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My Silver Lining

Posted on February 28, 2022May 6, 2022 by thediabeticjourney.com

My Silver Lining

Having this disease for so long I’ve noticed that I’ve grown accustomed to this “normal”. Being told “you have it good, at least it’s not cancer” and that pains me because I often feel like my struggle doesn’t matter. I then question my attitude towards this disease, whether I’m capable, whether I’m just ungrateful.

But in all honestly, this disease is hard. Not once in awhile… But. Every. Single. Day. Nowadays I just feel like I’m on autopilot. I’m not one to sit in sorrow. I know there’s many who have it far worse. I’m blessed to be typing this and sharing my story with the world. But for not one moment will I forget the horror I have witnessed. The nightmares I’ve experienced that were actually real. I’ve been in lows so deep that if you would have pinched me, I wouldn’t have felt it. Highs were I was in DKA and my body was depleted and fighting to gain energy.

Every experience, every nightmare, every close call has taught me a lot about myself. I’ve grown stronger than I could have ever imagined. I enjoy the simple things in life. I appreciate the devices and insulin that keeps me alive. I thank god every morning I wake up, and get the opportunity to kiss my children. Some may think that seems awfully dramatic. “It’s a manageable disease…” Yes, it’s manageable but any minor slip up and it can be catastrophic. I walk a fine line everyday. I respect diabetes. I hate it, but I’ve learned to take control over it and not let it control me. And to never take life for granted.

At this point in my life, I know I could go on and live happy and manage this disease as best as I can, and not really speak about it. But I’m tired. And I know others are tired too. When you put years of sleepless nights, no days off, the rollercoaster ride all rolled into one, it takes a toll. I can put my happy face on and pretend everything’s okay, but there’s going to be days when things aren’t exactly okay, and that fight will never end until there’s a cure.

Some days it does feel like it’s all too much. Like I’m a hamster on a wheel. Wondering where the finish line is. So that I can finally let all my worries escape me. I’ll admit the internal scars of this disease has shaped me. I don’t know who I would be if I didn’t have diabetes. Sometimes I think I even feed off of it. It keeps me grounded. It’s given me the utmost compassion and empathy for others. I’ve endured the worst but I’ve also experienced the absolute best in this life.. and even more so to come. And with this journey, while immensely chaotic, is my silver lining.

“We are the silver lining in any and every dark cloud we could ever find. There is no need to go looking for the light when you bring it with you.” —Tyler Knott Gregson

The Tribe Of The Unglamorous Heroes Of The Night

Posted on February 23, 2022June 29, 2022 by thediabeticjourney.com

The Tribe Of The Unglamorous Heroes Of The Night

- Written by Michellè Dreeckmeier

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Last night I probably saved our daughter’s life.

It was not the first time I had done that.

And neither would it be the last.

Do you want to know what it feels like being dubbed a so-called ‘life saver hero’?

I’ll tell ya. It feels (unglamorously) TIRED.

My ‘heroic act’ – if you want to call it that – comes wrapped in a frenetic package made up of a malfunctioning organ, erratic sleeping patterns, math, carbohydrates, pajamas, insulin, alarm clocks, blood sugars, quiet wee hours of the night, a bad case of bed hair, worry, the promise of a manifesting head-ache the following morning and a young brave person who is inestimably loved.

I am the mother of a daughter who has a chronic, life-threatening, high maintenance, autoimmune disease for which there is no cure…yet. Without any warning our daughter’s body turned on itself and killed off almost all of the insulin producing beta cells in her pancreas. The result: erratic blood sugars which (drama alert) could potentially take her life without much notice. It was two years ago when we received this diagnosis which we wish weren’t: our 11 year old daughter was diagnosed with Type 1 Diabetes. In that single moment our lives changed forever.

Since that day our daughter has been called:

BRAVE.

COURAGEOUS.

A HERO.

A WARRIOR.

I too use these words when referring to my daughter. Because in my eyes she certainly is all of these things – as is every person living with Type 1 Diabetes.

Each day my husband and I act mostly as standbys – we offer our support wherever and whenever she requires or might need it. Our daughter prefers to manage this complicated autoimmune disease mostly on her own. She’s been like this forever. Independant. Self-reliant. Responsible. Conscientious. She is so (wait for it) BRAVE and COURAGEOUS.

At nighttimes, when she sleeps, we take over and monitor her blood sugars and keep her safe. She needs her rest and we are thankful to do this for her. And since a (much desired!) continues glucose monitor is not covered by our health insurance we get to be on ‘night time pancreas duty’ every single night.

My husband and I have been dubbed brave and courageous heroes as well. Yet, owning these words does not seem real and neither do we feel worthy to be even called that. Let me be clear, my picture of a hero most certainly does not match the tired individual with weary eyes who stares back at me in the mirror in the morning after one of those D-nights. None of our family pursue or aspire to the title of courageous, brave hero. We just do what we have to do to keep our daughter safe and alive.

What we do chase after, however,

is LIFE,

and the HOPE for a cure.

D-life is not about titles and labels and feeling brave and courageous and parading around like hailed surviving heroes. There certainly is no time for that! And even though I myself call my daughter a brave and courageous hero I am very aware that she more often than not does not feel like she is any of those things. In the end it comes down to LIFE and living it to the fullest, and enjoying what life offers us in the gift of FAMILY, the gift of TODAY, the gift of NOW.

Like me sitting here, in the NOW, typing these words while drinking a big mug of strong caffeine laden coffee. Because I am a D-mom. Who slept little last night and now own a pounding headache but, thank GOD, did caught an awful episode of hypoglycemia just in time before things got really ugly last night. This cup of coffee may as well be a glass of champagne. Because despite me losing hours of sleep each month thanks to Type 1 Diabetes I am so very thankful that I did caught last night’s unforeseen and unexpected hypo since I almost opted to not check her blood glucose during that specific time slot. I prefer to not ponder any further on the ‘what if I didn’t’ scenarios pertaining last night.

Right now, for a brief moment, I will silently acknowledge the following to myself: Last night I probably saved my daughter’s life. I fought Type 1 Diabetes and I won that round. And because of that my daughter woke up this morning and I am now the proud owner of war scars in the form of exhaustion which will last for the remain of this day. But thanks to the gift of coffee and GOD I will prevail.

During nights like last night I often like to remind myself that I’m not alone. Somewhere in the quiet of the night there are other parents who also fight for their child’s life, sustains them and help keep them alive and safe.

It might be a different disease or a disability or another condition but ultimately we are fighting the same fight.

And to that I raise my big coffee mug and declare:

Here is to us, the tribe of the unglamorous, reluctant heroes of the night who fight battles of life and death in our pajamas.

Trying To Manage a So-Called Manageable Disease

Posted on February 21, 2022June 29, 2022 by thediabeticjourney.com

Trying To Manage a So-Called “Manageable Disease”

By: Amy Waddington

“It’s a manageable disease”. Yes, it’s manageable…but it’s also ugly, hard, and exhausting. From the time he wakes up till the time he goes to bed we think about diabetes, what we’re going to eat, when did he eat last, what are his numbers, why does he look so tired and worn out.

Oh nooo, I hope he isn’t getting sick. Navigating through high & low blood sugar throughout the day is SO much more then the number. It effects his concentration, vision, causes fatigue, makes him irritable, and have daily flu like symptoms, as his blood sugar fluctuates.

Every single day he battles and our days are full with “managing the disease”. Like the moment I suddenly realize I haven’t heard from my son for a couple hours and I’m 45 minutes away. So I check the app on my phone that gives me a peek at his blood sugar and there is no reading.

Not only is there no reading but there hasn’t been one for hours. How terrible of me to not catch this sooner. I desperately try calling him. But he’s not answering his phone, and I’m unable to get a hold of him.

The panic sets in…”is he ok?!?!” Is he passed out needing me to come to his rescue????” That’s the thoughts that go through my head. I call every single neighbor until one finally answers and graciously runs to the house to check on him, all while he is swimming in the backyard with his dogs.

Then there’s having to watch my teenage son turn away food because he wants to maintain his current blood sugar. He’ll sneak treats because all he wants is a piece of candy or a bag of chips. But knows he shouldn’t have it because at the moment he is “too high” and although he craves it, he can’t have it. It’s heartbreaking.

We’ll be enjoying a day at a Theme Park and my son will be under a shade tree because he is down with low blood sugar from all the activity. And now he needs to eat some more, rest and wait for it to go back up again. So he can get his color and life back in him and maybe enjoy a few more hours of fun he desperately needs.

Then there’s me sleeping with one eye open. Constantly peeking at my phone to reading his blood sugar because caring for a child with type 1 diabetes is 24 hours a day and 7 days a week. There are no breaks or end to my worry. So yes, “it’s a manageable disease” but please don’t tell me that because we already know. We manage it every single minute of every single day.

My heart behind sharing about Ashton’s Type 1 Diabetes is to educate people about the disease. My hope is that we would continue to be transparent and authentic while spreading as much awareness as we possibly can. If you know of anyone living with a chronic disease give them some extra grace maybe even take a few minutes to give a high five, thumbs up or take the time to encourage them.

How's God's Plan Helped Save My Daughter From Going Into DKA

How God’s Plan For Me Helped Save My Daughter From Going Into DKA

Posted on February 18, 2022July 22, 2021 by thediabeticjourney.com

How God’s Plan For Me Helped Save My Daughter From Going Into DKA

By: Jamie Smith

Most stories of diagnosis of Type 1 diabetes begin with a critically ill child and a diagnosis of DKA. Not my little girl, Mia. But to properly tell the story, I must take you back to 2001.

Long before she was ever even dreamed of. My son was born premature and his life was saved by Karen, a critical care transport nurse. Like most parents, I made deal after deal with God in exchange for my son’s life. I watched him fight while on a ventilator and heard God tell me to become a nurse. I listened.

I decided that I wanted to give back in honor of Karen and to honor the deal God had made with me. Fast forward 11 years, I was working as a critical care transport nurse. My daughter had just turned 2 years old. I noticed that she seemed to always want her sippy cup. Then she began waking up in the mornings completely soaked with urine. Her diaper would be full, pajamas soaked, crib soaked. I tried decreasing her fluids in the evening, but she was so thirsty.

Early one morning, about a week after these symptoms had begun, I was getting ready to leave for a 24hr shift on the critical care ambulance when my nurse brain finally clicked: check her sugar. I happened to have a glucometer at home, so I checked her - she was 203. Hmmm… So I called my endocrinologist (I had Graves’ disease at the time) and told him what was going on with Mia. He reassured me, said it wasn’t high enough to be diagnostic, she could just have an ear infection and to check her again the next morning when I got home from work.

The next morning, I rushed home and Mia was still sleeping. Good, I thought, this will be a fasting blood sugar and it’ll tell me more. She was 436. I packed her bag, packed my bag, and we headed to our local ER. I called the transport company to give them a heads up about Mia’s inevitable transfer to Nationwide Children’s Hospital, I called the ER and let them know we were coming. I hadn’t even changed out of my uniform. I held my listless daughter on my lap and watched as they stuck an IV; she never even so much as whimpered. Her sugar came back at 462, but she was not acidotic.

In the meantime, the critical care transport company I worked for had been called on another run. Nationwide Children’s said they could send their critical care truck, but it would likely be 5-6 hours. The endocrinologist from Children’s asked the ER doc if he thought I’d be willing to ride in a regular medic truck as the nurse thus making it a critical care truck. He said yes, absolutely she will (I forgot to mention that I used to work as a nurse in this ER and knew the staff very well.)

So that’s what I did. It came full circle. The deal I had made with God about giving back and becoming a nurse had helped to keep my daughter from becoming critically ill with DKA. The endocrinologist at Nationwide Children’s gave me a hug and told me if I wouldn’t have caught it when I did, she would’ve been in DKA within the next 24 hours.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

My daughter was diagnosed with Type 1 diabetes at 2 years old. Today, she is an extremely smart kindergartener who is in the accelerated reader program. She wears an Omnipod and a Dexcom. She doesn’t let it slow her down and she has even made a YouTube video teaching others how to check their blood sugar. Her best friend is another little Type 1, Mady. She is an inspiration to so many and is loved by everyone who meets her.

—

Know The Symptoms Of Type 1 Diabetes, It Could Save a Life:

To Every Warrior Battling Diabetes, This Is For You

Posted on February 5, 2022June 2, 2022 by thediabeticjourney.com

Hey warrior —

I just want to say you’re doing amazing! Even on the days you feel weak. The days you feel tired. The days you feel you’ve had enough. Especially on those days because that’s when you’re fighting your hardest. Your vulnerability and even your weaknesses make you strong. Make you powerful, resilient, unstoppable.

You’ve made it thus far. I mean look how far you’ve come!

Whether you’ve been diagnosed for a day—a week—1 year—5 years—20 years, you’re beating all the odds against you heroically. You continue to hold the weight of the world on your shoulders day in and day out with such profound grace and humility.

Don’t let those crazy numbers that show on the blood sugar meter discourage you from your success.

I’m sure you might see at least one “high” or “low” number today. If so, keep going. If not, keep going. Either way, you’re winning because you don’t let diabetes stop you from living.

Those needles that create those scars? Well, they tell a story.

A story about how you wake up everyday to fight the same demons that left you so tired from the night before. You should never be ashamed because it just means that you are stronger than diabetes—and you have the proof to show for it.

Next time you go to take your insulin—just know you’re not alone.

Try to not to let the fear overwhelm you and dwindle your spirit. This is an incredibly difficult and daunting challenge. Where you don’t always know what’s ahead. But you were given the strength to face this challenge. Just take a moment and marvel at what an amazing gift it is to just be alive. To be all that you can be. Go show the world how you live beyond this disease because it doesn’t define you.

Ask yourself today –

“How you can use this disability to empower others?” How can you turn a negative into a positive?” Be bold enough to raise your voice. Speak for what matters, speak for others who don’t have a voice. Be the light in someone’s darkness. Use this as a higher calling for that there is a purpose in your struggle and all that you go through. Take the reins—because today you got this!

You are amazing.

You are heroic.

You are a warrior.

How The Dexcom Has Changed My Life With Diabetes

Posted on October 12, 2021February 4, 2022 by thediabeticjourney.com

How The Dexcom Has Changed My Life With Diabetes

I remember life with diabetes before I had “beeps” and “alarms” going off reminding me that my sugar is (low) and that I need to eat something.

I remember being so blindsided by a low blood sugar, where I’ve gone unconscious.

I remember having to go to bed hoping and praying that I wake up in the morning, and not knowing if my blood sugar would withstand the night.

I remember the fear so vividly, and not just my fear..but my family’s as well.

It wasn’t until a year ago when I started on the Dexcom (CGM) — only a year! That means I’ve gone without a continuous glucose monitor for 13 years with diabetes. And now I can’t imagine living without one.

No — it’s not a cure. I still have a broken pancreas. I’m a Type 1 Diabetic. I still have to count carbs, calculate how much insulin to administer myself and check my blood sugars manually to make sure the Dexcom is giving accurate readings.

But this acts as a “safety net“. So much can happen between normal blood sugars checks. That even a 20 minute period can be a very crucial time for a diabetic. It sometimes can even become a life or death situation if not treated in time.

The Dexcom lets me know where my blood sugar is trending and how quickly. Sending me alerts when it’s dropping or rising rapidly and when it reaches dangerous levels.

This device has changed my life, despite being an imperfect technology system. I can almost guarantee that it has likely saved me from many life-threatening events. While I still have the burden of diabetes on my shoulders, I don’t have the immense amount of fear at all times. I now have some peace of mind where I can be more productive.

Now having a family and children — this device has given me a new life. A better life. A safer life.

While I am fortunate enough to be able to obtain this medical device, this is not the case for every diabetic. I truly believe everyone should have access to this! This is not a want, it’s a dire medical necessity for those who battle diabetes.

The Diabetes Rollercoaster

Posted on August 17, 2021January 13, 2022 by thediabeticjourney.com

The Diabetes Rollercoaster

Yesterday I had a day that was one of many. A day where nothing seems to go right. Where I feel like I’m being defeated. Where I feel physically debilitated and mentally distraught. The days where I don’t feel like going through the motions. Where I feel victimized, more so than any other day.

Almost like diabetes is picking on me.

When even though I feel like I’m fighting my hardest, I have to find that extra bit of strength to fight even harder.

I had a day full of erratic and irregular blood sugars. From hyperglycemia to hypoglycemia. Blood sugars that wouldn’t go down due to insulin resistance, and blood sugars that would come down involuntarily hours later. This is what I like to call the “diabetes rollercoaster” effect.

This diabetes rollercoaster ride isn’t fun by any means. It’s rather exhausting and nauseating actually. It’s unlike normal amusements park coasters, where normally there is some excitement and then an end. However, this rollercoaster has no end and keeps on going. I’m not able to throw away my ticket and get off.

If it couldn’t get any worse, my moods shift constantly as well. The way I feel on the inside comes out unwillingly shows on the outside. I’m frustrated with myself as to why I can’t control this. Why does this disease have the ability to make me feel this way? I wish I could go a day without paying any mind to it. I could turn off all the alarms notifying me, do without thinking, and not feel this heavy burden on my shoulders.

I think what bothers me the most is that diabetes lets you think you have everything under control and then reminds you that you don’t. That even though I can do the same thing over and over again, I may not receive the same results.

I often wonder when will this end, when will I feel normal again? I’ve had diabetes for so long that all of this craziness is second nature to me now. Regardless, I just want off of this ride that I’m on. I want days where I’m not fighting for normalcy, that it’ll just come effortlessly.

When I think about how or why I’ve gotten on this diabetes rollercoaster ride. Having to endure all the highs and lows. That maybe this defeat is meant to push me and strengthen me to push forward. Knowing that the struggle that I’m in today shall pass. All I need to do is to surpass all these obstacles and hang on for dear life. Hopefully, then all of this will pay off one day I’ll be able to get off this crazy ride towards a long-awaited cure.

Why CGM Coverage Matters To Me

Posted on July 20, 2021January 13, 2022 by thediabeticjourney.com

Why CGM Coverage Matters To Me

Continuous glucose monitoring (CGM) has been becoming more widely used by diabetics. There’re a few different companies who supply it. I, personally use the Dexcom. I only starting using it a year ago during my third pregnancy. I’ve always been a brittle diabetic who has hypo unawareness. So my doctor suggested this device to help keep a close eye on my blood sugars while relieving some uncertainty.

At first, I will admit I was hesitant to start using something new. I thought I had too much to juggle already. Taking insulin—checking my blood sugar—and raising children. I knew this wasn’t a cure. Was this really going to help? I will say that it absolutely has helped! This device has changed my life! I wish I knew about it sooner. Now I can’t even imagine my life without it.

Why CGM Coverage Matters To Me:

1. Fewer fingersticks

I went from checking my blood sugar 8-10 times a day, now down to 2-3. It’s given me freedom to not have to “think as much”. The CGM goes everywhere with me. It’s reassuring knowing it’s there to alarm me of my blood sugars especially when exercising, driving, and out of the house. I no longer have to drop everything I’m doing to see what my blood sugar is. I only have to calibrate it twice a day to make sure it matches up with my fingerstick blood sugar meter. It gives me the knowledge of what my blood sugar is at all times and the trends throughout the day.

2. Safety net

Having the CGM gives my family the reassurance that I’m okay throughout the day. When I don’t answer my phone, for instance, they can check on the Dexcom share app and see what my numbers are. The receiver alarms me if my blood sugar is low or high. The issue I had prior to this is I would go from 120 down to 50 in a matter of a half hour, and not even realize it. This has helped prevent many hypoglycemic episodes beyond belief. Granted—this isn’t always 100% accurate, but only by 20 points from my finger stick meter.

3. Feeling in control

I use the CGM in conjunction with dosing my insulin. I no longer have to make sure I washed my hands thoroughly in hopes of getting an accurate reading on a normal blood sugar meter. This is constantly attached to me (besides the 2-hour warm-up) and is constantly supplying me with readings. Once taking my insulin, I’m able to see how accurate my bolus amount was to what I ate. In a normal occurrence, without the CGM, I’d often give myself too much insulin and risked hypoglycemia without knowing. This device helps prevent DKA, seizures, and other diabetic related emergencies.

While in modern day diabetes care we have advanced so much. But we continue to battle with insurances covering this device as deeming not medically necessary. It’s been announced that the FDA will be having a meeting on Thursday, July 21, to discuss CGM access and approving CGM as the replacement for insulin dosing.

Why is this so important?

This will take prominence over fingersticks for its given accuracy.
More Insurances including Medicare will be more enabled to cover this device.
This is a breakthrough of what’s to come for the future in managing diabetes.

Why CGM Coverage Matters To Me…

I could never go back to the day before I started on the Dexcom. It’s given me a better quality of life. I feel freer and I’m able to relieve some of the stress that comes from having to manage this disease. Replacing CGM over fingersticks is so important—this will help this device become available to so many more people. I strongly believe in having CGM coverage for all.

Why Managing Diabetes Is A Full-Time Job

Posted on April 18, 2022April 11, 2022 by thediabeticjourney.com

Why Managing Diabetes Is a Full-Time Job:

I don’t think ‘we‘ as diabetics give ourselves half the credit that we should.

After all.. managing diabetes is a full-time job.

Having diabetes is like running a marathon where there isn’t a finish line.

Some days you’re keeping up to pace, and other days you’re falling behind.

It’s an around the clock job. No days off. No vacation.

You can’t forget about it and come back to it later. (Even if we wish we could).

There are days where diabetes gets unintentionally placed on the back burner.

It get’s mentally exhausting and we go through periods of feeling burnt out.

Maybe it would be easier if managing diabetes was all that we had to do.

But it’s not.

Then comes life.

Having to go to work—go to school—raise a family—and the list goes on.

It’s not ALL about “managing diabetes“.

It’s managing life on top of it all.

We tend to be hard on ourselves.

We forget that we’re only human—we’re imperfect.

We’re not always going to have the “perfect blood sugar“.

We’re going to have bad days where nothing seems to go right no matter how hard we try.

But we embrace each day with its own challenges and it’s own variables thrown at us.

We don’t get a paycheck.

We get an evaluation test called an A1C.

Sometimes this test doesn’t justify all the blood, sweat, and tears we put into this disease.

7 days a week—365 days a year

We feel a lot of pressure to do well.

For our health—For our loved ones—and for our future

Sometimes we think “what do we have to show for it?”

“When will this all pay off?”

That answer is ‘today‘

Through all the frustration, grief, and exhaustion we experience.

We have today.

We may have one of the hardest full-time jobs.

But we have control over diabetes.