My Shower-- Thankful Thursday

I love my home shower. It is large, walk in.. has a few seats in it. Tonight I took the longest most wonderful shower. I am anxious. I am having some difficulty breathing...I did my treatments...it is a horribly scary feeling to feel short of breath.

My heart is racing less now that I lay in my warm bed beside the love of my life with the little fluffies running around and the cutest boy asleep down the hall.

I live a life with a heart full of gratitude. I am not all better.. Dr P says my baseline will take 6 months to come back (and that's without complications.)-- I can get there.. Ask my mom, I'm stubborn as hell and incredibly impatient.

I was struck by a number of things today.. this afternoon... Ale told me that he was afraid his best buddy wasn't going to come home... he is so resilient and expressive that I never realized how much these last 2 hospital stays affected him...We're open to suggestions. He wants to visit and loves being there and flirts with Miss A and Miss M with his cute long eyelashes.. but he's still 5 and one of his parents is still ill.

I talked to my mom on the phone tonight and I was short of breath and with the most loving tone full of pause she asked me to please sit down... I thank god for my mother-- every moment.. every day.. she is my dearest friend... my trusted confidant.  I talk to her at least 6 times a day.. and sometimes that is not enough... She has been my strength..

Nitzita and I were able to openly talk about her fear.. her fright of me being sicker.. and I've been sicker and I pause and know that I spend every day and night with the love of my life...my best friend.. we laugh.. we shake our heads.. we were two fledgling souls that landed right beside one another and happened to look up at the same time... I have a life partner that I truly truly enjoy and am every day grateful for....

and so tonight, we unloaded a week's worth of Hartford Hospital bags into our freshly smelling clean home and got the boy ready for bed and read together like we do each night and as I stepped into my shower I had a moment of pause and really understood that the gift of stepping into that shower is truly what life is about.

its in the shadows

life so often for me manifests in the the less overt... in the moments that pass after those supposed to be huge significant moments... the ones that have meaning.

N came to see me at lunch today as a surprise and i realized, not for the first time, but in a significant way that I recognized her heels clicking on the floor as soon as she walked onto the unit... she possesses confidence, commands respect and climbs on my window sill in a little pink suit to get some fresh air in here... I so love her.

my mother drives 1.5 hours many times a week when I am here to sit and play cards with me... she brings me coffee and just sits...

ale tells me its less fun at home when I am here (and I am sure the neighbors and puppies would agree, though mommy might think its less rambunctious) and he means it from the bottom of his really big 5 year old heart...

this stay has been reflective as I've seemed to state a few too many times already.. but i'm really learning to see the bigger picture... the you live only once picture and the go walk off a plank infectious diseases doctor I WILL leave here when my dr P says i can....

im going to run the hartford marathon THIS year... 2011.. THIS ONE with Nitza by my side.. (if you see her don't mention that bit yet because i haven't really told her...)--- but I am me and am capable and will get better.. am getting better...

I see the hematologist tomorrow to discuss that ever elusive subject we've been arguing about for a little while.. The Bone Marrow Aspiration.... it is what it is..

I am grateful today for special nurses that stick their heads in my room just to make me smile and because they've chosen this career because they really care... I am grateful for losing at Rummy because it seems to make Gram so happy to win.. I'm grateful that i'm breathing better and can feel my lungs opening... and I'm grateful to go home to my love in a few short days and continue this healing...

The real voyage of discovery consists not in seeking new landscapes but in having new eyes. Rilke

Day 5 in the hospital again. PFT's tomorrow. We're hoping to pull some pre-med 60's.. That's the goal.
I have a lot of what everyone else with CF has when they are her.. tightness, rhonci, mucus, headaches etc.
I'm on IV steroids, Vanco and Merrem. While each of these alone causes exhaustion, the cocktail is really tiring. I took a 4 hour nap today.

This stay has been different so far to me than any other stay in that I have been given the gift of the ability to be still and reflect... on life, on what it means, on its true shortness. My life will be different if I look differently at it... I am grateful for medical insurance, the vest, PFT's, CPT, nurses, doctors, family and all the people out there who do care.

The path is before me... and I believe it in... I am focusing on not letting the little things or inconsiderable people get me down.

On Sunday I did a lot of this:

And it is all that much better with this cute boy with me.

 Today I washed my hair.. not profound to many, but profound to me when sometimes it hurts to get up.

This is what i get to see every time I turn my head to the left...

there is beauty here-- I choose to look at it.

IV Solumedrol-- Read at your own risk

So not a whole ton of improvement breathing-wise.. I understand it takes more than 3 days... I'm not the most patient.. They have added IV Solumedrol to the mix. I was on the medrol (pill form of solumedrol) for 7 days prior to this admission and it didn't do a lot of good. So, I'm cranky, weepy, super sweaty, jumpy, restless, angry, hopeless and still full of nasty mucus, still short of breath and pretty downright temper-tantrumy.

I want to be better. I want to lace up my running shoes (literally) and just run. Not staying within a 2 mile radius of my house "just in case." I'm sick of paper masks and being bound to my kitchen. Don't get me wrong... I love my kitchen and the warmth of my home, but there is a whole wide world out there that I just want to take by the bootstraps and live...

I talked to my Tom tonight and he was joking around with me about the annual family easter egg hunt that he might give me a few clues about where the eggs were hidden (to digress-- even if ST told me, my sister Erin will take anyone in her path down for those eggs... so ... )-- but it got me to thinking... We have this one shot... this one life.... I just can't do it this way....

I want my baseline back.. I want running back 30 miles a week (ill take 50% of my peak), I want to read a FULL book to Alejandro at bed time and not have him ask me when my regular voice will be back.. you know, the one that doesn't run out of breath mid way through The Lorax....

Tonight Ale (he's 5) asked me why I am in the hospital so much. He knows I have CF. He knows I have mucus. He knows I'm sick. We re-explained to him all of those way too sordid details for a 5 year old to have to know... I told him that if he wanted to stay at home all day tomorrow (Sunday) with Mama (nitza) he could so that he could play with his lego table at home not the lego table we rigged up here and play with puppies and do those kind of things and he said, "No Tari (he calls me tari... Kind of like tara and mommy mixed) i want to be where you are." SLAM... I felt something really big in that moment... he's five and he understand more of life than I do at times... except when he is putting darth vader's light sabers into my mother's nose or mouth or ears.. (sorry mom.)

Wow, I'm all over the place but I guess I'll keep going... back to the life is short thing... I am not fulfilled entirely.. let me explain that..I am utterly head over heels in love with N... I would give my life for ale ... I have the greatest mother and tom and siblings ever...it's the other parts... there is a profound emptiness... and it could just be because I want to be better.. or normal--

so i'm sad and im lonely and Im drenched with solumedrol sweats and i want to go home and I want to get better... and the whining will cease now.

Family Friday

I'm very fortunate. As I sit here at 4:20pm Eastern Time I am as excited as I possibly be to see my family. A and N will make their appearance in the next 1.5 hours or so...They light up my life.

She has worked a long day after a long night alone at home with a 5 year old boy and 2 dog, but she comes and she doesn't complain and she really wants to be here near me

and this boy will bombard his way into this room with such joy to look out the windows at the city that looks just like "Christmas"when it is lit up in early evening.

He'll most probably tell me about a magnificent lego creation and who brought what for show and tell at school today.. the letter was "Q"

I love them with my entire being. This weekend we are going to watch Misty Island Rescue (a Thomas movie)-- and my mom is coming to see me tomorrow and I am so lucky to have a mom that is my closest friend...

*********

I have a PFT of 51%. I have never had a PFT that low. It scares me, but what scares me more is that I am doing all the right things.  Today I started solumedrol. We'll see where that brings the PFT's... 

I am also dedicated to using this time to assessing my own happiness... am I where I want to be (not family and personal life wise) in all aspects of my life. What can I do differently... what do i want to do differently... where do I go from here... 

Until the next update folks... Thank you for reading. 

Back In the Hospital

I was re-admitted to Hartford Hospital today. I say re-admitted because I left here 32 days ago. Dr P-- my super fantastic Cf Doc was here to meet me along with his PA S. I'm in good hands and am confident that things will look up from here. I'm on 2 liters of O2 which has given me pink cheeks!! N and A brought me, played legos and had dinner... I am so fortunate for my family. They took a lot of blood and are testing a number of things... more to come. Today, this evening, now... I feel hope.

Thankful Thursday

I'm struggling. I'm on day 7 of medrol, cipro and minocycline. I woke up this morning coughing and puking. When is enough enough?

Admitted to Hartford hospital for the 2nd time in a month

Pray that I leave better

Tara


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Wordless Wednesday

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I Outrun CF- My Story.

Today is my 36th birthday.
Today I decided to check on the median age of survival of a person with CF.

The info below is directly from the cff.org

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the mid-30s.

I was diagnosed with CF on 9/1/2009.  I was 34.  My brother was diagnosed with CF on 9/19/1980 at the age of 14 weeks. 

What does this have to do with anything you ask?   It has everything to do with everything..  I was an elite runner. I ran 3:15 marathons. Won Olympic distance triathlon's, sprints and placed really well in 1/2 Ironman Distance triathlons... I played soccer from the age of 5 or 6 and played sports all year round. I became a runner 15 years ago or so and fell in love with it. I had chronic lung infections, upward of 5 a year. I had chronic sinusitis and a few surgeries to clear out the sinuses. 

I kept running.

In 2005, while training for Ironman Wisconsin I was clipped by a car on a training bike ride. My front brake punctured the structure of my right kidney.  I had 18 surgical procedures and eventually lost the kidney. You ask, what does this have to do with CF... I tell you-- Everything. For the first time in my life I was inactive. Between surgeries I'd get up to run again, only  to be sidelined from another surgery. After each procedure I got a lung infection. I had my kidney removed in November of 2008. I had 11 bacterial lung infections in the 9 months that followed. My nephrologist's partner sent me to a pulmonologist.

I saw Dr.C.  He asked me a lot of routine questions.. Do you smoke? NO.. Drink. Occasionally... etc etc. He went on to ask if anyone in my family had CF.. I thought it an out of the blue kind of odd question and old him my brother did, but I was CERTAIN I did not have it. He nodded his head and ordered a sweat test and labs. 

I went to UCONN for a sweat test and wrote it off as another routine test I'd have to go through after all this time and really-- I was so sick of doctors with the kidney charades... I walked out of UCONN, talked to N and my mom and said wondered what they'd do next when the CF test came back negative.

On 9/1/2009 Dr C called me and asked me to come to his office for a quick visit. I thought nothing of it. (DENIAL) I mentioned to N that Dr C called and she asked if I wanted her to come with me... I said no, she had meetings and I was sure it would be a quick visit to discuss my sputum or something.

I walked in and they were a lot nicer to me than they had been.. maybe nicer is not the right term.. they are and were always nice.. but perhaps more attentive.. did I want water or coffee... Dr C came in with 2 nurses and a pile of results. 

"I'm very sorry to tell you Tara that your Sweat Test was positive for CF, confirmed by your Ambry Genetics blood work." 

Stomach drops.. WHAT??? 

I can't have CF. Michael has CF. I do not have CF... but I do have CF.

Dr C brought Dr P (my current CF doc and ultra amazing best ever pulmonologist) in to meet me. They would start following me in the clinic and he would be my primary doc.

He went on to tell me that his theory on my specific late diagnosis is that I had spent 29 years doing my own CPT. At my peak (of at least  years) I was running 60+ miles a week. He told me that I was clearing my own lungs and that when I got in the accident all the mucus settled and I became more symptomatic.

Here we are, the 4 of us. I am the tall one with the white hat. I have CF.

I kept myself alive and healthy by outrunning cf every day. I keep myself alive and struggling to stay healthy by outrunning cf.

Every day I step on my treadmill. Yesterday was no different.

Yesterday I outran CF. N and I outran CF. We did our three miles (mine walk/run)... but it wasn't that moment (though I specifically logged my CF mileage yesterday morning for I Outrun CF)  that I realized what outrunning CF was truly about.

It was this one:

My beautiful sister and beautiful boy outrunning CF with laughter on my mother's front lawn.

It was this one:

Because I outrun CF, I can sit and enjoy my family.

And because I outrun CF, I can blow out birthday candles

with the help of this guy:

and I wake every morning to them:

and these folks

and I am blessed...and I have CF... and I outrun cf each day... which gives me another.

Methylprednisolone Mornings

I've been awake for an hour. I went to bed 3 hours before that. To what do I owe the delights of such sleep you ask, a methylprednisolone burst.

9 days. I am on day 2.5. There are ants running under my skin....

I'm not normally a very willing steroid taker... I resist. I do what's best in the end, but I'll admit that I resist along the way...however, when I talked to my favorite dr p on Friday after the appointment with the immunologist and he said that we are doing a medrol burst (at least its oral as opposed to IV solumedrol)-- I said when do we start-- he paused... for more than a beat...

resistance is futile.

my pft's are in the tank.  stairs are beginning to be slightly more daunting... and i want to avoid a re-admission at all costs... so we're taking the ride... and though I'm not thrilled to be on it, I have the at-least-the-steroids-will-reduce-all-inflammation attitude.... which is good stuff...

in other news...
today, sunday, which is different than 4 hours ago, which was still saturday.... our trio (plus puppies) is headed an hour north to my mom's for the day. It's the infamous Holyoke, MA St. Patrick's Day weekend celebration (and my birthday tomorrow)--- so i will see my sister and her partner, my other sister, my brother in law (also has a birthday) and my nephew (another birthday)---- A will get to bask in the glory of my mom and Tom, who is adores and who equally adore him and we'll laugh... and the world knows that we all need that bottom of the belly rising up over the top kind of laughter sometimes to really just make it all okay...

I'll be eating carrot cake.. (it was my birthday request.. and yeah I'm turning 36, but I still like to have a cake)---

I picked up Franny and Zooey for old times sake yesterday.. and I'm happy I did.. thanks JD

I haven't been at it that long

I read a lot of CF blogs, people closer to my age and blogs that mommy's and daddy's write for their littles. I love these blogs.. parents who follow strictly regimented schedules to get multiple vest treatments in, nebs nebs and more nebs... pills multiple times a day... It's tough... and I still have not quite acclimated to this schedule... I forget to do nebs... and I hate the vest.

With the sudden drop in lung function, I committed to doing the nebs, consistently... and I have followed through thus far. I committed to changing my diet. I have entirely followed the recommendation of the cardiologist and CF team.

Today I went for a follow up PFT. I was emailing with my doc yesterday and said, I'm really not concerned about the PFT. It may not have gone up very much, but it DEFINITELY did not go down... and down it went 5% for my FEV1 to my lowest PFT ever and my small airways dropped about 30%.

I'm pale with grayish lips and a drive to get better... what does that mean, you might wonder... the hell if I know.  I did my regular exercise tonight, with struggling, but I completed it... i ate my high protein dinner...

I'm waiting to hear if we're doing home IV's or back in the hospital... More to come.

a photobooth saturday and working the lungs

I woke up just before four this morning struggling a little bit with my cough and the morning headache hit early today..

The pups and I spent three hours downstairs before N and A woke. It was reflective and good actually. Sometimes I just let silence hold me with no expectation.. no give, no take...just the slight reverberation of silence on my soul... which really needed it.

A came down first... he always comes down first and we played a little photobooth...

A little uncertain

Having a lot of fun

Look at my Lego Guy

Funny Faces

Kissy

Silly

Monkey

Love

Best Buddies

Where do i look?

He Told me I look like "james goes buzz buzz"

Beautiful Boy

Still a little sleepy

5 Year old A

Raspberries

7 am family Picture

and again

Today was good. I exercised, and struggled, but followed through. The puppies are home from the puppy tylenol scare so there is pure pandemonium throughout.. and their little noises make me so happy.

A and I washed and cleaned the inside of both cars, because we promised we would and we are really the root cause of the mess.

We got N her new (#5857676) dining room rug.

We played in the back yard (T ball) for a little while and interspersed in that I rested, did treatments, A played with legos and N rushed around cleaning and getting the patio furniture ready -- I know, it's early... but she's happy...

So despite my lingering infection, cough and back pain when I breathe... it was a a simple and perfect day... A said, "One of my best stay at home days ever." (That's what he calls weekends)

So I am full of a lovely god, a lovely boy, a lovely spouse, a lovely home and a hope (thank your Sara Dun for pointing that out)--- and I am going to hold on to those things and the rest always falls into place.

happy photobooth saturday morning

69%- Unnatural Progression

One of my favorite songs is Unnatural Progression, by Dan Mangan. You can listen to it here.
It was played in the documentary 65 Red Roses about the life of Eva Markvoort.  It's poignant... it's about CF... it's about MY CF.

I was admitted to Hartford Hospital on 2/14/2011 with an FEV1 of 65% and an FEF25-75 of 50. On the 7th day, my FEV1 went to 77% and my FEF 25-75 went to 55. I was discharged on IV abx three days later.    Oh one detail.. I essentially don't have an immune system. I receive IVIG replacement therapy every three weeks to boost it... so I was feel better, getting on the treadmill, doing what I am supposed to do and went in today for a follow up.

BAM
FEV1 69% and FEF 25-75 50.   OK.. SO WTF?  Needless to say the doctor was concerned.  Sooo I am going to do Lidocaine nebs for a week 3x/day and see if the cough stops the reactive airway stuff but while running the risk of the staph of the sinuses to take up residence again in my little lungs... I go in 7 days for another PFT.. if no improvement back in.

Im frustrated... I want to feel energized and not like I want to sleep all the time.. I want to be able to not be terrified of public places, airplanes, other countries for the germs they hold.

I will leave you with the lyrics:

Was a soldier coming home
Was to bring my body back 
Wasn't sure about the darkness 
Heart was rambling on like any day 
Just like any day

If I was to write,
I don't mind, I don't mind
I might forget about it 
Though my day has come it's already gone 
Some would say it came too soon. 

Was a light bulb burning out. 
Waiting for my mother's touch. 
She wasn't there amid the thunder, 
I'll remember how it used to be. 
How it used to be. 

If I was to write, 
I don't mind, I might forget about it. 
Though my day has come it's already gone. 
I just need to get home. 

Was it something I said? 
Was it something I said, oh lord?

Miscellaneous Ramblings Monday

I'm tired. I seem to say that a lot. I'm also frightened. I don't often say that. When I have gotten sick over the last bunch of years I have bounced back... since this hospitalization I have realized that it takes me longer and longer to bounce back... this time is the most difficult... I'm just not there. I left the hospital with PFT's in the high seventies and my back is beginning to hurt again when I breathe... the shortness of breath is coming back... I'm almost panicky, but that certainly doesn't help.

I have found myself reflecting upon my purpose and use in life. I am educated. I have a decent job. I had a great job that I lost 6 months ago due to illness. I'm changing...or I don't really know what's happening... but I just know that I'm scared...

another thursday to be thankful

I have struggled since I was discharged from the hospital. I haven't bounced back like I normally do and that scares me. I have also caught a cold, which is in my sinuses, which is icky...

But you know, despite hospitalizations, chronic sinus infections, and being relegated to the 4 walls of my home---I am grateful and truly happy.

My mom and step tom drove an hour south to visit us this past weekend and I was thrilled. I am working from home until 3/28/2011 and am settling into that--- I'm much more a people person in terms of wanting to be in the office, but am staying connected. I see a sinus specialist tomorrow to hopefully make steps forward in the alleviation of the root cause of these frontal sinus headaches...

I wake up every morning to my best friend-- who I will spend my life with.... I drink a cup (or three) of coffee, eat breakfast with the cutest 5 year old on the planet, while he pontificates the complexities of his world-- Such as if hen should be a fireman, a policeman or a rescue worker when he grows up, bring the cutest boy to school and then start my workday (after nebs)

I work at my kitchen table and then pick up the cutest boy in the world and we busy ourselves with legos, reading, cooking or exercising until mama comes home from work. We eat as a family (though not the same cuisine) and each speak about what we are grateful for.

We then take baths and read stories-- after that my n and I spend a few hours reading then nebs then bed--- what's bett