Author Archive

Hard Decisions…

Written by on March 31st, 2015 – 2 Comments

I’d like to start my blog by saying this is just my story and I’m not advocating for anyone to do anything other than listen to yourself in making choices regarding your life and MS.  I was diagnosed with MS in 2010 and have been on medications since a few months after diagnosis.  I selected an injectable medication at the time based on lowest side effects, ease of use for travel with work to remote locations (expiration outside the fridge) and so forth.  This medication was injected into deep fat layers under my skin.  I wanted to live my life the best way possible with as minimal interference.  Adjusting to the drugs was difficult – the huge itchy welts that didn’t go away etc but I was committed and after about 3-4 months of this I got through it and things became better.  It took much out of me to deal with this and I won’t down play the difficulty.  I felt, at the time, I was set for a long while despite the nurses forewarning “some people have injection site issues and cannot tolerate being on injectables in the long term and some people have no issues!”  I never missed taking my medications and I depended on this as one of several things to manage my MS.  After 2 years of being on my medication, I observed the dreaded injection site reactions – the lipoatrophy (death of fat layers) first in my arms and then finally in other injection locations despite vigilant rotation of injection site locations.  I realized my time on these medications was slowly coming to a halt and this issue essentially eliminated a whole suite of other drug options (because they required injection into the same type of tissue).

Last year I set a timeline in which I would chart my next steps in moving forward. I gave myself a year to figure things out.  I had to make difficult decisions and I wanted to be informed about what was next for me – at first it was mass learning about which drugs were available.  I learned much about the oral medications coming on the market and of their side effects.  The reality is all the drugs have side effects and all were harsher than the medications I was on.  I spent several months feeling like my only option was to change drugs and I was set that this was my path forward.  I was scared to make change –any change that might make me take a turn for the worst.  To me no drugs was fear and thus not an option. (more…)

The meaning of NO

Written by on June 3rd, 2014 –

noIn 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…)

Career vs health….

Written by on February 18th, 2014 – 2 Comments

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.

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Life with MS

Written by on January 14th, 2014 – 2 Comments

Recently a celebration of achievement in fundraising was marked for the MS Society here in my city.  This was an event which I’ve attended since being diagnosed with MS 3 years ago.  At the time of my diagnosis, I decided to do the MS walk to raise funds for the issue but mainly to help myself come to terms with my own diagnosis.   At the time of my first MS walk participation, I was in the first 6 months of knowing I had the disease and I was overwhelmed and struggling to manage everything that was thrown at me.  The walk was one of the first avenues for me to accept the new pathway my life was taking, one that I didn’t expect nor want but nevertheless it was happening with or without my support.

I was diagnosed with relapse remitting MS at the age of 30 after experiencing sensory and other issues noticeably (to me) for about 1 year prior. I have had many issues over the last 3 years but none have been not outwardly visible to others (unless you know me extremely well).  This has be a source of frustration in many ways.  Its hard to describe to a doctor what is going on never mind trying to get others surrounding you to “get it” especially when they cannot see any physical impairment.  It’s also been a gift, to be mobile and to be diagnosed early.  For this I am appreciative and I have made a commitment to myself not to take life for granted. I’ve done much hard work to move from being overwhelmed to acceptance of my life situation since that first MS walk all the while of trying to maintain normal life as best possible.  I have made a plan to live my best life and to ensure that I am healthy, and positive and happy about something everyday.  I continue to participate in the MS walk more so with a stronger priority to raising funds.

One thing that I still struggle with at times is seeing others in the advanced stages of MS with a physical disability.  In attending these events at the MS society, this inevitably happens.   The first year it made me cry (or I spent much time holding back tears) because it was a glimpse into my potential future and it wasn’t what I wanted for myself.  Every time I saw a disabled person, I had this huge feeling of empathy and sadness.

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