Jesus is Lord

I have always heard that "God will never give you more than you can handle,"  and there are two opposing ways to look at it:  Sometimes that is good news, sometimes it is not.  After all, who wants to be tested?  I would never chose to be driven to the point where I end and my Higher Power has to take over.  One of the good things about that sort of testing is it can improve my relationship with God.  But what happens once the test is finished?  

I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Monday's update

As always,  my appointment with Dr. Boughaba had an anxiety relieving effect.  I consiuder myself very fortunate to have found her.  We talked about finding a new neurologist in Statesboro and she is willing to help with the search.  That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.

Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition.    She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more.  She proposed extra IVIg treatments for now.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

Good Days, Bad Days (You know I've had my share)

I've been listening to plenty of Led Zeppelin lately.  Not sure why.

Just so everyone knows, this is a bad day (actually, several bad days).  I am tired all the time, but can't sleep and I am in pain.  Nights are the worst.

I  have been so busy working on the physical therapy aspect of my recovery that I forgot I have a chronic illness that I know almost nothing of, especially how it manifests itself  after the initial symptoms abate. 

So I am taking it to the Internet:

Continuity of Care

Monday, January 17, 2011 09:04:24 PM

We made it to church yesterday.  I kept falling asleep; at one point Adrienne woke me up because I began to snore...

I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.

I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty.  I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house.  I have had fifteen different therapists.

Shaking my hips from side to side

Friday, December 17, 2010 01:58 PM

I don't remember the last time I learned to walk; after all, it was over 40 years ago. It is something I never thought I would forget, but after CIDP had it's way with my nerves and the ensuing muscle loss, here I am, a toddler at age 46. 

Moving a big body like mine upright, balanced on two small platforms requires plenty of strength and coordination. There is plenty of effort in each step.

The first step was waiting for the nerves to heal enough that they could activate the muscles, then I had to rebuild my strength.  Once I could start moving the muscles, the strength came back quickly.  

Not all the muslces are working properly yet. It is hard to keep my toes up while walking, which can trip me. I need to concentrate on flexing those muscles in my feet. And also pushing off with my foot in the graceful, heels off the floor first motion while bring my leg forward requires thought.

Next, my knees; I had to learn their rhythm for walking.   Sometimes the leg needs to be flexible, sometimes it needs to be rigid.  The knee  controls that.  I have to concentrate on which leg is straight and which leg is bent and make sure the knees are doing their part.  

The latest area has been my hips and pelvis.  My impulse is too move my hips up and down or side to side while throwing my legs in front of me.  For smooth walking, that area needs to be held level.  This give me better balance and helps support my upper body.

Typically, I can't keep up that level of concentration without something to lean on.  Otherwise I would fall forward on my moon face.

Put it all together and this is what goes on in my head for every step:  

1. I start from an upright position, both feet flat on the floor.
2. I bend at the knee of the one leg, lifting that foot, the heel to toe off the ground and swing that leg forward. I place that foot on the floor in front of me, planting it from heal to toe.
3. I push off from the trailing foot, raising it from the heal first. This pushing off allows my body to swing over the pivot point created in step two. Going up on my toes is very difficult for me to accomplish, my feet don't want to bend that way.
4. Keeping the second knee straight, I bend the knee of the first leg, planting that foot in front of me, heel first again.
5. Through out this process, I need to concentrate on keeping my hips level and my body in an upright position. Right now, my tendency is to lean my torso forward, adding to the precariousness of the process.

What do you think about while walking?

Tuesday, December 21, 2010 09:41 PM

An answered prayer

Friday, November 26, 2010 10:10 AM

We flew into Dayton last night and boy, are my arms tired! I couldn't resist. It was a late night for us and I had an early morning today. We are both tired and I am feeling a little under the weather (sick). It is probably from my poor dietary choices and not from a bug.

We left New Orleans on Monday and drove to Mobile, Alabama to visit a childhood friend of Adrienne and her husband. After a good night's sleep, followed by a long nap in the morning, we made it to their house early in the afternoon. For the next two days, they treated us like royalty, opening their home to us and chauffeuring us around Mobile.

I pushed myself on our site seeing visits, walking as much as possible. We visited a Civil War era fort at the mouth of Mobile Bay and I must have walked at least 90% of our time there,going around the perimeter and down stairs on my feet. It was fun to see the world from that height. It did take its toll on me and wear me out.

On the way out, an elderly lady approached our group and asked, “Well, did he behave himself?” The rest of the gang paused to talk with her and joke about my behavior. I rolled ahead, embarrassed at being talked about as if I were a hyperactive twelve-year-old.

When I calmed down, I realized that I had it wrong; she wasn't singleing me out because I was a special, she was trying to ingratiate herself with us in a friendly way. I remember a very social client who was mildly retarded and used a walker because he had cerebral palsy. One of the things he liked to do was approach a pair of people having an animated conversation, such as two women in the grocery store where he worked. Once in position, he would wait until the conversation reached a point where both women would begin laughing. He would laugh with them and say something like, “You just don't know...” at which point, the ladies would include him in the conversation, as if he had been there all along. Tricky bastard.

Adrienne's friend and her husband many rather personal questions about what happened to me, “What was the worst part? How many medications did I take daily ? My illness was monopolizing the conversation and I began to feel a little self-conscious. Was I the ambassador for disabled?

One of the things that Al-anon has taught me is that when other people exhibit annoying behaviors, it is often because I find the same things annoying in my self.

With that in mind, I flipped my perspective and realized that these 3 people were trying to do something I had difficulty doing; ask some one questions about their disability. Once I had a friend who was in a wheelchair and I let that chair get in between us.I never asked him why he was there or anything about his life outside of the narrow focus of our shared interests. I never did it because I was afraid to bring these subjects up. That was silly of me.

He may have welcomed sharing that part of his life with me. If not, he was capable of letting me know. This may have deepened and improved our relationship. It would have been helpful to talk to him about these things when I got sick and realized I was about to become disabled.

I sent him an email last summer, but never heard back. I hope I'll hear from again; I miss him and the things we talked about. We also might have done the other thing friends do; support each other through difficult times.

We left Mobile Thursday afternoon drove to Louis Armstrong International Airport in New Orleans for our flight home. I was once again groped by TSA; was no easier the second time. However, this time, the Air-Tran employees were very courteous, speaking only to me about myself and asking before grabbing my chair.

I left the South renewed and encouraged by the friendly people we had met. I don't think it was because I was a handicapped, but because they were genuinely good people.

I especially appreciated the hotel. The room accommodated myself and my chair nicely and the bed was comfortable. We were late leaving the motel, largely due to my exhaustion. An employee came to our room to check on us. She also took a moment to hold Adrienne's hand and prayed for our safe travel home.  She showed herself to be braver than me.

Friday, November 26, 2010 12:34 PM