Archive for March, 2012

It really doesn’t matter how any of us feel about Dick Cheney. The core of the story is he received a donor heart because he was a patient who needed one and he was healthy enough to receive it.

I think that’s a key issue many are overlooking. Mr. Cheney has access to great healthcare. His health was monitored regularly. He did not have the stress of worrying about a shrinking income or loss of benefits due to his heath. He did not have to worry about being a burden to his family.

I see speculation of strings he may have pulled. Honestly, I think because he had access to good healthcare, like I do, he was able to survive and be well enough to receive a donor heart. His health has been closely monitored. In other words, he received all of his necessary check-ups and was given ample time and sufficient care to ensure his recovery from each heart attack.

So, I think we can use Mr. Cheney’s story as an example of what is possible when better than average health care is available. That’s all. Imagine what we could accomplish if patients all over the United States had the same quality of care. Other than wishing him a good recovery, and acknowledging the benefits of high quality medical care- everything else is just noise.

In the late 80’s it was all about hair bands and the “X” in Sex.  Now its the ’10’s and it’s Sclerodactly & the “S” in CREST.  (Click here to see a picture of my hands) Oh how times have changed. (& no I will not post a picture of me in animal print spandex)

Photo of hands contracted by sclerodactyly

My hands are more useful than they look. With massage, I get lots of passive range of motion. The condition of my hands is called Sclerodactyly, the “S” in CREST

Here are some things I miss:
Holding hands
Throwing a baseball

I could go on and on but the truth is, I have spent enough time pining over what I can’t do.  Here’s what I can do:
Clap with my wrists
Hold fingers
Play catch with a bigger ball.
Play Legos with my son
Get the best parking spots
Use my expanded vocabulary that includes many latin based words
Appreciate the metric system (Why are we NOT using it? So much easier!)
Type like Peter Jennings did, with two fingers.
The ability to tell if a CD case is empty just by picking it up.  That has nothing to do with Scleroderma but it is an underappreciated skill.

CREST has changed the way I do things, but it has not stopped me from doing what I want to do.  (Well, except rock climbing- but I’m working on that.)  My point is, I can choose to focus on what I can or cannot do.  Both lists would be right.  The list I choose to focus on does make a difference on how I face my health issues when I wake from my dreams of normal hands to the reality of the hands I have.

I can’t believe I found this video: Enjoy the spandex and younger KISS without make-up.