Friday, October 19, 2012


its 4:30am - so i am guessing there may be typos around every corner.  this has been a brutal week - brutal - my body is craving the treatments and that means for the first time ever i have gone 4 for 4 - four treatments in four days ...four nights of dealing with a body that is waking up from a long slumber and has decided enough of all of this - just a fucking enough - but that means  - night sweats - mild fever - a bit of chills - so exhausted that food seems like an overwhelming chore - so toddler like i spoonful things in my mouth enough to get through - my body doesn't even want the food its too busy fighting.  i was in bed since 4pm this afternoon - and not edgy and not the normal chronic fatigue tired - a tired one might feel like if they were training for the olympics...what is it every four years...well this is my third year of trying aggressive treatments and it has been a slow build - three years ago i came after the holidays and was so sick and breathing in and out of a nebulizer to open up my airways that all i could handle was the colorpuncture and 5 weeks of daily hydro-therapies.  That lead to the pre-emptive cold and flu strike that brought me out here last october and november - and it made a huge difference - i had a little sprinkling of treatments went home for the holidays and then came back from Jaunuary until April without a break going home...i think i was too tired to be homesick - and to desperate to care...and in those four months the most UV photopherisis treatments i did in one week was two - and i remember being so amazed i could handle two treatments in one week.  Well here we are after not having treatments, or i should say aggressive treatments here in phoenix (since i do things while i am back in wisconsin) for over 5 months ...i have in 9 treatment days had 7 blood treatments - I can not explain what this means -   my body is tolerating something i never thought it would and i crave the treatments like the oxygen and nutrients my cells seem to crave by being run over by these infections that would prefer to take it all for themselves.

i have often explained this illness and my hypersensitivity reactions that came along with it as a run away train that keeps gaining speed and momentum - and this afternoon while i shut my eyes and geared up for another treatment - besides imagining someone holding my hand - that image of the runaway train kept coming to the forefront of my brain and for once it seems like my body instead of this illness is the one that is gaining speed and strength and may finally have the vital force to run this nasty illness down.

i am grateful ever single second that i can be here  - but this evening when i woke up sick at 2:30am - I finally felt the depth of the sacrifices that it has brought with it - and i couldn't help but tear up a bit - the years and years of missing events - and missing friends and family - the years of an ease to life that you don't realize is there until it is ripped aways so fast like a magician that just pulled the table clothe out from under the dishes - but an amateur magician because this illness doesn't leave the glass wear standing - it leaves the table in such disarray you don't know where to begin to clean it up.  However the silver lining of this most difficult of weeks has been  - i got out just before the awful cold / flu hit my mom and sister and kids so i would have either gotten it or been quarantined from them - but in general its that i even remember what i have been missing - last saturday i felt more alive from the tips of my toes to the top of my head from the inside to the outside from my heart to my soul than i have felt in 7 years - and if that doesn't make you cry or feel the depths of your sacrifices then i don't know what would.

I have said I will do whatever it takes to get my life back - my health back as much as it is able - and I can finally say i am fucking proud of myself  - my family sings this annoying proud song when we were little to annoy us on special occasions - well i feel it - because i know after years of doctor hunting  tests - research - i have made the best decisions for myself with this illness and even the darkest hours of this past four days - i could see those flashes of light guiding me home...that caged bird may just have found her opening and she will do whatever it takes to fly through.  Because never before has this illness and being away from home for treatments felt as much as a sacrifice as it does right now - but like anyone that has sacrificed - my goodness there are those that are serving our country right now and sacrificing for strangers - there are examples of people doing extraordinary acts to sacrifice for those they love - so least this sacrifice come with a prize at the end of this long journey - its not over and it may only be in the middle but i can see that garden wet with rain..

1 comment:

  1. I don't know if anyone from the outside of this illness can have a clue at how much we miss and how old it gets. I have lost a lot of friends over time just because I can rarely get out and "do" stuff and they just stop asking after a while.

    And you are right about being are SO tough...I know it doesn't feel like that when the illness or treatment brings us to tears and I know I often feel at the end of my tether and physically weak. But anyone who endures this day after day year after year is nothing but tough in my book. Hang in there.

    I hope you are allowed a day off here and there if you need it?


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