Thursday, March 31, 2011

Online Support

When I got my first diagnosis last spring I began to search the Internet for other people with the same diagnosis.  It was a great opportunity to learn about Google's Blog Search and how to create a Google search.  So now, whenever a blog has CIDP or Chronic Inflammatory Demyelinating Polyneuropathy in it, I get a notification on my homepage.

One of the things I was looking for was an online community to be a part of.  There are a few out there and today I found this one on a blog called Kenny Kellogg, Scott Orn's Personal Blog:

New CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Support Network

Just a quick heads up that Ben's Friends online support networks went live on a newonline support network for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). We're still populating all the features and rolling it out to patients. A group of patients saw what we were doing on our other networks, and asked for this, so we obliged. :)

Saturday, March 19, 2011


My wife is at home, in bed with the lu.  Me?  I'm out enjoying the sunshine, walking the dog, hanging out at the coffee shop; I put air in my tires and pedaled up and down the street this morning.  I would not call it "riding" just yet, but it is the direction I would like  to be going.

I went into the hospital for the first time one year ago today.  I feel pretty good right now.  

I don't take this milestone lightly; The trip from March19th, 2010 to today was challenging.  I didn't do it alone, and to the friends, family, fellowship members, and strangers who were part of that journey, thank you.  The experience would a lot more hellish without you.

This is your day to celebrate too.

Tuesday, March 15, 2011


I am done being handi-can't.  
I am driving.  I am walking the monster dog.
As soon as I  get air in my tires, it is time to get the bicycle out.

Take that, CIDP.

Thursday, March 10, 2011

Ash Wednesday

After our morning coffee in bed, Adrienne and I went to a local  beach so she could have her morning walk on the beach. There were several groups of people doing their morning exercise routines, some with personal trainers and bright equipment. Most walked or ran across the white sand.

Saturday, March 5, 2011

Monday's Blahs

I cancelled last Monday's physical therapy appointment because I was not feeling well.  Exhaustion from a busy weekend, four hours a day driving, then whirlwind visiting with my family coupled with only a few hours sleep the night before left me with a couple of painful cold sores and the sniffles.  There is also a buzzing sound in my ears and objects seem to sport a lightly radiating gloriole  around them.

I hope they won't charge  for the missed appointment.  Which askes the question, am I really too ill to go or am I playing hookey?  I feel guilty about choosing to stay home.  In my heart, I should have gone and just been sick.  It will be my fault if I will have to pay for this out of my own pocket.  I should never have gotten sick.  It is my own fault.  I should have...

Thursday, March 3, 2011

My Gratitude List

I have been feeling a little gunky emotionally lately.  New tough time of year, I guess.  I have been so busy thinking about what happened last year that I am scaring myself.

People used to comment on how, during the worst of it,  I was keeping my spirits up, that I had an optimistic attitude, and I was relying on God to see me though the bad days and bad moments.  To my thinking that was because I was making the choices to do those things.  I didn't want to get lost in fear and despair.  It was like a big hole in the road that I could either go into or go around.