Out of darkness

          Testimony time

Invisible Slump #iiwk11

This is National Invisible Chronic Illness Awareness Week 

Truth is multiple sclerosis stinks.

I was diagnosed in July of 2003 during a medical workup for episodes of terribly painful stabs of pain into my left ear canal that were becoming intolerable.  That ultimately was diagnosed as trigeminal neuraliga. At the time I could not pronounce or spell it.   I’ve blogged about TN previously and the brain surgery that stopped the pain. 

And it turned out for me that trigeminal neuralgia was not caused by my multiple sclerosis; they were actually two separate neurological conditions going on.

My multiple sclerosis has set a really slow tempo of progression no doubt this is great news.  The symptoms I deal with are primarily invisible to those who deal with me on a casual basis.  I don’t walk with a limp or outward disability. On good days *the times you’d see me out and about* I look pretty good :)

Yet, if people only knew my  invisible struggles.  Fatigue that makes me feel like I’ve been run over by a truck.  Heat intolerance to the point that I can not see straight to drive after being over heated by the temperature outside or a hot bath or a fever. Migraines that can ruin two or three days in a row. Sleepless nights which lead to a bad attitude and non accomplished days. Chronic urinary  tract  infections caused by a neurogenic bladder that will not completely empty on it’s own and then requires intermittent self catheterilzation.  Cognition issues that make it difficult for me to comprehend directions given or a book I’m trying to read if there is any competing stimuli going on around me.  Dealing with these things almost constantly brings me into battling depression.

My plan today was to write a blog post about my invisible chronic illness and to top it off I saw our picture included in Montel Williams slideshow titled: I am the Face of MS

Twitter Digest, Week of 2011-09-04 and 2011-09-10

Twitter Digest, Week of 2011-08-28 and 2011-09-03

Twitter Digest, Week of 2011-08-21 and 2011-08-27

Steve Jobs & iGranny

I’ll always be grateful that I’ve been alive during Steve Jobs career at Apple.  My enthusiasm  towards Apple is due to this man’s ability to make complicated technology  so simply desirable that even a Granny can find it delightful.

I consider him an artist who has created a collection of masterpieces I have admired from afar and once obtained results in an emotional devotion that includes becoming part of a community.  Who else has done this with hardware and software?

For me it began with an iPod.

Steve Jobs is the reason I’m known as SwitchinngGranny.  Watching his passion during keynotes caused me to switch from windows operating system to the exciting world of mac.

I  believe that  because of Steve the average consumer has moved into the digital age.

I wish Steve some valuable time with his family,  improved health and most importantly I pray he is able to enjoy divine communion with the master Creator.  May God Bless Steve Jobs.

How has Steve Jobs and Apple influenced your life?

This one is amazing

Have I mentioned lately how completely thankful I am for my husband?

It’s not our anniversary.  It’s not Tommy’s birthday. Hey- it’s not even Friday!

Yet, occasionally it needs to be publicly proclaimed when someone is so loyal and genuinely selfless and kind.

Wow!  Words cannot express my utter joy.

I love this man.

Growing with him has increased my faith in God.  Because he’s such a “religious” man?   No, he’s the furthest from “religious” I know.   His faith is simple and sincere.

His concern for others never ceases to amaze me.  He never looks for fault in others; instead he continually looks for ways to encourage them.

I love this man.

His legacy will be that of one who brought joy into the lives of people with his honesty and simple heart.

So often during his busy work week he’ll call and ask: “Have I told you that I love you today”.

Have I told you lately how much I love him?

 

 

Twitter Digest, Week of 2011-08-14 and 2011-08-20

I only have till midnight! Please help me!

 

 

You can help me help others.  But I need your help TODAY!

If you don’t have time to read my post but can quickly “like” my essay, I’d be so grateful: click here

Just the night before last I came across this tweet from @MayoClinic  “Deadline midnight CDT! Submit your essay TODAY 4 #MCCSM Summit scholarship contest (incl air, hotel) http://t.co/pQeHvrg

Oh how awesome it would be to attend Mayo Clinic’s Social Media Summit!  But I was ill and I just wasn’t up to the effort that an essay required (with only 6 hours left to enter) and shrugged it off.

 Yet, it didn’t “shrug”.  The thought kept pressing on me that this is my passion. Using social media to encourage others who live with chronic disease.  To give hope to the helpless.

So I just did it!   I quickly filled out the online application and put together an essay expressing my heart in winning this scholarship. Literally without editing.

Now I see that Mayo Clinic has posted these essay’s on their website and I only have until midnight tonight to get people to read my post and “like” it as one part of the competition.

As I’ve recently deactivated my facebook account I am unable to ask these close friends for votes.  I only have my twitter feed and my blog to ask for votes.

With your help today- I can do this! 

 Please go to this page:  Mayo Clinic and read my essay and “like” it and comment on my behalf.

 

 

 

Twitter Digest, Week of 2011-08-07 and 2011-08-13

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