Posts Tagged ‘hard’

4 Things I Wish I Knew When I Was First Diagnosed

Written by on August 6th, 2013 – 3 Comments

As I have said before, I was diagnosed just last year, on July 7 2012. Having just passed my one-year anniversary, I’ve been doing a lot of reflections on the past year, my journey as someone who lives with MS, and how I’ve dealt with the first year. There are some things that I definitely wish I had known right off the bat last year, and here’s some them!

1.    Patience is a virtue!

As many people that have MS will know, and for those of you recently diagnosed will learn, there’s a lot of waiting that happens. I waited two months before my first doctor’s appointment after getting diagnosed, and at times that was very frustrating. Knowing that I was living with this, but not knowing anything about from a medical professional was also kind of scary. (Shout out to the MS Society’s website for giving info and putting my nerves at ease!). Besides that, waiting for appointments, medical exams like MRIs or CAT scans, for treatment my patience has been tested. You learn how to wait out those moments, and your patience grows, which is a good thing.

2.    There are really bad moments.

It can kind of really suck sometimes living with MS. Case in point, this past winter break. I had my worst relapse to date: constant nausea, constant vertigo, and loss of movement in my hand and legs, constant tiredness. I spent the vast majority of my winter break on my couch at home, doing absolutely nothing, because I couldn’t (except for venturing to the hospital 5 days in a row for a dose of steroids, even on Christmas.) For somebody who thrives on the energy of others, gets bored of non-activity quickly and is extremely extroverted, this really sucked. I didn’t know how bad my relapses could get so I was so unprepared for it. However, it passed, and I haven’t had a relapse since!

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So the journey begins… my relationship with Multiple Sclerosis

Written by on March 5th, 2013 – 10 Comments

I always knew that one day I would take care of my parents.  I knew I was part of the ‘sandwich generation’ > folks who would, at some point, take care of both their own children and their parents at the same time.  My mom turned 50 last week… I thought ‘one day’ was 10-15 years away.

The stroke that wasn’t a stroke (not even a TIA) followed by partial paralysis that lasted months;  the loss of function in her hand that eventually came back, months later.  The July morning 2 years ago when she woke up and couldn’t walk.  Except for a brief respite last summer, she hasn’t walked since.

Finally, what we never hoped for

After years of life-changing symptoms… we finally have a diagnosis:  My mother – my beautiful, young, vibrant mother – has Multiple Sclerosis.  She’s never going to walk again.  She’s never going to chase after butterflies with my girls again.  My two youngest will never remember my mom without a walker or a cane.  My oldest asks why her grandma can’t push her on the swings anymore.

I’m angry.  Angry at the doctors that never put 2 & 2 together.  Angry at the genetic makeup that made her susceptible to develop MS.  Angry that she can’t be there for me the way I need her. (more…)

Sitting in the Waiting Room

Written by on November 8th, 2011 –

I’m sitting in the corner of the waiting room at the MS clinic. Waiting for my name to be called. Every few minutes a couple walks in together looking very sad. I’ve been doing this for 12 years now and I still haven’t gotten used to it.  I don’t like to talk to people when I’m waiting for my name to be called. I hope I’m not coming off as rude, I just don’t really know how to act around other people with MS in the MS waiting room.  (more…)