Missing Pieces and Not a good looker

I fell prey to yet another piece of workout equipment. It is the IRONMAN workout. It's a pull up bar looking thing that you hang on  your door frame and do pull ups, abs etc and you can take it down in "just seconds" to do triceps dips, abs and pushups.

Anyway..

That's not the point of the story... It came with 4 bolt things to put it together.. yes.. only 4. I had to take it apart 3 times and vowed that there was "definitely a pieces missing." If you ask N. this is is not an uncommon expression... as matter of fact I was thinking it yesterday.

A and my mom were making a 100 piece dinosaur puzzle after sledding. My mom couldn't find an edge piece so I thought, "there must be a piece missing."

The day before that A and I were making a LegoCity Airplane and I couldn't find a few pieces and I called to N that this set, like his other 868609 lego sets came with missing pieces... she kind of just looks at me funny now and walks away...

There is truly no point in this blog entry... I'm not a good looker... and A tells me I am, and that's wonderful.. but he's 5.

I think all of this goes back to my lack of mindfulness... at any rate I fell prey to the IRONMAN pull up bar. It works great after you put it together.

Being Known

I like what Ronnie and Mandi have done with Thursdays... it gives me no excuse not to sit back and be grateful...Thanks guys...

I am grateful for words... they are oftentimes my only vehicle out of me-- my facial expressions tend to me, "Hey yeah, things are fantastic!!" .. but when the house quiets and the little boy sleeps and the dog submits to a turquoise pillow on a cozy chair across the room, I talk.

I've always been the phoenix... rising up from that proverbial ash...the survivor... the surpasser... the "life can hand her anything and she will take it and run" kind of girl...  but honestly, sometimes it's too hard to carry it, so I talk.

I turn to N and she sees it... and she doesn't say anything, but she looks at me-- she lets the silence beat past until I start talking... and she listens..  and sometimes she tries to fix it... sometimes she doesn't... she doesn't need to, but she loves me.

I am thankful for for N... for her truly unconditional love and support, for her honesty and boy is she honest. I am grateful for the little 5 year old boy with his new haircut that makes him look like an 8 year old boy, but I swear he's still 5!!

 I am grateful for my mother... who I can call one of my best friends... after years of trials---we've come out on top. I'm grateful for Tom... the only father I have known...whose intelligence and heart continue to warm us, (my trio) who he loves so dearly...

I'm grateful for E-- by beautiful sister who can laugh hard and mean it... after life had given her some tough stuff...

I'm grateful for K and N and little baby (he's almost 2) O.... I mean cute.. baby O is off the charts and his life is full of the things that mean something... raising chickens to provide eggs, working with his daddy, singing with his mommy...


I'm grateful to Mami L and Papi C... they have souls and hearts that I swear to you god put there himself...

and I'm grateful for Bella... my 8 month old Yorkie that keeps me going... and going and going and going...

I have people... close people.. people that recognize the tones of my voice and the pentameter of my speech...

It's amazing to be known.

Liquid Laptops

Im clumsy... or some would say, "not mindful"--Either of those might be true.

I am working from home today and I spilled 8oz of water on my work laptop.

A month ago I spilled a Venti Skinny Vanilla Latte on my Macbook.

A year ago I spilled a bottle of gatorade on my partners Macbook.

(I really could go on, but you folks get the picture.)--
The irony.. it's water. Its' coffee. No adult beverages involved.

I got to thinking (again, because these spill incidents give me plenty of opportunity to think) about the mindfulness piece.. not necessarily just about spilling.. that just happens to be one of my larger offenses right now.. but entire mindfulness.

I'm not mindful. I run and throw up in a garbage I have set up beside my treadmill. I believe that a mindful person might have great pause and think, "I am very nauseous today-- I will walk."  Nope Not me, though because I am not a mindful person I'm not sure exactly how that would all pan out.

As Yoda would say, "Do or do not, there is no such thing as try.", so while in the past I have tried to be mindful.. you know, waiting less than a month to be tested for CDiff after 10x day bouts with Diarrhea ... but I guess trying doesn't cut it so much with mindfulness... may be I just have to take the plunge and slow down...

My two speeds are awake and asleep.. and whilst awake I do most things at 150 mph and whilst asleep I cannot be woken... So mindfulness.. I will report back.. I'll give it some time.. see what happens.. Better for the bank account, that's for sure..

I've been running.. 12+ miles this week... I'm also feeling really happy and good about it.. not helping my belly problems, but quieting my mind and getting up a TON of mucous.

All in all a waterlogged laptop isn't great.. but I'm here and that counts.

Instructions For Living a Life

Happy 32nd birthday to my littlest blonde sister E.  You live a life I admire. You feel.  You laugh. You inspire. You pay attention. You give. 


I was 4 when you were born and I recall a time not so long after that that I realized I liked you... You talked an awful lot as a little person and you were always willing to play pretend games with barbies and GI Joes... to build forts with blankets all over the living room... and to play in the snow for hours on end.


Today I celebrate the day that you were born, 32 years ago.
Today I am honored not only to call you my sister, but my friend.
I love you.
Tara




"Instructions for living a life.
Pay attention.
Be astonished.
Tell about it."
— Mary Oliver

Truth Be Told

I often find that when I write I find myself leaning into the tendency to write about what is pretty, or nice or polite... not that any of that is necessarily untrue but that the I leave off the harder, harsher darker truths of what balance out this life... and then I find myself wondering.. do you want to share all of that in an online forum.. but then I reflect and realize that I only write the pretty, nice and polite on anonymous pieces of paper that only i can see... so then I go on to acknowledge briefly that I'm not so good with truth.

*******************

I was diagnosed with Cystic Fibrosis on 9/1/2009. It really shocked me, but not anyone around me. I was given my genetic mutation, a regimen of treatments, bottles of enzymes (which I am no longer on.. long story), inhalers (of which I already had a collection at home) and orders for blood work, x-rays etc. When Dr. P spoke to me he told me that I had Cystic Fibrosis, and that it was mild.  He said I was fortunate, but that we (my partner and I) should not wait 10 years to climb Macu Pichu after we asked about it. This disease can take a turn on a dime...

I walked away from that conversation with the word mild stuck in my head... eh, I'm mild, I'm a lucky one.. I have been on IV anti-biotics for 75% of the time from 9/1/2009 until today. I have had my gallbladder removed because it was hardened and full of mucous. I have had 2 sinus surgeries and been diagnosed with gastroparesis.. me and my mild CF...but recently I had a moment of clarity... key word here folks, moment... moment.

I went to the neurologist to assess my headaches which are because my trygeminal (sp?) nerve in my head and face is disturbed due to chronic bacterial sinusitis and inflammation that I have sinus headaches almost all the time.. at any rate that is not the entire point of the story. She says to me, "So, you have cystic fibrosis?"-- I reply, "I have mild cystic fibrosis."

PAUSE

She laughed. She laughed out loud. She said, "Tara, I am sorry but you either have Cystic Fibrosis or you do not."

SLAM

Ok. She's a good doctor. I have Cystic Fibrosis. I like to pretend in my 35 year old fairy tale mind that I don't and that my chronic infections, mucous spewing, sinus bacteria are either coincidental or due to my immunological deficiency...

My partner also has taken to laughing... She says, "Tara, you have CF.. this is normal."

Truth be told. 

I have Cystic Fibrosis. 

I have Cystic Fibrosis... and it scares me sometimes.

The Wonders of Sleep

I did run/walk yesterday morning... my three miles... slower than the days prior, but somehow that fact is ok filed back in my mind somewhere. I did it. At 5am I was on the treadmill.

Last night I slept 11 hours. This morning I am sane... yesterday, not so much.

The snow, again, blankets New England and I look out my window and see the large fluffy flakes.. I admit... it is truly beautiful... and then I wonder why do I live in New England? I am not a huge fan of the cold and am a very very large fan of super hot sunny places... and then I look around and see the little boy and the little dog and my N. and know that for now this is where we are... this is where we'll be.. so the beauty of the fireplace holds more gusto when the snow falls...

So while this is where we want to be

This is where we are

And we're all happy.

Thirty eight:thirty eight

Last night, or I guess by now its the night before I jogged/walked 3 miles in 38:38. I felt like a rock star, despite having run at 3:17 marathon less than five years ago. It didn't matter that I was walking every other minute, or that when I jogged my breathing labored. I felt like a zebra in the African brush... running wild and free-- though much slower and much less beautiful.  In those thirty eight minutes and thirty eight seconds I vowed to commit to daily run/walks again... to build back up to something. To not let life get in the way of me feeling that good...

I have been awake since 2:13am. My stomach has been a raucous mess for 3 weeks now, since beginning IV Merrem. I'm off the Merrem and it hasn't let up. When I went to bed last night I thought, tomorrow morning 5am right before work get a nice run in and I sit here now at 4:43 and wondering how I can do it... every inch of my skin hurts with exhaustion... I have 7 sores on my lower lip...my throat feels like someone lit a flame to it.

Bella is asleep next to me... her little furry body is lifting and falling as she breathes her little puppy breaths. A is asleep on my side of the bed...

Life gets in the way... sleepless nights and cf gunk... little boys that just won't clean up the toys at school so it takes an extra 45 minutes just to get home at night... spouses that have to make just one stop on the way home... days stretch into days and life happens... the suits need to be cleaned and the laundry folded... the garbage and recycling out and groceries bought... puppies walked and sinus rinses done... rush hour traffic and flat tires... missed deadlines and lost mail keys...

I'm grateful amongst it all... to have a partner I really am in love with... a little boy that brightens my days who doesn't always want to clean up the toys at school and a puppy that needs to go potty at 3:30 am in 19 degree temperatures...I am enveloped in the warmth and love of a family...

Neurowhatdoyoucallit?

Tomorrow I go to see a neurologist that came highly recommended by both my Cf doc and ent.

They both think invade either a trisomething or other facial nerve thing or a fungal infection way up in the sinuses.

I have been having severe facial around the nose and eyes headache constantly for 6 months---

I'm scared but anxious for relief.

I walked 2 miles tonight because I can't run while port accessed and I am at my first photo club meeting--

Stay tuned


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In Love

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Back to the Grind

Heading back to the office today after 10 days off. I'm a little concerned with being sick, but am sure it will be great. I'd rather be there than not.  We're all adaptable creatures. Yesterday I spent time with my 2011 goals: Health, Financial, Family, Emotional/Spiritual.. it feels good to see it laminated and in front of me. Health is big for me this year. I was a very successful runner... I am a runner, but not competitive and I am happy with that. My bucket list has another sub 20 minute 5k on it-- This year I want to run 4-6x a week and incorporate lifting. We have a gym in the basement so there is no issue with regard to resources... When I say run 4-6x/week I mean get on the treadmill and if running isn't panning out with health stuff.. walk the 3 miles... commit to it and do it. I'm trying to figure out if it is motivation or sickness... When I am feeling good, I can run every day.. but when I feel like this it hurts to hold a cup of coffee for too long or my arms starts burning...

I will move forward.

2011--- GO.

We are in the 2nd day of the year 2011. I have slept past noon on both days due to illness. I will most probably start IV abx tomorrow. My facebook friend Jamie is in the hospital and could surely use prayers. Little A turned 5 yesterday and we had cake for after breakfast.. he loved that.
Its been a really mellow sort of few days that I have really needed and truly enjoyed with my love, N.
Work rings tomorrow... and that is fine...I will plow through. Until that time thought.. we are going to whole foods to get delicious food for the week and organizing a part of the garage if I can do that...
I like this laid back relaxing way the last few days... I love my life and I am truly grateful.
Over and out on a feverish kind of day.
-Tara