Blessings

I praise the Lord for who He is and I thank Him for all He has done……

This week a few things stand out in my mind.

I am blessed to have a supportive local gym and a go-getter mom! Our local fitness center held a cystic fibrosis fundraiser last weekend; a pickleball tournament, with all of the money raised going to the Cystic Fibrosis Foundation. It was a fun event with raffle prizes and everything.  The fitness director came up to me yesterday and told me that they raised over $2000 for the Cystic Fibrosis Foundation! Thank you Lori, mom and all those who helped to make this a successful event.

very competitive ūüôā

I¬†am so thankful for the small group that meets at our house each week. We have had such a great time getting to know each other better, praying with and for each other and learning from God’s word together. We are seeing God do amazing things and it’s always a highlight in my week.

I had the chance to meet up with one of my closest friends for breakfast this past week and I called Jim right after we said goodbye and told him “I am inspired. This time was so good for my soul.” I don’t deserve a friend like her. She is so thoughtful, caring, grounded, insightful….I could go on for a long time but basically, she rocks and I’m so thankful to have her in my life.

What are you thankful for this week?

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It’s Going to be a Good Week

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We Can Do It!

There is a sign at my gym that states “The body achieves what the mind believes.” I stare at it sometimes while I’m running on the treadmill. When I go into the gym and I tell myself I’m going to finish this run¬†and I’m not going to walk¬†and I can do this, that it’s as good as done, that not being comfortable is okay, this is an investment and¬†this is good for me, I finish. When I convince myself that there is no other option but to keep going, that it is possible, I usually reach my goal.

Our focus is so important.

Sometimes I think we talk ourselves out of doing something great because we somehow convince ourselves that we “shouldn’t even bother” because “we can’t even start” and “why would I want to start only to not finish?” or “what if……….” or¬† “today’s not a good day, I’ll do it tomorrow.” Let’s start believing in ourselves. We can do great things if we take the first step and start. Whatever it is, start today!

Today is the day! Now get moving!

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CF Conference

Today is the start of this year’s North American CF Conference. One of the great things about technology is that you can experience important events like this, even if you are unable to physically be present. If you’re interested to learn about anything going on in the CF world, (new medical advancements, transplantation, nutrition, daily disease management) you can register to view the live sessions here:¬†https://arc.nacfconference.org/cff/live/23

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Simple Joys

Life is all about perspective. Jim reminds me all the time that we have a great life:) Sure there is plenty of suffering and hardship and while I believe it is important to be truthful about that, I choose to focus on the things in our life that bring us joy. It’s a great way to live and I’ve found that over time, being thankful for the simplest of things has cultivated a grateful heart in me. Lately I’m thankful for-

The beautiful foliage! People travel to New England just to see it this time of year:)

A majestic visitor while I was sitting by the water.

Fall-bearing raspberries! They’ve been coming in steady the last few weeks and they are tasty.

Lively little cousins. Sweet, sweet kids. Love them so. I don’t always have the energy to spend tons of time together but even if it’s just an hour here and there, they always put a smile on my face.

Climbing monkeys picking apples

Elliot drew me some healthy smiling pink lungs for my birthday.

Can you say soccer all-star?!

I’m thankful for an amazing family. We’re not perfect but we love each other and love spending time together. They encourage me to do the best I can to keep running this race!

Liv’s 30 and I’m 37!! Yikes!!

Enjoying a favorite lunch spot!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Unshakable Hope

I am so thankful to God for all he has done and all that he is continuing to do. The following link is a message that was preached as part of our church’s missions month. As it is something I’ve been thinking about a lot lately, I wanted to share.

On Christ the solid rock I stand, all other ground is sinking sand. 

To Live is Christ

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Running Goal 2017

And the running continues……I set a goal of running at least 10K each week for the year 2017 in hopes of giving these lungs a good year long clearing. That’s a total of 322.4 miles for the year. While June set me back a little bit with getting sick and all, I’m happy to say that as of this morning, I’ve run 266.5 miles this year. Hoping to reach my goal before the year is out! Thought I’d share one of my favorite running songs:

 

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Cleveland Clinic Visit

Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. ~John 14:27

We traveled to Cleveland Clinic this past week to do the dreaded week of testing and appointments for a lung transplant evaluation. For about a year now, my lung function has been hovering a few percentage points away from needing new lungs to survive. Cystic fibrosis is very unpredictable, one little cold and lung function can quickly decline. All summer, I was unsure if I would be a candidate anywhere for lung transplant. At the very beginning of June we heard that I would not be accepted into the Boston transplant program (due to some complexities of my cystic fibrosis) after going through a full transplant evaluation with them. My CF specialist in Boston directed us to Cleveland Clinic again and said they may be willing to help us as they have a reputation for taking on high risk transplant cases……They were willing to see us the first week of October.

I am thankful to report that after a week of doctors appointments and tests at Cleveland Clinic, we were told that I am a candidate for a lung transplant in their program and they are confident moving forward with my case. The transplant pulmonologist that we met with said that I am not quite ready to be listed for transplant yet and he would like to have us back to reassess in 4 months and sooner if my health declines. Overall we left Cleveland feeling very encouraged and thankful that God has led us to this amazing place. At the right time, Cleveland Clinic will do my transplant surgery. 

Peace is the word that describes our experience this past week at Cleveland Clinic. Inexpressible peace. A peace that far surpasses my understanding. This past week was completely draining and exhausting, both physically and mentally. We had about 30 different doctors appointments/tests/procedures to get through in 4 days. There was absolutely nothing easy about it……….but His peace was there. We both experienced it throughout the whole week. For this we are extremely thankful. God’s faithfulness never fails. He is real and He is so worth knowing.

Thank you for your prayers during this time. We both appreciate them more than words can express.

“For the mountains may depart and the hills be removed but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,” says the Lord, who has compassion on you. ~Isaiah 54:10

 

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Cystic Fibrosis is going down

On July 18th, Vertex Pharmaceuticals announced positive early study results for next-generation CFTR modulators. Why is this exciting news? Because this is what many of us with cystic fibrosis have been waiting for: a medicine that will treat the underlying issue of the disease for those of us who have a minimal function mutation. While patient accessibility is still a little ways off, the bottom line is, these medicines are going to drastically change lives! Here is Vertex’ press release and then the Cystic Fibrosis Foundation announcement is here.

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Maine Beach Sunrise

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