Sunday, June 23, 2013

Saturday, June 22, 2013


I miss my friends.

How lucky are those that find true friends
I am one of the lucky ones

Tonight via Facetime it shook me to the core of how much this illness has cost me.   And sometimes it's just too much.  I cling to the beauty that I am lucky to have had so much to lose;  I will tell you one thing I have learned, I never needed to get ill to understand this fact.  I have learned a lot about myself and how to push on when you think you can't do it another second.  I have learned what it feels like to be isolated and compassion for those that have never known any other way.  But I never needed to learn what I had to lose, and for anyone out there waiting for some big event to show you, I have learned to find a place in my heart for you that it took you so long.

Tuesday, June 18, 2013


The Deluxe Art kit is going back....sharpies and crayons are about as crafty as I get.

Like those Make-Up Kits with a whole lot of too much

It has been a complicated and challenging four weeks.  The most difficult was once again accepting the reality that I could go from walking into my BFF's daughter's first communion and being treated like the "Aunt" rock star jet setting for four days for the special occasion and then feeling like it was all a mirage.  Participating in life for a bit and then your fairy godmother turned into the mean queen and your 3 wishes disappear; I returned from that high to Phoenix with soul crushing fatigue.  The mind game of believing you had pulled this whole damn thing off and then then falling into a sink hole just when you thought you were walking on solid ground.

Right now I don't feel like going into the details.  But this event reminded me of what it feels like to be desperate with this illness.  I called my parents at noon Milwaukee time and asked my mom to get on the 5pm flight to Phoenix.  I just couldn't do this without 24 hour help.  And she was here.  And it made all the difference.  It's a humbling and frightening feeling not being able to care for yourself.  I am doing better now, my mom stayed for three weeks and left this past Friday.  My doctor is out of town this week and wanted me here longer and see how I hold up without a week of treatments.

I am too tired to do much of anything, and the days get very long.  A friend suggested I do a craft, luckily he prefaced that statement with, "I know it sounds silly, but what about some sort of craft, knitting..." that's about as far as he got before I said, "have you met me?"  However, I had a few weeks back done a "craft" photo book for my niece as a present for missing pre-school graduation.  Then a bit of nostalgia brought me back to the special days my Aunt would take me to the needlework store and patiently try to share with me the joy of counted cross stitch, it didn't work.  There never was a craft that I finished.  My cousin Katie and I had a bet who could finish one of those 70's loop yarn projects where you got the little tool and the mesh was color coated, Katie finished a Panda pillow, God only knows what happened to mine.  My sister took up knitting in second grade, even made me a sweater, and this was way before the Hollywood knitting craze.  Me, not interested, not at all.

However, despite the idea feeling as rousing as being a 40 year old at a nursing home;  I found myself on Amazon searching out craft projects and with one click had ordered the above box and some canvases.

Yesterday I never left bed.  But today I felt a bit stronger, and that "deluxe craft set" was way too overwhelming, so I stuck to crayons and some sharpies, and I have to say it wasn't that bad.  It made me laugh because of the absolute lunacy that on a Tuesday afternoon I was doing an "art" project, made more bearable that Sex in the City re-runs were on in the background.  Then I laughed more picturing my friends and I in a nursing home listening to some lame 20 year old shout out where to glue your tissue paper as the soundtrack of our hay day would be playing v/s the big bands and Betty Davis movies that I would hear when I sat with my grandma at those equally soul crushing institutions.

If nothing else, it gave me some humor back in this mostly overwhelming condition.  It forced me to adjust what felt like success for a day and be grateful that I was even downstairs rather than the confines of my pretty bedroom.  Who knows...maybe I will take up knitting next...not a Fucking chance in Hell.  I'm down, but I'm not out...

Can you guess which is my Work of Art

Project 2...Niece just informed me to add some people on the mountain...
and maybe some birds and a cactus....will do...

Signed sealed to be delivered

Sophie...really? can we fit any more on this bed

The Side I am not Sleeping On - 

The Side I am Sleeping On -

Everything Within Reach

Me too Soph...I'm Beat...

Wednesday, June 12, 2013

Long Haul

Be Kind Whenever Possible ~ It is always Possible
Dalai Lama
This was taken last spring, I am looking forward to walking back to that bench in the woods at the park near my house.  I have been writing a lot in my head, at night, in bed.  Everything falls away sometimes with illness.  Eat, sleep, get to doctor and do it all over again.  Very little else matters, your head has no room for other thoughts or plans or decisions.  Last night I looked over at this faithful companion and thought what an amazing gift, the only thing she needs is me exactly how I am in this moment.  And that is all I have to give.

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