A Health and Exercise Update

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Friday, September 9th was clinic day for me. It had been three months since I’d been in to see my CF doctor. That means that for the past three months, I’ve felt good enough that I didn’t need any visits outside of my routine check ups. I really like my doctor and I’m pretty sure he likes me too, but we were seeing way too much of each other over the winter months.

I didn’t feel too nervous leading up to the appointment, not until right before my breathing test. Then sure enough, I felt my heart rate start to rise. There are just so many nerves when it comes to that test. I have felt healthy and strong all summer which is the most important thing, but you just never know what that FEV1 number will be. It’s hard not to be anxious.

In the end I scored a 39%. It would have been great to see a big jump since I’m feeling far stronger and healthier than I did three months ago when I scored 38%, but I’ve been through this enough times to moderate my expectations. It didn’t go down so we’ll call it a success!

Everything else checked out great–my heart rate returned to normal after the test, my oxygen saturation was good, my lungs sounded clear, and my blood pressure was normal. All good signs of health. My doctor was very pleased with how I was doing and was especially happy to hear about my exercise tolerance which he reminded me (again) was just as if not more important than what my FEV1 says. He also brought to my attention that in spite of several illnesses over the winter, my FEV1 stayed stable during and after the illness and didn’t dip like it did with my struggles in the winter of 2015. Stability is a wonderful, wonderful thing when you struggle with a chronic and progressive disease like CF. I am so grateful.

Which brings me to my next update–Operation Lace Up! A few months ago I wrote that I had achieved my goal of running two miles without stopping but I intended to work on diminishing the amount of time it takes me to get through those two miles. At the time I was running them in about 26.5 minutes.  Well…I’m still running them in about 26.5 minutes. I did start working on reducing my speed as planned, but I found that when I pushed myself even a little bit harder, I was getting over tired and not having energy for the other things I wanted to do. I took a step back and reevaluated my goal. I decided to continue to run two miles three times per week at the slower pace and to shoot for increasing my overall level of activity by getting 10,000 steps or more every day (which my Fitbit measures), workout days included. The summer is a great time to be active, and specifically this summer, I had a lot of work I wanted to do on the exterior of the house after being bitten by the Clean Window Perspective bug. I had areas in the yard I wanted to spruce up and Jaime and I decided this was the summer to paint our house.

I’m sure I don’t have to tell you that yard work and painting are physically challenging to someone with reduced lung function, but I love doing these types of jobs! The sides of our house and the perimeter in the back were overgrown with weeds, so I set out to clear the weeds and move rocks from the back to the sides where they could be more useful for weed management. I’m not done yet, but things are shaping up nicely.  Here are a few photos…

 

You maybe wondering what Lucas was up to while I was doing all this work. As you can see, he helped us paint (for a few minutes) but it took some creativity to keep him occupied most of the time. I put up a tent which I filled with books for him, turned on the sprinkler, even filled a snow sled with water. (Think portable bathtub).

Working outdoors (and going back indoors a hundred times to get the other book or bath toy that Lucas wanted) really racked up those steps! So far I have been successful with my goal and am on a 75-day streak of getting 10,000 steps or more. I feel like this increased level of daily activity has improved my energy and stamina which I’m very happy about. Fall is here now and winter is coming, so I’m sure it will be more difficult to keep it up from here on out. But I’m up for the challenge 🙂

Lace Up Fail & Moving On

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Welp. It’s time for an update, and it’s not exactly the one I was hoping to give you four weeks after I planned to re-instituting Operation Lace Up. Unfortunately, just a few days after my last exercise post, I entered the dreaded adjustment phase and this time it was lengthy and difficult. I spent two weeks feeling awful, and a third recovering from feeling awful. Forget working out, I was just trying to get through each day in one piece. I would cough incessantly for several hours upon waking and experience coughing fits on and off throughout the day. The first week I was chilled unless I took a fever-reducer. I was exhausted, sore and short of breath most of the time. My body felt battered and my emotions were pretty beat-up too.

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This sums up how I felt those three weeks (and it made me laugh!).

Thankfully my health started to turn around physically and emotionally and I was feeling more human last Friday when I headed to the doctor for a routine visit. Even though things were better, I had no idea what to expect after the difficulties of the prior weeks. I was hoping my lung function would be stable and the doctor would have some answers for me about why I keep having so much trouble maintaining the benefits of antibiotic therapy once I’m off.

The good news is that my lung function was stable at 38%. It was a relief to see that number given how ill I had felt the weeks prior. I wouldn’t have been surprised if it were far worse than that. Even through all the sicknesses of this winter, my lung function remained around that 38% which is good since last year it dipped to 32%. The bad news is my doctor didn’t have any explanation as to why I keep having these adjustment periods after treatment. He said my symptoms are not considered common or normal even for CF, at least not to the extent that I’m experiencing them. It was discouraging not to have an answer or even a theory, but that is often what life is like with a disease like cystic fibrosis. Sometimes there are no plausible explanations for why things happen (or don’t happen). There’s not much to do but shrug your shoulders and move on.

Moving on means that now that I’m feeling better, it’s time to get back to that exercise! My doctor warned me that it’s going to be mighty difficult at the beginning given what my body has been through these last months. He told me not to get discouraged and to take it slowly. So I’ve decided to do the modified Couch to 5K again, starting next week.  I know that sounds like procrastination, but this week I’m walking on top of increasing my activity level with Lucas in an effort to ease into this. It’s been nice having the energy to be more active with Lucas again, and although unconventional, it’s still great exercise for me. We’ve been ambling around our neighborhood, visiting our local petting farm, playing with friends, and working together in the yard. Spending time with my boy and basking in the great weather we’ve been having is surely medicine for my body and soul.

Conventional exercise will be good medicine for me too, and once I start the Couch to 5K program next week, I should be able to jog two miles without stopping at the end of six weeks.  That’s my revised goal. I’m hoping and praying that regular exercise, good sleep, stability in my health, and some warm, virus-free months will get my lung function headed in the right direction. While I am grateful for that 38%, I don’t want that to be my new baseline.

I headed out for a walk the other day, and what song should pop up in the shuffle but the song Tubthumping by Chumbawamba. You know, “I get knocked down, but I get up again, you’re never gonna keep me down…” It made me smile because Jaime loaded that song on my iPod years ago as a joke when I was nervously restarting exercise after being leveled by an emergency operation. Never mind that the song is about falling over because you’ve had too much to drink, the refrain fits! Hearing it the other day was a good reminder that I’ve been in similar situations before, knocked down as it were by this disease. And God has always given me the strength to get up again and keep going. It’s going to be hard, but it’s time to dust myself off and move on.

Put one foot in front of the other
And soon you’ll be walking ‘cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule, be the exception
A good way to start is to stand.

(Who can name that song??) 🙂

A Windy Weekend

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Last weekend we got out of town and spent four days in the windy city of Chicago! It felt great to vacate for a bit. I’ve been on steroids for just over three weeks now. Steroids suppress the body’s immune response, and given the tough time I’ve had this year with staying healthy, I have been making a concerted effort to avoid situations where I might be exposed to germs. Translated, I’ve barely left the house. A weekend away was just what we needed!

We left midday on Friday and took the train. Lucas was very excited and spent the first hour looking out the window and all the farms and forests we passed by. Did I say Lucas? I meant Gnocchi the cat (a character on Curious George and Lucas’s current favorite alter ego).  “Gnocchi” was meowing pretty loudly while we were waiting for the train, but thankfully for the sake of the passengers around us, he quieted down once we boarded.

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“Gnocchi”

Our conversation for the first hour went something like this:

L: Look Mommy! A forest!  Do bears live in those woods?

B: Probably not, bears usually live further north.

L: But I want them to live in there!

B: I guess it’s possible.

L: Ok, because I think they do. Mommy, look at the farm!  Do chickens peck people?

B: No, chickens peck on the ground for food.

L: But I want them to peck people!

B: I guess it’s possible….

L: Ok, because I think they do.

[conversation repeats nonstop with various scenarios for 30 minutes]

B: Lucas, do you want to play on the iPad?

L: No, I want to talk about farms and forests!

B: ………….

We arrived in time to get dinner and relax in the hotel for the evening. Saturday morning I was feeling pretty tired from the previous day’s travel (and conversations) so I stayed back while the boys went to the park. While they were gone I did nothing. Really. I laid on the bed and stared out the window. It was pretty great 🙂  Sometimes I feel sad when I’m too sick or tired to be a part of activities, but that morning I was feeling really thankful. Sure, if I had my way, I’d love to be healthy and energetic enough never to have to stay back. But there’s always the flip side of the coin.  Jaime and Lucas have a really special and close relationship, in part because of all the times that Jaime has taken care of Lucas without me, and the countless nights they’ve snuggled up together so I could sleep uninterrupted in a dark, quiet room, and all the adventures they go on to give me some rest time at home. It makes me happy to see their bond. What made Lucas happy that morning was walking by the river, running around like a little maniac, and getting a pigeon to eat out of his hand!

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Walking by the river.

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Joy! Energy! Enthusiasm!

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Lucas feeding his pigeon friends.

Other highlights of the weekend included reading stacks of books and building with Legos at the library, visiting a zoo and farm with my sister and her family, a brief stop at the Magnificent Mile, and a full day spent at Chicago Children’s Museum. Lucas also successfully ate food from three different restaurants. That is what we like to call progress!

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I am so grateful that despite not feeling 100% back to baseline, I was able to go on this trip and withstand the rigors of the weekend. According to my Fitbit, I walked 18 miles and took nearly 42,000 steps during those four days.  I thank God for giving me the needed strength (and coffee)!

Yesterday I headed back to my CF clinic to check in with my doctor. My FEV1 was still at 37%, the same as when I went in three weeks ago. I would have been thrilled to see a higher number, but regardless, I am feeling so much better than I was three weeks ago. I’m sleeping better, coughing less, and having fewer headaches. The doctor said that the virus I was dealing with was strong and nasty, and of course in my situation, complicated by my CF and asthma. It will take more time to recover fully, but because of the progress I’ve made, I’m doing a final steroid taper and will be off in five days. Although I’m grateful for steroids, I’m very ready to be off. The flip side of that coin is pesky side effects like sleep interruptions, anxious feelings, and mood swings to name a few. (Jaime and Lucas are probably ready for me to be off too!) I hope and pray that the spring (if it ever gets here), will bring with it an increase in health, stamina, and lung function.

In the meantime I’m counting my blessings–like energy for a fun weekend away, my chattery four-year old, and a helpful husband to name a few.

Spring, Steroids, Streams & Sticks

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Yesterday morning I told Lucas it was the first day of spring. “It’s SPRING?  I’m so excited!” he exclaimed and started dancing all around my bedroom. “Daddy, Daddy, it’s SPRING!” he yelled. He climbed up on my bed and peeked out the window.  “Can we plant our flowers today?” he asked. “It looks warm!”

We’re going to have to wait another month or two to plant our flowers here in Michigan.  It was not warm yesterday in spite of the sunshine (unless you consider the 30s and 40s warm). Regardless, I share Lucas’s enthusiasm for spring! He’s most excited about flowers and veggies.  I’m most excited for cold and flu season to end.

I was hoping I’d be feeling normal by now and through the adjustment phase that I experienced after getting off antibiotic and steroid treatment for an infection I had in February. Unfortunately, things never improved, and after about 10 days of feeling sick, I landed back at the doctor last Thursday. I had been having frequent coughing fits, was sleeping poorly, and was feeling exhausted, sore, and short of breath most of the time. My FEV1 was down only one point from where it was at my February appointment, but in Feburary it was down six points due to the infection I had. So although it was a big relief to see it hadn’t plummeted any further, it’s not where it should be. I didn’t have signs of a secondary infection, and the doctor concluded that the main culprit for my troubles was my asthma, likely kicked up by yet another virus. Friday I started back on steroids to address the asthma.  My body will heal from the virus on its own, but that will take some time.

I’m not sure yet how long I will be on steroids. I’ve definitely seen improvement but still have a ways to go. My doctor is having me check in with him regularly and is adjusting my dosage based on my progress. I’m looking foward to feeling like me again soon. Hopefully by the time it’s warm enough to plant our gardens I’ll be healthy and strong and cold and flu season and all this illness will be a distant memory.

Steroids are a great blessing when you need them but have lots of side effects. Thankfully the worst side effects aren’t a problem when you take them for a short period of time. I do, however, have trouble falling asleep at a decent time at night and alternate between moments of having jittery energy and periods where an exhaustion washes over me and my brain feels foggy. I felt tired this weekend so we played quietly at home. Lucas is very into nature.  Currently forests and bodies of water along with their native animals are of greatest interest to him.  He created a forest out of a tree house toy and played with that for a while at home. When he was done being calm and quiet, Jaime took him out in search of a real forest and stream adventure and left me at home to rest.

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Lucas’s forest tree house. He has created an imaginary animal called the Sharp Pig that lives in dens and under fallen trees in the forest (in case the pink pig was confusing).

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A real fallen tree!

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He was probably digging for a Bumpadoe…another imaginary animal which he informs us is a furry amphibian.

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Sticks, streams, dirt…a little boy’s paradise!

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Joy!

I was sad to miss the adventure but hearing about it and seeing these pictures brought me lots of joy. Lucas also brought me a stick from the forest so I wouldn’t be completely left out. It’s funny how a soggy, dirty old stick can be a precious, heart-warming gift. I’m thankful he thinks of me and wants to include me even when I’m sidelined by my health. I’m hoping with the arrival of spring and the help of these steroids, next time I’ll be digging in the mud right along with my boys 🙂

That night,  Jaime was snuggling in bed with Lucas as he was falling asleep. At one point Lucas rolled over and whispered, “Daddy, I’m really happy.” Then he closed his eyes and went to sleep. Oh the beauty of joy mixed with peace and contentment! It blessed me to hear those words from my four year old. These frequent illnesses have been challenging for all of us, but there’s a hope that fills our hearts and we are reminded over and over that we have so many things to be grateful for. Today I’m thankful for joy, peace, and contentment in the midst of struggle.

And for spring, steriods, streams and sticks 🙂

Happy Endings

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Taking in the beauty of the Christmas tree.

A moment ago, I reviewed the post I wrote near Christmas last year. At the time, I was just getting through a serious illness.  It was the first domino to fall in what turned out to be a series of unfortunate events for my health, resulting in the loss of lung function that I’m one year later, I’m still trying to regain. It was not the best ending to the year.

This year, I’m just coming out of my first infection of the season again, but what a difference. Last year the infection was serious and debilitating, and this year, things began clearing up nicely after just a few days of antibiotics. I’m still having issues sleeping (courtesy of the medications I was on), but I’m done with the course now, and things are starting to return to normal.

Today I headed to the clinic for a breathing test. I didn’t have an exam scheduled, but I asked my doctor if I could have a spirometry just to make sure my lung function was headed in the right direction. Sometimes after an illness, I think I’m doing better than I actually am. Any improvement feels better than the worst days of the infection, and I’ve been known to think I’m doing great when in fact my lung function is still quite low. The opposite has happened too. I also wanted to see if the new asthma medications were helping. The great news is that my FEV1 was 44% today.  That is the highest score I’ve gotten in 2015!  It is up six points from my last exam in November. My lung function is still lower than I’d like (I’m hoping to get back to my pre-2015 health calamity baseline near 50%).  But I’m feeling happy and encouraged, and optimistic about what the future holds. The challenges of this past year have served as a reminder both that I am finite and God is faithful. Part of me would like to go back and delete a few difficult events from the year. But then I remember that God promises to work all things together for good, even, or perhaps especially the hard things.  That reminder fills my heart with peace. This year has a happy ending, and I love happy endings.

Last year after my pre-holiday illness I had to start from square one on my exercise. I knew I wasn’t as weak as last year, but I was still nervous when I mounted the beast [treadmill] a few days ago. I surprised myself and was able to run a mile and a half in 18.5 minutes. Not bad! I haven’t been as active as usual these past weeks but with Lucas around, I certainly haven’t been stagnant. He comes up with imaginitive games to play every day, and they always, ALWAYS involve running and chasing and laughing hysterically. These activites are good for my lungs. Some of his most recent games he named the Stomach Bug, Sharp Pig, the Tickler, and the Kissy Monster. If Jaime is home, he is the aforementioned villian. If not, it’s me.  The good news is after a good long time of screaming, chasing, locking Daddy out of the house (only for him to resurface from another entrance), and jumping out of hiding spots, every game ends the same. The villian cries with loud, dramatic, tears and says he just wants to be friends. He says he’s sorry he scared us. We all become best of friends. Lucas likes a happy ending too.

At Christmastime I think about Jesus and how He came as a baby, to walk among us, to love, and to serve.  Even now He is among us, giving life, hope, peace, and joy. And then He died in order to provide us all with the opportunity for a happy ending. That is the best news of all!

Hail, the heaven born Prince of Peace!
Hail, the Son of Righteousness!
Light and life to all He brings,
Risen with healing in His wings.

Mild He lays His glory by,
Born that we no more may die,
Born to raise the lost on earth,
Born to give them second birth.
Hark! The herald angels sing,
Glory to the newborn King!

Merry Christmas and Happy New Year, Friends!

Click here to view our 2015 holiday card 🙂

FEV1 Day

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Today I visited my CF clinic. If everything is going smoothly, I visit the clinic every three months for a breathing test and a physical exam.  I give a sputum sample so the doctors can keep tabs on what bacteria is growing in my lungs. I also see a social worker, dietician, and physical therapist once a year.

Although the breathing test is only one aspect of my clinic visit, it is an important one. It is also the part of the visit that gives me the most anxiety. That little number holds a lot of weight in the CF world, and my FEV1 is often uncooperative. So even though there are more facets to my clinic visit, and more measures of my overall health, clinic day always feels like FEV1 day.

This has not been my best year health-wise. I started out the year with a series of illnesses that resulted in my FEV1 falling from 49% to 32%. It then rebounded to 40%, dropped back to 34%, and settled at 42% for several months. I wasn’t exactly sure what to expect from that finicky FEV1 today. My doctor and I were both hoping that the score would continue to improve from 42% and I would get back to my 50ish baseline. I am always hopeful that at the very least, the number will be stable. But I haven’t been feeling as well this fall as I did over the summer, so I had my doubts.

And sure enough, it fell again, this time to 38%. My doctor feels that this drop is due to asthma. I struggle with asthma in addition to my CF and my asthma symptoms are the worst in the fall and winter. Fall is difficult for me as the weather cools and is often damp. I am very allergic to mold which is prevalent under the rising leaf piles. The mold gets stirred up and assaults my system as the autumn winds blow through. The doctor switched one of my asthma medications and added a new one, and we will see if those measures can get that FEV1 headed back in the right direction.

Of course this latest developement is disappointing. I always hope to see good numbers when I visit the clinic. I have used many f-words to describe my FEV1. Finicky, fiendish, falling, and fickle have made the blog. Boy would I love to use fantastic or fabulous instead. But alas, this was not a fabulous or fantastic FEV1 day.

Tonight as I reflect on my appointment, the feelings of frustration are there, but there are also feelings of peace. I really, really want to see that FEV1 improve. What I wouldn’t give to see a 49 or 50 again!  But even at 38, I have a full and happy life. Today is FEV1 day, but tomorrow is not. Today that number holds weight, but tomorrow, it matters less. Although that number shows weakness, tomorrow I will wake up a strong woman because I will take hold of the strength that God gives. Tomorrow is an ordinary day–a day in which I get to live that full and happy life. I will take care of my son and teach my students. I will talk to my friends, and relax with my husband. I will do whatever work God puts in front of me. My body is broken and so I struggle. But my life is full of love, laughter, and joy. I am whole.

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Unchanged

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About a week ago, Jaime published a post entitled Never Give In. He was excited for me because I’d just accomplished my goal of running two miles in 25 minutes.  He called me resilient.  He called me tenacious. High praise, indeed.

A week out I’m feeling anything but resilient and tenacious.  I guess you could say I’ve been knocked down. I had a routine pulmonary appointment several days ago and I was hoping to see my FEV1 rise up.  It had fallen to 32 during a severe, extended illness this past winter, but was coming back up and had landed at 42 at my appointment two months ago.  I have learned to moderate my expectations because my FEV1 scores don’t move easily, not in the right direction, anyway. The running goals I set were part of my endeavor to regain lung function as I continued to heal from the illnesses of this past winter. I wasn’t expecting a giant gain but was hoping for a few positive points to show me I’d been successful.

I ended up getting 42 again. My score was unchanged. There was zero improvement. At first I talked myself into feeling okay about it. I know the number is less important than how I’m feeling, and I’ve been healthy and strong this summer. But sure enough, as the hours passed, discouragement settled in.  I worked hard. Really hard. I wanted a better score.

My doctor was surprised that I hadn’t made any gains as well, especially since everything else during the exam looked great. He decided to order an echocardiogram to see how my heart is doing. Because of how well I am functioning, he didn’t expect to see anything concerning. A positive result would confirm our suspicion that I’m healthier than my FEV1 would indicate. I thought for certain things would look good.

But we were both wrong. Although my heart muscle is performing well, the pulmonary artery which supplies blood to the lungs was under greater pressure than either of us expected. This indicates that my heart is working extra hard to push blood through the arteries in my lungs, most likely because those arteries have narrowed or are blocked in some way. This negative report was incredibly disappointing. Knocked down.

I gave my treadmill a long, hard stare before I got on it the other day. There was a large part of me that wished to wallow in self-pity, take a few weeks off, cry some crocodile tears over the fact that my efforts didn’t pay off in the way I wanted them to. But that would be giving in. My heart definitely wasn’t in it, but I mounted the beast and banged out those two miles. I did it again two days later. I have to do what I can. I have to try.

I feel insecure right now. A FEV1 score at the lower end of the moderate obstructive range…a pulmonary artery under too much pressure. These are not comforting thoughts. These test results aren’t written in stone…it is still possible for my lung function to rise and the pressure in the pulmonary artery to subside. But there is nothing additional that I can do to facilitate these changes.

With that in mind, I must return to the true source of my hope. It is not in myself or my efforts. It is not in my doctor’s expertise. It is not in my therapies, my treatments, or in my ability to avoid germs. It is the hope I have that my life is held in the loving hands of my Savior, and that He has a purpose and a plan for me.

Several verses surfaced in my mind after I got that disappointing call from my doctor.  One was 2 Chronicles 16:9 which says:

The eyes of the Lord run to and fro across the whole earth to show himself strong on behalf of those whose heart is loyal to Him.

Another was from 2 Timothy 1 (verse 7):

For God has not given us a spirit of fear, but of power, and of love and of a sound mind.

Another was Isaiah 54:10-11:

For the mountains shall depart, and the hills be removed; but my kindness shall not depart from you, neither shall the covenant of my peace be removed, says the Lord who has mercy on you. Oh you afflicted one, tossed with tempest, and not comforted, behold, I will lay your stones with fair colors, and lay your foundations with sapphires.

Sapphires always remind me of my sister Sheri.  She was born and died in the month of September. The sapphire was her birth stone–both the start of her life on earth and the start of her new life in heaven. Her existence was marked by struggle but she never shrank back from the challenges that came her way. The result was a life and legacy full of meaning and beauty. A sapphire is a fitting stone for her. Along with their stunning beauty, sapphires are incredibly strong. The only stone harder than a sapphire is a diamond which the hardest mineral on earth.

It’s helpful to have Sheri’s example when I hit these bumps in the road. She was sapphire-strong because she accepted the strength God gave her and I, too, can take hold of that strength. I can claim it as my own even when I feel angry and defeated–even on the days when I’d like nothing better than to throw in the towel and let someone else be resilient and tenacious. I can hold fast to my faith and to the promises in God’s word–promises of peace, comfort, kindness, and love. He has shown himself strong on my behalf over and over. I don’t know what the future holds and whether God will restore health to my heart and my lungs. They may remain unchanged. But the promises of God are unwavering and ever-present.

They, too, are unchanged.