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Monday, May 30, 2011

Being Forthright & Too much Hospital

So it's been 11 days since I posted a blog update and most of that is due to the fact that I've been pretty sick and I often hide when I'm scared to death or fear that vulnerability that is really too uncomfortable to feel.

The medical:
I was in the hospital a week ( after already being in 5 weeks this year)... I had a tooth abscess that had apparently been there a long time and showed up on x-rays and was substantial enough to need to remove asap. I guess when you are immunocompromised and you have an active infection for a long time, the goal is to get it out. So i had oral surgery (6 stitches) and then a few days later another oral surgery to re-clean the bone (osteomylitis) and remove debris etc. They promised me that I'd be fine on oral anti-biotics. I'm not going to argue with Infectious diseases so we left on oral antibiotics. I went to the hospital that Friday for an IVIG infusion (6 hours) and a CT scan of my mouth. It showed cellulitis and more abscess. On Monday (7 days ago) I had a third oral surgery and the cleaning of that bone and sent home on pain meds with IV antibiotics to begin for a month. My home nurse came and we did the run through of Dorepenem (I am fine with merepenem) -- She did the infusion and stayed because it was my first time on dorepenem. The infusion ended at 9pm and I woke up projectile vomiting at 1130pm-7pm the next day, but I am lucky to have the best nurse in the world, so she came back at 730 Tuesday morning and talked to my doc. We soon understood I was very sick and needed admission. I had a bed at 330.
Nitza came with me and really took the bull by the horns there because I hadn't peed and had no tears etc from the dehydration. It was determined that my liver enzymes ALT (was 3700 (normal is 50) and my ALT was 2500 (normal is also 50)-- They got me on Zofran, pain meds (mouth) and 8lbs of fluid gain.
Good news is sed rate and enzymes have trended down down down. The ALT is 975 right now, buy I am home.  The Sed rate and pancreatic enzymes are also down... but this was the toughest hospitalization yet. They are attributing the liver enzymes to "sludge" and dehydration.

I am feeling extremely isolated. I really just want normalcy back.. running, working, liver functions near 50 etc. I feel sad and have been having panic attacks and insomnia... I guess this is a call for friends...

I'm hoping to get back to work by the beginning of July.. fingers crossed. I haven't even heard from anyone from my job and I email them regularly. It makes me sad... let's face it, everything is making me sad.

Life on the homefront is amazing. I am so lucky to have Nitza and Ale and my mom and a few friends have really stuck by me...they know who they are and I love them with my whole heart.

I go Tuesday and the following Monday for liver tests and doctor visits. I'm dreading this week a lot. Nitza will be at work all week, which is our normal... but I'm especially clingy.

I cannot wait for her parents to come on June 11, 2011... I will have company and I love them so much!!! It will be great.

I have a TON of positive things in my life... I know this is the pity train... I have a beautiful home, a beautiful spouse, who is also my best friend and someone who would do anything for me,  a lovely kiddo, 2 ridiculously troublemaking dogs, a garden and my health.. My lungs are AMAZING.. and I am really grateful for that... I'm scared about the rest, but doing what's best.

More to come this week. My little sister Erin's RN pinning is tomorrow and I am so thrilled.... I plan to get back to running this week.. but I'm going to run because Nitza does have today off and I want to be with her!!

Thursday, May 19, 2011

the "e" key & and a thankful thursday

It started yesterday. my the's were th's and e was conspicuously absent from every word I typed... and you've probably gotten by now that I am a talker so that's a whole lot of e's. As a matter of fact,

The following information has been retrieved from

The most commonly used letter in the English language is the letter “e”. This is the case in the general language, in fiction and non-fiction writings, journalism, religious works like the Bible, and even in Morse code.

With “e” being so common in the English language, one would think that it would start the most words. Actually “t” begins the most words, followed by “o.” “E” is the letter which most commonly occurs third in a word, and is the third most common second letter in a word. The most common second letter in a word in the English language is h.

Actually, “e” is far down the list of English language word beginners, and comes in at the 15th place. The five most common letters beginning words are “t,” “o,” “a,” “w,” and “b.”

I miss my macbook. We are very attached. This whole macbook in the shop thing got me to think about how much I value routine and things that belong to me. I am on nitza's macbook air and all the favorites are hers, naturally because its her laptop, and I miss my favorites... all those kind of odd things.

At any rate, I'm thankful for my Macbook and that the apple store was happy I was forthright a about the incident of Ale and the Gatorade that they will try to fix my keyboard for free. No liquid got inside because I flipped it pretty darn quick.  I'm grateful for Nitza who knows me... like really really knows me  which includes the great things, the annoying things and the downright secret things I don't share... she is amazing to me and since we've been together I've never gone a day without feeling loved... or a moment for that matter... she may have put it on hold a few times when I have come home with Ale and great ideas that are really really noisy and she has a headache, but those are fewer and further between.
I'm so grateful and proud of my sister Erin who completed her last nursing school exam and she needs to be pinned and pass the boards and RN world you will welcome another wonderful loving giving nurse. I'm grateful that nitza's parents Dona Lydia and Don Carlos will be coming to visit us the second week of June... YEAH!!! I am grateful for my mom.. who I call a lot of times each day, and she answers a lot of times each day, and she talks to me a lot of times each day.--- I am grateful for S.Tom. If I were every destined for a dad, he is it. He got 4 kids when he married my mom a lot of years ago and we each have a ton of baggage and he loves us for who we are and I'm not sure he even knows we're not his blood children (shhh don't want to upset him!!)

I guess what I am getting at "e" key and all, is that I am incredibly blessed with new friends (DMM) and Old friends (KJ and HJ)... and I have an amazing family and an amazing community and the most precious nuclear family and 2 fluffy doggies. What's better?
Not going to oral surgery today.. that's not better, but I have insurance and hell if they already went into the bone twice and need to again today, what's a third time right?

Pics will commence when I get my laptop back :(

Happy Thankful Thursday All... 

Tuesday, May 17, 2011

my mom by any other name...

... well just isn't my mom! 

This is my I envision her when I close my eyes and conjure up the image.

Life is funny and we all have crosses to carry and battles to fight... let's just say my mom's has been heavier and harder. I will not tell her story. It is hers, but I will say that she's come through battle scars and all, a more beautiful person than words would give credence.

My mom is hilarious... I talk to her multiple times a day... one of us will think of something funny that happened to tell the other. I call her every morning before nine to check in and I call her every night to check out. Many days we talk a number of times in between. My mother is the most beautiful, strong, resilient, caring, giving person I know.

When I am in the hospital she comes every other day with flavor blasted gold fish, an orange plant or flower (orange is my favorite color) and we play Rummy. She lets me keep drug induces inaccurate score (well until this last time when I won by 400 points.) 

She listens as I cry, and doesn't try to fix it. She lets me be me. She listens as I laugh and she laughs with me. She loves Nitza like she is her own daughter and treats Alejandro like the little royalty he is. She is amazing.

Ale is teach my mother how to play Angry Birds.

She loves my sisters and brother, brother-in-law and her glory and pride "baby Oscar" (her grandson) with the abundance of her heart. 

"Baby Oscar" and his "Gamma"

We don't get to choose our family, but every day I thank the God who holds me that this is who I got for a mother.  She is spectacular and I want to thank her (obviously very publicly) for her generosity, time, heart, tears, laughter, wisdom, persistence and unabashed love.


Thank you for all you do and who you are.

Sunday, May 15, 2011

"In your soul are infinitely precious things that cannot be taken from you.” Oscar WIlde

I  am  home. 

(The balloon says welcome home and the photo is blurry because I used my iPhone and had 2 dogs wrapping themselves around my knees)

I was discharged 3 days ago from Hartford Hospital. I feel good. I will be going back weekly to see oral surgery and that's good because the tooth behind the one they extracted has stopped being tolerable to cold and hot... more to come on that as it unfolds itself. I feel a peace in my heart that I know I haven't felt for a while.. in the sense that I've been sidetracked by the pain in my body. I am carrying a 101 fever today, but I'll give the tooth credit for that.

It feels good to feel this peace. On Thursday after I was released, Ale had his reading session with Ms. C. He's not lacking in reading, he's 5 and is frustrated because he wants to sit and read a book. He adores her. He wants her to live with us and it is so beautiful to be nearby and listen to her, so tuned in with him and he, so entranced by what she is teaching him.

On Friday I got my hair cut, which is one of my favorite things to do and it was many months overdue and the gray's were popping:
(sorry about the zombie eyes)--

I also met with a friend for coffee, who is new in the sense of longevity, but seriously I feel like we are long lost siblings who've known each other for so long... we talked and laughed and made plans for upcoming day... Friends are amazing gift.

Friday night we went out to dinner at Wood N Tap and watched "No Strings Attached", which was so adorable. It was light hearted and I love Natalie Portman and well, as in Tara's Way To Watch A Movie, I fell asleep in the last 15 minutes.. I either fall asleep in the first 15 or the last 15 so in this case.. big shout out to the producers for keeping me awake..

Saturday was an amazing day-- In the first hour of my day, in true Tara style, I annoyed the heck out of Nitza by not walking the dogs, being lazy and just letting them out back and being lazier and not cleaning up the #2 the left and for sending them upstairs without feeding them so they bothered her until she got up and fed them... so after I rightfully owned my laziness we moved on to

We headed out for veggies to plant, more mulch, topsoil, wood to finish a project and I found 16 dollars on  Starbucks gift card---- SCORE!

The weather was amazing in our little area of the world so we had a great time:

Nitza mulched the front of our house. 

I finished building this garden box for Nitza so she could have ample planting room and here she is in all her happiness planting away.

Nitza in the evening (though not last) with Bella and Lola in her arms... I am so happy.


I fell a fullness of love in my heart. I am incredibly grateful to wake in my beautiful home with my beautiful family, 2 scruffy little dog included. This is what life's about. This is why I'm happy.

Wednesday, May 11, 2011

you don't always get what you want. you get what you need

Another day another day. I am still in the hospital with no official discharge date. It is likely to be tomorrow, but we'll see how it goes.  I was upset yesterday. I ranted and raved and cried and pretty much had a big ole temper tantrum. Today I read, rested, facebooked, texted, wrote some and behaved liked the 36 year old adult that I am. Much needed for all those around me and even those not around me.


At any rate, usually each day there is something, be it lyrics to a song, a look from a person, something I witness, a comment from a friend that opens my eyes and today, dear Ronnie made a comment on one of my facebook posts that said  with regard to my lack of discharge "I know it stinks, but if you are not getting discharged, you need to be there. If you need to be there, you need to be there :)"

HELLO-- and that was it. He is right and it made a ton of sense and then I paused and asked God to help me with the battle of letting go of my will.  It's his, but sometimes (well a lot of times) I take mine back.

I have had a very relaxing afternoon -- I am okay and exactly where I need to be at this moment in time... and that's ok because it is what is supposed to be.

I'm looking forward to running a lot when I get home and getting back into my real groove and putting a marathon schedule together for the hartford marathon that will take place in October, and spending time with my family and friends, going to church, playing with puppies and loving my Nitza and Ale and Mom and Tom. I am very fortunate and grateful, though slightly stir crazy... but that's really okay.

Happier today... 

Tuesday, May 10, 2011

need to keep it in sight

I think its sufficient to say that today wasn't a great day. As I get on in weeks in here I start to get crazy... add solumedrol to the mix and crazy turns to almost rabid...its so hard to be grateful in those moments that i want to wring someones neck... and i'm not violent... i just cry, which I also did for most of today-- thank you solumendrol and dr p taking a vacation day. i need to keep sight of my heart and my path..

i will briefly digress... there is an initiative going on here called "continuity of care"-- what they are hoping for is that the cf patients get more comfortable with the other docs, PA's and APRN's so that when their primary pulmonologist is on vacation, the patient will still not be rounded by the hospitalists but by the other MD's in the office-- Given I am really gung-ho on lean process- I was entirely on board with this, until........................

it was my turn.

I came in here pretty sick. My stomach was awful. My lungs were a mess and I had 2 years of a tooth abscess in my mouth that I had no idea was there that had eaten away at the jaw bone, otherwise known as osteomylitis. 

I had 2 oral surgeries, 1 endoscopy and what feels like a million therapies... all that being said, we found a routine that worked for me NOW... not necessarily in 5 weeks but now when it was needed and working... so............

My dear Dr P had a vacation day and I woke up this morning to 4 of my meds changed by the APRN because they did not understand why I was on them Um.. it is my 14th day here, you have looked at my chart a number of times prior to today.. so um? what's the issue (by the way this is the second time the same aprn did this when Dr P was out)

So I start crying (A LOT) and email dr p immediately. so the nurse is the liason between my hysteria and the aprn... and my poor mother just had to listen to me, but thank god she did. so they dc'd ALL my meds IV and I am on 4 new meds and the rest PO... Um-- I don't absorb abx orally, but I guess we can play this for a day.

So tomorrow I am supposed to go home if "I'm good tonight"-- What the hell does that mean? Don't wet the bed? Don't eat too many snacks? dont' say bad words?

Anyway this is a rant of any rant and I guess I write this for me so it's my rant and i feel a lot better now, but worst fear is that my stomach will get all messed up with the steroids and removal of some PPI's-- we'll see.

Tomorrow Tomorrow
The sun will come out tomorrow
It's only 

Yes.. that's how crazy I feel.

Monday, May 9, 2011

Potassium, Steroids, and Numb Faces

I have had to stop and be still so that I could remind myself that there are truly things in my life that are beautiful and that I am grateful for... these are the reasons I experience such gratitude:

and I am so very fortunate to have a great friend give me a bracelet that says "positivity". I have been looking at it A LOT today..

This hospital stay has been hard. Nitza hasn't been able to be here as often and for as long as she has in the past and I miss her to badly. But its been great in the sense that we've addressed my stomach issues with meds. My mind crushing headaches were referred pain from the horrendous mouth abscess. We found the abscess.  My lungs are rocking.. I will start running when I get out...

It's the mouth healing that is difficult and my Potassium is VERY high right now, which is dangerous for my kidneys. They are doing another draw to determine it the first draw was accurate. My kidney function had been off for most of the 2 weeks so far, but has normalized so I don't know. I am back on IV S O L U M E D R O L... i have 845 personalities on that stuff... and none of them are very nice.

Oral surgery is coming today to reassess. I am numb in my face and the swelling is going back up a little and my fever hovers near 101... but I'm no dentist so they'll have to figure it out. I do have osteomylitis  and I also have a severely compromised immune system so those two don't make for a great date.

So that is the end of my whining session. I know God is watching me. I have family and friends thinking about me and praying for me, but I'm just kind a scared.

Saturday, May 7, 2011

a little of this & a little of that

Yesterday I got the very relieving and wonderful news that my bone marrow biopsy was  N O R M A L. That might be the only thing about me that is normal (joke -sort of). I was so relieved. It narrows down the immune system issues, which I think they have gotten to the root cause of.

I am here with no discharge date on the horizon... but that's okay... I'd rather be here with immediate access to doctors than at home with none.

I had a second oral surgery 3 days ago, and I am still struggling with my mouth and the pain and infection. More to come on that. Nitza brought Ale on Thursday night and it was so great.. I miss them so much-- Last night my dearest friends Kim and Hugh came to visit and I love them... they always make me laugh. Today Mom is coming which I am so excited for as well as nitza and Ale...

Alejandro playing engines on my bed..

Alejandro and Nitza.

School Picture are back!!!!

This one is my favorite!!

Happy Saturday everyone and have great strides walks to all my friends that are doing them today!!

Friday, May 6, 2011

The Bone Marrow Test Results

are normal!!!!!

Thank you God!

Thursday, May 5, 2011

Day 7-- Hartford Hospital Edition- Thankful Thursday

So I am still here in the hospital. This has been a very active visit.  Today is day 8:

My lung capacity has gotten better. My 02 is much better. I had my second oral surgery of the week yesterday. I'll spare you gross details, but there was jaw bone involved.  I'm in a lot of pain, but its being managed. My ABX have been switched up for this oral infection so hopefully there will be no more oral surgeries. My stomach is settling down a bit with a whole lot of medication. I am having low grade fevers, but it seems okay. At this point I'm not certain of the plan for d/c but likely it will be next week. I'm not full of wisdom or quick witted words today.. I'm just me, tired, in pain and praying for the best outcome. I'm looking forward to seeing my mom and gram today and then Nitza and Alejandro tonight. 
I hope that Gavin's great strides walk goes well this weekend and that TONS of people show up and walk. 

Please stop by Sarah Jones' blog. She really brought it home in her last entry about CF awareness. It left me with tears and it's an important message. These folks are so articulate in ways I am unable to be, thank God the message gets out!!

I am grateful for medical insurance and caring nurses, pca's, doctor's, and new friends here at Hartford Hospital. The care is amazing and I know I am in great hands. I am grateful that Nitza had some sort of a weird gut (or god) feeling to nag me about going to the dentist because this infection could have been horrid. I am grateful for my mom, and gram who keep coming to see me every few days driving an hour each way to play cards and keep me company. I love you guys. I'm grateful to friends like Jen V and Sarah J and Josh M and Ronnie S and Sara T who just drop me quick notes to see if I'm okay.We have a stellar CF community. 

Bone Marrow results should be back today. I'll keep you all posted. I'm going to rest and then clean up if I can before Mom and Gram come. 

only Love.

Monday, May 2, 2011

31 Days of Cystic Fibrosis- Day 2 Medications

I know that I don't take as many meds as a lot of folks but it feels like a ton! My meds cost me hundreds of dollars a month. They are, not in any order of favorite (that was a joke)--

Xopenex Inhaler
Proventil Inhaler
Xopenex neb
Pulmozyme Neb
Vit D 50,000 units 1x/week
80mg Omeprazole day
Vit C
Vit B
2 Probiotics
Carafate suspension liquid 1gm/4xday
5-8 senna pills
Azithromycin MWF

Lovely eh?

Sunday, May 1, 2011

31 days of May the Cystic Fibrosis Way--- Day 1: The Diagnosis

A large part of the beauty that spins the world 'round is the differences and similarities that make all of us and our experiences unique...  I have heard so many diagnosis stories, and witnessed my brothers at the age of 5, that I've come to realize that we are all different enough to be interesting. 

I was diagnosed with Cystic Fibrosis on 9/1/2009. 

I was hit by a car in 2005 while training for an Ironman Triathlon. I had ben extremely athletic and active until that point. I ran upward of 60 miles a week + other cardio vascular activities. On that fateful day in May of 2005, 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.
 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.
I'll never forget that afternoon. I picked Nitza up at work and she was steady. That's something I love tremendously about her... she is steady and predictable. We did not go right home, we went to the evergreen walk, which is an outside shopping area. We walked around and probably looked at gorgeous Mont Blanc Pens at Lux Bond and Green. We headed back to the car and she handed me a tiny white box. I was stunned because I hadn't seen her buy anything and there was certainly no occasion to celebrate.
I slowly opened the box and it was a diamond solitaire necklace. It was gorgeous and it really helped me see the beauty in the day... the truth in the diagnosis... the explanations I had been searching for for so long...
That was the beginning of this journey... a journey that has been troublesome and difficult, funny and heartfelt, honest and true... and it's only a quarter over :) I have 90 more years to go!

The Cheeks Of A Chipmunk- WHAT?

This is me extremely unhappy about the the swelling in my right cheek, which is the left side of the photo for you all looking at it. I had oral surgery, as noted earlier and the pain is rough. Ice packs are my new best friend. I had a test to see if I had stones in the ole' bile ducts yesterday but I guess its like finding a needle in a haystack so they are going to wait until they are in my stomach tentatively tomorrow, pending the all important ability to open my mouth for the tube to go down.

It's been a rough time here so far. Kidney functions are too high to get vanco 2x/day. They had to take me off some meds for the kidney functions. I am a slurring drunk-sounding person when I talk with out the perks of even a sip of beer :) The pain in my back is still here when I breath, but no pneumonia on x-rays, just a lot of crackles. I've been sleeping a ton and when I'm not, I'm doing a lot of this:

which really makes me happy despite my weird outer space look.

My mom and Tom are coming today with I presume Grandma. Nitza will be around by 1 also. I cannot wait to have them all here together for the sheer hilarity of it all... plus we all love each other so much its great.

I really have nothing profound.... nothing even slightly profound... really nothing much at all, so I'll go. 
 I wish you all out there in blogworld a very beautiful Sunday.