Sunday, September 30, 2012


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.

Wednesday, September 26, 2012

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 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

Monday, September 24, 2012


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 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'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 get the picture...

My Very Own Terabithia

Sunday, September 23, 2012

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..

Saturday, September 22, 2012

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 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.

Thursday, September 20, 2012

My Booty is my Buddha!

Nothing will make you feel a bit lifted than being around a 4 year old.  My mom and I ended up taking Addison to her dance class this afternoon - its a perfect type of task for me - its only an hour and I get to hang and then listen to her talk in the car and sit while she is at her class and then head back home.  Just over and hour - enough smiles without too much exhaustion.  She was having a rough day - or I should say a typical day for a 4 year old - laughing one second crying the next - it all is oddly calming to me as I think oh sweetheart i feel like doing the same thing!

As I was getting the little one in the carseat she asked me what was on my shirt - and I told her it was a Buddha - and she asked what's a Buddha - and as we are running late and I thought what is the easiest answer for a 4 year old - so i said - a Buddha watches over you and helps you feel safe.  Seemed to do the trick - and then I said okay missy can you please get your booty into this car seat asap - and she laughed with the similarity of Buddha and Booty - and kept saying - My Buddha is my booty -I'm putting my Buddha in the car seat.... and she was cracking herself up - and us too.

So I called her my little Buddha - and that she is - one who brings me joy, peace and makes me feel safe - thanks my sweet girl.  As we were leaving dance i was thinking about how this illness makes it so difficult to have or care for anyone let alone a dependent child - but if you can handle it - the trade off is priceless.  I am lucky I have not only my niece and nephew - but my friends that are so generous with their time and their children to help lift my spirits.

A few weeks back when my friends and their children stopped by and I had no choice but to head to bed while they were here - I loved how 3 of them piled in my room - played with their toys on the chair completely unfazed by their "aunt" lying in bed a few feet from them - and then the oldest seeing my oblivion had a very easy time pleading her case that she needed another back pack buddy so her two best friends wouldn't feel left out!  Little did she know at that moment she could have asked for anything and I would have said yes!  So I enjoyed listening to her tell her mom in the other room that yep, Heather said I could have another one...there is something that makes you feel safe when you are in the other room lying down feeling sick but others are just around the corner going about the rest of the evening - laughing - drinking - kids fighting - it reminded me of when I was little and would fall asleep to the muffled sounds of parents having a party - the white noise that all was okay and you could rest easy...

well - just wanted to jot a bit of the good stuff down - xo hkd

Hitting the Wall

I was signing in to write a brief post about hitting the wall - or perhaps the glass ceiling so to speak of this illness.  The past few weeks have been daunting and had twists and turns that I hadn't seen coming - and I feel like I am so close and then I hit the wall and hit it hard and it leaves me overwhelmed and feeing a bit bruised inside and out.   I have been dealing with minor pancreatitis - which is uncomfortable - worse with stress - and better with simple foods - but unfortunately so many of those foods - a simple chicken broth or applesauce I can not eat - so i feel trapped.  Would something please give -

So anyways - as I was about to write this post I saw that Sue Jackson had written a new post and right there in the text - the same phrase....hitting the wall - so i thought i would instead of sharing my own experience right now I would share hers....peace to all those out there hitting a glass ceiling - remember at least through glass you can always see the light...hope one day at a time for strength we don't know we have but prove it every single day - and are reminded by those we love its all worth it...(alright so i decided to briefly pour out my hitting the wall big moment and it seems i have been hitting smaller ones ever since)

I was feeling this way because I didn't make it Madison - my inner Thelma let me down...I had done to much in the morning but was feeling pretty good - I wasn't able to eat much - but I wanted to go so bad - I was just craving the freedom - my mom offered to drive me which although I really didn't want - not because I didn't want her company just because I wanted my old self back - but i knew it was too much to drive myself and not safe - so that would be stupid - so we left Home Depot where we were deciding on appliances for the condo in Arizona - all the damn bright lights - bad air - many decisions - started to get to me - but I was holding my own - then we headed out and despite being able to see the freeway and knowing how to get to Madison we started listening to the little computer lady that had decided to take a unwanted tour of the town of Waukesha and it was so frustrating with her little voice and we were all turned around and this simple trip wasn't feeling so simple anymore  - we finally get to the freeway and I began to feel it coming in a big wave - that same feeling of complete meltdown - but I closed my eyes - looked out the window - thought of the finish line and then I figuratively smashed into the wall and we exited the freeway - pulled into the Harley Davidson parking lot across from a hosptial about half way to Madison and I was shaking - couldn't breathe - a combination panic attack and body collapse - and the same thing - I just broke down sobbing - I texted my dear friend Thelma would have to fly another day...and as we drove home I was so thankful for my mom and thought what will i do without I could tell this was as painful for her as me - I kept saying over and over I just hate myself I hate this illness I hate being me...I just wanted to escape it so bad leave it behind - I just want something to give - the food allergies - the panic - the fear - the aches - the pulsating pancreas - the blood pressure issues - the infections - this hamster wheel that has trapped me and exhausted me.

And you know what my friend texted back...I believe in you...and another...I trust you....and my mom - I am so proud of you - and that is all you can ask for and more - when you give up on yourself that others don't.  Craving comfort - I hear you Sue -

Learning to Live With CFS - Sue Jackson


Hitting the Wall and Craving Comfort

I hit the wall last night during a book group meeting and had to abruptly leave in the middle of our discussion.  I literally ran to my car, feeling as if I would fall apart if I didn't get home, to my bed, as fast as possible.  I felt as if my entire nervous system had short-circuited.   Up until then, it had been a pretty normal - even good - day for me.

Tuesday's nasty wet weather had passed through, leaving my extra aches and exhaustion behind with it, the sun was shining, and I felt good.  I felt like myself - able to concentrate and focus on what I wanted to do, able to write, even a bit energetic.  I  took a longer walk than usual - a whole 45 minutes!  I wore my heart rate monitor and carefully stayed below my AT, but it was so nice to be out in the sunshine and feeling free.

I took my daily nap after lunch and jumped up at 3:15 to go meet my son at his soccer game.  I was a little tired, but that's normal when I first wake up.  I found the school and saw that their soccer field was a long, long walk from the parking lot, so I carried my chair and my bag over there and sat to watch the end of the game and chat with another mom.  Craig and I came back home, and he wanted to watch TV, so I went up to my bedroom so I could finish my novel for book group.  As I crawled into my bed, I realized I was feeling pretty achy, but I figured the rest would help me.

At 6 pm, I still hadn't finished the book (20 pages to go!), but it was time to meet my two closest friends for dinner.  I was a bit worn out but attributed it to hunger and the late hour (we usually eat an early dinner to address Craig's and my low blood sugar).  I drove over to the restaurant in my old VW convertible, enjoying the mild weather and fading sunshine.  I thoroughly enjoyed dinner with my friends and getting caught up.  I felt the beginnings of a headache but attributed it to waiting too long to eat.  I took 1 Sudafed, hoping it wouldn't be too much too late to disturb my sleep, and the headache faded a bit.

The beginning of the book group meeting was great.  We had a nice turn-out, and everyone had enjoyed the book.  The discussion was lively and interesting.  I felt fine at first, but gradually, symptoms began creeping in.  My headache started to worsen.  My legs began to feel achy - just a bit at first, then worse and worse.  My face started to flush and I felt hot all over (obvious OI symptoms).  I tried elevating my legs, I drank lots of water, but nothing was helping.  I was watching the clock now.  We had started to discuss choosing our next book, so I thought I could make it to the end of the meeting.  And, then, suddenly, I couldn't.

That phrase, "hitting the wall," is the perfect description.  I just suddenly felt as if I could not stay in that chair for another moment.  I abruptly stood up, grabbed my bag, made a quick apology, and fled.  The top was still down on my car, and it was a cool evening, but the chill felt wonderful to me.  I tore out of the parking lot and drove home as quickly as I could.  I took big gulping breaths of the cold night air, feeling as if I'd been suffocating and suddenly had oxygen again.  I got home in record time and went right up to bed.  I wanted to get into comfy clothes but couldn't even manage that at first.  I crawled into bed and under the covers and started sobbing uncontrollably, both from pain and discomfort, as well as relief.  I was shaking.  I've never been so glad to be home in my life.

When I calmed down a bit, I limped over to the dresser, peeled off my clothes, and pulled on my oldest, softest pajamas and big fluffy socks.  I crawled under the covers again and picked up my book, thinking over and over how glad I was to be home.  I was craving comfort - anything warm and soft.  I just wanted to be a child again, to have someone put their arms around me and comfort me, tell me it was OK now, I was safe, and pat my back.  I asked my husband for a cup of mint tea and slowly relaxed.

I woke this morning feeling as if someone had thoroughly beat me last night - sore and achy all over, exhausted.  I am still craving comfort - wishing my mom were here to make me homemade custard like she did when I was a kid.  I'm wearing soft yoga pants and an old t-shirt, bundled up in a fleece blanket, and still aching all over.

It was an unusual experience for me just because I can normally read the warning signs better than that.  Even though the symptoms came on gradually over several hours, they seemed to come from nowhere.  This is THE defining characteristic of ME/CFS, right?  These sudden crashes - that is the only word to accurately describe it, a crash.  Who knows what caused it this time?  The long walk in the morning?  Doing too much all week?  The extra walk at the soccer game?  Or perhaps even a viral trigger my son brought home from school - he spent 2 days earlier this week in a mild crash from being exposed to something at school.

Sometimes, it doesn't matter what caused it (and certainly, you can drive yourself crazy trying to figure it out), but isn't it amazing that this crazy illness can still surprise me like that after 10 years?  Ambushed.

Maybe I could make custard using coconut milk....

Sunday, September 16, 2012


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

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

(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)
(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!

Saturday, September 15, 2012


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

Monday, September 10, 2012

long september...

well, okay apparently the Counting Crows lyrics are Long 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.

Thursday, September 6, 2012

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 it my my house...on my elm the united north america..on the earth....past the earth into the the the 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.

Saturday, September 1, 2012

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 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 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:)

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