Saturday, April 13, 2013

The Invisible Disease

My husband and I joke calling it the "lazy" disease.
He absolutely hates having limitations, especially unseen ones.

I know he wouldn't survive a day in a construction job without several issues coming up.  He does build things around the house from time to time but not without my help and only in short stints.  I even push on the back of the drill for him while he holds it until his hands go numb.  Quitting time.

Recently we have been doing a lot of repairs at our old house we use as a rental.  My husband came home earlier this week with both knees numb and then yesterday he came home from the house with his right hand numb.  They have not yet recovered.  He gets frustrated at his body and needs help.  He hates to ask for it.  He looks fine, he looks fit and able and he is willing but his body does not last.  He lived in denial for a while but when the problems come you have to face it.

The worst part of it for him is the judgement of others.  He feels he appears Lazy to those around him.  The unkempt yard, the wife doing the man's job while he just sits around.  "If he says he is unable to lift or work why do I see him lifting and working?"  Judgement is painful.

Even when you explain it, it is hard to understand.  Yes, sometimes he is stronger than other times.  Sometimes he can lift and sometimes he can't.  He could work harder, but there is a heavy price to pay.  Sometimes he does work harder than he should and comes home with numb body parts.  If he doesn't stop immediately, those numb body parts will stop working all together.

We are quite a pair.  I am only 34 and already have arthritis and sjogrens, both attack the joints.  My body gets stiff and aches but between the two of us we get it done, well most of it.  We take turns and continue doing the best we can and keep going.

I have come to realize that everyone's body has something wrong with it.  It is part of the nature of life and we need to remember that when we look into another's window.  We can't see the whole picture, we don't know what goes on inside.  Don't judge another's need, if you see a need just help.  We all are in need.              

My Second Daughter

We took her to see the pediatric neurologist just before her eighth birthday.  She has significant weakness in her right arm (she is right handed) so the genetic blood test for HNPP was ordered.  She also had a strange delayed second reflex reaction in each of her knees.  The doctor tested her knees with the little thump and she kicked out twice every time.  Don't know if this is related but the doctor thought it was strange so I am making note of it.  We took her in for the blood draw a week later and are now awaiting the results.
My husband wasn't sure if he wanted her tested.  We know it is in the family and if the children are having problems we can just assume it is this disease.  I was torn.  I want to know but there is the worry of how knowing can affect their future.  Will they be denied insurance or have to pay a lot more?  The doctor recommended we don't test them unless symptoms show up.  I asked my daughter if she wanted the test, if she wanted to know for sure if she had it.  She said yes, so we did the test.

PS: get a rolling backpack for your kids.  I don't know what I was thinking.  I feel like I am being so careful and cautious but then I go to the doctor and she asks if she is carrying a heavy back pack.  I feel so silly.  Of course they should not be carrying heavy weight on their shoulders and they do it daily.  I feel so dumb.  We ordered each of my girls one that day and they are working out wonderfully.