This crusader always has a plan. Sometimes even a back-up plan or two. ‘Type A’, highly organized, creature of habit, have all been words used to describe who I am. I like things well thought out and a plan that is executable. I had my future mapped out well before I graduated high school. I knew what I wanted to do for a living. I thought I had an edge. I had already figured out the elusive path I thought I would take in life. See where I am going with this? Oh the irony, a ‘type A’ planner ends up with the diagnosis of an unpredictable disease. The quote, “We make plans and God laughs” comes to mind. So how does a planner reconcile that certain aspects of life can’t be planned on anymore? With great difficulty and a lot of calming breaths!
Camp is open to youth ages 8-21 living with MS. It’s free! For more info, visit www.mssociety.ca/camp.
Have you ever gone white water rafting, kayaking or on an overnight canoe trip? Have you used a pottery wheel, tried archery, fishing or sailing? These are all things I got to experience at MS Summer Camp! The best part of it all is that every activity and adventure is made accessible for all campers! Everyone is included and helps encourage the others who are a little nervous about the new activities and experiences. The feeling of conquering a new adventure is priceless.
I’ve had the opportunity to be a camper as well as a Peer Support Leader at MS Summer Camp. I’ve felt the nervousness of going to a new place with people I didn’t know, but it was quickly to pass when I showed up to catch the bus to camp and was greeted with big smiles and hugs. Everyone is so accepting and kind! Great friendships form quickly at camp and are such a support throughout the years! Within the first night as a camper, it felt as though I had known the other campers for years. Everyone is very open to sharing their experiences living with MS and it’s a comfort in knowing that we are not alone. I was very excited to be able to return to camp as a Peer Support Leader and give a shoulder, an ear and some security to new and existing campers.
As many of you know who are parents, you don’t have MORE free time … you have LESS FREE TIME!
My blogs have fallen short
On January 24, 2014 at 4:24am, my beautiful baby girl arrived. Harper was 6 lbs and 8 oz and 19 ½ “ long. She keeps me on my toes but I love her more and more everyday! Thank you all for the well wishes and positive thoughts.
Thankfully, my MS also stayed in remission after I gave birth. I’m told this would be my highest chance of an attack, so we were ready for it. I had my mom and dad come stay with us for a few weeks to ensure I got adequate rest. Keeping my diet and health intact has been a task, but thankfully I prepared meals ahead of time.
All the times I have doubted what I’m capable of and if I could trust my body or not after my MS Diagnosis, were dismissed when I had a natural drug free labor and delivery (which were my intentions). I regained full confidence in what the human body is capable of.
Now if you’ll excuse me … I have a sweet baby to cuddle J
I never thought I could, but I actually did forget, for a few days, that I’m living with a chronic illness. I just got back from a two-week vacation in Tampa, Florida. Considering that Edmonton has been -25C and colder for the last few weeks, it was sure a nice break!
I’ve been struggling with my MS for the past 2 years, having relapse after relapse, trying one drug after the next, and nothing was able to get my MS under control. This past October, I decided to try a second-line treatment, because clearly none of the first-line treatments were doing anything for me. I started on Gilenya in October 2013, and what a difference it has made! I’m now going on 4 months relapse-free (previously, I was in the hospital getting steroids every 2 months – sometimes less than 2 months). All of the on-going symptoms that I have had for 2 years (balance, numbness, tingling, etc.) are fading away. I feel stronger every day. I stopped using my cane months ago, and now I can actually go for long walks, just like I used to before MS came along. I’m actually quite amazed!
What’s helped me through my pregnancy … if you’re thinking about getting pregnant! A few tips … take em or leave em.
Almost done my pregnancy and to my surprise, I was faced with something I didn’t think would be an issue; procedures done in the delivery room.
About a week ago, my OB referred me to see an anesthesiologist here in Saskatoon. I thought this was regular protocol, after discussing with other pregnant women – this is not protocol. However, I was happy to meet him.
I have thought long and hard about what I always felt was missing from Family Conferences or Blogs, etc. – it was someone who had MS prior to pregnancy. I wanted to know if pregnancy was an option, what my drug options were, my rate of relapse, EVERYTHING! I had no one to ask … so I reach out to anyone thinking about getting pregnant, feel free to message me … I wish I would have had someone who understood my questions and concerns.
Please keep in mind everyone has a different pregnancy, these 7 tips just helped me …
Tip #1: Meet with your OB and don’t hide your health history … they WANT to help you!
You may notice the name change from ‘TheFloweryOne’!
A couple weeks ago I visited my first MS clinic! I was referred by my GP during the ‘limbo – land’ stage to get a second opinion and to gather some general information for myself. At first, I was really nervous; the thought of seeing another doctor really put me off, but in an effort to get ahead of my thoughts and to centre myself I consulted my resources, you guys! I posted about my upcoming visit and asked for advice on what to expect. As always, in a matter of hours, I had stories, comments and words of wisdom that not only settled my nerves but also made me look forward to it; I’m so grateful.
St Michael’s, located right smack dab in the middle of downtown Toronto is a beautiful (and very old) hospital. Its MS Clinic is one of the largest of its kind in North America and is affiliated with our amazing MS Society. While it mainly focuses on diagnosis and treatment of the disease, the clinic also participates in research and clinical trials; everyday they’re a step closer to a cure! When I first got to the hospital I had some trouble navigating my way around, the dimly lit halls made it tricky but added nicely to the eerie-ness of the building’s history. Located on the third floor of the Shuter Wing, the clinic itself was very welcoming and was packed floor to ceiling with pamphlets of information posters about symptom management and flyers with invites to local support groups.
As a very organized and punctual person, I checked in early. Since it was my first visit, I wanted to get ahead of any paperwork they needed me to complete. Fortunately, confirming the information they already had on file was all that was needed, so I took a seat and watched the Olympics. As I sat in the waiting room, I was reminded of my journey over this past year. In the corner sat a girl taking an IV of steroids and a few seats over a girl checking her eyesight using the posters on the wall; two things I did during my first flare-up.
For anybody outside of Australia (including myself), you’ve probably never heard of Tim Ferguson. According to his website, “Tim Ferguson is a widely acclaimed comedian, writer and producer. He’s toured the world performing stand-up and musical comedy, co-writing dozens of live stage comedy shows and light entertainment programmes.”
Most famous for his involvement with the Australian comedy super-troupe, the Doug Anthony All Stars, that went on to experience superstardom in the sketch and musical comedy world. Be forewarned, the songs the Doug Anthony All Stars are famous for are not exactly appropriate for children or the lighthearted.
So why am I writing about this Australian comedy legend? Because recently I read his memoir “Carry A Big Stick – Laughter & MS” and it’s truly opened my eyes.
Truth be told, I didn’t understand half of it, because I’m not Australian so references to Australian geography, stars and pop culture was lost on me. Nonetheless, it was very cool to learn about his journey from a busker on the streets to fame.
Tim chronicles his journey from the beginnings where he started to experience symptoms such as numbness, loss of balance, chronic fatigue, etc that he chalked up to overworking himself. “I could barely stand straight. I couldn’t feel the hands I was shaking.”
He takes us through his diagnosis. “It was as if everything had slowed, as though I was watching someone else’s car crash.”
Ferguson walks us through his decision-making process to hide it from certain people, and to come out with to others. My favourite part is where he goes on a long explanation of what multiple sclerosis is complete with comparisons to “a bonkbuddy who gets emotional” and “a Swedish backpacker.”
What is Rare Disease Day?
Rare Disease Day, which takes place on February 28th, is a day to raise awareness about rare diseases and their impact on patients’ lives.
What is a rare disease?
A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Nearly three million Canadians have a rare disease.
In North America, NMO affects 4 in 100,000 people. Currently Canada has 2000 NMO patients. 200 of those NMO patients reside in British Columbia.
How does having a rare disease affect patients?
Financial and administrative barriers deter physicians, researchers and scientists from submitting funding requests for small patient markets. Standardized drug trials require a certain number of subjects for a specified length of time. Due to the small patient market of a rare disease population, there are limited drug discovery initiatives funded by pharmaceutical companies. Therapies may be available but are not distributed or developed further due to the limited demand. This means that the drugs available to a patient are severely limited and often the drugs used to treat their diseases are used “off label”, meaning they were developed for a completely different illness. This can lead to a lack of drug coverage by the Canadian government.
For example, the current drug therapies approved in BC for NMO are two immunosuppressant drugs in pill form, which were developed as anti-rejection drugs for kidney transplant patients. A third drug which is administered as an infusion is being used in the US, but does not currently have coverage in Canada. If the two immunosuppressant drugs in pill form fail for any reason, there is no back up drug for an NMO patient to turn to. My NMO specialist in BC is working hard to change this by lobbying the provincial government for coverage.
I’ve thought a lot about this particular blog and this topic has been weighing on my mind for a while as I’ve struggled to balance life with MS and my career. I’m hoping someone can relate? Living and managing MS as high functioning individual is a bit like a double-edged sword. You seem Ok to everyone else in the world, but you still have a lot to manage behind the scenes for which most people don’t account for career and life-wise. It’s like living in the grey between a disability and MS-free life. Sometimes it requires more energy and time than one would think or acknowledge……
I experienced MS symptoms for 10.5 months before diagnosis and from my understanding of the diagnosis process this is somewhat short. During this period in my life, I commenced a graduate degree. Looking back, I was experiencing a range of issues most notably extreme feeling of tiredness loomed and minor cognitive issues that I couldn’t shake. I felt unmotivated despite knowing and deciding that this was my passion and I was going to go forth and conquer my field in science. It feels like an excuse even now – those OK but not high marks, the inability to focus on writing, the inability to meet deadlines, the constant forgetfulness, the lack of motivation from feeling tired all the time. The end result was several missed opportunities most notably for scholarships, what a graduate student needs to survive (all of which have made my life much harder). Upon diagnosis, I was in survival mode and I was trying so hard to work through it all, which meant specific tasks were dropped for periods of time to accommodate MS. I managed to succeed at physical “doing” tasks like laboratory work and field research for a period over focused writing tasks; this particular issue (lack of writing) was a deterrent to me.
As I’ve described before, living with MS is a series of ups and downs. Days you wake up without feeling in your limbs are among your worst.
However, the day you wake up, and you realize it’s been a year since your last flare-up, and that you’re in the best mental and physical state you’ve ever been in… you feel like you’re on top of the world.
I had the pleasure of experiencing that last December, and honestly, it made me feel amazing to know I had gone a year without any issues.
However, although that was a huge victory for me, I’ve been through many victories while dealing with my MS. Some small. Some big. But nonetheless, they’ve been victories.
When my small flare-ups—y’know limbs going numb for 10-15 minutes—stopped happening because I followed my doctor’s advice of daily care and management.
For me, the day I stopped being nervous about my daily injections and it became as routine as washing my hands.
The day I realized I knew enough about my multiple sclerosis to recognize the difference between my leg falling asleep and a flare-up.