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..

going 10 rounds

well the bell rung and i went to my corner and i was beat - didn't think i could do it.  back to back blood treatments yesterday and today and my body wants and craves them but today was hard - my vein just did not want to give it up so lots of arm adjusting slowly pushing all the while my eyes were closed and i just kept breathing - talking to my doctor about nothing and everything as i pushed through - knowing this is it - this could finally be my time - in naturopathic medicine and i think all medicine you can give whatever your poison is ....but at the end of the day its how does your body at this moment in time swallow the pill?  so my body seems to push and push and want more and more - i think it is ready - something seems to be giving and i am so grateful and tonight more exhausted than i can remember- i don't hurt - i just want sleep - sleeping beauty kiss me to wake me up prince charming - because otherwise i am going to dreamland... i am tired and grateful and hopeful - i even turned my phone off and if you know me or my family that's about as likely as me jumping off a high dive...always a first....

and as i have said before but it always bears repeating - to my sweet cousin Dana who checked in with me and the emails i have gotten and texts of encouragement - they mean everything - again asking for help or saying you need the help is hard but it reaps many rewards...back in the ring tomorrow - watch your back tyson i am coming for you jab jab and now its time to retreat -

Saturday night LIVE

well we are entering week two - and i have to say i am already a bit homesick and my dad is even here.  i'm homesick for my bed and the routine and my friends and family - although i got out just in time because my family all have this awful cough that has been going around and they are knocked out with it - so i did get lucky or this would have been a very different trip.  this is a new place we are staying at and though its beautiful i don't have my window to the world view i had last winter - and i didn't realize - or i guess yes i did how much would miss it.  i'm staying on the second floor so luckily the windows look out into the night sky - but these patio homes in arizona are built to keep the heat out so there are a lot of courtyards to look at which gets me a bit claustrophobic - we are keeping our fingers crossed that by this weekend i can move into our place that is smaller and cozier and has a beautiful view that i crave.

well week one was incredibly productive and saturday the day was paved in gold - i felt like midas and everything was effortless - and that freedom of effortlessness i can't remember feeling in a very very long time at least not for this many hours of the day.  i wanted to be by myself - which is a good feeling so i went to the mall for an eye-brow wax - which please if anyone out there reading even gets a hint that i am going to get my eye-brows wax please stop me - i love my eyebrows and it never matters how much you tell the woman that you just want them "cleaned up" they go to far - anyways i made an appointment at my favorite spa in the world - nordstrom's at scottsdale fashion square - it was my place of recluse when i lived here - and its simple and calming and i love the people there.  anyways when i walked in they were having some event so i walked through the doors of the entrance and was bombarded with people everywhere  - make-up booths set up all over loud music and perfume sections gallore - normally i would have done an about face and get the hell out of there it all being too much stimulation - and it took me by surprise like i was living in some other calm body because i just kind of shrugged - like who the hell would want to deal with this and i got on going upstairs to my shangri - la.

I saw Erin my dear friend who is the massage therapist there and got to see her adorable baby bump - she was booked so i was going back tomorrow.  i awed at the youth of the sweet 26 year old that was doing my waxing and she did genuinely seem shocked when i said i was 40 - and then after i left i wandered a bit - drove back home - ate dinner and drove the block to the resort and walked with sophie where my dad and his friend Shannon were meeting one of Shannon's friends.  I was walking on air - like this is what normal people do...they shop a little - run an errand or two - eat and take the dog for a walk and don't give it a second notice.  this is what this illness brings you a gratitude for the day to day that on some level i don't really wish everyone has- because when you have it its because it was taken away from you.  i got in bed that night and chatted with friends and it was bliss.  pure bliss.

I was ready to dive in...soon

then i woke up to Sunday - and it all came crashing down.  I did get out of bed by 3pm to go get the massage but driving home i was shaking and chasing sprite and cookies to get my blood sugar up as it was crashing as fast as i was.  my dad made me a really nice dinner and i actually had an appetite and thought as soon as i get to bed i will be okay - and i was kind of and fell hard asleep at some point only to be brutally awakened to what ND's cal a healing "crisis" - crisis is a bit tongue and cheek b/c it just means that your body has decided to wake up and start fighting what it has long forgotten about - and well it was a battle.  i was so hot i could hardly stand it i turned the air down to 66 plus i put it on ON instead of auto - yet i had the chills and night sweats and constantly needed to get up and use the bathroom.  I just kept repeating in my head this will pass - this is part of the program you know how it works - just relax into it don't fight it - so i was lucky enough that i would fall asleep for about an hour and then wake up and wish i was dreaming this all over.  its a lonely time when you are sick in the middle of the night - i did call my doctor at 2 am but only the  on call phone not her cell - and i just gave her an update - and then i talked to her at 6:30 am and she had some suggestions that did help.  Mainly homeopathic arsenicum every hour - i had a 10 am appointment this morning and when we were talking she asked about saturday and when was the last time i remember feeling like that....i had to think i said perhaps the last time i was here at the end of treatments i had moments like that - but the last time i can remember a day start to finish like that - about 7 years ago - and i took a deep breathe and felt grateful - there might just be a bit more light at the end of this tunnel than i thought possible.

when i got home my body was still beyond exhausted - i couldn't eat much think much i just lied perfectly still in bed with every joint and muscle so fatigued i felt like i had just skied from morning to night after not being on the slopes in 20 years - but it wasn't that good tired it felt all bad.  the intense fatigue and acches began to lift around 5pm and i even went downstairs for dinner - which my sweet dad had all prepared - i have Alice from the brady bunch disguised as my father without the awful uniform.

as i was lying in bed at the worst of it around 2pm my dad came upstairs and said mail call....and it nearly broke my heart and strengthened my resolve - this is why i do this - this is why....

my first and last name were painstakingly written by this four year old according to my mom and she wanted to know what my "other' name is - but then she got tired and asked if she could tell grandma what to write in the inside.  

while i was waiting in the car after my appointment when my dad ran into the grocery store i was thinking about the parents of autistic children and their symbol the puzzle piece - and i feel like  us CFS'ers have a lot in common with that visual.  i feel like there are some days that this illness has missing pieces from the bottom left or right corner - where if you looked real fast you wouldn't even realize that the puzzle wasn't complete and then other days the piece that is missing is right in the heart of it all and there is no mistaking its presence.  these missing pieces take us on a huge scavenger hunt where the clues are cryptic and often purposefully misleading - and the frustration for trying to find that missing link can be overwhelming - its always hard to go from such a high like saturday- when i walked in from the mall i said to my dad - i feel ALIVE i haven't felt alive in a long time - most often i am faking my way through it - and then to come crashing on sunday was difficult to handle - but i cling to saturday and if saturday is possible - freedom could actually be in my reach - i felt it  - i tasted it - i soaked it in and didn't take any of it for granted - fingers crossed for week 2.

on a side note to my friends and family who call and check in and read and keep updated - there is no bigger gift anyone of you could give me then feeling like i am not doing this alone.