I am back to blogging and I would like your help! Please.

19 Dec

I have not written in my blog for a long time.  I started my blog to keep myself motivated after my diagnosis of MS.  Those first years were  very hard and filled with so much uncertainty.  I didn’t know if I would ever be able to work full-time again, live on my own, go a day without collapsing into bed to take a nap, find love or finish my degree.  I was afraid that my life had been permanently sidelined. The MS had placed me in a time-out with no timer and like any child placed in time-out I fight against it.

On Tuesday December 20, it will be my five year crapiversary.  My intelligent cousin, coined the phrase crapiversary.  A crapiversary is the anniversary of a crappy diagnosis.  The first two years of MS were hard to put it mildly, but I kept pushing myself forward and revisiting my list of my dreams of accomplishments and things to do for a fun life.

I am happy to report that my list pushes me to move forward. If a goal cannot be accomplished like I had originally envisioned then I make an accommodation to my original goal, but I don’t give up on the goal. For example, Number 16 on my list is to run or jog a 5km, that was not a goal that I could not fulfill in its original form, but I could if I powerwalked it.  I now have two metals that hang from my lamp that remind me of my 5km powerwalk.  These metals show me that MS can alter plans, but they are not a reason to give up on plans. #19 on my list is finish my degree.  I am in my final year of my degree in Critical Disability Studies at Ryerson University. It has taken me 7 years to get here, but I am finally in my final year.

My thesis is a phenomenological study of women that are currently undiagnosed and searching for a diagnosis or were recently diagnosed and the experience of living undiagnosed is still very fresh.  I choose this topic because as a woman with an invisible disease, I understand what it feels like to have your body betray you.  I remember telling my friends that my hand was numb only to have them scoff at me because they saw nothing wrong with my hand.  I remember fatigue that I explained as a “cold” because without an explanation I would be perceived as “lazy”.  I met a woman where it took her 10 years to get a proper diagnosis of MS because her doctor did not listen to her.  It can be very lonely when you are in diagnosis purgatory. I want to listen to these experiences and let women know that their experience is not isolated.  My hope is that by collecting women’s stories that women that are living in diagnosis limbo that won’t feel so alone. If you know of anyone who would like to help me and share their experience of living in diagnosis limbo please leave a comment.  Please help me reach goal #19.

One Response to “I am back to blogging and I would like your help! Please.”

  1. Lindsey December 22, 2016 at 4:47 am #

    Thanks for the insight. Great read!

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