Tuesday, March 10, 2015

Time!



 
Our Journey Through LIFE is taking some time as it makes a slight turn!
 
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Back in 2001, this was what began our journey...
 
(Multifocal deep white matter foci in the bilateral periventricular regions of increased signal on long TR images is noted. While this usually inconsequential when seen in elderly patients due to chronic small vessel ischemic disease, the younger age of the patient (44) elicits other diagnostic possibilities such as vasculitis, demyelination such as seen in MS (although the lesions are not characteristic of this entity), ADEM, or lyme disease, or gliosis from prior brain insult. Clinical correlation is recommended.)
 
Last years test revealed basically the same thing.

(Multiple foci of  FLAIR signal hyperintensity seen within the periventricular and deep white matter represents the sequel of moderate chronic small vessel ischemic changes, such as....)

The years in between those two MRI's were partially filled with tests after tests, and even more test. The roller coaster of this was all the "this or that's", that eventually made ME to make a choice.

What was most important?

How can I accomplish what I need with what could and probably will eventually happen.

If you look up each of those possibilities, they all have challenges of their own. After all that testing, to be left with nonspecific myopathy, progression will be needed for a more definite diagnosis, landing me in a trial for IBM, I walked away when I could. No medication was going to cure it, or stop what was happening. I continued filling out my research papers each year for that study, but I have not been back for further testing or evaluation. Over that time, with outside help for physical and occupational therapy, along with some great spiritual therapy, I am where I am today!

Some might say I wasted time!
 
It was not wasted:

It was time well spent.
 
Memories that wouldn't have happened, happened.
People I wouldn't have met, I met.
Places we wouldn't have visited together, we saw and we continue traveling to.
 
I believe we are still heading in that same direction, we just have to take our time, along with a minor detour due to some construction ahead. It happens all the time when you are on a journey. No one can predict the weather, the road, the outcome, the challenges, or the setbacks. We can and do prepare for them and that comes in the form of FAITH.

A detour along any journey is most likely a possibility, in fact, I really did expect it sooner, so with that, as we (I am not alone on this journey) approach it, my tummy does get all tangled up inside.

I really am not a fan of deadline, due dates, or submit by dates!
 
I am a fan of...FAITH!
 
My daughter says I can be the Queen of Vague!
She tastefully choice a different word, ambiguity I think is what she said, but basically it meant VAGUE!

Guilty, and for good reason.
 
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1. I don't want to throw anyone under any type of bus.

 
2. I don't want to hurt anyone.


3. Complete details haven't been worked out or resolved.
 
Until all the i's have been dotted, and the t's crossed I can be as vague as I need to be. Excited to share whatever is happening, yet cautious about what might be ahead or along the way that could change that direction in the blink of an eye. 

4. Sometimes I just like cliff hangers.

5. Not everything needs to be black or white, I like color sometimes.

Basically....
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And my son had to add his 2 cents too!
 
Adam Yarlott's photo.
 
vague
/vāɡ/
adjective

...of uncertain, indefinite, or unclear character or meaning.
...thinking or communicating in an unfocused or imprecise way.

I don't like letting all the cats out of a bag after they have been collected.

No one cared to help me collect them!
 
Why do they care how I let them out or when?
 
Calling me crazy will not make me share anything sooner then I need or want.
 
One thing is certain, a trip I had planned for almost a year needed to be canceled. Something better is taking it's place and that trip will be rescheduled at a different time, for a different reason, and even go to a different place. With planning, I can take a train trip anytime to anywhere I want, and New Orleans really was never on my bucket list. So this is where we need to be to celebrate with our family, our way. In fact I'm kind of happy it's been removed, along with the anxiety!

That last test will also be sending us on another journey come the fall. I was asked last August if I wanted to be referred and my answer at that time was "No, not really. We've been on that road before!" I have decided that come my next appointment, I am asking for that referral. I am not looking for a different outcome, it's just time to get some medical assistance in the direction is all.

So in between now and then, I am filling the time with things that matter.

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After all...

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Time on Our Journey Through LIFE!
 

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