Free Willy

I took a mental hiatus from writing last week, not by choice but out of necessity to my sanity.  Normally writing is my sanity, however returning from Phoenix after treatments can feel like being re-introduced into the wild. It takes a bit to get my sea legs back after living a life of intense structure and focus to home with all the moving parts a normal life entails.  

And Home isn't what it was before I left.  I came back to half of a house; symbolic of the eleven year relationship that had ended the week and a half before I left for Phoenix.

Missing Pieces

As I explained to the son of my ex sometimes it's really hard to walk away when two people love each other but are not right for each other.  When you begin to realize that without reason or understanding you have begun to cause more harm than good in the name of staying together.  I can only speak for myself, but what I know is I learned a lot about myself and what I need and that I am stronger than I thought I was.  I do not regret the eleven years, on the contrary I feel blessed for where they brought me and I hope in time he can feel the same.  Dis-ease - its an interesting word,  I was uneasy for a long time and I didn't want to look in the mirror and admit to myself that my relationship was bringing more dis-ease to both of us than happiness.

Disorder

This illness brings you a big picture view of life that I realize can be hard for others to jump on board with at times.  It shows you even if you are not listening  what brings you strength and what weighs you down.  I have learned that my body has very little capacity or tolerance for holding on to ill will.   My anger or disappointment of what went wrong is not buried deep nor being ignored.  Only the two of us know the intricacies that brought us apart, but I prefer to look at it as we completed our journey and can leave with no regrets.  I wish for him the same as myself a joyful life that I can bear witness to from near or far and that our time together was time well spent.

Will be packing again soon...not even worth a trip to the basement

As "they" say with every ending is a new beginning...the first of which is my new niece, Taylor Rose born just on time before her aunt headed to the airport on November 2nd.  Mom and baby are doing well and her siblings are adjusting to the new addition.  There are many changes on the horizon, but one thing is my constant...the bedroom may look different, my favorite comforter may be gone, but my dear baby is still right by my side.

Heading home..

Today is my last appointment after four weeks of treatments.  If you would have asked me a year ago if I could have stayed in Phoenix by myself while dealing with this I would have looked at you like you lost your mind...but I did it.  I had immense help from my family, providing me with a gorgeous condo here, my friends taking me to appointments, making me breakfast - lunch and sometimes dinner, my friends at home supporting me via text or calls, Kristine who is the most efficient and kind "helper" you could ask for - and of course my doctor.

I woke up this morning and for once didn't have immense anxiety about flying and this will be the first time in four years that I have traveled alone.  I feel stronger and happier than I can remember, and I am only anxious about what will come when I return to the cold climate.  One day at a time my friend, one day at a time.

That above is courtesy of Kristine's immense organizational skills....

www.sandrapriebe.com

When I woke up this morning I checked Facebook to see my friend Sandy's amazing sunrise photos that she has been doing for almost a year....this was sunrise over Lake Michigan this morning, not a bad place to go home to.  

Stillness

There is a stillness in the desert that I have never been comfortable with until now.  One of the first things I noticed when I moved here from Wisconsin was the lack of wind.  I remember the first time Sophie and I had moved back and a burst of wind hit her and she looked at me as if to say,  "what the heck was that..."  This lack of movement of air has always made me uneasy.  The desert landscape itself I could not see the beauty; the landscape and I had nothing in common.  It was still and I was not.

I want to be clear to those that are reading that living with Chronic Fatigue in it's chronic state does not have this peaceful stillness that corresponds with that easy going name - it is a body in chaos with no plan of action to follow.  However, the treatments I am getting are very different from mainstream medicine and they move this illness from the chronic to an acute state.  The end goal being your body wakes up and begins to act alive again.  This trip, in between the low grade fever, chills, exhaustion and detoxing reactions I have found this sense of calm that I have not experienced in a very very long time, if ever.

I have practiced meditation and yoga on and off throughout my life and it has served me as well as it could.  It is always immensely frustrating to hear people tell you to mind over matter this illness, they haven't a clue, and those of us that do just give that knowing smile.  This intense treatment protocol I am on flips this illness upside down and begins to shift one's body towards a different path.  This new "path is not paved, but is made of cobblestone some of it thousands of years old and its destination is still traveled on"tks with hopes of new beginnings.

This stillness is as unconscious as the chaos.  I feel it deep in my bones,  it's a stillness my body would not give me no matter how hard my mind would try.  I don't know how long this will last and I can only hope that my cells and immune system have gotten the memo that its time to step up to the plate and carry this home.  But for now, all I do is appreciate the quiet when it comes; because if it is coming once there is no reason it won't come again and stick around for awhile.

Hope is a waking dream...Aristotle

Our bodies are a complete mystery on many levels and sometimes the slightest push can have this amazing cascade of events to your advantage or disadvantage.  I can only hope that the door has opened for me and it's my turn to get to the other side of this journey stronger and more compassionate then when it began.  I see hope, I feel hope and if tomorrow comes and knocks me to the ground I will get back up again...isn't that what we all do...we just keep getting up again and again.

Wonder Woman

Some weeks you just need to channel your inner wonder woman.  When I was younger I had my ritual of getting transformed from a mild mannered six year old to the fabulous Wonder Woman.  I would put on my mom's opaque beige nylons that reached up to my armpits, my light blue swimsuit that had yellow and pink horizontal stripes - which actually looked nothing like her costume - and of course the tin foil bracelets.

I have known many Wonder Women throughout my life and am thankful for them all.  Sometimes all it takes is a few extra bracelets and you are on your way.

Adult version of Tin Foil

Even Linda Carter hasn't given up on the power held in one's wrist....

Here's to the final push - Week 4 before heading home for a break....and a new niece or nephew... I hope you wait until I get there; however my sister swimming in pre-birth hormonal hell hopes you would have arrived yesterday so either way is fine by me.

Against the Ropes

My intention was to keep everyone posted daily on how treatments have been going.  However, right now I am eating some raisins...my new odd obsession - and have one thought in mind - that I can get downstairs and make myself some breakfast without calling for help...so that will sum it up the last week I have surrendered to using every available resource I have here in Phoenix - and the loving encouraging words I have been sent from back home.  My back has been against the ropes so many times this week that its hard to imagine how I am going to push ahead....but then there is this amazing voice that whispers in my ear that you are an athlete in training - pushing beyond your limits and you will come out of this better than you went in....that voice forcing me to hear that I am so strong - that they are so proud - and anyone that thought that I don't "exercise" well - what I am doing makes training for a marathon look like a walk in the park...and I could not do this without that voice....and so there it is - there is much more to the story than a girl who got sick and is fighting her way back...much more..but for now she is eating raisins and gathering the energy to get downstairs and make some breakfast so she can get back in the ring.

As if the referee just sounded the bell...I get a text from my dear friend asking if i need her to come over and make me breakfast...surrendering to love...yes the answer is yes.  There is a stillness in being on this side of this illness - and in the quiet everything that doesn't matter just slowly slips away and everything that does well it becomes loud and clear.

Needed this at the doctor on Wednesday...

Flowers for the Gratitude and Gratefulness I have for my Doctor

Sucking down Raisins and Juice getting ready for Treatment

My Good Luck Elephant

My Disneyland...Made it last night first time in 3 weeks

Balcony View - our Palm that is growing on me despite breaking the foundation in the porch 

7 second delay

so this morning i am trying to cope and see that light at the end of the tunnel - i actually had enough energy that the sound of the tv wasn't irritating and on Good Morning America Tom Hanks - sweet Tom Hanks forgot where he was and let out a few things that should have been bleeped....so if Tom Hanks can use the occasional swear word i felt in better company after my four letter that starts with the letter F rant from 4am - well - i must have been channeling George since my mom use to say if they took the F word out of the English language your grandfather would be mute.  Well then - I'm in good company....or perhaps i need a seven second delay...

Sacrifices

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 this....at 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..