M is for Mighty

What are those letters M. S. about?

Dare to Dream!


A  couple of days ago I was having a hard time wrapping my head around M S and the implications for our family. What will it look like in 10 years? 20? The answer is, who knows? It could look exactly the same as it looks today or it could be drastically different.
As I pondered this, I told the love of my life that I was angry that what MS really took from us, was the ability to dream. The Rubicon? Rome? Australia? Another degree? A career change? Being able to maintain this career? Putting kids through college? Which dreams are realistic?
The best answer we could come up with, is keep dreaming, and then make those dreams come true. Don’t wait. MS doesn’t just make our future uncertain, but it reminds us that everyone’s future is uncertain.
Dare to Dream!
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What is this feeling?

What is this feeling? I am not sure if it checks the box for anger or depression on the grief cycle. Perhaps the acceptance stage lends  itself to a passive  aggressive sort of approach to dealing with feelings associated with MS. I mean think about it… We are talking about grief here. The best you get is acceptance for a reason. I think it is unreasonable to think you will embrace whatever causes you so much pain. 

Signs that we are at the acceptance stage: planning for the future including cruise control, automatic transmission, and a one story house. In addition, eating healthier.
Signs of depression: that sinking feeling that this will never go away. It will never get better. It will likely get worse.
Signs of anger: resentment that MS controls our thoughts, conversations, and future plans.
Denial and Bargaining…. Hmmmmm… We are both pretty pragmatic. I think we are pretty efficiently spending little, if any, time here.
I guess the thing I am currently ruminating is the concept that acceptance is as good as it gets. That kinda sucks.
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A is for Avonex, B is for Blister!

The titration kit arrived. We had our injection training. The first shot (1/4 dose) left a pretty decent bruise and a hangover headache, but was otherwise uneventful.  The second shot (1/2 dose) only left the hangover headache behind. At this point, we are thinking we are home free!  Avonex without the flu-like symptoms, what a gift! The third shot (3/4 dose) left the traditional hangover headache and then, about 3 days later, red spots randomly scattered across the body.  ?????  What is THAT about?

We read all of the side effect warnings, allergy warnings, possible viral or bacterial infections… nothing.  The next day, more spots and these had tiny little blisters or pustules all over them.  We were thinking maybe shingles, but they didn’t follow any nerve root or pattern.  At a loss, we forked over the money for an urgent care visit and promptly stumped the docs there.  They did some research of their own and arrived at the same conclusion we had… no idea what it is!  They took our money, gave us the standard prescription for an antibiotic and sent us on our way.

Fortunately, the neurologist (who had been out of town for a week) returned and agreed to take a look.  He didn’t know for sure, but suspected it was an adverse reaction to the Avonex.  He strongly advised NOT taking the full dose shot that was scheduled for that evening, fearing an even more severe reaction.

Back to anger. Darn grief cycle!

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G is for Grief

The grief cycle is such an interesting thing.  You would think you would just move through step by step, but no…it is much more like the old washing machines with the agitator.  You swish about back and forth, completely off kilter, and then BAM!  The spin cycle hits and you just want to puke!

It was about two weeks after the diagnosis when I found myself fully immersed in the washing machine process. I would hang out at denial for a while, especially when I was talking to others about how we had everything under control.  I would swish on over to anger for a while about how it just wasn’t fair.  I would drain into sadness as I pondered all of the hopes and dreams for our future.  Refill with denial, swish to acceptance, and on it goes.  The only stage I haven’t really hit yet is bargaining…maybe that is in the dryer.

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The Diagnosis

Relapsing Remitting Multiple Sclerosis.

Now what?

The first wave to overtake me was definitely relief to finally have a diagnosis. Unfortunately, that didn’t last long.  I moved quickly to feeling caught in a whirlwind of phone calls, finances, insurance, medications, education, resources, and to whom we share what information when and in what way. Wow!

Following the diagnosis, we began our MS journey.

The grief cycle definitely applies even though it is not a death. Denial came during the months prior to diagnosis. We tried to explain away the symptoms with trauma from a car accident, fatigue, stress, diabetes, B12 deficiency, you name it!  On the day of diagnosis we slipped briefly into acceptance and then right back into denial.  This time, while we did not deny the diagnosis, we buried our heads as deeply as they would go into the sand to avoid facing the fact that our lives had forever changed.

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