Why Is This So Hard? 1 Month In

The other day a friend made the comment that our dealing with diabetes seems like it has been harder than the adjustment to CF.  She was confused a bit as to why that was, and I couldn’t really explain it to her. But,  I have had A LOT OF TIME to reflect the last few days, andI have been able to articulate a few reasons why I think the adjustment to diabetes has thrown us a bit.  For one…we are in a time in life LIKE NO OTHER TIME any of us have ever experienced with the coronavirus and quarantine time.  That sounds strange, but having the weight of the world’s situation is a weight for everyone, but WITH all that we have going on, it is especially heavy. So that is the backdrop but it is compounded by so many things that are new to us.

Dealing with Cystic Fibrosis for the last 14 almost 15 years we have had a routine.  A FIERCE one at that. Every day of Rachel’s life we have started and ended every single day with breathing treatments, and a host of medications.  We worry about every cold, and cough.  We wash hands like crazy and have missed more events than I can count because of others that are sick. We are cautious. We are calculated.  We understand a tiny bit of how this disease works and the traps and pit falls to try to avoid.  There is a small bit of CF that is predictable.  If we work hard, are dillegent with care, and careful, Rachel has a better chance at health. The struggle with CF is a strange anticipated danger.  IF there is a cough, then… IF there is a harder time breathing….then there is something that becomes acute quickly.  Obviously breathing is a BIG DEAL!!!  But, from what we have experienced there is usually a slower time frame for danger, and more spread out between illnesses. NOT WITH DIABETES.

The diabetes diagnosis is a bit more like when Rachel had her egg allergy.  Every meal, every thing that she ate was a possible crisis if it contained eggs. I remember when Rachel was about five she prayed that the Lord would take away her egg allergy.  I have talked before about how amazed I was that she prayed that.  But, to her, the egg allergy was a bigger, more immediate threat.  It was before her daily, and even more often…each meal.   She could not be like other kids.  No cake at birthday parties, checking every ingredient in a EVERY SINGLE place we went, and if we couldn’t check it and know for sure it was safe…she did not eat it.  She constantly felt like she was missing out or worse, scared for her safety.  And, most of you understand how much our world and society is built around food, but we REALLY DON’T understand until it is us that must think about every single thing that passes our lips.

ALLERGIES…are a bit like DIABETES!

So the struggle we feel currently is likened to Rachel’s struggle with allergies.  However, now it is not only if she eats…it is an issue if she doesn’t eat!  HOW CRAZY!!  I have known of diabetes from very young.  I remember watching my grandmother give herself shots every day when we would visit.  I grew up hearing constantly about a close family friend died from a diabetic coma. BUT…when it is YOUR LIFE…IT SHAKES YOU HARD!!

I can not tell you how many nights that we have gone to bed in the last month praying for Rachel’s safety.  Praying that we would know if she was in trouble. Feeling the stress of the world on our shoulders.  My husband is amazing and encourages my heart to lean into Jesus especially when I fall in bed exhausted but worried that our girl would be in danger.  Thankful for him. It has been a month since her diagnosis and it has been quite the ride.  When we first started Rachel’s numbers were crazy high.  Like REALLY HIGH!! After about two weeks of insulin, her numbers dropped off the charts.  We were struggling with low numbers almost every day for a week.  It is pretty awful to watch those numbers go low, I don’t need a meter to watch them drop, you can literally see them on Rachel’s face. She nearly slumps.  She gets a headache, and genuinely feels like crud! When the numbers go high, she equally feels terrible.  Her sight becomes blurry with both, but she can hardly stay away when they go high either. Her numbers have gone all over the place.

It is pretty small, but it is there on her thigh this week. Last week it was on her arm. Next week, she will likely move it to the other arm.

 

One of the biggest blessings has been this device that she wears on her arm daily.  It is inserted (think of a small needle/catheter) and stays there for 10 days in one place before she moves it to another. This tracks her numbers every five minutes.  So we went from checking her numbers around 10 times a day with finger pokes OUCH! It’s a tiny poke, but seriously when you get poked that many times…it still hurts! So this device, called the Dexcom, has been amazing!  We have been able to watch her numbers a bit closer and see what is really going on in her body.  It gives us alarms when her numbers are dropping.  And sometime they drop like a ROCK.  She has gone from 350 to 80 in a matter of 30 minutes.  SO WILD!  We would not have known this information without this miracle device. There have been times that we haven’t been able to keep her out of the “danger zone”.  Every time we turn around she is going low, so she eats something quick., and we think she is safe only to head low again in a short amount of time again. THAT IS STRESSFUL!!  The thing is, she likely did this before, we just didn’t know why she couldn’t keep her eyes open, or why she felt like junk.  We have adjusted our insulin about 10 times so far.  It truly is a process of trial and error, only the stakes are HIGH!! Gaining information from this device has helped us to start putting two and two together.  Great blessing.  BUT ALWAYS AND EVER BEFORE US!!!  All day and All night! I check it several times in the night.

Please pray that her body can withstand the adhesive. This is what her arm looked like last after the first change. The gunky outline is the adhesive edge, kind of yucky, but not much can be done about that. Praying that we figure out some techniques to manage this aspect of this device.

When the numbers go from high to low, or stay low, it is tough for her to have the energy to be her usual spunky self. There have been several days where she just can not keep awake. I can count on one hand the times that she has taken a nap in the morning. Her body is definitely struggling to adjust. There are good days, and there are days that are rougher. Again, thankful for the Dexcom device that allows her to sleep, while giving me the comfort of knowing she is safe.

We have gone on several bike rides, but we have to check numbers before we go because exercise drops numbers. We are learning so much as we go, seriously…crash course in diabetes is not for the weak. At least twice now we have gotten ready to go and her numbers have been low.  So we treat her low (usually by eating something) and then try to proceed.  We were out playing basketball the other night and her receiver (that tells us the BS numbers) was inside.  When she came in, we noticed that the number was in that dangerous zone.  Oops, this needs to be by her all the time now.  We started shoving food in her to raise those numbers. It feels like a crisis every time.  So much of CF is routine.  We do what we do until she is sick and THEN it is a crisis.  But every day for about a week and many more in between it has felt like a critical event at some point during the day and a couple of days it was really BAD.  (So thankful for a sweet friend hundreds of miles away that is a doctor and understands diabetes that we could talk to over last weekend when she was on too much insulin and struggling all day every day to stay out of the danger zone!)  Too much insulin on board…HURRY EAT SOMETHING!!  Not enough..watch those numbers soar through the roof!  It’s time for bed…oh, those numbers are too low to send you to bed in the danger zone. Here have some sugar free pop for you to enjoy, oh wait, we need real pop or juice in the house in case we can not get your numbers to go high quick enough. And the list goes on.  Not to mention that Rachel still HATES getting the insulin shots!!!  I MEAN HATES IT!!! You would think with all of the medical events and things that she has had done to her in her life that she would be immune to it…but it is NOT SO.  It is almost the straw that broke the camels back sometime.  She is weathering it, but it is hard. Dad and I still give her the majority of her shots, she usually takes four or five each day, and I still cringe every time I poke her with the needle. =(  She struggles with the long acting one every night saying that it burns for about an hour after. She still shakes and freaks out a bit giving herself shots, but she is making progress.

We had about a week or two where she nearly refused to eat anything! She was SO TIRED of getting poked that she said it was easier to just not eat.  Sounds good…until your numbers crash through the floor and you are in a different danger zone.  Rachel is still not loving taking insulin, but will usually take it for two meals a day, a snack and then her nighttime.  She tries to eat a breakfast with out any carbs in it to not have to get a shot first thing in the morning.  I don’t blame her.  However, her weight has come up a bit, but still teetering on needing a few more calories to catch up to where she was in February before she got sick with whatever the “crud” she got hit when then!

A sweet friend brought us some low carb snacks to enjoy. SO SWEET!!

Eating has been tough. She is figuring out what works for her body and what doesn’t, thanks to that little device.  For some reason she can eat popcorn, but not chips.  We haven’t figured out what healthy, weight gaining carbs to include yet.  Some days we do well with sweet potatoes, or quinoa, and other times her numbers don’t match the insulin given.  We don’t know why yet, but we are getting pretty adept at counting carbs. We still do a g-tube blend of food before bed which has been another amazing blessing.  You may not know, but in January she was really trying to figure out how to not have a feeding tube some time in the future, or at least not have to use it (as it still causes her pain about every other week or so with terrible granulation tissue that must be burned off).  Anyway, we are thankful that we can get the food in her body to help her keep gaining weight.  Currently her new favorite food is pork rinds with humus, along with no sugar yogurt with a few blueberries in it (she has figured out that she doesn’t need insulin with either of those snacks, so she likes it even if it is not her beloved chips).  One of our sweet friends brought her a box of low carb treats the other day.  She is figuring out how to like them still, but will get there. The other day her siblings were playing catch with gummy bears in the kitchen.  It is one of their favorite games.  They see who can throw it the highest and catch them in their mouth.  Rachel joined in not thinking about it.  (Simple sugar or carbs in fruit was the only thing that she could eat without the need for enzymes for the last 14 years.)  She caught one in her mouth, and we all laughed.  Then she went over to the bag of gummies and looked at carbs in it.  The next one she caught and cheered and then spit it in the trash. =( I didn’t say anything, but she knew, and told me it had too many carbs in it for her.  How hard, how brave, how incredible!!

I am so intensely proud of my girl. I see her struggle, and watch her wrestle with something that is tougher than ANYTHING I have ever had to do, and then to do it with grace and strength.  I am amazed by her resolve.  I swear I would roll over and just feel like QUITTING! CF has thrown some of the biggest curves at her.  18 medications a day and hours sitting attached to a machine to clear her lungs of mucus, time missing friends, knowing that you stand out no matter how hard you try to fit in…now adding two more medications AND being tied to a device that keeps blood sugars in range by watching every single thing that you eat…ONE MORE THING for this fourteen year old who would just like to look at nail polish videos on youtube and paint crazy art projects.

Her new normal is…20 Medications daily, hours of treatments a day, watching everything she eats, mulitple shots of insulin…SHE IS A WARRIOR!!

A friend recently gave her a bracelet that said, “Stronger than the storm”, if we were making shirts this year, this might have been a good one to focus on!  The Lord is gracious and we are so thankful that HE IS STRONGER THAN THIS STORM!!!! ❤ Thank you for the love and continued prayers! We are thankful and grateful.  And, today has been better than yesterday.  And this week better than last week.  Day by day…in HIS GRACE AND STRENGTH!