Hitting a High C

December 31, 2015

It’s the last day of this year, and this is my official New Year’s Eve post. It’s also the eve before I begin month 3 of taking Orkambi, the new Cystic Fibrosis drug.

I originally planned to chronicle the major ups and downs of 2015. There were plenty of both to share, but I have realized that so much of life is how we perceive things. I realized that although I had many challenges this year, I also celebrated many victories and moments of sheer joy and love.

So my New Year’s post will be about 10 of the most amazing moments of 2015, in no particular order…

10. Small victories!

  • The first shower I was able to take by myself, without needing an inhaler halfway through, without getting out of breath, each time after 2 major hospitalizations this year
  • The first time I walked up the stairs unaided, after two months of shortness of breath just a few weeks ago, after nearly 2 months of being sick
  • Cooking! It’s something I love to do – and Ken knows that when I start cooking, I’m feeling better.

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    Yum!

 

9. A new “destination” For Cystic Fibrosis patients at my hospital.

The CF clinic and the Nurse Manager of the Pulmonary floor have worked closely to bring CF patients to the same floor each time we stay at the hospital. Prior to this, we’d go wherever there was an open bed – usually working with staff who aren’t familiar with the many variables of CF patient care.

They hope that CF patients and staff will get to know one another during treatment for a flare-up, which would breed familiarity, comfort, and most importantly, trust. Indeed, seeing the same faces has helped immensely, and repeat experiences helps the staff provide more specialized care.

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This is my “autograph bear,” given to me by the Nurse Manager.

In addition, they offer some amenities for CF patients, such as an in-room exercise bike, a refrigerator to stash extra food (we need lots of calories!), etc.

FLASHBACK! I had stayed on the floor 2 years prior – one of my most awful exacerbations in my life. Not just my lungs, but my kidneys got sick, too. I was on Oxygen for the entire 3 weeks – which was no where NEAR normal for me. I spent the duration of Hurricane Sandy in that room on the Pulmonary floor, and while it was the first time there, I found the staff very patient and open to learning more about treating CF patients, even during a State of Emergency.

8. Connecting with my oldest niece on Skype while she was studying in France for a semester. It was amazing to see and hear her, especially over the Thanksgiving holiday.

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So thankful for the internet! Squeeze in tight!

7. Fundraising! I got out of the hospital in time to attend our second annual Darts for CF Fundraiser as part of our 2015 Great Strides fundraising team. We raised a total of $2,935 for the Cystic Fibrosis Foundation this year.

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Stopping to appreciate the moment

I’d like to offer another round of thanks to friends and family who donated, local businesses who sponsored and donated items for the raffle, everyone who helped work the event, the Dart community who participated in the tournament and fundraiser, and the Toni’s Titans team who once again showed me that you don’t have to be a giant to make a big difference.

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My sister, two of my nephews, and my cousin holding down the fort at the Great Strides walk this year.

6. Getting to celebrate important moments in my family’s lives. Holidays, birthdays, sacraments, and even a visit from Ken’s dad while he was on the road for work…even if there’s rain, or we have to postpone a party, or wait to see each other due to illness, work schedules, or other things Life demands.

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Ken and I met up with his dad while he was passing through the state for work.

5. Picnics! It was such a treat to feel well enough to host a July 4th (5th, due to rain) picnic for my family. We grilled and played in the pool, the boys competed in lawn games, and the girls chatted the afternoon away.

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Summer fun with the kids

I was so excited to plan and host a holiday celebration for my family. It was a great day!

4. Another year! I celebrated my 44th Birthday (which happened to fall on Thanksgiving this year) with my family. As a child, I never imagined myself seeing the age of 30. I am so, so very lucky and blessed to persevere, and to learn to choose to fight each day.

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I needed some help, but I did it!

3. Nearly half a lifetime together! Celebrating 20 years since I met my husband – the man who promised – in front of God and our families and friends – to love me for better and for worse, in sickness and health, until death. Marriage is not easy for anyone; life isn’t easy for anyone. No relationship is perfect. But each day, we choose each day to honor our vows – to see the best in one another, to love each other. Love happens, but true love is falling in love with the same person over and over.

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Ken, in 1995, boarding the plane during our first visit to meet his family.

2. Confidence. I realized that I can still rock a selfie even if I am in the hospital!

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Hospital selfie!

1. A Second Chance. I began taking the new CF drug, Orkambi, on November 6. So far, I’ve experienced some side effects, but I can definitely feel some positive changes happening in my body.

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My box of hope!

I begin month 3 tomorrow. We’ll see what the future holds for me. But for the first time in a long time, I’m ending one year with gratitude, and beginning another with hope for a better future. And that is everything.

Leaving 2015 on a high note,
ToniV

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