Then and Now- the 2011 edition

For the sake of this post, then encompasses 2000-2008 and now is 2008 onward. Ok.. Glad we got that squared away.  I was athletically active from the time I was about 6, maybe before. I played year round soccer, basketball and later softball. After high school and college, I became a runner and then a triathlete (to pacify this swimming coach at the gym I went to who regularly told me I had promise) and then a runner again.

There are a few things I know about myself. I often compare myself to myself at other points in time and realize that is not healthy. I am extremely competitive against myself and I push myself way harder than a human should be pushed.

I had a pretty severe bicycle accident in 2006/7 when I was training for Ironman Wisconsin. It resulted in 18 procedures/surgeries and the finale was the loss of my right kidney. I was hit by a car and needless to say, my road biking/triathlon career ended at that precise moment... that is fine with me. It was then. It was at a time.  My CF spiraled out of control from that point until now (simply just meaning the last 2 weeks) and I was unable to re-reach that physical fitness, but I've never lost hope that I will one day run 6x a week. As they say, "Every journey must start with a single step." (I did not coin that phrase, and I'm   sure I got it wrong, but credit where credit is due.) Today I no longer want to be 5% body fat. Today I want to be happy.

That all being said. I LOVE with all my heart and soul, to run. I love the motion, the speed (or lack of speed as these days would have it), the sweatiness, the dried salt all over my body, the mental clarity...

I Love to Run.

I went through the archives (then) to reminisce and I was thrilled that I had that time, then... but you know... I am much happier and stronger now. 


The following photos are circa 2004-2007

Those are all pretty cool pictures to have in my scrapbook.. but wait.. look at this joy

This is me now (today actually) happily propelling forward in some motion... I guess until you can't do something you don't realize how happy you really are doing it.

I am blessed because I can breathe.

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!!

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.

Tara

Thankful Thursday and Little Boy Haircuts

After I picked Ale up from school yesterday we went to pick up some prescriptions for me (a common occurrence... Ale and the pharmacist George, are great pals) at Target. Going to Target, as most people who know me know well, is bliss. I can never go for one thing. I have to do a full Target "walkaround" in the same order each time. So, all that being said, we got my meds and headed over to the new grocery section (which I now love but didn't at first because it was change and I really like routine --No Change). Ale and I debated the pros and cons of Welch's fruit chewies vs the Target brand... He won, as I had no solid defense for the Target brand (which I usually buy) and Alejandro is a boy that loves facts. We went to books so he could look at a lego book and a Chuggington book. I folded (I usually do) and we bought a Chuggington video. It's our first. We own every Thomas video (and engine for that matter) so Ale wanted to try Chuggington. We went by clothing and then digressed and went and bought a clipper set for his hair. The boy's hair is like velcro and for the sake of his preference I decided I would give him a cut.

We popped Chuggington into my Mac and I cut his hair. 

This is the after picture which I took today:

Pretty adorable. (I'm very biased)

These are the curls before:

We had fun and tomorrow is picture day. 

I'm feeling grateful for my family.. my Nitza and Alejandro, my mom and Tom, Kelly, Nate and Oscar, Erin, Mike and Gram...

My life is full of abundance and looking into the eyes of this boy remind me of that every day...

Gratitude is Everywhere

I'm not in the hospital. I have had the good fortune of having a doctor who encouraged me to not be reachable for a week. Digitally check out. Enjoy a beach. Find my breath. We did just that.  Pictures will follow (tomorrow maybe)--
It was beautiful to be with Nitza for a week sans her blackberry, our iphones and any real connection to stress. I took all oral and inhaled steroids, did treatments and still struggled to breathe at times but laughed, relaxed and just loved being together.

We were on a very very poor island on Thursday enjoying a spectacular view from a private beach. Nitza asked me to get her a sarong at the local beach shop.  I did so happily. I was the only person in the shop with the short haired shop owner. She offered her island expertise and I chose a red flowered sarong. She asked me if I needed instructions for putting it on. I explained that it was for someone else and that by the time the instructions reached her they would be long lost, so it was best to leave life as is and just pay for the sarong.

As I handed her our agreed upon cost, she froze, staring at me. She said, "You have port." I nodded. She still did not move so I explained that I had a lung disease and was often on IV antibiotics. Her eyes saddened. She reached up with her left hand and pulled just slightly down the right portion of her shirt. She revealed a portacath, severely infected with a hole the width of a wire clothing hanger on the side of it.  She explained that it was infected... I nodded. She told me she had cancer and was receiving chemotherapy through her port. The infection haunts me.

I asked her about the process whereby she receives her chemo and she explained that she got it in a walk-in medical clinic on her island of about 35,000 people.  I feared that the infection would take her life.

Her eyes had begun welling up with tears. I reached out with my left and and held hers. We stood in silence for many moments, 2 women, ill, who live thousands of miles apart hand in hand. Another patron walked into the shop and we quickly dropped hands. Our eyes stayed in sync. I told her that I would pray for her. I told her she would be well. She told me I was beautiful and that I would live to be one hundred and ten.

I am grateful.

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.

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