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. 

week one in the books

So today was an IV treatment of Phosphatidylcholine which helps the body detoxify.   Luckily it wasn't longer than 40 minutes - I'm a slow drip - oh you sensitive veins - but on the way home i could feel it all crashing in - the meltdown that i have been lucky to avoid - my dad stopped at the store and i felt bad b/c i could tell i was so short tempered - its trying to gain control when everything begins slipping away - focus breathe focus breathe.  The trip home felt like an eternity and when i got back all i could do is narrowly focus on eat and bed eat and bed.  My friend Jami was here b/c her car was getting some work done not to far from here so she had the transport company bring her here.  I walked in the door - Sophie jumping for attention and like a zombie got upstairs into bed and ate the food i had brought with me to my appointment.  I warned Jami - i'm on the edge  - just FYI so please just ignore me and my attitude.

They fed Sophie - tried to take her out but she moved even closer to my back if that was even possible -  as if to say not on my watch am I leaving - so after an hour or so I lying completely still in bed with my headsets on the cliff didn't feel as steep.  Jami made some pasta with meat sauce for me and asparagus and I again ate it robotically and then got back into bed.  I feel a bit more human now - but getting well is sure a lot of work -

Will lay low for a bit - i really wanted to get out into the real world tonight - just a quick trip up the block to the outdoor mall - just wander among people - and forget about all of this.  Days like today after being so positive i sure do miss my old self - okay - pity party over - it always could be worse - i know i am getting better -and getting stronger - baby steps baby steps -well its a almost 9pm and i have begun to feel like a somewhat normal person - that is the good news things can always change - just always hoping for the better.

Why its all worth it - Thanks Kate xoxo

Tyson

Well I made history for myself - I had another blood treatment yesterday and as I was headed to the doctor i just knew i would be ready - mostly because i felt so congested and tight in the throat and i was thinking if i was i wisconsin right now i would be packing benadryl - and sure enough by body was ready for another treatment and during the initial unpleasantness where the needle was going in and my squeezing my eyes so tight and trying to go in my mind somewhere much more pleasant - it was complete.  My dad had an appointment after me and I'm glad we stayed because i began to get a bit tight in the lungs afterwards - so my doctor gave me a remedy and it helped and today I am going in for an IV to help my liver out with clearing all this infection.  Once again - my doctor is amazed at how my body is responding - and I am crossing my fingers tight.

I had a relaxing night last night - slept pretty well -but now this morning feel like I went a few rounds with Mike Tyson - in or perhaps out of the rink - I saw Mike Tyson a few years back at the resort that we stay next to - he is solid as you would expect but much shorter than i thought - and now he's all peace and love and into pigeons - so that's a good thing....see people can change and if people can so can this darn body of mine.  I have made a bit of peace with it over the last few days - I have really worked hard on not getting so irritated with the symptoms and tell myself they are a reaction to an illness - so feeling so rough this morning I did what I promised myself I would do - I called and asked for help.  My dad and his friend are running errands - he already had helped me with breakfast and took Sophie out - so I called Jami and she is coming over to give me a hydrotherapy treatment - its a bit rushed for her and she needs to head straight to a client - but I asked and she answered and I am thankful.

So this mini little apartment I have going upstairs isn't so bad - it has amazed me what a difference stairs make that I'm not use to - so its good exercise in a way - but I tend to try and not do them too many times in a row - well - that's it for now - thanks to everyone who has been commenting and calling or texting - i've been so tired its Eat - Sleep - Treatments - and do it all over again - I may not be a boxer - but they say its the most fatiguing of all the sports - well Mike you and I have a bit in common then - and its not the face tattoo or the pigeons.

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.