Let the WIld Rumpus Begin, Day One

Well I am back in Phoenix and like a vampire I was craving clean blood - so shockingly despite flying in the night before - dealing with rental car issues - and refrigerator issues - when I got to my three o'clock appointment we went right for the big guns!  I actually new I was going to get a blood treatment -  I can just feel it when I need it and it went really well and fast - always helps that my doctor has no personal boundaries and me vice versa to use as a distraction - so our chatting goes from remodeling - to relationships - to family - all the while she is intently focused and I am just rambling away.  I am grateful for that -

The problem was that when we got back (my dad is out here with me) we needed to go to the store - we made dinner - then got a call from the delivery company and headed the two minutes down to the condo we are renovating - and then it all started to come closing in - it was too warm out for me - the air wasn't on in the condo - so I ended up going back to the car and breathing deep - a bit angry at myself because I knew better - I knew better than to push it.  But I got through - went straight to bed around 7:30 and then decided to go on FB and my bff who is rarely on was so we skyped which made my night - but yikes - not looking pretty in that little camera - well at least vanity is still in tact all of us know that when the vanity is gone we are in the trenches.

I am going to try and update my treatments a bit better - so some posts are going to be a bit boring - so just skip over them - that's more for me to keep track - last time I tried a notebook and got off track - so this time may keep track right here!

Its only day two and I miss everyone sooo much - but i just keep telling myself - this is ti - this is the time where everything else needs to fade into the background - I may be missing things back home - but if i can get better truly better i will have that freedom to be more present - a friend sent me this quote and I like it a lot - because I know many of us with this illness have heard the dreaded.."just have a positive attitude speech so many times we would like to through something at the next person that suggests it like its the "Secret" - most everyone I have encountered with this illness had such full positive lives before this its an insult to us - I was also very careful as a Naturopathic Medical student to not allow patients to go too far down the road of "owning" their illness as if they had chosen it - or had done something wrong - its not useful - and of course a healthy attitude helps you cope better - sends better signals to the brain etc.. but at the end of the day there is a lot to say about your genes - not the blue ones.  So what i liked most about this quote is its message of hope - i am hopeful - i am a million other things to at any given moment  - but hope is never far away.

Courtesy of the Dalai Lama
"These days there are many different medical advances.  But our attitude of mind continues to play a crucial role in both prevention and cure.  This is quite clear.  The body and mind are closely connected and each influences the other.  That is why you should never lose hope.  However, seriously sick you may be.  Tell yourself that there is always a remedy and that you have a chance of recovering."

What i am trying to do better with this illness is coping with the symptoms and not defaulting to being so scared - it doesn't help - but its where my mind and body go when all hell breaks loose - and to be quite honest I'm tired of scared and it hasn't really gotten me anywhere - old habits die hard - but I am trying day by day - baby steps.

help

when you need help its often hard to ask - something about the word feels disempowering - maybe its all those disney movies -the damsel in distress thing. however, those of us with this illness need help - and prior to its arrival we were the ones freely giving it.  i spent two nights at a friend of mine's house - and despite calling her nurse betty because she was the best nurse/friend one could ask for - it was extremely difficult to not be in my own home - and micro managing all that i didn't even i realized i tried to grasp at the slightest control of - that's the other thing when you have sporadic symptoms that don't always follow a pattern and on top of it have gotten very use to making your own food so you avoid the unpleasantness of popping benadryl or prednisone for reactions its hard to let others care for you. So when I began to freak out a bit feeling so overwhelmed and just wanting to be home - my friend looked at me and said hey - think back to the first day of college when you went away - remember how terrifying that was - everything and everyone was new - and remember it gets better - it always gets better.  And she was right - its been a long time since i have felt "safe" inside of this body - always wondering when its going to give out on me or over-react to the temperature in a room - the smells somewhere - too much noise or bright lights - too much good news or too much bad news - the tipping point is so fragile and it fluctuates in its stability.  Another of my oldest and dearest friends kept reminding me that i use to do it all - i use to feel safe and if i didn't all i did was push through - that was before - before this illness seemed to rob me of a security net - but i am trying hard to fly without its crutch.  So this past week I have learned to accept help and the wonderful gift i have been given is the more help i seem to accept the more that keeps coming my way.  Yesterday out of the blue I got a text from my old roommate in college - with the message sending you light and love.  The last two days the massage therapist i had met last year - and comes to give me my hydro-therapy treatments could tell i needed help and offered to come today and cleaned my house, did my laundry, and gave me another hydro b/c i feel as if i am fighting off a cold - and she was so calm and sweet - and i forget sometimes what it feels like to be able to give so freely - wanting nothing in return - and it makes me sad because i am a bit tired of being on the receiving end.  but then i tried very hard to accept the help - the help i needed and instead of feeling disempowered it brought me more strength realizing this illness much like the old term it takes a village - well luckily i live in one.

Peace

You see bumper stickers on cars - peace not war.  You see kids with blue jeans decorated with iron on tie dyed patches of the peace sign.  Tatoos and necklaces - rings and posters - its all around us - subtle hints or loud screams for peace.  It appears to be such an easy concept - having peace in our lives - but internally and globally peace often is a distant mirage that we can see but never grasp.  The simple things in life, the things stripped down to the basics like - life - liberty and the pursuit of happiness as slogans and catch phrases make us wonder why is this all so difficult.  Peace has alluded me lately - in all aspects of my life - this illness has stirred doubt and turmoil and a mini war that appeared to be determined to take away any peace of mind - peace of heart - peace of self - peace of soul i had - and fighting for it has been exhausting.

My friend had reminded me of the metaphor or real life truth that often when you try to save someone from drowning the person clings so tight and struggles so hard that both people go down.  I guess i have felt a bit like that nearly every day since this unexplainable journey began - fighting so hard to find answers and diagnoses and treatments - I have been fighting so hard i have been drowning and have had such a difficult time when someone jumps in to try and save me - being so frantic so overwhelmed - that i have taken some people down with me.

When I was little my cousin Katie and I fought like siblings - no punches but knock down drag out childish fights.  It was a tough dynamic, my mom's sister has three children - and its my sister and myself.- so at times it seemed more like we were a family of five siblings than cousins of two and three.  For my cousins, the birth order went Kelly, Tommy and Katie.  I think 18 months separating Kelly and Tom and then Katie I think about four years younger than Tommy.  I was right in between Katie and Tom and my sister is the baby of us all.  So there was a bit of a divide - Kelly was just enough older than me that we were close - but Tommy and I were often mistaken for twins when we were out and about.  We did everything together - crazy can and newspaper collecting - bike riding - swimming - I still remember when my parents surprised us and picked us up at my aunts house and i thought I was going home and instead they were taking us to Fox Hills - a golf resort with this "fancy" ballroom with chandeliers and blood red carpeting - an arcade room and indoor pool - we thought we won the lottery. So Katie and my sister were always paired off by default in a way - being the two youngest - and it set up this dynamic of Katie wanting to be apart of our fun and depending on our mood Tom and I deciding if she was "big" enough - a sibling/cousin rivalry.  Its all pretty funny in hindsight considering as a young adult i lived with both Tom and Katie at different times and we had the best time ever.  But back in the days of being kids we each had our digs - "Katie the Baby" and "Miss Perfect" oh how she knew to hit my buttons - I can still remember the one argument that our default emotions filled - me in tears - katie mad as hell screaming "you think your so perfect - perfect - perfect perfect" and it was the only time our parents decided that perhaps it best that we physically separate and we left my grandparents a bit earlier than expected.

That perfect thing though always stayed in the back of my mind - you know the sarcasm veiled in truth - well there it was and even at 8 or 10 whatever age i was it stung deep - because she was right - i always tried so damn hard to be perfect - to not make anyone upset - to keep it all together - at any cost - I have read a lot of blogs about people that get this illness prior to it had very type A personalities - and that is why its so infuriating when doctors or others put labels of depression - or lack of motivation - or its all in your head just because we haven't figured out that perfect lab test that can check off the little box that says "CFS" period.

I don't want anyone to think that I believe this illness is brought on by perfection - but I am a bit fascinated in what we don't know about it  - and perhaps how the neuro-endocrine-immune system functions in individuals that have that desire and make-up to push to perfection in all aspects of their lives.  Many extremely successful leaders are perfectionists in one aspect of their lives and then fail miserably with their loved ones - and I can understand that - sometimes  there is no room for everything.

I am trying to let go of that "miss perfect" label that i have grown up with and kept as a code for myself - this illness has no room for it - nor do i anymore - and that's a little bit more freedom than i had yesterday - i had just read UpNorth's blog post about being sad  My World Blog - and I could relate - I am so sad right now there seems little room for much else - yet the Kahil Gibran poem about Joy and Sorrow kept running through my brain - so I will post it here.

Our childhoods are interesting little micro cultures of the framework for our adult lives - they don't define us but they shape us - good or bad - and I have come to a point - that I understand why that simple word Peace seems so difficult to reach - but I am learning to put it first - first towards myself and those around me - I want peace in my little spec of the world - and I know its attainable - but you have to stop fighting those that are trying to help rescue you.

And to my cousins - and my sister - our little gang of five - I love you and I cherish our fun just as much as our fights - i wouldn't have wanted it any other way.

On Joy and Sorrow
 Kahlil Gibran
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, "Joy is greater thar sorrow," and others say, "Nay, sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

Tide Shift

Unpredictability can drive one mad - its that old awful psychology experiment with the poor mice - that if they are shocked at intervals they can handle it - but if they are hit at random times they lose their minds.  This is a bit like CFS - I should say if you are lucky enough to move from despair to hope.  The despair phase - that many are living in - is so dark and bleak that there is no roller coaster ride - its a constant sameness - over and over and over - the flip side if you start to get lucky is you begin to get better with restrictions - some days its obvious what put you over the edge - other days its purely random.  This is where you need to learn how to become disciplined in your thoughts and perspectives.  This is a huge challenge - today was one of those days.  I have been so lucky the past few days - I have pushed it and pushed it - craving this crisp fall weather - feeling so blessed i haven't gotten a cold like many have - like the earlier post - not wanting the time to end - the bell to toll.

So yesterday - I did some errands at my parents house - I went to my sisters while she went and got her daughter from pre-school and waited for my nephew to wake up from his nap.  Its so fun to notice the differences in siblings - he wakes up slowly and sweetly - and likes to cuddle and it was nice to have one on one time with him.  Then i went home to lie down for about an hour and met my good friend who has been working non stop for her well needed R&R and we got a pedicure - then she asked if i minded if we went to the mall across the street - so we did - and then I sat on some chairs by the Starbucks in the center with my feet up as she looked around a bit more.  So then we chatted and headed back to her house....okay i could feel it slipping - "it" being me...and so I left ran into the grocery store 10 minutes before 9pm came home made myself some pasta with steak and cherry tomatoes - copying her dinner - and  i could feel the energy drain out of me like a slow leak.

I crashed into bed - my back aching between the shoulder blades - a pulsating feeling in my abdomen - and luckily i fell sound asleep.  But that meant waking up - waking up to the reality of pushing and pushing - and it wasn't pretty this morning.  I could feel myself wake up but dreaded opening my eyes wondering how in the world was i going to get out of bed and eat.  I felt as if i haven't eaten in weeks - yet the thought of food was overwhelming.  I finally managed to eat two eggs and a bit of toast but it wasn't enough by this time my blood sugar had dropped too fast and no amount of juice with salt and water would get me feeling stable.  At these moments my default is panic - it feels as if you are dying - i am seeing bright little stars in the air in front of me - and i really just want to cry - but i didn't - perhaps i am getting a bit used to this - i did need help with making some oatmeal that i ate very slowly - i went outside to get some fresh air - i ate bite by bite ever so slowly and when i felt as if i was no longer drowning - i slowly made it back to bed.  As I was lying there I just kept trying to breathe -and not got overwhelmed - remembering all that i had done in the last few days and reminding myself its only 10am this may all pass. Just remember it will pass.

As i was lying in bed i remembered the dream i had last night - i was back visiting the east side of milwaukee - near lake michigan and i stopped into a coffee shop - and the woman behind the counter kept saying - "don't I know you.." and i politely responded that no - i had lived in this area about 12 years ago - but haven't been back much since..and she kept saying - I swear I remember you...I use to see you running by the lake all the time - and in my dream i said to her - that used to be me that used to be me....and I acknowledged she was right i did use to run and walk along the lake front - but i don't do that anymore...and those words just hung in the air - but i thought for a second - maybe just maybe i can again.

I stayed in bed until after 1pm - and talked to my mom for a bit - then my friend in phoenix - and while i was talking to her i couldn't help it - i just began to cry - i was telling her about the dream and i told her it just feels so cruel to wake up and have it all crash down again - and maybe that's just what i needed a bit of a cry.  Because - look I know it could be worse - and I am feel so fulfilled with all i have been able to do - but I just want more...is that too much to ask for - more? isn't that how we move forward by asking for more and working towards more.  Then the phone rang and my Steph called and her and her daughter stopped by...and the heaviness seemed to lift a bit - i had been in bed all day - and didn't mind staying in bed while steph chilled on the chair in my room and kate played with her new toys she had gotten.  I managed to get out of bed - and while they were keeping me company clean the kitchen and make some lunch.  After they left I went back to bed for awhile and was hoping to get to the park - it has been picture perfect fall weather - i called a few people to see if they could join - but car pools -and nap times just ending etc...but i made the calls and in making them determined i didn't care if i just sat on the bench - Sophie and I would get out of this house - and we did - we made it and even made the short loop - i went to the grocery store again -made some dinner and crashed right back where i started  - in bed - but the thing is - based on how this morning looked i thought i would never even leave my room today - so everything was a bonus - i pushed and i mini crashed - and that is progress.

While i was out with Sue last night she said - don't drop me off without getting your birthday present (my birthday was May 16th) and its been a joke because we see each other plenty and she keeps forgetting - but sometimes its all about timing...and its this metal bookmark with the phrase...
"Where there is Love, there is Life" Mahatma Gandhi - and i smiled - i think this illness has slowly taught me how to receive love - because like i have said - you don't get much to hide behind - when its all stripped away - and had she given that to me in May - i would have loved it - but not really understood it - so thanks Sue.

This illness - i wouldn't wish on my worst enemy (not that i really have any...) but anyways - today was a big step for me - because it began so poorly and I mentally pushed through so it didn't consume me like quick sand and suffocate any joy i had for the day - and instead all i found today was joy around every corner.

My Baby and Me

Bridge

Beautiful day today...will write more but not feeling great - but wanted to send out this photo of the park i go to and its bridge...my favorite book was Bridge to Terabithia when I was young - probably because my best friend Sara and I lived at this park - we could cut through her backyard and get there through the woods - which actually always freaked me out a bit - the bridge has been a newer addition - as if talking to me - reminding me of those days - living Terabithia with a true best friend..That time and place and quantity of seeing each other never matter - you just feel lucky that you ever bumped into them in the first place.  Though I didn't feel well today - at least i got to the park - and despite only the tiniest of walks not even making it to the bridge - we sat on our favorite bench and just took in this gorgeous fall day - I can't remember if i wrote about the connection to that book before or thought about writing about it - so i will look back and perhaps this post will have an edit or two :) But for now this is good enough - and i am happy that i can be content with that - not asking more of myself - doing the best i can in this moment in time...

So I did try and write about it before - but saved it in the draft folder...here's what was there - If you are lucky enough to have your own Terabithia - you hold on to it.  If you don't have such place, create one.  These are the places that for some inexplicable reason, you feel a sense of peace by just being there.  I didn't remember the details of the book Bridge to Terabithia, just that it was the first book that I had read that I really was drawn in and understood the gift that reading brings to escape into another world and get lost.  Looking back, those childhood books that hold a place in our memories probably say a lot about who we are even before we are looking.

After writing that now i remember - i looked up the cliff notes and remember it was about two best friends and how the one brought out the best and courage in the other...and it had a sad ending - and at that time in my life Sara was just that person for me - she opened my world in a different way - I had had best friends before - but not like this - not someone that you shared the secrets that you were often even afraid to tell yourself - that brought you out of your shell and by osmosis you seemed to blossom in their presence because they understood you - and even at such a young age when you meet these special people in your life - those that you feel some divine force brought you together - you don't forget - ahh so okay i wish i was feeling better to be more eloquent - so this is the jist for now...you get the picture...

My Very Own Terabithia

Sleeping Beauty

I was talking on the phone last night with one of my best friends' in Phoenix - so i had the advantage of a two hour time difference - and yet it was even getting late by her - and I told her all I did that day and she laughed and said it seems to me you don't really want to go to bed - like a spell you are worried will be broken - and that is exactly how i felt.  Most of the time I feel like Sleeping Beauty lying patiently waiting for the magic - medicine - prince - frog -to come to my rescue.   I normally am craving bed - can't wait til night comes and i can "night" dream as I have explained before -  lying there thinking of all the things i would be doing if not for this illness - longing for someone to wake me up - break the spell - but last night i was putting off going to bed because for almost an entire day it was broken - and the thought of going to bed and waking up tomorrow with all the weights back on was an overwhelming thought process.  Yet, the last hour I had spent with my friend I began getting the mini symptoms that I was pushing too far - but i just didn't want it to end....then getting home i called my parents in san francisco then my friend in phoenix - then ate a bit had some juice - went online for awhile - all the same time the voice kept saying ...get in bed the clock is about to strike midnight Cinderella - and you better be ready for it.  The thing is - I didn't want to be ready for it - I wanted to stay at the Ball - but then I felt myself running against an imaginary clock as it began to sound off - and I forced myself to go to bed...but instead of night dreaming - I was able to dream about more days exactly like today - maybe my size 9 (okay 9 and 1/2) glass slipper is out there closer than I think -

When I woke up this morning - unfortunately I hurt everywhere - but that hurt and ache lost a bit of its power - it was to be expected - like so many of us with this illness - its the roller coaster nature that plays with your mind - but i can say there wasn't a moment yesterday that i didn't soak in like a child - in wonder and appreciation of all the little things - if it was as simple as those fairy tales...maybe maybe someday..

late night

its late - and i should be in bed...but i had a really good day today...(jerry maguire reference not intended) but okay - why not piggy back on Tom Cruise's infectious craziness - hell knows i have enough crazy to fill a room.

here was my brief agenda...stopped at parents to see them before they headed out of town...went and got a sandwich...went to watch my friend's daughter's soccer game...went to walgreens...went to get a baby present at the local little baby boutique...came home..ate...rested in bed....got up ate...went to meet one of my best friends at my parent's house - it was like walking back in time hanging out there when life was a bit less complicated.  The thing is everyone loves my parent's house - its a home a safe haven where the door is always open - the lights always on and anyone is not unexpected at any given time.  So being back there where many good childhood memories where formed and not much has changed felt good.  But better than that I had a normal day - just an average normal day - but i felt blessed every single second of it - coming off this past few weeks of feeling like i was clinging to stay above water it was the most precious gift.

I have really good friends - and though with this illness I know if i asked for more help they would do everything in their power to help me its been tough for me to ask.  I know they all have their own lives, children, work schedules, etc..and yet every time i do ask - i have yet to be disappointed. This has been a learning curve - learning to be comfortable when i am uncomfortable - trusting in others when i don't trust myself - its a hard adjustment from being the dependable one the one everyone can go to and having your body not cooperate anymore and force you to be on the other side needing help where you never anticipated you would need.  I am working through this and trying my best to be open to receiving the love and care that others are more than willing to provide - its just a door that i had closed off for so long its been tough to break through.  Like many of us in the beginning we just don't think it is possible for this illness to carry on for so long, so we avoid it - we excuse it - we hide from it - we cope the way you would cope with an acute illness - but then everything just keeps getting piled on and by this time you haven't given those that love you time to catch up to where you have gotten and so they are a bit lost - seeing the old you yet inside you feel so different.

Today I felt a bit free - sure I didn't make it to Madison this week -but lucky me my friend was in town - so I got to rid myself of that grief of not having the one on one time I had craved - I am lucky - I am blessed - and yes I am sick - but its not who I am its just that slice of me -and as I said before I feel slowly I am crawling back.