the area was becoming more and more difficult. The other issue was that the pharmacy staff were having their hours cut in some misguided attempted by the powers-that-be to save money, which meant I’d often spend upwards of a half an hour standing in line waiting to pick up or drop off my prescriptions. My time is valuable and between the commute and the wait times, it just got to be too onerous. I finally decided to make the switch. (more…)
I bought a new shirt earlier this month. It says “I’m not lazy – I’m physically conservative.” I tend to be on the lazier side – y’know little things like not wanting to get out of bed to answer a phone, stretching as far off my couch to reach my computer without actually getting up, frequently choosing the escalator over stairs.
But I’ve always been active – when I was younger I was in swimming lessons, and my mom would try to get me involved in basketball and soccer (that didn’t stick.) For 8 years I was enrolled in Karate, and that gave me a chance to exercise and get off my couch. I loved it, and even though it’s taken a back seat to my academics and volunteer work, I 100% intend on returning to it.
And my mom always made sure I was a healthy eater – lots of fresh fruit and veggies, homecooked meals as often as possible, limits on the amount of cookies and pop I could have.
But despite that, I’ve never been the healthiest person. I probably like McDonald’s a little too much, and may have some self control issues when a pizza or chocolate is placed in front of me.
However that all changed when I was diagnosed with Multiple Sclerosis. I realized that I needed to become more aware of my body, my health and really take control of it. This realization was by no means an instant one. I was diagnosed in July 2012, but it wasn’t until May 2013 that I realized how important it was.
Living on campus, and not having my mom looking over my shoulder led to me not being physically active… at all, and making poor choices about my diet. This led to me getting completely out of shape, and gaining a lot of weight.
I recently replaced my Medic Alert bracelet. For those of you who aren’t familiar with what that is, it’s a bracelet with a medallion engraved with my emergency medical information on it. It has a serial number that is unique to me on it as well as a toll free number that can be called by medical personnel (Paramedics, ER Doctors, etc.) 24 hours a day, from anywhere in the world. It gives them instant access to important information, if I am unable to communicate it for myself. (more…)
Hello darling SLM community!
Before I get into my post, I’d like to take this opportunity to congratulate all the MS-walkers! I’m so proud of you for taking the time to raise awareness; you’re such amazing people. I’m inspired by you!
My sincerest apologies for not getting a post out sooner, life has certainly handed me some ups and downs! In my last post I chatted with you about my most recent adventures to the MS Clinic at St. Mike’s hospital and left you with my plans for another MRI and a follow-up at the clinic in October.
Since then, I have completed the MRI, it came back showing two new lesions since the previous scan done in November 2013; the first lesion is 8mm and sits in the front right side, and the second is 6 x 3mm and sits in the back left side. Armed with this information, I attended an appointment with my first neurologist (not the MS clinic) who is of the opinion that the clinic is going to want to ‘upgrade’ my medication since the new lesions appeared within less than 6 months. (more…)
In my journey to figure out life balance with MS and in particular change how I manage life stresses my naturopath suggested I read a book by Gabor Mate: When the body says No, the costs of hidden stress. At the time we were discussing knowing one’s limits and I mentioning that I couldn’t always identify mine in certain situations (like at the gym during exercise) for which I then paid for later with negative results (MS related problems).
The book was extremely insightful to me in many ways as it discussed commonalities of people who had developed autoimmune diseases and cancers. The main commonality was taking on stresses beyond what a physical body could handle and in return not knowing one’s own limits/boundaries for managing stresses. This was my first encounter with reading material that related stress (whether is mental, physical etc) to a mind-body connection. The end outcome was that how we manage stresses impacted one’s physiology and over time could result in disease (if we weren’t managing stress well). (more…)