I know, it’s been a long time

The months have flown by and we are now in November.  I have about 1/3 of the house packed and we load the truck on December 6th.  God help me, please!!

As you can tell we are still moving to the Midwest.  This is similar but different from the last times we’ve moved.  Why?  I’m so glad you asked, because I would be in the same amount of completed packing, because I was working full time.  Now it’s due to my body not cooperating with me from Scleroderma.  However, thankfully I march on with help from family and friends!!

This morning while going through my emails I came across an article about Chronic Illnesses.  The article was written by a fellow sufferer of these illnesses.  Mind you, she has Lupus, Sjogrens, & Rheumatoid Arthritis, however, they are all in the same family as my Systemic Sclerosis (Scleroderma).  All of these diseases are debilitating, painful as well as frustrating when one has been an active person.   If you have time, it’s a great read.  You can read it here.

Every point she made is so true.  I was glad to know I’m not the only one feeling this way.  HOWEVER, I must say that I have the BEST set of friends and family.  They don’t judge me for what I can or cannot do.  They are very willing to help me with whatever I need, if I only ask them.

She talks about having to grieve daily over the new daily things she cannot do.  Oh. My. Gosh.  She is so right!!   I know to those that are well, this makes no sense.  But to those of us that suffer, everyday there is a new degree of things that can’t be done.  As I type this, I can see my fingers curving more and more.  I’m not able to spread my hands.  Here’s a test, take a ruler, open your hand and spread out your fingers.  Measure from your thumb to your little finger and note the measurement.  I just did this and I measure 5 1/2 inches.  Weird!!

When my husband holds my hand, if we interlock fingers, his fingers only go to my middle knuckles because the rest are stiff.  Another thing to grieve, not being able to interlock fingers with my hubby.  It’s a sad and scary thing to realize what normal function is gradually slipping away.

She talks about the pain.  Oh yes, the pain.  You know the pain can be a real pain in the a** and it is EXACTLY as she mentions in this article.  What I find frustrating is the FDA in all their infinite wisdom, changed the medication I’m on and limited the amount of pills given at a time.  Not only did they do that, they DO NOT allow refills.  So that means, I have to go to my doctors office each time to get a new script and take it to the pharmacy to be filled.  The ONLY people this hinders are those that have a legitimate reason to be on these medications.  Those that use them to get high, will be able to obtain them some other way.  Can you tell I’m just a tad frustrated?  Oh well, Let It Be as The Beatles sing  OR Let It Go as in Frozen.    Or as her article reads, “Not giving up, but giving up.”  Some would think that is strange, but it really isn’t.  Giving up trying to figure out the whys, what-for, the infinite wisdom of those in charge … etc.  It does make for a better blood pressure reading.

When hubby goes off on something, I just look at him and tell him, I can’t change it.  OR, I don’t have the brain space to deal with that right now.  Which is true!  I now get overwhelmed.  This person who used to be an Escrow Officer handling thousands and millions of dollars now gets overwhelmed and has to stop, breathe and focus my brain and write down what I need to accomplish for that day.  AND not be disappointed that I didn’t get everything on my list checked off.  I spend a lot of time shaking my head at myself.

Her 3 things are very helpful.  I also a fourth thing, which should be my first thing, that is my faith and trust in God.  My fifth thing, which should be my second thing, is my counselor.  Without her, I would not have made it through this year and preparing for this move.

 

 

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