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.

Sunshine and Unicorns

Today is more than just a good day; the weather has been kind, permitting me to go about outside in the (semi) warm air and sunshine.  Plus, I have more energy than I've had in a long time. It is a great day. 

I picked up my ankle-foot orthotics yesterday.  I am still a little uncomfortable with them, but I know that is just until I get used to them.  They have been very helpful.  I had them on for about two hours today while I went grocery shopping and I was amazed at how much of a difference they make.

There was more that I wanted to share, but I am tired, so it is off to Napland.

Knowledge to carry it out blues

Tuesday, December 28, 2010 10:47 AM

This is the last day of 2010 and I do not intend to reflect on the year past searching for clues and encouragement to face the year ahead. 2010 was a pretty turbulent year for me and I am looking forward to seeing it disappear my rear view mirror.

Not that it was all bad; to be truthful, the good far outweighs the bad. There was plenty of change for me and change is almost always a painful experience. Anyone who has quit smoking or some other deeply ingrained behavior knows this. At least with smoking or eating, there is some sort of physical record. I can see myself cadging a cigarette from my neighbor or eating peanut butter out of the jar at midnight to know that I have not given up smoking or grazing.

Wednesday, September 29, 2010

It has been a while since I posted anything, so I am just going to pray, then ramble. “Let the words of my mouth, and the meditation of my heart, be acceptable in your sight, O LORD, my strength, and my redeemer.” Psalm 19:14

I am back in same day surgery this week. The beds aren't as comfortable, but the nurses are awesome. These are the same nurses that held hands and prayed with Adrienne and me last spring (The Best Show I Ever Saw) and helped get me into the hospital at UC last spring. Their fierce (and fearless) witness has been a comfort and inspiration to me.

I started writing to help myself process my illness (and also to inform others).I never expected that it would become so spiritual, but I couldn't imagine how hard it would be to go through this with out my Higher Power.

I don't know what my future holds, but I am not expecting a miraculous cure. The CIDP will probably be an increasing part of my life; there is no miraculous cure in my future. There have been miracles though and more to follow! Instead of taking away my burdens, He will see me through them.  

Two steps forward and one step backward

Thursday, August 12, 2010

CIDP recovery isn't always in a straight line.

Forward, sometimes it happens just this fast:

I woke up a few nights ago because my right foot was moving. Up until that moment, I hadn't seen any recovery below my knees. Suddenly I can wiggle my toes again and push my foot up and down, like using a gas pedal.

I think it’s interesting that I found this out while I was asleep. Somehow my subconscious sent a letter to the conscious through the dream world. I was getting my feet back.

Along with the return of movement came sensation. For the first time since the onset of symptoms in March, I am in pain. My feet, ankles and calves buzz and tingle throughout the day and night. Every so often I get a jolt like an EMG shock. That hurts.

The other step forward has been the return of my hands. When I went back to the Drake Center for my follow-up visit, my grip strength was measured at less than one pound. The average TAB person's grip is around 80 pounds. Less than a week later my grip strength was nearly 10 pounds!

Zippers, button, and reclosable plastic bags were once again objects I could manipulate. I could also push the keys on my laptop's keyboard again, put things in my pockets, hold a wash cloth and soap, etc.

Backward, sometimes it takes a while:

My occupational therapist suggested that typing more would be an excellent way to improve my fine motor skills.

Although my hands have improved dramatically since June, typing is still a chore. In addition to the muscle loss, my hands and arms shake violently from the medications. Most of my July posts have been almost entirely picture or video content.

I thought I would be able to type full-time, but the constant stream of typos makes it hard for me to concentrate. And my hands get tired quickly. I found myself missing the voice recognition software that came with Windows Vista. It had been a great help to me.

I’m going geek out here for a few moments. The biggest problem with the voice recognition software is it requires the Windows Vista partition on my laptop. There’s no need go over the reasons why Vista was an unsuccessful operating system; most people have their own list anyway. Before I got sick I was learning to use an alternative to Windows, but had to stop for one important reason.

Whenever possible, I used the Ubuntu Linux partition on my laptop. Linux is an alternate operating system that is quite powerful, yet also light weight on the computer’s resources. What this means is that anything I want to do on Windows, I can do in Linux faster, more efficiently, and for free.

And it is also fun. There are some challenges, but I love problem solving and figuring out how to make things work. All the software is developed and given away by users, not for profit companies. So the programs can be a little quirky and help is a little more challenging to find. But since there is a community that works on the software, fixes and work arounds come fairly quickly.

But there is no voice recognition software for Ubuntu. I know a couple of projects being developed, but I didn’t find anything that I was smart enough to use successfully. Whenever I wanted to write, I had to go back to slow, buggy, forever updating itself Vista.

But I am able to compromise; I wrote most of this in Windows using the voice recognition software, then edited it by hand in Ubuntu, using the excellent (and free!) OpenOffice.org Writer program.

Pause

Wednesday, August 4, 2010

I feel like a new person. I'm not sure who that is but his life is very full and active. My house is also full and active with my granddaughter running around, Alex and Adrienne working on their projects, and this week my mother in law, Lola is visiting.

I love sharing my house with my granddaughter. She is a constant source of joy to me, and noise. For the last day she has been sharing things with grandpa. If Nana gives her a cookie, she brings it to me and offers me a bite. Of course reciprocation is the downside to this; if I have something she wants she just takes it off my plate. Indulgence is the first role for grandfathers, so I am happy to let her have her pick.

My physical recovery is still progressing rapidly. I am certain that I will be able to stand on my own soon, walking independently can't be far behind. I hope.

CIDP is a very serious illness. I have the attitude that I am lucky, my symptoms have retreated and my body is well on the way to mending. A quick look at some CIDP discussion forums on the Internet last night reminded me of how unpredictable this sickness is. Severe recurrences are not unheard of, sometimes the illness develops a tolerance for its treatment drugs. More than once I've read someone who went to sleep fine and woke up paralyzed, unable to talk.

The next phase of my recovery is to figure out the minimum amount of medication I need.

And I'm continuing to redefine myself now that I left my Able Bodied Person status behind. With the help of friends, I'm continuing to expand my world by spending time outside the house without my family present. Last week I reached a milestone when I returned to the coffee shop where I had spent many happy hours, drinking strong coffee and playing on my computer.

My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

My status has been upgraded from amateur to professional