Monday, September 23, 2013


August 1st, September 3rd and September 13th 2013 three days, three amazing days.  My old definition of an amazing day looks so far from what is now amazing I ask myself which version is truly the blessing?  Kind of one of those "things I wish I would have done before I died" type lists people tend to share...the things is with a chronic illness those "little stop and smell the roses things, well you stop.  I would love to say the simple things that get magnified are the biggest blessings, until the trade off for noticing these things is trading in your independent life for a dependent one.  I wrote this blog a few days ago and wanted to add some pics and look it over, and then yesterday happened and I read this and feel like taking the computer and chucking it across the wall and watch it shatter into pieces to match my despair last night.  However, I will "soldier on"...which that term popped into my head after reading this fabulous post by My World...  So here we go...back to the original post and tomorrow will catch you up to the reason for the Apple hitting the wall.

Amazing awe inspiring days before my health declined insisted of something "worthy" of such a title, a great concert, a fabulous party or a city or country I had never experienced and may never again.  August 1st, September 3rd and September 13th were amazing in their simplicity of an extraordinary ordinary day that had an ease that I so rarely am granted.

This illness as I have at nauseam repeated and have read over and over from other sufferers lies in the disbelief of what is really even going on.  I also notice that we struggle constantly with explaining what this illness feel like and I realized last week after the 13th came and went and the 14th landed me crashed in bed it can be described as the reverse of the beginning of a cold or flu.  Imagine when you feel a cold or flu coming on; first your head gets a bit foggy, your brain doesn't feel quite "on" and your body just isn't yourself.  Then perhaps it gets worse, and the simplest of tasks get overwhelming, so you hydrate, maybe take a few Advil and then slosh through another day.  Finally, you decide that this little invader has become too much to handle and you succumb to bed.  You may be a bit crabby than normal or needier, more sensitive of mind when the body hurts.  So you watch some movies lie around and then begin to move to the other side of the bell curve - recovery.  And all of a sudden, without much warning as a switch has been turned off you look around and take a deep breathe and you feel like your old self again.  That is the course of an acute illness, this illness takes all those feelings and you live with them every day and once in awhile like watching a movie backwards you are granted to Easyville.

August 1st and  September 3rd and 13th for me was a first class ticket to that magical land.  That ill feeling is normal and the reverse switch went off I felt like my really "old" self again.  Everyday stuff was just that, everyday stuff.  Easy.  That's the best way I can put it, everything was just simple.  Instead of swimming against the current without waking or doing anything differently the current changed and I was floating down the lazy river.

Seriously she would do better than offense Bethany
The most amazing best part of September 13th was the ease of heading down to my BFF's place of work.  The day prior it just slipped out of my mouth, "why don't I bring you dinner at the station?"  Even as the words came out my head was shocked that I even suggested that.  It meant driving a bit further than I have in months.  Entering the station where once behind the locked doors little magnetic security doors (which normally gets me tense) are at every turn.  The traffic which was increased by construction and a Brewer's game.  The normal list of hurdles to cross is so long they are hard to verbalize those were the obvious ones and as each one was jumped over I was truly a track star, clearing them with ease.
Yep the "oversized" not my most flattering
The worst thing about the entire day was that when we took some pics I realized my favorite "Mindy" sweatshirt made me look about 15 pounds heavier than I am!  Oh my goodness that was the worst part of the day!  My VANTIY the WORSE PART OF THE DAY...that is f'ing FANTASTIC!!!

The next day the spell vanished but I had these amazing days, three amazing days.  My doctor said she has seen this before with her chronic illness patients, that you begin to have these days so good so different than normal that you feel you dreamt it up.

I often feel like this whole thing is a altered universe dream and I am going to wake up and a version of that show "This is your Life" with some 70's game show guy in a bad tux will appear and in front of me certificates to all my favorite restaurants that I bet have been missing me because oh have I missed them.  I use to be Queen of Take Out and Restaurants no one takes out from.  Many Bartenders in Phoenix and Milwaukee knew me not for my drink, but for my five star restaurant orders served in to containers.  Like a long lost friend that finally returned, Houston's, Bartalotta's oh have you been missed.

Then there would be this buffet of all the foods that I use to love that have been taken: apples, pears, nectarines, peas, carrots, potatoes - mashed, au gratin, baked, double baked, avocados, nuts, bananas - okay you can keep the bananas...

The next table has plane tickets to all my favorite places that I dared not dream I would visit again and some new places to discover. It just goes on and on of all the amazing things I miss and push deep down and make a conscious effort that missing is just wasted energy.  But then at the end would also be a little video of all the absolutely ordinary extraordinary days that maybe no one around me even noticed how much they filled me up.  Noticing the extraordinary in the ordinary like September 3rd 2013 being well enough to watch my niece head off to her own amazing adventure - kindergarten.

And I may look back at the smorgasbord of things that I desperately have missed or more importantly missed the easiest of their attainability but then I would look at myself at 8:15 am holding a cup of coffee and giving my niece that big hug and the deliciousness of it that filled my heart not only because of the excitement of her new adventure but because I was able to make it and that buffet behind me doesn't feel so powerful anymore.

I still feel strongly that I never needed an illness to show my the specialness of moments or the joy in the everyday, but there is no way to deny how much illness heightens the intensity of the every day when the every day that normally is so hard takes it's grip off an gives you some moments of ease rather than dis-ease.

I have returned to Phoenix with additional protocols that we are trying in hopes of breaking the glass ceiling towards further progress.  I am hopeful and I am tired oh so very tired and then I count my blessings and they go much deeper than August 1st, September 3rd and September 13th and I am humbled by this journey and so grateful for all that have chosen to join me.

Enjoy...David Wilcox singing You Make it Look Easy

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