Wednesday, September 29, 2010

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.  

Saturday, September 18, 2010

Literal baby steps

I worry that I don't have enough computers

Saturday, September 18 th, 2010
I survived last week's computer loss quite well. In fact, I ended up buying a new computer. It's a used Dell netbook that I bought from our neighbors. It came loaded with Windows XP, but I also installed Ubuntu’s Net Book Remix. Typing on the small keyboard is very difficult, but I love its portability. The 10 inch screen is fairly bright and clear, making watching video pleasurable. Which is great because I spend plenty of time watching movies in bed.
The main reason I’ve been watching so much video at night is I’ve decided to stop taking the Ambien to get to sleep. Sometimes I am up until 2 or 3, sometimes I am asleep by 9. I’m not sure why I quit taking the Ambien. Maybe I’m trying to feel like my old self again; the self who didn’t take sleeping pills. Or I’d just like watching movies in the middle of the night (One evening I watched a Barbra Streisand movie and The Exorcist.  There were several similarities.). Which is something my old self did anyway.
I’m feeling a lot calmer now too. The people around me are probably relieved to see that. In my effort to rejoin the ranks of the temporarily able-bodied (the TAB), I’m spending a lot less time in the wheelchair; I would rather sit in regular furniture.
I’m experimenting with locomotion in the vertical position, also known as walking. On our last date night, we left the wheelchair at home and I used my walker. It was tiring and I was in a lot of pain later, but it felt so good!
One of my biggest challenges is relearning how to move my feet. I can lift up my leg at the knee and move my hip forward then put my leg down, but I have to concentrate on placing my foot. Otherwise it just tends to flop and drag my toes along the ground. Not very sexy.
The other big challenge is keeping my balance while I walk. I can’t stay upright and unsupported for more than a few seconds. Adrienne said that at first she thought I looked like a toddler, then she realized it was more like Frankenstein's monster. For the first time, living in a small house has an advantage. As I careen about the house on my journey, being able to reach out to a nearby wall and steady myself is a great comfort.

These journeys represent my attempts to rejoin the TAB. It’s easy to get discouraged at how short the trips are and how quickly I get tired; just walking from the office to my bedroom was cause for a brief nap. But then I remember how long a journey it has actually been, and I feel a sense of pride in myself and gratitude to the Lord.

Monday, September 13, 2010

Off Line

I'm going to be off line for the next few days while my laptop is getting fixed. My computer has been my constant companion for the last 6 months and I have been grateful for it!  

Many times,since I got sick, direct communication has been to much for me; even the phone has been a challenge.  The Internet has been a huge blessing.  Talking via chat or Email has kept me from being a total recluse.  

I've also had a chance to watch some great movies through HULU, YouTube and Netflix.

I hope it won't be too long before they get it fixed.  Until then,


Friday, September 10, 2010

Physical therapy starts/"A cat is a lion in a jungle of small bushes."

Physical therapy starts
Today was my first physical therapy session. Last week was just an evaluation, this week I was on the machines. We spent most of the hour working on my legs and then we finished off with some balance exercises. My legs feel like they’ve been flayed and rubbed with kosher salt, but in a good way.
Once I got home I had time for lunch before a friend came by to help me set up my new shared office space with Adrienne. Yesterday another friend had come by and did all the electrical things I could not do, such as setting up my stereo and speakers in the office. He also made a computer table that fits on the arms of my chair. Today we brought my clothes in and organized my stuff. The room’s not done, but it’s good to finally have a place for my stuff.
The following is something I’ve been working on for a week and decided to post as is:

"A cat is a lion in a jungle of small bushes." *
I told my new physical therapist that sometimes I forget that I am sick. When Olivia, the better mouser of my two cats, chased one under the couch, I wanted to stand up and lift the couch so she could get at it. It was a slap in the face when to be reminded I couldn't do it. Being reminded of my disability made me feel sick to my stomach.
After I told my therapist about what a jolt it was when I came back to reality, she offered the typical panaceas that I hear whenever I suggest that my life isn't perfect. She began to tell me how important my high expectations were, that therapists appreciate having clients that work so hard to have their normal lives, etc. I stopped her and said, “You don’t need to put a positive spin on everything I say. Sometimes things just stink.”
The fact that my life does not consist of sunshine, rainbows and unicorns is not necessarily a bad thing. One of the things that Ala-non teaches is acceptance first, happiness comes later. Someone once told me that bad thoughts (or feelings) are important; how else could we evaluate the good ones?
I am proud and grateful of the gains I have made. I've had the privilege of witnessing miracles. I know that I'm a fortunate man; many people with CIDP have much harder struggles’: physically, emotionally, financially, the list could go on.

Telling my therapist it’s a bummer to be reminded that I can’t walk wasn’t my way of being discouraged, it was my way of being brave. Bravery is another component of happiness. When I lack that bravery, as I often do, my Higher Power draws me close and reminds me that I am not alone. As long as I trust Him, I will be all right.

* Source: on the web, this is attributed to an Indian proverb, but I am not sure there are lions in India and I'm too tired to double check.

Saturday, September 4, 2010

Taking it to the streets

Have a happy and safe Labor Day, from someone whose every day is Labor Day. I am writing this from a booth at Kofenya, my favorite place to spend a Saturday morning.

Yesterday was my first outpatient physical therapy. My physical therapist looked at me with a fresh perspective; she doesn't see how far I've come, she sees how far I need to go. What's the advantage of being able to walk if I can only go from my living room to the bedroom?

Our plan is to work on building up my strength and endurance. She noticed that when I walk, I use my hips for most of the motion. I still don't have much activity or control from my knees down. We will work on using the muscles I have the most control over to improve my walking.

She also made it very clear that she expects me to work on these at home.I will feel I 've really earned these gains.

I had my second IVIG made into dose last week and it went very well, I spent the day watching movies. I also reduced my steroids by 5 mg this week. My physical therapist will help to monitor if my CIDP symptoms return. That is a relief.

Adrienne and I began going to the Corwin M. Nixon Aquatic Center on campus. There is a family/handicapped accessible changing room that is very spacious and equipped with grab bars. Unfortunately they did not install an automatic door opener, and I'm not sure I could open the door from the inside on my own. Being trapped is a great fear of mine.

After we get changed, we roll out to the pool and I transfer into the lift. It is easy to operate and I can use it alone. Once I get into the water I support myself by holding the wall or holding on to Adrienne.

Time to eat my breakfast.