Saturday, June 19, 2010

A lot on my mind

I’ve needed to blog lately, but unusually, I’ve been putting it off the same way I put off dusting or ironing – there’s always something that seems more important and provides the perfect excuse to put it off. That’s unusual because I actually enjoy blogging very much. Lately, however, there are just some things I’ve started to think about, and then thought better of the idea and simply changed the channel in my brain.

Last weekend was my birthday. I had a wonderful birthday with lots of sweet messages from friends etc. I went to dinner with Echo and Karen and Jevon, who I hadn’t seen in ages. Tina J. spent several nights at my house and Tina B. joined us for a day. It was like a teenage slumber party, only maybe a tad bit more laid back. It was a great birthday.

As I get older, however, birthdays start to take on a little more significance. Of course as we all age we’re all getting that much closer to the various problems associated with old age – but when you have something like HPS, it’s more than just a general sense of getting older. Somehow, with each passing birthday, it seems as though the odds of starting to experience increasing problems go up. Perhaps it’s my upcoming NIH visit that adds a tad to the anxiety.

When I was in the drug trial and went to NIH every four months, any change was gradual. I didn’t worry as much about major changes. Now, however, it’s been a year since anyone had a look at my lungs. The pulmonary function tests I had in January were down, and I’d chalked it up to the cold I had over Christmas. Now, we’ll see if that was the case, or if I’ve lost anymore ground. I keep telling myself my cough is from allergies. What if it isn’t?

My life certainly isn’t what I expected it would be at this age. Most of the time I don’t let that bother me, but there are those moments when I think about my career and my finances and I feel incredibly frustrated. I did everything you’re supposed to do and thanks to health issues, I have nothing to show for it.

In those moments I try to think of the serenity prayer:
God, grant me the courage to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

I can’t change how HPS has affected my career or my finances. I can’t (immediately anyway) change the health insurance and government systems that force me to live my life to secure a way to pay the medical bills at all costs.

By spending my energy on helping the Network and various other outreach and advocacy duties, I can,, perhaps, make small changes in the world. It’s the wisdom to know the difference part that can really hang me up sometimes. Sometimes it seems like there “should” be something else – something else to do, or be – but then again should its self is a dangerous word. It indicates unmet expectations, and unmet expectations can be so frustrating.

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