Wednesday, August 29, 2012

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

Tuesday, August 28, 2012

used to it...

you think you would get used to it...use to waking up feeling like you have the flu again and again...or feeling good or even great and then pushing the pendulum a bit too far and crashing like slipping on a rock at the top of the mountain - only one little slip and you can fall to the bottom.  That's the thing i don't think you can explain to someone - you can learn to cope you can focus on the positive you can try and pretend you feel okay - but you just or at least i don't get used to it.  I just can't seem to wrap my head around this some days - or i still get scared that perhaps that something is even more wrong...maybe i have cancer - maybe i have an ulcer - maybe i have and the beat goes on...

Sunday, August 26, 2012

heather's feathers

This was a name of a book I loved when I was little.  Perhaps it was what began my interest and love of watching birds....was perusing a few other blogs and this one caught my eye...

Taken from the blog...The Thing With Feathers by Susannah Grace. Explaining the meaning behind the name of her blog.

The name is taken from an Emily Dickinson poem, which beautifully summarises the truth that it's in the centre of life's storms that hope becomes the sweetest, the most real & constant.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

Gratitude Sunday

I've been feeling really overwhelmed this past few weeks - mostly because of one really really good day that the clouds seemed to open with the possibility of what was yet to come and then it all came crashing down and its been difficult to wrap my head around it and re-adjust to another new normal - You can't wish this away or ignore it away and it doesn't make all the other stuff in life stand still - I read Carole Radziwill's memoir awhile back - What Remains - and in it she briefly mentions that this memoir is just a slice of this part of her life...and that resonated with me because that is what this blog is - its not the whole picture - its a slice - its a reprieve where I can yell and scream - ask questions and try and find answers of this slice of my life - that without this outlet has the capacity to drown me.  It was this realization that this illness could potentially and I felt was beginning to isolate me and define me that forced me to expose it in this form.  I could not wait for a book - or a resolution - or peace - I had to find the peace within  its constraints.

So, since I have felt a bit whiny these past posts - thought it was time for a reminder of all - or a snip it of what i am grateful for...

1. I have small pores - this may sound ridiculous - but its the truth.
2. When I was about 13 and gawky I was taking a walk and for some reason this thought came in my head - an age where beauty seems to define you - i realized that for once i was happy with my looks - i wasn't the most beautiful - but attractive and it seemed that for some reason people  trusted me with their secrets - or their friendship and perhaps if i was like the prettiest circle of popular girls I would be treated differently  - now let's be real its not like i still didn't contemplate a nose job - but when i got to that point - i would remind myself of that odd moment when i was 13 and she seemed a bit smarter than the one that desired to go under the knife
3. I have the best dog ever....
4. Currently my family is all pretty healthy -
5. I have good friends - friends that have come and gone and return - and I feel lucky that they always know they can
6. There were very few tornado warnings this summer so far....if any....which i didn't like the heat but that was a welcome trade off
7.  I have a really pretty yard
8. I have the best parents ever
9. The invention of DVR - (blessing and curse)
10. I have a really good memory for the important things - despite having the most difficult time with the most basic of - is the liver on the left or the right....
11. I was sick in my tweens - healthy in my twenties - sick in my thirties - the forties gives me hope - there is always still hope - that some are not given -

Saturday, August 25, 2012

Dear Dr. ...You are correct i DO NOT HAVE CFS

Dear The following doctors....the one's at Mayo Clinic that took all the blood humanly possible but somehow failed to do a full thyroid panel....the one I respected that said i had too many good days....the Endocrinologists that assumed I must be puking in the bathroom because I was 100lbs and my TSH wasn't off....the one that didn't seem to care that my blood sugar was plunging after all meals...the OBGYN that told me my 30 minutes of walking wasn't good enough for my heart b/c I should be reaching anaerobic threshold....need I go on...

CONGRATULATIONS!!!!!!!! you were all correct - you win the prize - you are smarter than me - you have a medical degree but I have the f'ing brains....I don't have some lame ass named chronic fatigue syndrome....yuppy flu....I have neuro-endocrine-immune disorder - so despite you being wrong about everything else - breaking my trust and my spirit - you win - I am not merely tired - I have a brain that can't seem to tell my body that I am now vertical so please compensate...I have a body that defies the conventional wisdom that no matter what the condition exercise will make you feel better...I have an immune system that has turned on me declaring war on the most pleasant of smells and food to send my body into a high alert code red...I have mind numbing fatigue....I have a digestive system that leaves me feeling weak...I have multiple co-existing chronic star for all of you - apparently you were right all along...I do not have f'ing chronic fatigue...I can only wish.

But guess what I don't care what you said - how you said it - I don' t care that somehow you seemed to lose all common sense and brain cells that you brought with you to medical school and traded on it for  your many years of treating lab results and symptoms rather than people...I forgive you....but I have yet to forget anyone of you....and today would not be a good day to bump into me in the grocery store.

The normally absurdly pleasant patient - who learned her lesson.

p.s.  All you ever had to do is say that you didn't know what was wrong - but you would help me figure it out.

Friday, August 24, 2012

can i post this???

I am posting a link to a popular blog - she says you can't reprint anything she i am guessing i am allowed to put the link - read her spoon theory its fabulous....

But You Don't Look Sick

too much blush?

I am lying in bed once again - the tide hasn't completely shifted yet - but as i was lying here i just couldn't stand knowing i look as pale as nicole kidman - and it seems to work a bit better on her.  So i grabbed my mary poppins purse that has a never ending bottom with many random necessities and what else can i do but grab the blush and get rouging!  If you are lying in bed - no one says you shouldn't wear lipstick and blush - as i looked in the little mirror i began to laugh taking me back to our high school french teacher - mademoiselle cooper.

She didn't wear hardly any makeup - but she always had these two sweeping lines of blush - wait no that was my 5th grade teacher...mrs. oh damn what was her name.  It was Mademoiselle Cooper that would meticously look into her little mirror and apply the faintest of lip gloss before our class.  My friend Melanie and I got a bit obsessed with her - that strange pull of intrigue wondering what you teacher is like after hours - In the four years we had her as a teacher the uniform never changed- a Laura Ashley ensemble - almost always dresses - with a matching sweater - different colored perfectly neat Espadrilles in a rainbow of colors - the loose paige boy haircut.  We even decided to join French club trying to make our case for a class trip to France - we were convinced beneath the sweet facade she really didn't care for us - perhaps she saw us slowly driving up Wisconsin Avenue on one of our Friday night adventures to see if we could locate her residence.  But then our suspicions were solidified when the year after we graduated - mysteriously French Club took a trip to France - I am laughing now thinking about our outrage!

When i was getting an echo cardiogram this past week my chatter box self couldn't help but pry and get out as much info as possible from my technician - and it turns out his daughter is a top of the line brainiack (which i am guessing she would tell me is not a word) a double major in Neurology and Psych from NYU and Harvard.  But that led us to discussions of traveling and his families trip to France.  They arrived in an October heat wave - my nightmare - but anyways I told him the first thing I am doing is booking a flight to Paris and then going to Nice when I am better.  My true route will be the fabulous mystery key tour - but that's currently an Everest type goal.

I may have mentioned before, but years before my grandmother passed away and she was moving from her condo to an assisted living she told us to take whatever we wanted.  I wanted two things - the antique brass floor lamp and the keys.  The keys that had hung in her kitchen without much fuss - but were a roadmap of her and my grandpa George's travels - a few years back i looked up all the hotels from the keys - and most were the Hotel International Group so they all still exist - my Everest Dream - is to re-create that trip and stay in the same room - ahh but for now I will stay in bed until this passes with rosy cheeks and red lips.

My Key Dish

W Hotel - Arlington, VA - Palace Hotel Madrid Room 114 - Excelsior Roma Room145
King George Hotel Athens - Room 106 - Hotel Burgundy Paris - Room 45
Apparently My Grandfather and I have something in common - No elevators -
or maybe he knew I would be drawn to do this trip and saved me the worry - thanks - Love You

its 2am....again...

It's been a long day...and therefore a lot of lying around - and then I crashed from 5pm - 7pm - so here I's 2am and I can't sleep - mostly because of how thirsty I am - so apparently I have been dehydrated - and tonight my body decided to catch up.  Its been a cocktail of juice/salt/h2o - then large water and back to the juice.  It would be fine if it wasn't keeping me up - but oh well - perhaps the tide is changing and tomorrow - which is today - is the beginning of a better swing.

I did all my tricks when i can't sleep - however obviously none have worked since i am here typing and thought perhaps i could feel somewhat productive today - even again if its technically tomorrow.  But as i was lying in bed my mind kept drifting to what would i be doing if...its not a good game to play no matter where you are in life - since it doesn't matter because you are right where you are - i have never been much of a planner - more kind of just drifted into different paths.  But I did have a plan when I left for phoenix - prior to going to ND school - i was a massage therapist - knowing i wanted to do something in the health field but not exactly what - then it was the perfect career to have while I went back to school for my pre-med pre-requisites.  Prior to that I had graduated from undergrad with a major in Psych and a minor in Africology - don't blame me on the lame name - no one could agree on African American Studies - but technically it included studies of  Africa too - anyway - i had some of the best professors ever in that department - no matter what they were teaching...after graduation I joined Public Allies - an organization i had volunteered with while in school.  It's a service based program that Americorps was based on , and our valiant leader Paul Schmitz is now quite the fancy pants in the non-profit world - rubbing elbows and ideas with the First Lady and the current administration.

I was an economic development coordinator in Midtown - and long story short...because remember its 2am and I would like to get myself to sleep -and this is was there I became a bit obsessed with the difference in the health of the wealthy and underserved.  Asthma was rampant - just every day colds would take weeks to get over - etc. etc.. so that's when I started looking into medicine more seriously.

So, my plan when I left for Phoenix was to come back after I got my ND degree and set up a Naturopathic Clinic within one of the existing free clinics in the area.  Then, since Wisconsin isn't a licensed ND state - thought I would more train the MD's in more preventive and complementary treatments that were cost effective - once it was up and running I had planned to go to Marquette's Law School - I had already years earlier taken the LSTAT and for not realizing how hard you are suppose to prepare for such tests - didn't do half bad.  That's what i was "night" dreaming about as I call it - during the day I am just trying to get through - I am trying to muddle through this illness and its cornstalk maze of roadblocks and just trying to do the best I can...but at night - I night dream while awake thinking of the what if I wasn't sick - ohh the places i would go.....

It only lasts a bit - and then I remind myself that I am lucky I even had those dreams as a possibility - and its not too late- I just need to figure out how to adjust the sail - or delegate - or perhaps this illness has forced me into the corner to write - which is something I always loved to do - but seemed to busy doing other things besides journaling...

Here's hoping I head back to bed and wake up a bit stronger than yesterday - that's all I'm asking for just give me an inch - and I will take the mile.

Thursday, August 23, 2012

perfect tee...

so what do you do when you feel awful - continue to feel awful - and you can't seem to fix obsess over the perfect t-shirt.  i feel like goldie locks..this bed is too hard this one too soft...but ugh i can't find the one that is just right.  this is what "we" aka "me" does when i can't seem to fix this thing...i focus on the lipstick..the jewelry...costume or real...and the perfect thing to wear.  I use to love clothes and high heals -but when i first started getting sick with my thyroid it was like a 32 year old going through menopause while taking speed - i was just so damn hot always hot.  I needed air constantly air - couldn't stand my beloved turtle necks - get rid of the cashmere - just give me a tank top winter - spring -summer or fall.

so as my health changed so did my wardrobe - plus the constant changing of sizes - someone who never knew what it was to have more than one set of clothes for different sizes had lost over 25 lbs - went from not being able to even fill out a size zero - to now squeezing into an 8.  Wow - that gets costly - but what doesn't change is my beloved paper thin t-shirts - t-shirts that are baby soft - tank tops - you name it - oh and the "cardy" ( a little Nodding Hill shout out) forget the pull over sweaters - give me a wrap.

so today - as my body just doesn't want to come to terms that any day now would be a good as time as any to get it together - i will put on and take off the orange ruched tank top - to tight - the shiny black v-net t-shirt that felt too clingy - my go to perfect white cynthia rowley t-shirt that i liked so much i went back to TJMaxx to hunt for a second - it had a detergent smell - ahh and finally - that is until i get off the computer and this doesn't seem to work - the paper thin loose white v-neck almost see through white - that will have to do for now - and maybe the next one will be just right - at least something might ass well be.  (okay that was an un-intended typo - but i had to laugh perhaps it was freudian slip!)

Tuesday, August 21, 2012

tide change...

After a long two weeks and the past two days being constantly lightheaded - seeing spots - the tide is a changing....listening to "so i have to tell you i love you in a song" on the "oldie" station playing on the boom box at the pool - got to see my parents and their friend as they celebrated her birthday sitting on the the sun is setting...not sure if i can swim today - but i'm here - and that matters...rosy rosy rosy...

Monday, August 20, 2012

rose colored glasses

what do  you do when you just can't take it anymore.  you are just so tired of waking up to the reality that you are sick and tired - and feel once again that instead of your "pick day of the week" two weeks ago being a breathe of hope for better things to come has turned on you to feel like a cruel joke to remind you of what life was like before....what do you pick yourself up all over again - and try and change the lens of the darkness you are wearing to a brighter shade of pink. because it may change - in a minute or an hour - maybe a day - or a week - it will change that is all i am sure of...

Friday, August 17, 2012


I already know what I am saying..but I will say it anyways.  Very few of us get a free pass on this earth to have it easy.  Some get an extreme raw deal - and others though may look like they have it all are empty inside.  Who knows how we are magically popped into what body in what place - but where ever we land its up to us to find our way.

Now - I'm not a theologian - so don't hold me to this...but a basic premise of Buddhism is suffering. Like I said - no one gets a free pass.  But its not a suffering because you are a bad person and need to atone your sins...its just as simple as this is earth - its got a ton of moving parts - and good luck on the ride because most likely its going to be bumpy.  And sometimes the only power we have is to learn how to keep picking ourselves up.

I was at a devastatingly sad funeral this week, not of someone I knew well - or in fact even at all - but see that's the beauty of where I have grown up - its a community - that has webs and vines all over the place that keep us all connected.  I was lucky enough to grow up where I could cut through backyards to catch the later bus at my best friend's house.  I had to dodge the scary doberman pinchers, and was thrilled when those neighbors moved for a more peaceful "commute".  We roamed through our little utopia like it was a vast world.  We could cut through the woods in her backyard and get to my grandparents house, we could sneak next door to them on rare occasions and jump on Mr. C's trampoline.

We took Spanish from Mrs. G in the basement of her home.  As high as we could count we got that many of these special mini spanish cookies.  She gave me my first ever job helping her assemble the greeting cards she was making from her photographs.  I would sit in her dining room and glue the photos - careful not to smudge - onto folded card stock.  I went to the local arts and crafts fair where we ate apples and painfully watched many admirers but no purchases.  So after two hours we packed up and headed back home, where her sweet husband said they probably were too good for a craft sale.  I use to walk her wiry dog Olie and help when she had dinner parties.

My parents driveway is a long hill with three homes.  When you pulled in the driveway you turned left to the older couple's ranch home where I was mesmerized that a grandpa would drive a gold porsche.  Then our driveway at the bottom right with our house facing the road, and further and up a bit of a hill - the hill you needed to back up the car on snowy days to get enough speed to get up the main drive was the creme de la creme in my young mind - if I could I would play music and put a spotlight on the house that was fancy as the fancy people that lived in it.  I adored them, and still do.  I learned a sense of style, meticulous work ethic ( Mrs. P would even go up to the top of the drive and sweep around the mailboxes when too much gravel accumulated!)  She was glamorous and wore winter white - actually winter cream in the winter and sunbathe in her white bikini in the summer.  They owned a foundry and ever so often would bring us white beach like sand for our sandbox.  I would wander around in hopes of being asked inside for a pretzel stick or black licorice that always sat in glass containers on the counter-top.

There were empty fields behind and to the east side of our home that over the years had new homes and new neighbors to occupy them.  I babysat for the three young children behind us - and to this day can't believe the kindness of Mrs. S when she called to check in and i turned to grab the phone while her son fell off of the changing table.  She rushed home and said it was her fault for being so silly to call and interrupt while i was babysitting.  She is now an EMT in our village and when my mom was so sick with shingles she was our surrogate nurse.

Across the street I would linger at Anne's ( I didn't call her Mrs.) while she made her famous pasta sauce and discovered how good peaches tasted with cream and sugar.  I learned about the love and sacrifice of adoption when they brought their first child home, a little daughter and then later a son.  I was too young to babysit so I was her little helper, getting bottles ready, going to find a clean bib.

I had a home where I felt safe - but better than that I had a neighborhood where I was allowed to be safe.  I felt as at home when I was at my best friend's house as I was at my own...Mrs. B made the best milkshakes ever using Mr. Quick - and they always had the perfect consistency - to this day I have never had one better.  We had sleepovers almost always at her house under crisp ironed sheets.  Where annoying big brothers jumped out of closets to scare us or bossed us around.  We played endless hours of "school" in the basement where her dad had those inversion boots to help with your back.  I learned much later in life that when she slept over at my house and we would play password till all hours of the night - which i could never manage even then to stay up so late was because she was scared of the noises in our house -which is crazy ironic considering she has bungee jumped off the highest bridge in the world.  Her house will always be known by her family's name, even when they moved a bit west our senior year in high school.  That's how it is in our village - you are always living in someone else's house by name until many many years later when the tides shift and it becomes your own.

 My friendship has continued to this day with many dimensions and changes, but at its core its deep with love.  I was honored to maid of honor at her wedding - so when their closest family friend and our neighbor are hit with tragedy - you show up.  You show up because you grew up hearing all the stories of their Christmas Caroling together, you drove past their family home every day, and now their grown child ( the "child" that is now my age)  have moved into the house once occupied by the scary dogs.  They are a part of you by default.

As I was at the funeral, when I introduced myself, the children's dad said to me I will have to teach his  kids all the secret hiding spots.  If I can do nothing else, I can do that. I will tell them that they can cut through my parents yard to get to the other neighborhood - they can set up a soccer game in their backyard because its long and flat - and I will let them know while I will never comprehend their resilience and courage at their mother's funeral - or the depth of their pain - I will tell them they are safe.  That though I am sure their previous neighborhood was a wonderful place, perhaps someone plucked them a year ago into this new home for a reason.  I will share with them the history of where they are - I will tell them that while their home has been referred to by two previous names - the love and youth they have infused has brought it back to life and the naming ritual has been passed to them.  I will pray for them that this neighborhood becomes their own utopia and refuge from this storm - I will hope for them that their suffering be lessened by the love that is deep in the grass that they are running through, the trees that shade them and the love that surrounds them.

Monday, August 13, 2012

Sunday at the Park

I love the Elm Grove Park - It brings me a feeling of peace and getting away when I often don't have the energy to go far.  It has been a source of feeling at home ever since I was little.  I have a post I am working on but my mind has been a bit foggy and I want it to be good - describing the importance of having and embracing your own Terabithia.  I hope everyone is as blessed to have a place where they feel safe and at peace.

"River runs through It"

Dragonfly - For my dear friend Sandy

From the Bridge

Meanwhile while I was at one park on this gorgeous Sunday -
A friend was at another park enjoying the same sense of peace.

Saturday, August 11, 2012

Pick Day of the Week

I had that title in mind when last Sunday evening - but got a bit side tracked so never wrote about it.  Our weather man - Brian Gotter always has his "pick day of the week" - I love Brian Gotter and Mark Baden on the competing channel.  Brian because he manages to somehow keep the same weather interesting when the local channel decided to start a 3:30 newscast that seems never ending - so he often gets a bit punchy!  My bff Stephanie works for the other station with Mark Baden - and he is the calm weather guy that I have often watched at 3am when i get a bit nervous about a storm - and like the mailman - these weather dudes are rain or shine - sleet or snow - and on those nights I tell Steph to thank Brian for looking wide awake and composed in the middle of the night.

Back to Sunday, the best way I can describe it is free.  Its when all the normal stuff that you take for granted doesn't feel like an enormous undertaking to get through or concentrate to make sure people don't know you don't feel well.  The "putting on a good face" isn't needed - you can just be.  And its hard to understand if you don't live with this illness, but if you do you know exactly what I am trying to articulate.  I had Steph and her kids out to the pool and we just sat on the chaise lounges - the kids swam - i jumped in and swam with i was free...

Its been a bad week since that evening - but I have it in current memory and that gives me hope.  Alive and Free -


Thank you Addison! I love getting real mail - even when you live next door - Love you your Aunt Heather!

Wednesday, August 1, 2012

Golden Girls

Thank you Tamika - for patiently waiting as we changed my blood script, who convinced me I could do four more tubes - for being really good at what you do and doing it with a smile and compassion - but thank you most for your reference to the Golden Girl's Chronic Fatigue episode...who knew....they always said that show was ground breaking and here it goes again - this is the You Tube montage of the best clips from the two part episode Sick and Tired...thank you for being a friend....time and time and back again...

Golden Girls

We are in good company once again, after two seconds of Google, found out that the episode was written because the creator of the show Sue Harris was at that time going through the web of figuring out she had chronic fatigue...Sue Harris

Unfortunately, 23 years after this episode, us patients still are dealing with the exact same issues.  Let's hope the tide is changing.

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