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

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...

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 -

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 infections....gold 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.

Sincerely,
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.

can i post this???

I am posting a link to a popular blog - she says you can't reprint anything she writes...so 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