Monday, March 26, 2012


I often get overwhelmed that I am not getting better fast enough.  So today at my appointment we discussed where we have been and where we are headed.  This illness doesn't often have a linear course - so we are doing the best we can.   I feel like I have been fighting this illness for a long time, but when we broke it down, I realized that wasn't exactly correct.  Last winter was the first time I spent over 2 weeks in Phoenix for treatments, and the majority of the time was not focused on my chronic illness, it was trying to get my strength back from being beaten down by the winter.  I could handle very little and the focus was getting my lungs healthy again, so I wasn't constantly using the steroid nebulizer to deal with the reactive airway disease brought on by so many colds.  Reactive - that seems to be theme - I have a reactive system.

Therefore, October of 2011 was the first proactive step of getting ahead of the winter cold and flu season. I made it through the Holidays and headed here to Phoenix in January.  January 10th - April 20th is just over 3 months, approximately 15 weeks - add that to the 6 weeks in October and that's 21 weeks out of 52 in the year - to treat a chronic illness that I have had for at least 6 years - or 312 weeks.  All of a sudden hope became a lot clearer - I know have a plan - for the first few years - I was sailing without a GPS.

I have been able to consistently write, something I could only do in my head a few years back - today I drove to my doctor appointment by myself - confident that no matte what treatment I had I could handle driving home.  My greatest fear I told my doctor is spending all this time and energy and getting almost better - then doing too much and to slip back worse than before.  So we both agreed that the likely course of action would be to be a similar protocol next year, and then be confident we can wean off.  This protocol would be different if I lived in Phoenix - but I don't anymore and the summer months here are as detrimental to my health as the winter in Wisconsin - extremes - my body doesn't handle extremes well.

Time despite its regimented 60 seconds in a minute - 60 minutes in an hour - 24 hours in a day - 7 days in a week - 52 weeks in a year - despite this mathematical exactness defies rules.  It speeds up and slows down when we wish it would do the opposite.  Its an eternity and and instant - and I need to patient with time.

But today I needed a little perspective on time, and I feel grateful - I haven't been attacking this illness as long as I have been fighting it.  I am not swimming as much or walking as much as when I first got here, but I am doing much more difficult treatments, so I am listening to the voice inside that says rest - your time will come - just rest.  Its not easy, having faith in an unknown and different path - but if this works for me - I have made a promise to myself that when my old energy - life force - vitality returns, I will do my best to help others that are making little or no progress.  But right now I can only fight one battle - my own.  And I'm scared to even say it - but I may be gaining ground.

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