Today, for the 2nd time, I was able to participate in The Cystic Fibrosis advocacy day at the Massachusetts State House set up and hosted by the Cystic Fibrosis Foundation. Similar advocacy days are taking place at numerous sites around the country. These advocacy days give us the opportunity to tell our state legislators our personal stories about the people we love and care for as well as ask them to support, fund and protect specific healthcare items in our states’ budget. I highly encourage anyone who is a caretaker, a sibling or spouse, a parent or just a great friend of someone with CF to take part in this program.
Massachusetts State House
Here’s what you can expect based on my experience the last couple of years.
The advocacy day I attended was put together by the Mass/RI chapter of the Cystic Fibrosis Foundation. (If you want to find a chapter near you, check out: https://www.cff.org/Locations/Find-a-Local-Chapter/ ) Along with a handful of members from the national office in Bethesda Maryland, they created a full day of appointments with our state legislators. In case you are uncomfortable speaking in public or worried about what you would say in these appointments, they were kind enough to put together a folder which included a cheat sheet on what topics to focus on. This was incredibly helpful because it included info on the health care issues affecting our state and how we should ask our representative to protect these key issues. We were also reminded to be personable and bring videos or pictures of the CF’er in our lives to bring their stories to life.
The truth is, the day flew by. I had 5 meetings between 10:30 AM and 1:30 PM with only a short break for lunch. As the day went on, I found that my story was getting more streamlined but also more impactful as I recognized what was important to the person I was speaking with and what resonated with them as a politician. Personally, as I heard myself telling and re-telling the story of my wife’s fight against CF, I was filled with a renewed resolve to help improve the quality of life for my wife and I was reminded of just how proud I am of her for her daily persistence through seemingly insurmountable medical and physical barriers.
This day is a powerful opportunity to get involved in shaping and protecting the healthcare landscape for the CF community and I am so grateful to the CF Foundation for putting their efforts into making this possible.
I don’t know how people get through anything challenging in life without knowing the Lord. We’ve experienced some unexpected events in the last couple of weeks and if I didn’t know and trust that God had a plan for it all, I would’ve fallen apart. The faithfulness of God is real.
We have so much to be thankful for this week including-
New job opportunities for Jim. He is interviewing. His company laid off the entire sales force recently. God is opening some doors and we are so thankful. We know he will lead Jim to the right position. Having Jim home with me and not traveling so much each week has been a huge answer to prayer.
Much needed medication. I have spent many hours on the phone with my insurance company, specialty pharmacies, and clinic over the past 2 weeks, trying to get 2 of my critical CF medications covered. Even though these meds are considered maintenance medications, they are expensive and so every year a prior authorization is needed in order for my insurance to pay for them. I let myself get really frustrated about it this time. It wasn’t seamless. Nobody was communicating with each other. Lots of tears. So many hours on the phone…….I just wasn’t sure I was going to get the medication covered this time. I’m disappointed that I doubted. Today I got a call from both specialty pharmacies telling me the drugs were approved for coverage and delivery scheduled for tomorrow! Thank you Lord!
I’m thankful to celebrate my dad’s birthday this week! If you know him, I think you’ll agree that he is pretty amazing. He is one of a kind and one of the coolest people I know. He would do anything for us girls. I am so blessed to have him as my dad. I love him very much. Happy Birthday Dad!
Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, ~Colossians 3:23
Physical activity has been challenging lately. When your lungs aren’t working well, you realize just how much you need them to do the most basic activities. But even with these lungs, I’ve got to do my part to be a good steward of my body and that includes consistent exercise. I can’t give myself excuses to not do it. For accountability and motivation, I set a running goal for 2017. One of my cardio fitness challenges for 2017 is to run 10K each week (6.2 miles). Update- I’ve been running on average, 7 miles a week on the treadmill since the start of the new year. Lots of heavy breathing and coughing. It’s been very difficult but very helpful in clearing my lungs. Continued physical activity is extremely important as I prepare for transplant.
The last few weeks have been busy, crazy, exhausting……. In addition to regular life stuff, we’ve made many visits to the hospital for tests/procedures/appointments to finish up the lung transplant evaluation. We’ve experienced some bumps in the road but we are hopeful that those issues will be resolved and on March 30th, I have a meeting with my support team (they require at least 3 caregivers to be present) and the transplant team. After this appointment, my case will be reviewed by the transplant team and we will have a better idea of when I may be actively listed for transplant.
Life seems almost impossible lately. I’m just so tired all. the. time. But somehow, someway, at the end of each day I’m able to look back and realize that the Lord has given me exactly what I need to keep going. I’m never alone and He always provides.
He gives strength to the weary and increases the power of the weak. ~Isaiah 40:29
Give thanks to the Lord, for He is good; His love endures forever. ~1 Chronicles 16:34
Emily- I’m very thankful for some good test results. I had a liver biopsy a couple weeks ago as part of my lung transplant evaluation. I heard from my doctor today that my liver is healthy enough for lung transplant and that I can now move forward with the rest of the evaluation. Thank you Lord.
I’m thankful to be in a place where I genuinely appreciate the simple things in life. I see life very differently than I used to. A lot of the things I used to think were important, have been stripped away over the last couple of years but I couldn’t be happier. Joy is present in our house:)I’m thankful for a new wellness group that I joined this week. What an encouragement to be a part of a group of people who want to be healthier spiritually, mentally and physically! Thank you Michelle for leading this group:) I’m excited for the weeks ahead.
As I near the end of my lung transplant evaluation, it’s top priority to keep my body active and as ‘healthy’ as possible as I prepare for surgery. Continued exercise is key. My fitness challenge in 2016 was climbing stairs. A lot of stairs. My sister and I climbed 31,587 flights of stairs to raise money for CF research. 2017 brings a new fitness challenge.
My fitness challenge for this year involves running. I do all sorts of exercise but running is by far the biggest challenge for my lungs. My running mileage won’t be anything close to marathon mileage but it will be a real challenge for me and my lungs. (Currently functioning at just under FEV1 of 30%) I’m going to run 10K or 6.2 miles each week for all of 2017, for a grand total of 322.4 miles.
Why do I need a fitness challenge? Motivation. It’s nearly impossible for me to continue exercising 6 days a week with physical limitations and lack of energy. I need a goal. And I like to be working toward something. Don’t you feel a sense of accomplishment when you reach a hard fought goal?
Paul is one of my favorite characters in the bible. Thinking about the apostle Paul, his transformation and the suffering that he endured in his life all while praising God and encouraging other Christians to do the same, gives me hope. Hope that God can do great things through a sinner like me. I have great respect for Paul. He endured so much hardship and continued to walk the walk. He persevered in his faith. To him to live was Christ and to die was gain. His story is inspirational to me and to many others.
This year, I chose a focus verse. And I’ll remind myself of the message in this verse everyday. Philippians 4:8. Paul wrote this letter from prison. He spent a lot of time in prison for openly and publicly teaching that Jesus is the Son of God. Even though he knew that he was probably living out his last days in prison, he was filled with JOY, and encouraged his brothers and sisters in Christ to live out their faith in joy and unity. I want to be a person who walks in the ways of the Lord. I want to encourage others to live out their days with joy in the Lord whatever their circumstances may be. I know that my thoughts greatly influence and determine my actions. For 2017, Philippians 4:8 is a great place to start each day.
I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds. ~Psalm 9:1
Emily- I am thankful for a wonderful Christmas season, celebrating the birth of Christ with family and friends. We were able to travel and spend lots of time with family and even got to spend some time with the newest member of the family. Little cousin Charlotte:)We love good, strong coffee and I’m thankful for Casi Cielo coffee. It’s a brew that starbucks only carries this time of year and we are thankful to be able to enjoy it.
I wouldn’t consider myself technology savvy but I do appreciate it. I’m thankful to have access to all my test results at the hospital through the online patient portal.