Naked

I have had people give me credit for exposing myself in this form...and while i was lying in bed tonight i was night dreaming about driving to Madison tomorrow - you see I used to drive to Madison all the time to see my friends in college and then I even lived there for a fabulous summer.  But then everything began to slowly collapse and a "simple" trip to Madison to see one of my best friends doesn't feel so simple anymore.  And all of a sudden the confines of this illness and its extraneous after shocks that continue to rumble through your body, mind and soul were haunting me.   I said to a friend earlier that I now know why the caged bird sings and its song isn't pretty.  I do my absolute best every single day to be grateful of all I have been given and all I have learned but the loss of self this illness has imposed is like that poor cage bird singing - screaming - please let me out...

I have always had a visceral reaction to people wrongly accused - an unexplained pain hits the depths of me when i hear these stories of those put in cages - treated less than human no longer a name - but a number - for something that as simple as a DNA swab sitting in some lab down the street could let them fly free.  I don't know, but from what I have heard prison strips you down to your nakedness - literally and figuratively - and perhaps that is why i empathize (with those wrongly accused or otherwise)  since I feel like this illness has stripped me down raw - vulnerable - exposed - I have lost a bit of faith in myself - I don't look in the mirror and see strong and independent staring back at me the way I use to feel.  I force myself to realize I am strong to deal with all these crazy ass symptoms, but like that wrongly accused individual - I have to force myself to see what others may not be seeing, or  see past the constraints.  And like those prisoners that must focus on hope so they don't become bitter when the chains are removed, I relate - I work hard to have this illness not crush me but lift me up ( oh this is sounding so Oprah right now - "Let your surroundings rise up to meet you...ha)  So, while I am thankful and gracious that some may view writing this little blog that a few people may read as being brave - it is nothing like walking this world with an entire new identity that you didn't really sign up for - this is the easy part - it is a place and space to come to peace with how naked  I feel  each and every day since this journey began.

I now understand my grandmother's lack of modesty after being a long term cancer survivor - this physical body i inhabit bears little resemblance to what I connect to - it betrayed me a long time ago - so poke - prod - take blood - in and out - do whatever you have to do - but please just figure it out. It wasn't until i entered the blog world of this illness and began reading other people's stories that I woke up to the depths this illness reaches - because this symptom of feeling like I am not only losing my physical health - but a part of who I am - what makes me  - me - seems to be almost universal.  I have heard people say or right that they feel like they are dying from the inside out - that they feel they have lost themselves...the descriptions go on and on - 

Its that unexplained little caveat - just like the irony of exercise making you worse - that you can't measure or explain - but if you are living with it you and read someone else's words that aren't the same as yours but they don't have to be you see right through them and tears well up because you no longer feel so alone in this mystery.  

This illness begins with a question...what is wrong with me...this vague set of symptoms that at first make no sense at all but as you keep moving forward and become blessed with doctors that are interested in thinking inquisitively asking questions to which they may not find answers - you have begun the first step.  What no one tells you is to be prepared for it to slowly erode how you feel about yourself.  All those things you DID that defined you....they slowly get taken away...the parties you hosted, the travel you did, the golf you played, the concentration you no longer have, the ease of eating out is stripped, then comes the shoes - oh how you loved heals - but you can't stand on them anymore - then the clothes you can't where because you are hot one second cold the next - then the hair dye that you are allergic to - or going to the hair salon b/c all the smells and the head back in the sink - its too much - everything is too much - so you cling to the simple things - you learn to appreciate what others may gloss over - you meditate on the beauty that is in suffering and the compassion it allows you - you find the joys of 30 minutes at the park - or two hours at the birthday party - but even still - every joy you have is tainted by the sorrow of what use to be.

This past few weeks I have come to a point where I literally can not take this for one more second.  And then I wake up and do it all over again - and find happiness in what I have rather than disappointment in what I don't.  If I am lucky enough to be on this crazy earth for a lot longer - some tough decisions lie ahead - because I have reached the point where I will do whatever it takes to be better - not better for a month or two - better - really better.  I want this selfishly I want this so I can be the aunt I always thought I would be - I want to work again - I want to travel again to Europe not being consumed by will I be able to eat what is served if I can't communicate these f'ing food allergies.  I just want myself back - I know I will never be the same after this illness - I can only hope I can be better - and I will never give up.  I leave for Phoenix in less than a month - and I am scared.  I am scared to go for pieces of the trip by myself, I am sad for the time I will be away from those I love, but most I am scared that this will not work.  The reason I am going back and going back for longer is because it did work - the proof was in the aura I guess - when I returned at the beginning of the summer there were many comments that I looked different - and even though I now own 3 tennis skirts that I never felt good enough to wear after that one visit to the court - I bought them because it was possible - possible is what i cling to...

So tomorrow - I am going to do my best and get into my car and drive west - I need to feel free again - this "cautious life" that Sue Jackson wrote so beautifully about in her blog gets heavy - and maybe the fact that I am thinking I may even try means some of the shackles have begun to loosen.  They say after someone leaves incarceration its the beginning of a new and difficult journey - the key to freedom isn't the key to easy street - its just the key that will knock down that door - and what lies behind it may be just as terrifying as what you left - the rules, the lack of choices - and that is how this illness has begun to feel to me  - something that has clipped my wings - and in chronic illness everything is a process - even the healing - therefore I am hoping this caged feeling is in part due to a bit of healing, coming out of the fog that was so deep and so dark that the thought of breaking free was such a distant dream it was one i never dared to - a few years ago our friend who owns a floral shop sent my mom a little tree with three Monarch cocoons - and I was at her house when they began to break free - it was awe inspiring - the cocoon turns gold and they slowly break free from this dark snug place - its this delicate process and once they unfold they find the nearest window - they find the light out of the darkness and they are free.

 Naked - by The Bodeans -

 the song i couldn't get out of my head - i never knew all the lyrics before printing them out  - whenever i hear it - raw - vulnerable - exposed all come crashing down - 

Baby, ask me anything that you want

And i'll look you in the eye now

There can be no surprises

If we mean what we say

I've been around the block

And i've done some things

That i ain't so very proud of

Darlin' help me leave this cloud of

Rolling lonely behind

Naked

I'll stand naked

If you stand naked with me

I'll stand naked with you

In the morning when i look in the mirror

I look twice at what i'm seeing

If those eyes are really me then

Lord, have mercy on my soul

I'm walking forward but i'm walking alone

And i need some understanding

Hell, we all need some understanding

And i want you to know

My hands are shaking as i reach for the touch

And all i want to do is hold you

And i want to lose control

You are so easy to crave

The time has come for us to lay it all down

There can be no more denying

If i can't have you i'm dying

A little more every day

Naked

(take me out from the shadow)

I'll stand naked

(lead me down to the waters)

If you'll stand naked with me

(drown my soul in a sea of love)

I'll stand naked with you

(don't leave me haunted, 'cause)

Naked

(i believe in the searching)

I'll stand naked

(and i'll find my way through the darkness)

If you'll stand naked with me

(there are doors ahead if we see clear)

I'll stand naked with you

(they're falling open)

1993 Bodeans on Letterman - i was trying to find a good you tube video of this song and stumbled across the Bodeans on Letterman in 1993 - if you have read my  previous post you may remember me mentioning meeting Sammy (the lead singer) at a bar right after this performance and to my dear friend Gina's horror and delight i asked him what band he was in... still makes me laugh!

roomates

I am too tired to write much - but I thought I would add a little cheer - and what better than a new little baby!  I was so excited to feel well enough to head over to my sister's and meet Chloe - my cousin Katie's third addition to their family.  I wanted to write a longer version of my roommates past - but am too tired to do it justice today - so i will only add quickly that there never was a better roommate - some that were tied - like Katie's brother - but when Katie and I lived together on Belleview in the upper flat that the owner let us paint and the claw foot tub - there are too many good memories to begin to count - so i will just say - Katie is one of those people that you want at your party - her joy and fun are contagious - and i will always treasure those late nights with our favorite Black Opal red wine and the Einstein's coffees that we were convinced were laced with something because they made us crazy....she lives in Chicago now, and I hate that I have yet to make the trip down - and would love nothing more if they moved a bit north - but I will just have to savor the moments we have - and feel so lucky all the memories we have shared...introducing sweet little Chloe -

Addison loving Chloe

George, Addison, Chloe and Me! Happiness

long september...

well, okay apparently the Counting Crows lyrics are Long December...my bad - but its only September 10th and its been a long September - and i have hope that next september things will be better.  Well, after complaining about having extra weight ....i'm sorry - i'm sorry ....i'm sorry and now i'm thankful - i've now lost almost 10 lbs without trying d/t nothing will stay in my stomach - i feel nauseaus most of the time...I know this has happened before and i try so hard not to get alarmed when my body goes completely off the rales - i just wish i was in phoenix and had the support from my doctor - in time - will be heading there in october.

if feel at times i am the greyhound running after that little bunny - so close - so close - so close - but i can not reach it - but i can see it - i can feel it in my bones that i am at a turning point and part of that has been acceptance - allowing others to see me in my not so perky state - another is the conscious decision that i have no choice to put my health and what is best for my health in front of everything else - it means being a bit "self centered" - i feel that if i don't i will not come out of this - and there have been moments this past few weeks that i think i just can't take this another minute another second another mili-second - please let me be well again.

on saturday i was in bed most of the day - but I got it together to make it to a family wedding that i would have been crushed had i missed - and for that hour i felt like my old self - flitting around like a social butterfly - catching up with everyone - watching my  (2nd) cousins ( 6 sisters 1 brother) dancing and laughing - it was my cousin Sandy's daughter who was getting married -it was Sandy who use to babysit for me - and show me how to look the most like one of Charlie's Angels with the blue and pink eye shadow and feathered hair - who always use to say to me when i was little - "who's little girl are you" - I remember her wedding and all of her sister's weddings to and i would have been jamming to We are Family...but saturday night i was content to just watch - grateful to be there -even if it was only and hour - it was an hour of pure bliss - a moment when this illness teaches you the love of the moment - because its all it often gives us.

this illness is pushing me to be stronger - to fight - to fight for myself - anyone one will tell you - i'm the one you want on your side - if there is a problem i will do whatever it takes to try and fix it - well now i need to take my own advice - find how i can fix that and at times it feels selfish - looking to go back to phoenix for my treatments i told my doctor - you lead - i will follow - because i can taste freedom and nothing tastes as sweet.

A diary, a book, a blog, a journal....

When I was in third grade, Mrs. Kessler had these little reading books that looked ancient - and they contained little songs that helped you read to a tune.  My favorite went something like this... Blue shoes - blue shoes - red and pink and new shoes - which one will you choose - if you could buy?  I can't seem to remember the exact phrasing - but it went something like that, and every now and then that tune pops into my consciousness.  I feel a bit like that when I am writing this blog...which way will i choose.

When I set out to write this blog, it was a way for me to find a morsel of control when i had felt i had lost all control to the isolation and ever changing symptoms of this illness - it was a way to find a voice to yell and scream at It - to reflect on It - to ponder It - to track It - to learn from It - and as I have said before it took a very special person -  to show me the path and give me the courage to begin it - again, thank you jules (which i always called you Julie - but so many called you Jules and it just seems to fit better - hope you don't mind :)  you seem to help me even now that you are gone.

I had very few expectations - some have been met others have not.  I have found surprises along the way - in the community of bloggers that also feel quite helpless with the lack of understanding, treatment and path of this illness and those friends, family or strangers that have taken the time to read and hopefully it has given those a better understanding of "the new me" the person "living with this illness."  I have found courage, strength, knowledge and a sense of belonging - this i had not expected.  I have also found disappointments along the way.  However,  I choose not to be bothered by those - its the risk of a writer - like any artist - you must decide that you are going to charge forward - do the best you can at any moment and time and let the pieces fall where they may.

The greatest challenge I find about writing this blog is which way will I choose...deciding how I will write it.  Since I always write it directly on the blog template, not writing it on word and cut and pasting - its a spur of the moment thing.  Often things I want to write about come to me during the day - or nag at me at night - or someone will say something and it inspires me to share.  But just as often I decide - like today - that I have taken too long of a break from writing - and it keeps me sane so pick up the damn laptop and whatever pours out - just let it rain.

I try hard for this not to be a journal or diary - those immensely private thoughts that are kept under lock and key - and are vented often in frustration or bliss that could come back and hurt someone or in some case really just be of no interest to most.. like a dream log - they are never as interesting to others as they may seem to ourselves -

Its been a rough two to three weeks - moments have been good - but as a whole i often try to get through minute by minute.  At times I have felt broken - mentally, emotionally and physically.  Food seems to taste like poison and my body seems to react in that way - consequently I have lost about 6 lbs in this time frame (i guess here is where the "sick weight" has been a blessing).  I have had moments that have tested me and I have looked in the mirror and sometimes see a ghost of myself with a face staring back at me that i do not recognize.  I also have had moments of absolute clarity - and moments of pure joy - I have had a people that have disappointed me and almost broken me and those that have lifted me up when i was willing to accept their help.  I have forced myself to be comfortable around others when I don't feel well - where I normally retreat and want to be alone because I feel so stressed and anxious when my body gets so depleted - but I have dug deep and allowed myself to be who I am at this moment in time - and sometimes its not a pretty sight - and I have begun to try and stop hiding that part of me as if it was my fault.

A friend of mine when she was going through a really rough time use to do this meditation - or better said sequence of thoughts where she would imagine where she was and work outwards and then back....here it goes...in my bed...in my house...on my street...in elm grove...in wisconsin...in the united states..in north america..on the earth....past the earth into the sky...to the moon...to the stars..to the universe and then begin to look back from so far away where you are just a spec in something so large and come back home.  She would visualize herself like this first as big then as small part of something big and then back again - and that's a bit how i feel right now  - when everything around you seems to be coming at you too fast - I remind myself to Just Breathe, 1,2, 3 and leave myself and go beyond myself - feel free of myself and then slowly come back.

I try my best to blog - write something with an intent that focuses on a specific aspect of my life - and someday soon i hope to be strong enough to work on a book - I try and up the integrity of the writing to surpass the level of journaling or a diary - sometimes i succeed and other times i don't - but i noticed i have written close to 150 posts - and in the days that i feel i accomplish little - i can look at that number and feel proud - and reflect that for all this illness has taken from me - and often how i feel it has used and abused me - i can look at that number - 145 and think...right back at you neuro-endocrine-immune disorder - i have used you too and no matter what I will win.

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:)

don't feel much like writing...

I don't feel like writing  - but the good news i have begun to think again as if i am writing - this always seems to come back when i have more space in my head to deal with real life rather than sick life.  you begin to play these head games - maybe focusing and writing about this is making me worse...but then you know the flip side doesn't work - trying to forget about it - so instead i thought i would post some pictures that always make me smile...

The box that Addison gave me the day after my birthday with a plastic heart ring

The card my friend's daughter gave me two years ago on my birthday that she picked out for me
- So i framed it and it sits on my bathroom counter

The two items that were given to me the Angel Coin from a woman named Ashely and the
Penguin from my sister before I took the boards for good luck and I passed!

Ahh the healthy days...Maid of Honor I love this photo

My grandma and I when we took her to France and our crazy trip to Lourdes
One tough Cookie