Welcome to the Adventures of Injectagirl!

Our daughter was diagnosed as Type 1 on May 16, 2016. She is the only Type 1 Diabetic child in about a 50 mile radius of our home. As her mom, I began to scour the internet for resources and encouraging things to help her not to feel alone. I discovered that most things on the internet were geared toward parents/adults. Then Diabetes Awareness Month came around, and Katie was more “out there” on the internet, answering questions and things. As part of celebrating November 14, her older sister did a special superhero makeup look for her…and Injectagirl was born.  We began a YouTube channel, and today we have begun our blog.

If you have questions you’d like to ask, or videos/demonstrations you’d like to see, let us know in the comments!  You can see our YouTube page here, and the Facebook page here.  We are glad you are joining us!

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Going Underground

spyfam

A family photo from a past “spy” adventure. 🙂

How ironic…I just noticed that this blog was begun exactly 2 years ago today. Injectagirl is going underground for awhile. Superheros will do that from time to time, mainly when their real identity is in jeopardy. That is where we are right now.

It is a struggle when symptoms seem so pervasive and overwhelming, not to allow our physical conditions to define who we are. We have devoted much of the past two and a half years to helping our daughter feel empowered in her battle, instead of feeling victimized.  I started feeling a dark cloud coming over both Katie and I during Diabetes Awareness Month. Posting every day about the disease, coming up with new ways to spread awareness, talking about it constantly…on top of how it already dominates our days and nights…I could feel that it was becoming too much.

When we first started Katie’s journey two years ago, it was all new and overwhelming to her and I felt the need to help her get on top of things. Now with the added engagement and the increased vigilance we need to employ as she enters the teen years, it just feels like there is no reprieve…no “normal”. The hormonal soup which creates expected challenges also has a profound insulin (which is also a hormone) issue thrown into the mix, resulting in lots more late nights, additional alarms, even more tweaking to the daily routine. It feels much more moment by moment than meal to meal now. It is much more demanding, so my focus has changed to helping her find her stride, own the repetition and routines as she is maturing, and fixing her focus forward instead of inward, if that makes sense.

Not sure what that may mean going forward for Injectagirl (I suspect her public persona may take on a new face as she is getting older), but I know it’s the right direction for our Katie. ❤

Stay tuned for further episodes in the future from our warrior girl.

We Need Your Support–And It’s Easy!

 

nomorefingerpricksYesterday was the kick-off for Diabetes Awareness Month. I post lots of informative things each day to help inform on Facebook. THIS (below) IS ONE OF THE MOST IMPORTANT ONES. Here’s why.

This is legit. It comes straight from the Dexcom office. Katie got a big package yesterday with #dexcomWarriors in big print on the front. This was inside. Here’s the deal…for every photo or video that is posted on Facebook with “@Dexcom” and the hashtag #nomorefingerpricks, Dexcom will donate $1 to Beyond Type 1! If all my friends on Facebook did this, that would be $714 donated! Imagine the possibilities if the readership of this blog fully engaged! This group has been amazingly supportive of us since the very beginning of our journey in 2016. I’m the parent advocate for Wyoming in their DKA Awareness Campaign.

So, this is effortless. Nearly everyone in my friends list knows how to take a selfie. Know how to write the letter “x”? Then you’re all set! Post a photo or video of yourself with an x on your index finger, tag Dexcom by putting the @ sign before the word Dexcom (with no space between) and include the hashtag #nomorefingerpricks in your post. That’s all. Easy peasy, lemon squeezy! Oh, and I’ve made the privacy setting on this post Public so you can share. Make the privacy setting on your post Public as well so it can be viewed by Dexcom and count toward their totals.

I’d like to ask one more thing. Would you tag me in your post also? On Facebook, I am Diane Cannon Heeney. I’d love for Katie to see all those who are supporting this effort. Please?? 💙💙💙 Here’s to no more poking– #weneedacure

From Katie: “When I see a blue candle…”

bluecandleWhen I see a blue candle, I know what it means. It means that someone else has died because of Type 1 Diabetes. It makes me sad. I wonder if it could happen to me.

When I get scared, I ask my mom. This week she said that none of us knows if we’re going to have another day. Whether a person has Diabetes, or not. Our family just has a front row seat in being reminded that life is fragile because we deal with Diabetes every day.

So we try to be responsible in every way we know how, by:

  • Checking blood sugar levels frequently and keeping track on my Dex.
  • Make sure the alarms are set and working.
  • Surrounding myself with people who support me.
  • Counting carbs carefully so I know how much insulin to use and don’t give too much.
  • Making sure I’m using the right insulin for meals and at bed time and don’t mix up the pens.
  • Paying attention to patterns, like that I drop if I’m cold, upset, or exercise hard.
  • Knowing the signs of high and low blood sugar levels, and making sure friends and family know them too.
  • Knowing the extra stuff to do when I’m sick.
  • Taking our “big kit” whenever we leave the house, which has extra snacks, drinks, testing supplies, insulin, and Glucagon.

symptoms-of-hypoglycemia

We can prepare and be informed the best we can, do all the right things, and still things can happen. Diabetes doesn’t play fair a lot of times. We pray a lot. We pray when we put the Dex on, that it will be a good place for good readings. We thank God that we have it. We pray for Diabetes research, and for a cure–because things like the Dex are so helpful, but we want to see an end to this disease. (You can learn about the significant work of Dr. Denise Faustman and her research here–well worth your funding). I thank God for having another day to live. We pray for T1 kids and families we learn about who are having struggles. Why? Because in the end, we can’t know everything. We are not able to control everything, especially with Diabetes. Sometimes things happen without a reason we can figure out. I know that if something happens, my parents will do everything possible that they know to do, and if God wants to take me to Heaven, I can trust Him and not be afraid. Knowing that God loves me and that I can trust Him means that the devil doesn’t win by making me afraid to do things, go places, have fun, and play. When I wake up, I’m glad I have another day, and I know God will be with me even if hard things happen.

Here is a little video that explains more if you feel afraid:

Love,
Katie

Emergency Lows!

cottoncandyWell, we had a scare the other night, and I wanted to share what we’ve learned in case someone else finds themselves in the same boat.

On one other occasion, Katie came close to mixing up her Humalog and Lantus pens.  They are both sort of grayish, and we were storing them together with all the other T1 supplies.  I should have taken active measures then, but I forgot and it never happened.

Fast forward a couple months. Katie was giddy and distracted because daddy had brought home some squishies for her as a reward for doing a great job cleaning her room. She scampered through the living room, confirmed with me how many units she was to do of her Lantus before bed, and then did her shot. She usually does the bedtime shot in the living room so I can check the pen. This time she didn’t, and it didn’t occur to me until…

“Mom….I…I…did 22 units of Humalog!”

She was teary and petrified. She realized it right away. I ran to the kitchen to confirm it. Yep.

Now what????

My mind was racing, throwing open the fridge and kitchen cupboards to see what we had on hand to load her up with carbs.  She was already only 107 on the meter. Thank the Lord we were able to act on this discovery immediately.  If we hadn’t noticed until her alarms started going off, we would have had an even bigger emergency on our hands.

After I got her started on some juice (when we have double down on the Dex, I always opt for carbs with no fiber, fat, or protein so they have nothing to inhibit the absorption), I called the night time nurse on call at Primary Children’s Hospital where Katie was diagnosed.  I got the switchboard. They told me the nurse would call in about ten minutes.

“Okay, please… tell her it’s urgent.”

Do you know how long ten minutes is in this kind of a situation?

Finally the nurse called. I told her when the shot was given, how many units, what Katie’s BG level was at that time, what her current carb ratio is for supper time (1:20), and what she was drinking right now.  The nurse told me we needed her to ingest 240 carbs to offset the load of insulin.  (To find that, if you need to know, multiply the number of units by the carb ratio….in our case, it was 22 x 20). We got busy.

  • Two juice bags
  • 1 cake gel tube
  • 4 packs of fruit snacks
  • 1 piece of French bread
  • 2 strawberry milk bottles (I gave these after some pure sugar items had been ingested)
  • half a bottle of regular Pepsi

About half way through this emergency menu, she was feeling really sick.  We were afraid she’d toss it all and we’d have no idea how many carbs actually were absorbed before she lost it…and then we’d have to start all over again. Ugh.

It’s hard to take in all of that on a good day, at lunch time. When you are upset and it’s after 11pm, it makes it even harder.  Poor kid.

She rose and dipped on the Dex (thank the Lord we have this tool!), but she never dropped below her low setting (70). What a relief.  She finally had an upward slanting arrow that didn’t tilt down again, after about 90 minutes.

Do you know how long 90 minutes is in a situation like this?

I stayed up for another hour to make sure her BG was steadily rising and not going to play any more nasty tricks on us.

So. My take-aways from this event:

  • Always have carb dense foods on hand for emergencies. Thankfully we had plenty.
  • Cake gel sounds great in theory…compact and easy to dispense especially when your T1 is not responding well; but at only 14 carbs a tube, I think there are better ways that aren’t so nasty to use if you need to carb load.
  • Always call the endo/nurse (call after you’ve started your carbs) to run the stats by them and so they are aware.  We were rattled and underestimated the carbs Katie would need to cover the insulin she’d injected. The nurse also reminded me of the mini-Glucagon protocol (we had our kit out and handy, believe me) in case Katie could not take in all the carbs necessary.  You can download Libby’s free Glucagon free app here, which walks you through the whole process with animation and audio. Very helpful.
  • In rehearsing this at T1D Mod Squad on Facebook later, cotton candy was suggested by a number of members as a go-to.  Brilliant!  The 2.5 ounce bags of Fluffy Stuff are sold at Dollar Tree and they have a total of 71 carbs for the bag and a long shelf life. As you know, cotton candy dissolves almost instantly in the mouth so you get all the carbs without all the volume to cram into a little tummy.  I have 5 bags on hand in the kitchen now.
  • To prevent the mixing up of pens again, I’ve done two things.  I wrapped a hair tie around the Lantus pen so it just feels different.  I actually slid the hair tie over the dial of the pen so it has to be consciously moved out of the way to turn it. I’ve also begun keeping this on my bedroom dresser, far away from the Humalog pen.

I hope you never have to face this, but if you do, I trust this might help.  Blessings!

 

Autoimmune Disease: How Being Misunderstood Has Helped Me Understand

syringediabetessugar

This isn’t a rant. Rants and/or venting are not constructive. What I am doing is advocating for those who may not do so for themselves. Educating for those who may be willing to listen.

If you are a MOD (mom of a diabetic) as I am, you know about the misconceptions, pre-judging, and misinformation/ignorance about autoimmune conditions. You’ve no doubt answered many times over all the questions about getting Type 1 Diabetes from eating too much sugar, from being “lazy”, or some other fictitious origin.  You know what it is to continually redefine the vast differences between Type 1 and Type 2. You have tried as politely as possible to thank people who genuinely care who have loaded you with ideas for cures ranging everywhere from cinnamon to okra. Your child will probably answer the same questions for the rest of his or her life, because those memes (you know, those memes) will probably never go away.

Studies have seemed to show some correlation between parents who have autoimmune conditions and autoimmune conditions (identical or unrelated) then showing up in their children.  I’m one of those parents.

In my teens, a dermatologist spotted some spots which needed attention, later removing them and determining they were precancerous. I’ve had many such areas treated since then. I’m wary of being in the sun and sunburns. I choose not to be in the sun most of the time.  In my younger years I’d spend almost all day at the pool, noon until supper time or later. Those days are long gone. I feel even more negatively about the chemicals in sunscreen now than I do about chancing a sunburn!

In my mid-20’s I came down with “mono” (Epstein Barr virus) and missed a week of work. When I felt recovered, I went on with my life, only to have it reoccur about 5 months later.  I rested. Felt better.  Then it began making repeat “guest appearances” periodically, resulting in marked fatigue, a constant body temp of around 100, aches and pains.  I now deal with it more often than I don’t.  In the summer I live in air conditioning. I can’t bear the heat.  Gone are the days of the vibrant, energetic summer camp counselor. If I get any sort of exercise done, it’s remarkable. Some days it’s all I can do to blow dry my hair without sitting down to rest. If I can stay on top of chores, it’s gratifying. If I ever do both in the same day, it’s miraculous and I’m grateful!

Sometimes trauma can be a trigger in the onset of the symptoms of a latent condition. That was true in my case. I can trace the appearance/escalation of various things such as profound joint pain, fatigue, random fever, lymph inflammation, muscle pain and cold sensitivity almost directly to this event. Examining the health history of my parents, I think I was already predisposed toward fibromyalgia (which research is showing has a direct correlation to SIBO) and I’m taking some steps toward healing based upon this information.

Through the past couple of decades I’ve experienced people asking why I’m “so pale” or “sickly” and asking why I don’t just “get outside more”.  I’ve had people wonder when I don’t participate in things much outdoors in the summer (mercy, some days my body temp is already at 100!) or why I’m still in my pajamas in the middle of the day. Years ago, I had someone inquire why I was still dealing with Epstein Barr, when they had mono as a kid and were done with it.

So, yes, I have a heightened understanding (which I count as part of the “for good” in my own health journey) about what our daughter experiences when kids look at her Dex funny or gasp in horror when she needs to inject insulin, or when adults give her a sideways glance when she’s allowed to have cake at a party. I also understand the exhaustion of feeling compelled to explain but at the same time knowing that, more often than not, others have already made up their minds about what they think they know.  It is frustrating.

I share all this to say…never underestimate the importance of community for your T1 kids. Provide connections for them somehow, some way, with others who “get it”, and who require no back story, no explanation, no justification.  It’s important.  It’s freeing. Our opportunities locally are few, so I’ve tried to create some online  for our daughter via her YouTube channel and other resources.  She needs “her people”.  As much as we want to give her the life of a “normal” 12-year-old girl…diabetes has created a new normal for her. So we look for ways to adapt. One thing I have recently been learning more and more about is what Beyond Type 1 does in support of families and kids, and found this great page of posts.  I may start having Katie write some pieces to submit as part of her school this year (double WIN!).

I’d love to hear how you have found ways to make connections for your kids in the Type 1 community. Please share below!

 

Injectagirl gives you the 411 on the 2018 KD Foundation Color Rush!

We did this video as a FB Live, but wanted to include it here as well. All the details of the event are included…I hope to get some video on location on May 12!  Please pledge if you can…this is a great event, and a wonderful organization to fund. Your donation $ stays local…no skimming! Katie and her Dad did this last year, which I posted about here. If you’re local, come join us, friends!

Go here to visit the KD Foundation FB page.  There is a pinned post at the top of the feed, where you can find the “Donate” button:

KDdonatescreenshot

Caregiver Stress: “I don’t want to survive –I want to live!”

I know what it is to feel tired, because you are genuinely tired. Being a T1 caregiver means lots of  late nights and/or sleep disturbances because of the anticipation of impending needs. Compound that with the extra weighed-down feeling of the stress of being a 24/7 pancreas, and you will quickly find yourself in a downward spiral. Our spirits are sanctified, but our bodies aren’t yet. They struggle to cope. But friends, there are things that can help tremendously. I’m stepping onto the pavement to the road to recovery myself. Years ago, I was one who walked or biked 3 miles a day and did a regular exercise/weight training regime. The years have worn me down. Crazy cortisol levels have done a number on my health. I’m probably in the worst shape physically now that I’ve ever been and had a wake up call the other day when I actually viewed some video footage from our recent Dexcom trip to Atlanta. I didn’t know that woman I saw. She looked like she was trying hard to be animated and muster up a level of energy which had not been experienced for a very long time.

I went into our daughter’s autoimmune journey with Type 1 Diabetes already navigating a multi-level autoimmune journey of my own with arthritis, Epstein Barr, and fibromyalgia. So, having survived this long is a testimony to God’s sustaining grace, giving me His promised strength in my weakness.

I’ve started to take some measures to find health for myself again.  I thought I’d share some of those tools here, in case they might be a help and encouragement to someone else.  This whole package is no surprise to God. They say “if He brings you to it, He’ll bring you through it” by His all sufficient grace. I know God is always purposeful, so while I’m investigating what He wants to accomplish in our lives through this journey, here are some ways He’s providing to bring me through:

  • Vitamin D3 supplement
  • Turmeric/Curcumin supplement for inflammation
  • Omega 3 supplement
  • A “greens and protein” breakfast shake made with unsweetened almond milk (with a few berries tossed in) plus more water and less coffee (my survival juice in the past)
  • Probiotics (because the gut is the headquarters of the immune system)
  • Calm Magnesium supplement
  • Some slow, gentle activity including some kind-to-the-weary-body exercises as well as stationary bike and Atoning Yoga (which is not eastern empty-your-mind meditation but rather biblical fill-your-mind meditation)
  • Little tools like this from the Calm FB page can be surprisingly relaxing
  • Reminding myself of the truths in this article on turning off the stress response
  • Listening to this biblical mediation mp3 to “think on these things
  • Getting a handle on the inflammatory response in my body by pursuing this nutritional lifestyle

These are some helpful things you can consider if you are feeling like this (as I do!):

What have you tried which has helped you stay healthy? Share below!