Friday, October 5, 2012

A(nother) New Normal

I constantly say "normal is overrated." I think it is because life has had a way of redefining what my normal looks like from year to year. You all know I was diagnosed with pulmonary arterial hypertension (PH or PAH) earlier this year. At the time of the diagnosis, I was determined to keep moving through my life in as "normal" a fashion as I could. In the beginning, I was lugging around a portable oxygen tank, so that was a bit difficult. It didn't last for long though. Then, I became oxygen independent for the most part. I was sailing along with only a few pauses every now and then for fatigue and shortness of breath and then June arrived with the gift (sarcasm) of a hospital stay. Once I was discharged, it was a rough 3 weeks before I felt "normal."

Over the last few months, I have felt great most of the time. My lupus continues to be in remission and there have only been one or two days where I felt winded or had chest pain. My check-ups have been going fine and my body has been responding to my various medications. (YAY!!).

Monday, I went to my PAH doctor for a regular check-up and during the appointment, I mentioned that I was going to Chicago on business soon. Well, folks, that opened a world of new issues that I have to deal with whenever I travel. First, I needed a high altitude test to see if I have to fly with a portable oxygen concentrator. There are only a few places in NY that do them and they were all booked for the next month. Since my trip is before then, we decided to go with the oxygen.

I called the company that does my in home oxygen set-up. They need a month lead time to get you a concentrator. Again, no go. I got on the internet and found a rental company that could get me one on an expedited basis for a small (I'm totally being totally facetious) fee. I called to find out what I needed to do, filled out the necessary forms, sent the company the forms and my prescription, called to confirm, secured the rental and then called the airline to comply with all of their requirements. At the end of it, I spent about two times the cost of my plane ticket to Chicago (or my originally budgeted entertainment funds)...and I can now expect this added expense every time I fly...if I don't pass the high altitude test (once I can get an appointment). I will get some of it back once I return the rental unit.

Phot taken from Google Images (from
I am all about the power of positive thought and I believe it has a lot to do with my well being and how good I've felt over the past few months. That hasn't changed even after the hoops I had to jump through today but it has meant another shift in my abnormal norm. Travel now takes planning well in advance and coordination with several vendors. Gone are the days of just agreeing to go somewhere and booking everything online. This whole being "sick" thing has a way of popping up and kicking you in the gut (or the wallet) but I'm just going to keep moving. If life is a journey, I'm taking the scenic (read: long) route but, God willing, I'll still get to where I need to be. 

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