Psyching up for the big game

For a long, long time I have been reluctant to write blogs because I’m rarely in a happy, high-energy mood. Managing my health 90% of the time doesn’t leave me cheerful and effusive. So this blog is written to psych me up. I doubt that it will entertaining to you. I’m preparing myself to hop on a plane to return from Ohio to LA twelve days after my intended departure. I am anxious, uncertain and filled with doubt. Briefly, this is how I got here.

I moved from Michigan to Orange County, California on December 1st. I was full of energy and pride. I had done it. I had unloaded my condo in Michigan at much expense, time and energy – and stress. I packed all my shit. Sold or gave away a boatload of stuff including my beloved pool table. I did all this for one reason – to improve my health and the consequential quality of life. I believed that this would happen because I had been to California twice last Summer and had concluded that I felt measurably better – objectively as well as subjectively. I ran this idea by my two cardiologists. They supported the idea and my dysautonomia specialist Dr. Grubb encouraged me to do it.

The energy and good health so high during my first two weeks in California dissipated. My blood pressure was not staying up with the drugs I take to raise it. I was angry and disappointed because I thought the pacemaker I had received on August 12, 2012 was not helping with my pressure. I wanted to swap it for a Biotronik with CLS. That’s a pacer that senses changes in blood pressure and responds by increasing heart rate and strength of the contraction. I discussed this with my LA cardiologist and he agreed – based solely on my prior experience with that kind of pacer. I had that particular pacer replaced on August 12, 2012 because the site of the pacer was inflamed and infected.) I wanted the surgery to happen in Toledo so I could get the benefit of the experience of Dr. Grubb. I had the surgery on March 26, 2012.

Now here I sit on April 12th. I cannot get my blood pressure elevated enough to stay on my feet for much more than 60 seconds. I am a semi-invalid. I’ve been staying with my eighty-six-year old mother for the past two weeks in the house I moved to in third grade and grew up in.

I could write pages and pages about how utterly frustrating, depressing and scary it has been. But I won’t. I have to get my ass on that plane tomorrow and get “home”. I have to accept where I am and work my way back. I have stepped back in time to where I was 18 months ago. I worked through it then and I will do it again. I have to remind myself every day that I thought I was not going to live out the year back then – but I made. I exceeded everyone’s expectations including my own.

I’m not one of those guys who ignores every set back and pushes ahead single-mindedly. I analyze and over-analyze. I imagine the worst. I ask myself if this is it. I’ve finally slipped into invalidism. Bring on the wheelchair and diapers. So I can’t just think positive thoughts, but what I can do is remember that I have been through this. I refused to give in and I improved my quality of life until it was at a very high level. That’s what I will do again. I have dysautonomia and Parkinson’s – they don’t have me.

I am not religious or even spiritual. No divine being or inner peace is going to carry me through this. Faith is not going to cure me – expect faith in myself. And my amazing family and friends who support and encourage me continuously. Do you know how much I love my grandchildren? Off the scale. I have another one due in less than six weeks. I’m going to watch these kids grow up and they’re going to remember me because I was part of their life.

OK, so there's a pep talk and there is grim reality. There’s the hard work of living with and trough the misery. For example I wish I could pump myself up to the point that I’m saying bring it on tomorrow and in the following days and weeks. But I will be nervous and miserable. But I’ll live through it – the fucking plane will land in LA and my daughter will pick me up and I’ll sleep in my own bed. I hired aides to come in three days a week and I have an aide coming to take me to my LA cardiologist on Monday. When I get there I will insist that they adjust my pacer to improve its functioning. I will feel more secure when I leave that office. I’ll exercise as best I can. I’ll get stronger and I will walk. I’ll walk until I can walk for an hour without sitting down.

Whatever it takes, that’s what I’ll do. . . OK, it’s out of my head and on paper. That helps. It’s just the first step. Let’s get some sleep and get on that damned plane. Time to stop being scared.

Good night.