Wednesday, September 19, 2012

Sept 19 Update

Hey there!

Friday, I had my second epidural injection procedure for the herniated disc in my back (L5S1).  They put me to sleep and stuck a big needle into my spine.  It leaves me feeling pretty tender for the week following the procedure.  I can't seem to find a comfortable position where no pressure is placed on my back.  Oh, and on top of that, Monday I had my monthly Aranesp injection.  That is to stimulate my bone marrow to produce more red blood cells.  THAT injection also makes me feel very owie.  It makes my bones ache.  And again it is hard to find a comfortable position.  Each bone that is being sat on or laid on begins to ache after a few minutes.  What I really need is an anti-gravity chamber to hang out in for the time being.  Hmmm... as soon as I finish this post, I'm going to google that.

Anyways, dialysis is going well.  I am getting used to it, and have gotten pretty quick about the set-up each night.  I have also gotten used to the earlier bed time, even though I don't actually go to sleep until around 11:30 or so each night.  (I like to read in bed.  And the books I have been reading are those can't-put-down kinds.)  I get hooked up to my cycler around 9:30 or 10:00 each night so that it can finish by the time I have to wake up and get the kids ready for school.

My kids are so great.  They are very worried about me, and take a great interest in my dialysis.  They help me get the machine set up, and also help me with the nightly vital signs that I must do.  When we say our prayers each night, they also add "And may God find the perfect kidney for my Mom. Amen."  Hayden has been coming over and rubbing my back for me to make it feel better.  A few weeks ago, Celena set up a lemonade stand in the neighborhood.  She had Hayden and her friend Mackenzie to help with it.  They shouted at each passing car "Help my Mom with her doctor bills.  Lemonade for a good cause!"  They raised about $15.00, which they gave to me to help pay my doctor bills. (Have I mentioned how awesome my neighbors are?  I am blessed to be in such a wonderful neighborhood.) When I tried to refuse the money, Celena cried and said that's why she did the lemonade stand, and she didn't want the money.  So, I had to take it.  Such a sweet little girl.  All of them were such good sports, and so generous.  They didn't expect to keep even a dime.  What great kids!


I saw an awesome neurologist at the Emory Movement Disorder clinic. I was referred to him from my local neurologist because of the problem I have with my hands.  He told me they are called "negative myoclonus" and it should get better over time since I am now on dialysis.  I waited 4 months to get in to see this doc, and he didn't have anything for me except to give it time.  Ha!  But at least he knew what I have and why.  It's from the uremia (high level of toxins in my system from the kidney failure).  The nerve endings are irritated from the toxins and it causes repetitive momentary muscle failure in my hands.  My hands "fall down," thus being *negative* myoclonus.  If my muscles jerked upwards, it would be *positive* myoclonus.  He also said the uremia has caused the neuropathy in my legs, and it should also improve the longer I am on dialysis.  That's good to know!  The problem is that I am impatient.  My leg pain (neuropathy) has been going on for over 3 years now.  And the hands have been bad for about a year and a half.  The doc said that neither of my ailments started overnight, so they won't go away overnight either.  So, I must just sit back and wait...

More later.  Love to you all.
Jenny

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