Friday, December 31, 2010

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.

Saturday, December 25, 2010

Merry Christmas!

Saturday, December 25, 2010 9:15 pm

Nothing says Christmas! like a trip to the emergency room.

I am a little light headed now, it has been a busy couple of days.

It has been heart warming to hear about everyone's Christmas.  We got hit by the flu bug-me the hardest.    After a long night of vomiting and diarrhea, I woke up this morning unable to move.  Very scary!

Because of the auto-immune issue, they admitted me to the hospital.  The good news is I don't have an infection.  But wow, I have never felt as sick as I did last night and today.

It is eerie how comfortable I've gotten with the way things get done in hospitals.  What a strange year it has been.

Tuesday, December 21, 2010

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

    Friday, December 10, 2010

    Love and Other Drugs

    The following paragraph is from my other blog, full text here.  It is a post on the movie Love and Other Drugs, I am posting it here because it deals with illness and disability.  Feel free to leave your comments here on the blog page.

    "For me, it is the difference between a sign that reads “Parking for People with Disabilities,” and one that says “Handicapped Only,” as if there were some sort of apartheid between the TAB (temporarily able bodied) and the handicapped or disabled. Because of my illness, I often need help; sometimes, to accept that help I have to surrender the undisabled part of me. Maggie does not wish to be consumed by her illness and struggles to retain her personality beyond her illness."

    Thursday, December 9, 2010

    Thursday Afternoon

    Thursday, December 9, 2010 03:27 PM

    I am tired again.

    I have resumed taking daily naps and stopped watching late night horror movies to make sure i am getting enough rest. My daily shower/shave exhausts me so entirely that I need an extra 45 minutes to recuperate.

    Exhaustion has been my constant companion since I got sick. Once I started to recuperate, I was able to do more with less energy.   

    My nurse at Humana thinks it may be due to my lowered Prednisone, I have been gradually reducing my dosage from 80 milligrams down to 35 milligrams a day.  I've already gained plenty of weight because of them, reducing my activity level because I am too tired now that I am way down on them is just cruel.  

    I am continuing to get stronger-my physical therapist says that my gait is getting better all the time. Today was the first day I walked into therapy without the wheelchair. It has been moved into the garage, only to be used for the most arduous trips.

    Short but sweet.

    Thursday, December 9, 2010 03:49 PM

    Friday, December 3, 2010

    If you love something, let it go to Florida

    My son Alex came to Ohio this summer to help  out when I was bed ridden. He spent months caring for me, helping me exercise, helping me get in and out of the car, and so many other things the list could go on. He also took on several house hold tasks to help Adrienne. Whenever we needed him, all we had to do was ask and he was right there. Even in the middle of the night, I could call  and he would come to roll me over or reposition the pillows so I could get back to sleep.

    And he did everything with a smile. His cheerful attitude and sense of humor kept our spirits up all through the summer. His love of word play would remind me that life is meant to be enjoyed, not endured.

    But Alex is  a sun child; he doesn't like cold weather. Knowing this time was coming, he has been working on getting himself set up with a place in Florida. He is leaving tomorrow, first thing in the morning. We will miss having him around.  

    The truth is, I will never be able to repay him for the kindness and the generosity he showed me this summer. He gave me something I could never afford or repay myself. I guess that is the best definition of “gift” I can find.

    Al & me, Summer, 2010