Archive for January, 2014

Wow what a 9 months it has been!

Written by on January 28th, 2014 – 1 Comment

Unfortunately like most pregnant women, time flies!! I thought I would have more time than I actually did to do nothing but blog – this obviously wasn’t the case.

Of course I realize that every pregnant woman has their struggles, and every MS patient has their personal struggles with being pregnant (or not pregnant for that matter).  Here is what I discovered:

  • Never did I imagine that pregnancy & MS attacks would present themselves the same way!
  • The fatigue you feel when you have MS is doubled when you start growing a human in your body!
  • The great thing; when your legs go numb – it MAY be MS, it may be pregnancy … either way, it doesn’t much matter … you just deal with it
  • There are times when the diet you worked so hard to help your MS goes out the window and your cravings win, guilt-free!
  • Your illness MAY go into remission, it may not … you deal with it either way, just like before …
  • Your illness may NOT go into remission, there are options – don’t panic.

I can say this; I have been pregnant for almost 9 months now (baby is set to arrive any day now), and I have been fortunate.  Yes I have been beyond tired, but my MS has stayed in remission the whole time.

It’s amazing how I spent so many years NEVER trusting my body anymore b/c I always felt it failed me … I felt my immune system turned it’s back on me, and now that I’m raising a child inside me and getting ready for one of the hardest most strenuous things I’ve ever done (give birth), I’m happy to say I trust my body.  My body went into remission and allowed me to give this baby a healthy environment, and I finally can say that for the first time in 9 years, I trust my body again … and It feels amazing!

Funny what you find out about yourself … always learning! 🙂

 

 

The Gift of Accessibility

Written by on January 21st, 2014 – 3 Comments

Six years ago, when I was having a major NMO attack, which lead me to mistakenly being diagnosed with MS, I lost all the feeling in my hands and arms. At first, I was a mess-I couldn’t do the simple everyday tasks that most people do without thinking-I couldn’t manipulate the buttons and zippers on clothing, put keys into locks, carry things without dropping them and so on. It took months of just muscling my way through it before my brain finally adapted to the new normal and I could manage most of these things again.

One thing I have continued to struggle with is writing. Small motor skills are hard. I can block print for a few minutes, but then my hand starts to hurt and I have to stop. I am hopeless at cursive writing-my brain knows the motions, but it has a hard time getting my hand to sync up, so I end up with loops and swoops where they don’t belong and the whole thing looks like backhand chicken scratch. About the only thing I make an effort to do writing-wise at this point is sign my name on medical documents.

In November, I underwent major surgery to repair a broken wrist. I had a bone removed from the heel of my hand and my arm bone cut in 3, shortened and then bolted back together with 6 screws and a plate. It was (and is) an extremely painful surgery that has completely taken away my ability to write, at least until I regain range of motion. It’s going to take months of physio therapy to do that.

Some time ago, I realized that the only reliable way for me to communicate by written word, or to record information for myself, was to type. My fingers may be numb and clumsy, but for the most part, I can get words down on a page fairly efficiently, using my computer. The one problem with this is that my lap top is too heavy for me to lug around. About a year ago, I discovered that they now make a tiny, wireless keyboard for iPads. The only problem is that at over $700, an iPad mini was not in my budget.

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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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Hello, 2014!

Written by on January 3rd, 2014 – 11 Comments

HAPPY NEW YEAR!!

I hope you’ve all had a great holiday season and that the new year brings with it a fresh start; just remember, go easy on those resolutions!  😉

As a new blogger to this site, I thought I would take a minute or two to introduce myself.  I’m Ashley, a flower-loving, 30-year-old living in Port Credit Ontario.  I was introduced to our complex MS-world this year, having experienced my first ‘flare-up’, Optic Neuritis in my left eye in late April.  It greeted me just two weeks after I defended my thesis, and took my vision in a matter of days.

Here’s how it happened:

Monday: Headache and a dull pain behind my left eye, L-shaped floater formed by the evening.  It was in my central vision field but I did not find it alarming, I figured I was just tired and stressed from school/work.

Tuesday: L-shaped floater spread to my entire eye, it looked like I was looking through a very dirty window.  No matter how hard I tried or blinked, I could not see clearly and it became excruciatingly painful to move my eye in any direction.

Wednesday: I made an appointment with my optometrist and was lucky enough to get in to see her the next day.  She discovered/showed me the optic neuritis, and after reviewing my family history, she recommended I see my family doctor ASAP to be tested for MS.

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