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Sunday, April 21, 2013

Updates--The Good, The Bad, and The Ugly

It's been awhile.  I've been thinking about updating, but haven't known where to start--and getting a request to do so seems like the obvious.  I want to report that everything is perfect on this journey, because then I would have beat it.  But....people still offer all kinds of answers.  I have learned the truth.  There is no cure.  I'm going to live with this for the rest of my life.  But I can learn and grow and have amazing experiences and have a great quality of life.  I'll take it.  So here we go!  In reverse order.

The Ugly - My hair is still only half there but with a LOT of good hair spray and other "Big Sexy Hair" products, unless I'm directly in the sun and you can see through the razzle dazzle, I can fake it.  My finger nails still crack and bleed down into the nail beds, so I have gone to fake nails.  Which I hate.  I hate the maintenance, I hate trying to do things with my hands, and I hate typing.  But...beats the alternative.  My feet still hurt every day and crack and bleed into my shoes--when I wear them.  I still have bags under my eyes I could bring groceries home in.  I still get asked how much older I am than all my sisters--certainly not a reflection on them, but definitely not the thing you want to hear.  They have awesome genetics.  It's not the being older question that bothers me--its the "how much" older.  How much are we talking here?!  I'm still battling my weight.  At times the schleroderma is bad enough in my esophagus that I eat a liquid diet.  I try and eat all whole foods, mostly raw, but getting enough calories turns out to be a chore.  And if you don't get enough, your body thinks its kinda the same thing as eating too much.  Really--these are all superficial things I don't care that much about, except they are indicative of what's happening underneath.

The Bad - I still have MCTD and though when you have MCTD you don't have all the individual diseases--they're all lumped into that diagnosis--I have schleroderma, reynauds, lupus, fibromalgia, degenerative diseases of the muscles and joints (various), arthritis, lung issues...  I could probably pull out a few more, but what's the point?  I still have MCTD.  That kinda' sums it up.  It still hurts.  Terribly.  It still exhausts me.  Endlessly.  It still robs me of my days and many of my nights.  The "Crash and Burn" has to be planned for after every full day, event, or trip.  It still requires me to work at it and to schedule around it.  I still have MCTD.

The Good - I am learning how to live.  And I have been blessed.  I have found nutritional help.  I have found natural medicine help.  I have learned to prioritize.  I have learned to be ok with less than perfect...sometimes.  But most of all, I have learned to rely on my Heavenly Father and His spirit.  I have learned to be ok with what is.  My Dad's definition of a miracle:  It is the response of a loving Heavenly Father to one of his children in need.   I have learned to be grateful because even in the darkest moments, there are miracles everywhere.  And I have learned to serve--no matter the situation, no matter the circumstances, I can serve.  And that, in itself, is a miracle.


1 comment:

  1. When Dad told me his definition of a miracle I soooo loved it!!!

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