Chris Tomlin O Come all Ye Faithful

Friday, March 29, 2013

Ways I "Keep" my LIfe with a Chronic Disease

I have Psoriatic Arthritis....you know, that disease "that golfer" has.  Only I have it a lot worse than he does.  I've had 4 hip replacement surgeries and both of my shoulders and both of my elbows need to be replaced.  (I'm just holding out until I can't stand the pain anymore).  My spine is a train wreck.  There are openings in the vertebrae called "Facets" and it is through these openings that the nerves travel.  Well, my arthritis is closing up those openings and pinching off those nerves.  When I stand for more than a minute, my leg goes completely numb.  Not pins and needles.  Just completely dead.  And I have shooting pains down my arms where nerves in my neck are being pinched and my hands also go numb.

Also I have Psoriatic Spondylitis.  Which is just like ankylosing spondylitis except the vertebrae fuse in random order rather than from bottom to top.  Already my lumbar back is fused and now I have 3 or 4 fusions in my neck as well.

Pain and fatigue are a huge part of my life.  How do I keep from being overtaken by this disease?  Well, I try really hard to keep it out of my head.  It has taken over my body but it can't have my brain as well!!  I really try hard not to become angry or self pitying.  This is the path God is leading me on....It is not up to me to reject it or to complain about it.  I look for ways in which I can be normal.  Recently I've discovered that if I do it for short periods of time, I can knit like I did years ago.  Thus far I've made three shawls.  This enables me to do something special for people who have blessed me or for the people I love.

I also have learned to do artwork on my computer using a graphics tablet --instead of working with canvases and easels.  It is an outlet for my creativity.  Granted, a lot of times I'm too tired to consider doing it but I do try to keep my art active.  Maybe someday I will have another show....

My kitty keeps me company.  She is important in my life....I know she needs me and I need her as well. 

I do try to  exercise.  True, there are days when I have to practically kick my own butt down the basement stairs to my homemade gym.  Days like today when I'm hurting and just really DON'T feel like moving.  But I've learned, those are the days it's most important for me to move.  Usually after 20 minutes, my body is warm and more flexible than it was to start. It's true that I get really really tired really fast.  I went to a mall the other day and I was foolish and didn't bring either my rolling walker or my wheelchair.  I paid dearly for that error in judgement--but at the same time was kind of proud that I did make it from one end of the mall to the other (with some sit downs in the middle).

I have friends online.  I belong to two different support forums for people with RA or PsA and not only do I learn there about the disease, I make friends, get my questions answered and have a place where it's okay to complain. (I try to avoid complaining in all other avenues of my life....although my husband does hear me moaning and groaning at times.)

These are a few of the practical things I do to keep a grip on my life.  Sometimes it feels like my  life is like trying to hold onto a hand full of sand....It just keeps seeping out between my fingers and falling to the ground. But I do what I can to try to hold on.  And sometimes it just means I have to recognize that there's more sand on the floor than in my hand....and out come the broom and dustpan.

My broom and dustpan are my faith in God.  It is he that owns my life.  It is up to Him what he will do with it.  What is up to me is to live it in a way that honors him.  God should not be my last hope.  He should be my first hope.  He should not play clean up.  He should play builder.  Too often I do all I can in my own strength and when that fails then I call out to God.  I'm learning.  Slowly but surely I'm learning to call out to him at the beginning of every day for that measure of grace that will get me through that day.  He is always willing.  I just need to remember to ask.
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