Saturday, June 19, 2010

It’s all good

Wednesday, June 16, 2010

There is really good news, like praise God for the miracle of modern science good news. The treatments are working. After the second or third day of IVIG treatment, and a week on steroids, Alex noticed that my strength was returning. I could pick up my tray table and move it off me. While transferring from the chair to the bed, legs moved. I am getting stronger every day. I just spent 20 minutes cleaning up the scraps of my lunch and putting the dishes into the dishwasher.

Here's a list of some of the things that have improved:

  • Confidence with my transfers; I was never certain when my arms would give out and my body would pitch forward into space. Having confidence that I can support my upper body without having to worry about my elbows buckling makes getting from place to place a lot less scary. My legs have improved also.
  • Feeding myself; I needed help getting the food into my mouth. Even with a special device over my fork, I couldn't hold it even with both hands.
  • Wrist strength; I no longer hit myself in the face with my fist. I'm also better at picking things up and putting them back down.
  • Getting dressed; I can change shirts by myself.
  • Typing; I still rely heavily on voice recognition software for my phone and computer, but I've regained in the ability to push the keys.

Immediately after finishing my last IVIG treatment for the month of June, the hospital's free wheelchair accessible transportation took me to see my local physician. It was a very informative appointment. He was very helpful, taking great pains to answer our questions. For once Adrienne didn't have to position herself between the physician and the door to prevent him from leaving, a problem we often have with neurologists.

He upped my metformin, my oral diabetes medication. I am also doing daily blood tests

Starting tomorrow I'm going to begin taking Wellbutrin for depression and to quit smoking. The reason I decided to quit smoking now, or least once the Wellbutrin starts to take effect, if the IVIG does not work, my best hope will be to get into a clinical stem cell trial. Which I'm sure if I'm smoking I would automatically be disqualified from. Note to myself, is this an example of irony? I don't think so. I think it might hubris, with the consequences of my decision to smoke being greater and much quicker than I had expected them to be.

As soon as it arrives from a mail order pharmacy, I will begin taking Cellcept, an immunosuppressant. Yesterday I asked my physician if I should get my tattoo before I started taking this medication and he pointed out that my immune system has already been compromised by the steroids. No more tattoos for me.

My physician informed me that because I'm taking steroids, a surgeon would be reluctant to operate on me, any wounds will take longer to heal, and there is an increased risk of infection. I've already begun to fantasize about what fatal microbes I might be inheriting from every handshake or cough.

I still push against my own perceived fears; today the three of us took a trip to the mall and I was instantly overwhelmed. I was aware of how small the world my world had become. I felt like I was a very tiny person living in a world of magical giants. I was awestruck by the amazing things that they could do..

I used to enjoy roaming through the stores in a mall. It was a good stress relief for me. Going into a store on my own the first time was intimidating, a feeling that was exacerbated when I knocked over a pile of boxes. The hats I wanted to look at were out of my reach, but I was quickly surrounded by every available clerk in the shop. They helped me find the ones that fit me, but were reluctant to help me move my chair over to the mirror (the carpet was very thick). This became a pattern; the salespeople either pretended I wasn't there, or they mobbed me. Being ignored made me feel frustrated, but all the extra attention made me feel nervous and anxious.

The mall was a great opportunity for me to practice interacting with other people. I didn't realize how hard it had become for me to talk to a complete stranger, unless they're a medical professional. There was a giddy moment when I rolled away from my companions to check out the watch counter at a department store. Watches, I explained to the lady behind the counter, were like crystal meth to me and I was fixing to score. I had no intention of buying, but it was thrilling to put beautiful things on my arm and admire them. She practically threw a variety of beautiful watches at me.

I had forgotten how much I enjoyed looking good. I used to take pride in my personal appearance. Wearing a fashionable shirt and a clean pair of slacks gave me a sense of self satisfaction that I had grown used to and accepted as I've gotten older. I would admire my accoutrements and view them as signs of success and maturity. I gave all that up when I went back to the hospital in April. Since then, my wardrobe has consisted of shorts and T shirts.

While in the mall I faced another significant challenge; using a public restroom. Presently I am unable to do buttons and zippers. Therefore going to the bathroom requires a companion. Fortunately for me, Alex volunteered to help. He also gave me a quick Spanish lesson. He also noticed that there were special cutouts under the sinks to make them a wheelchair accessible. This was another first for me; I was able to wash my hands at a sink.

Some goals for the future:

  • Buttons and zippers
  • Sit up in bed
  • Use my feet to move my wheelchair
  • Turn my bedside lamp on and off

My step daughter Natasha asked me to describe what my world is like. My world is very small. And what is big in my world, is tiny in hers. Despite the obstacles, I am grateful for the process I am going through because I hope to rejoin her in that big world of magic and wonder. The process of getting there will be a journey filled with miracles for me and I will praise God for each one.


  1. So do not fear, for I am with you;
    do not be dismayed, for I am your God.
    I will strengthen you and help you;
    I will uphold you with my righteous right hand.
    Isaiah 41:10

  2. Thank you Donna for that inspirational verse.