A personal account of my dealings with progressive multiple sclerosis. And my battle with trigeminal neuralgia and the brain surgery that stopped the pain!

Thursday, March 5, 2009

Life as I know it

Early after my diagnosis of multiple sclerosis in 2003 I created this blog. Yet I'd never posted!

Seems like most of my posts had gone to my online journal with MSIF

And I'll keep posting to the MSIF site because it includes an online community of folks with multiple sclerosis that I want to stay connected to.

But there are things to share here too.

The most unique thing about multiple sclerosis is how it differ's not just for every individual who has MS; but that each day for me is completely different from the previous.

I cannot count on how I will feel from one day to the next.
My diagnosis is not the more usual relapsing remitting MS. I've been told that I deal with primary progressive MS.

So besides the times I've awakened with optic neuritis, I've never had a completely new symptom pop up that goes completely away. But I can sure feel great one day and be nearly bed ridden the next.

For example, yesterday I felt wonderful. Weather-wise we've encountered a cool front. At least compared to the weeks of 90 degree days. Yesterday it was low 80s! Tommy and I hand waxed both cars! Then I did things around the house and went and got some groceries. Made up some soup. And had our Granddaughter stay the night.

Today however I am unable to accomplish anything productive.
Just barely made it through the morning visiting with our Breanna. No church! Tons of things I want to do to prepare for our upcoming trip to Michigan. Yet, here I lay with my macbook on my lap. Blogging horizontally!

Unpredictable! Frustrating.

Two very descriptive words for Multiple Sclerosis.

I've never wanted to consider myself sick. In fact I'd be the first to argue that MS is not a sickness, just a progressive neurological disorder! But when I'm fatigued to the point of being in my bed, I begin to think that maybe I am sick!!

Next post I pray will be more uplifting.

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About Me

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Love Jesus! Mac Enthusiast! Love all things tech!

Married to high school sweetheart for 42 years! 
Multiple Sclerosis tries to get me down. 
Previous Trigeminal Neuralgia sufferer-successful MVD in Nov of 2006. 
Mother of 2 grown sons. GrandMother
Gardener, Twittering Lady.
Podcast lover. Previous fitness instructor.. previous Childbirth educator, previous school bus driver, previous racewalker.

Lots of previous.. but unending future! Gifts: encouragement, helps, discernment. Lover of People.

Recently my youngest son 33yrs old- (now 37)  was  diagnosed with early onset Parkinson's disease- this is the toughest road yet. But by God's divine hand- we'll survive. 


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I am exceedingly humbled that He knows me by name and actually died that I might live. And then He sought me out! This is joy unspeakable.

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Did I mention that I had an uncle named Steve ?