Saturday, April 28, 2012


I have four "draft" posts, for some reason the past week or so I have had a huge writer's block.  I start I stop I analyze I get off track...therefore more accurately a writer's storm - where so many things are running through my mind that I am having difficulty putting these thoughts down in a coherent manner.  Its been a week, actually, as of right now at midnight, exactly one week since I have returned from Phoenix - and leaving day and arriving night have had there own challenges.  I feel out of place - a bit unhinged.

Of course, the red battery low signal is staring me down in the upper right corner, reminding me of how utterly un-organized I am...and since its midnight and I am writing by the light of the computer screen and have absolutely no desire to go find the power cord - I will have to wrap up these swirling muses rather quickly...

So, in my insomnic state, due to the overwhelming fatigue that had me in bed until 2pm, i will try and focus.  The good news is I can't sleep because I rested, something that normally wouldn't affect me - the bad news was I watched three back to back episodes of the Guiliana and Bill reality show...and in spite of myself got a bit misty eyed.  What struck me was how often her husband said he was proud of her during her struggle with infertility and then breast cancer diagnosis and treatment.  I may have mentioned this before, but its bears repeating, he also doesn't dismiss her personal struggle as "not as bad as someone else's" and for someone dealing with chronic health issues it has been my experience, except for my immediate family and a few close friends, that is something I rarely hear - and often in someone's attempts to "make me feel better" i will hear the exact opposite - like at least you don't have...the thing that also struck me was the Bell Shaped curve of her struggles and the orderly pro and con list that the couple use to solve the problem at hand.  I won't lie that I felt a bit miffed when I saw all the outpouring of support and cards and emails...but the big C patients got smart - they took action and said - this sucks and here's what you can do to help...

That's the thing with CFS or Chronic Immune Dysfunction Disorder - doctor's can't even decide on the correct the hell do you have a road map if you don't know where you are going?  If a consensus has not been reached on the name, causation, treatments...Like so many other's that deal with a chronic condition, you are robbed of the luxury to take a linear course.

I know this illness and its unpaved path hold many roadblocks for both the "patient" and those around them.  Speaking for myself I may not always make it easy for others to know what to do to help - here's the thing - you don't really have to do anything - you just have to say - I'm proud of you.  My family has this very embarrassing tradition of singing "the proud song" most often at restaurants or in front of friends - when we were "little" and despite all the pleading of stop stop - please do not embarrass me - deep down, acknowledgement is a wonderful gift that feeds us when we feel starved.

So as my warning light is flashing - I'm back on the horse - because I know writing helps - so I will take that prescription from myself and check the box marked "pro".

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