Waiting. We all do it. We wait in line at the grocery store, the department store and the DMV. Boy do we wait at the DMV. But none of this is what I’m talking about. This is all ordinary types of waiting. What I’m talking about is waiting in limbo. That time many of us have experienced where we have seen our doctor, taken some tests and are now waiting for doctors to get together and confer about our issues and what the possible fixes might be.
This is where I am at right now. I’ve had tests, my team here in Connecticut is compiling my history and recent testing and sending it up to Boston Children’s to be reviewed by their people. When they get the information they will get together in a group and talk about it. They may decide they need more information, which means more testing for me. Then they will get together again and review everything again and come up with a solution. What that means for me is a few more weeks or more of limbo.
I’ve been here before. I went through this same process seven years ago. They talked about the possibility of surgery and of transplant, while I sat around and waited for them to figure it all out. I know from experience that dwelling on all that dark stuff is stressful, to say the least. Do it too much and it will give you a nervous breakdown. So what do you do? How do you get through it? For me it’s been about filling my brain with new things. Looking at things in a different light. I could sit around and wonder why me? We all could. I don’t think anyone would blame us. Instead of thinking of this time in my life as a time of stress and worry. I choose to look at it as a time to learn, try to experience new things and do some old things I didn’t have the time for. After all I can’t work anymore so I have the day to do with as I like. This is how I deal with limbo.
I go for a walk every morning (Doctors Orders) and I take three things with me when I go. My dog, Because no one likes to be alone and he needs the exercise to. My camera, because I love photography. And I take a sense of curiosity. I try to look at the world in a fresh way every day and I am constantly amazed by the things I get to see, simply because I am curious enough to look.
When my walk is finished I make myself some breakfast and look for new recipes. Lately I’ve been into baking. Apple crisps, pumpkin spice muffins, and rosemary garlic bread. The house has smelled delicious these past couple of months and I’ve had to be extra careful about my portion control. I go through any photos I took and delete or edit them. Then I may hit Facebook for a while or bake, depending. I make myself lunch and pooped by now, eat and take a nap.
When I wake up one or two hours later I will pick up my guitar and play a little. I try to learn a new song every week. Then it’s either start dinner or Facebook for a while until dinner is ready. I am addicted to Facebook, so it’s always on in the back ground, even now.
After dinner I get together with a fellow CHD adult. A young man named Mark. Together we are currently working on an idea of his to start a Facebook group, for CHD Athletes. It will be a group to go and talk about exercise and nutrition as it pertains to CHD. We hope that it will inspire our fellow CHDers to be healthier and to do more in their lives. We will be promoting all types of exercise and working with CHD individuals to find workouts that they can do to improve their health.
By this time I’m beat and I may watch a little TV and go to bed. These are the things I do. The way I fill my day. The way I keep from thinking about the what ifs. The way I choose to keep the worry at bay. Maybe you don’t like to do some of these things, or all of them, I don’t know. But please, if you are in limbo…if you are waiting, find something, anything that you might enjoy and can do and do it. Remember, a happy patient is a healthier patient.
Yours CHD friend Jon