Saturday, September 1, 2012

accepting what i can....

i just read another post about someone that is practically bed bound...and i reminded myself to soak in absolutely everything i was able to do today.  i made breakfast and cleaned it up.  i through in laundry - okay its all clean but in a big clean pile...but its clean!  went to meet my mom and aunt for a few minutes while they finished shopping.  stood in line at the post office - got a crazy panic attack when they locked the door on us b/c it was noon - so i bolted - well she had to un bolt so i could bolt - so packages not sent but almost.  i hung out with my dad and we watched cheaper by the dozen 2 while i waited for my mom to get home.  we picked out tile for the new condo - mom picked it out did a great job.  while at mom's i started feeling it...like a slow moving wave that is coming for you...i couldn't eat my lunch too nauseous - then had to run to the bathroom.  okay - still doing pretty good - headed home and then to the park - sophie and i did a small loop - sat on benches twice to get around - met two adorable Bernese Mountain Dogs - Jack i think and Maui which sounded like Molly.  Then at 5 pm I got home and the wave hit...unable to eat much without getting sick - Marc made me an awesome steak and i could tolerate that will some lettuce....sat in bed since 7pm feeling weak and tired and mad as hell - because i wanted so badly to have a normal day...and then i read that post - and it reminded me of how lucky i was today - and hopefully tomorrow and many more days ahead....so for any of you out there that are bed bound - it can get better - and i wish i could figure out the miracle pill to pop and i would do everything in my power to send it to all of you...I do believe strongly in the under utilization of my UV Photophoresis Blood treatments - and once i am a bit stronger much of my energy will be devoted to working with my doctor on a clinical trial for that purpose of getting more people to use this treatment that has so few side effects - and is working - but i must focus on myself and i must get well  - isn't that a political trick if you say a lie long enough it becomes the truth - well i don't know if its a lie - but i am saying over and over again that i will beat this i will beat this i will beat this - and if this is as good as it gets i will be grateful forever more that it isn't worse and learn to live fully within its constraints. peace.

good morning...

so, this is what the morning looks like, well hello - its been awhile.  yesterday and today i have woken up early - okay so depends upon your standard of early - but its 9am and I have already wasted some time on the computer, made myself breakfast, made coffee and threw in a load of laundry.  Seriously - is the sky falling? Perhaps it was the blue moon?  But the last two mornings i have woken up - and despite being dizzy at 6:30am when I took Sophie out, and needed to sit on the bench while she decided to smell every blade of grass - around 8am when I officially got out of bed I felt somewhat like a not barely alive person.  For those of you in this esteemed club - you will understand that almost jarring feeling when you have a reprieve from the constellation of symptoms that are as selfish as a 3 year old in their insistence of  being front and center at all times.

I am not going to write much more - because I can tell it is becoming fatiguing and so baby steps today for a "normal" day...things i would like to do - finish a quarter a cup of coffee - put that laundry away - go to the park - read my book - go look for tile with my mom...get lunch...go to the pool - ahhh maybe its magical thinking or perhaps if i do all of it but just for the tiniest of increments I can have it all:)


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