Wednesday, October 10, 2012

Day 3

I just read upnorth's blog UpNoth's Blog and it broke my heart - literally broke my heart - for all of us suffering through this illness - and are underwater in the dark trying to find the light to surface.  i am feeling utterly blessed right now - i said to my doctor today - i forgot how hard this is - and then i realized its in the difficulty that may bring me closer to free - (indigo girl song unintentional - but no reason not to give them a shout out) one of my dad's friends is staying with us this week and he's a talented carpenter and working on our condo.  he lives in lake havasu, arizona now - but when i was growing up he was a regular tuesday night dinner guest.  i have spent most of my days other than at the doctor upstairs in my mini suite in bed - and this morning shannon (my dad's friend) said something really compassionate - i don't know exactly what i am too tired to remember  - but i think it had something to do with all the foods i have had to give up - and i looked at him and smiled and said - you know shannon it could be a hell of a lot worse - i could never have found my doctor  -  i could know about treatments that we couldn't afford - i could be slumming it at a Motel 6 - and my list could go on...but I'm not - yes i have this awful crazy ass illness that has more twists and turns than that road in germany that i am too tired to google for writing perfection - but you get the gist.  I am exhausted and there are days that i think i can't manage this illness one mili second longer  - and like Sue said then we get up and do it all again - and that takes courage - I am blessed with so many other gifts - amazing caring friends and family - the best dog on the planet - except of course those reading this with their own best dog in the world - and it seems as soon as i broke the barrier and asked for the help i have needed for so long - so many have stepped up to the plate.  So to UpNorth - my heart breaks for you - you are in the trenches and have been for longer than me - I will send you all the hope i have for a better tomorrow -  but remember - this illness does attempt to strip you naked of your identity - we are all so accustomed to defining ourselves by what we DO - and then this comes along and strips those things away -little by little - we no longer Do things - we observe or attend - or manage -  but while it may take what you Do and how that defined you - and i know it makes us short tempered and crabby and i apologize often for not being my normally patient self  -but keep telling yourself - that is not you talking - that is the illness speaking for you - you are there - deep down you are there - don't let it rob you of that for one more second - you are a strong amazing writer - artist and survivor - and this illness  does not define you - it may try and somedays it wins - but not today okay - not today.

Day 3 - was able to handle another blood treatment - marking the calendar.


  1. Thanks for the hdk, I think perhaps I came across more depressed than I am. I think part of what I was writing is that these are all the losses, and not that I don't mourn those....I really do....everyday. But once I accepted that this is my life, there was room for other things too, perhaps to try some other things (Like the art which only came about after I was ill). I am so lucky to have a community like you and others online that at least know what I'm talking about. It makes it so incredibly less lonely to endure.

  2. no i totally understand where you are coming from and know that you are so positive and take all the benefits you can - i just could relate to that feeling of mourning that we need to acknowledge every now and then and wanted you to know how much we all understand that dichotomy - of being grateful for new things and sad about the old - but it still is hard not to break your heart - xo Heather

    1. Exactly :)
      It is heartbreaking and I just needed to write about that. I find it's cathartic. I hope day 4 is going well.


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