diabetes management Archives - Page 2 of 3

Tag: diabetes management

What a High Blood Sugar Feels Like

Posted on April 8, 2022June 20, 2022 by thediabeticjourney.com

What a High Blood Sugar Feels Like

The high blood sugars are what gets me. A high blood sugar is a blood glucose above 140 mg/dL. For me, the symptoms I experience with severe hyperglycemia don’t emerge until well over 250-300 mg/dL. The lows, while urgent and intensely serious are felt differently. I don’t like to compare the two evils but the highs can be just as debilitating and it leaves me feeling depleted.

It’s so hard to describe this pain that can’t be seen. I look fine on the outside but inside my body is fighting for energy and I’m suffering from the adverse effects.

In these moments all I want to do is cry but I have no tears. I can’t quench my thirst no matter how much water I drink. My whole body aches and I’m staring at the clock waiting for the insulin I’ve given myself to be absorbed; giving my body the relief and nourishment that I desperately need.

When my blood sugar is high I despise diabetes the most. When it’s high the minutes and possibly hours it takes for my blood sugar to come down is agonizing. I sit uncomfortably, restless, back and forth to the bathroom checking for ketones and blaming myself. When I know that with diabetes anything is possible. It’s absolutely torturous for anyone to have to go through this.

My heads pounding, I’m irritable and utterly exhausted. I feel like I’m being crushed by tons of weight. It feels like syrup is running through my veins. I can’t move. I can’t think. I can’t function properly. I feel useless. These are the moments that I beg and plead to just get back to where I was before the high blood sugar. I become grateful for the bad days that weren’t as bad as this.

The high blood sugar could have been caused by a pump malfunction, hormones, stress, illness, wrong dosage, or any number of different things. The fact that things I can’t control can cause this is startling and frustrating. All I can do is try my hardest and hope for the best. But sometimes my best doesn’t cut it.

Once my blood sugar does start to lower I feel like I’m taking in a breath of fresh air. There really isn’t a better feeling than knowing I’m going to feel better soon. That these symptoms are going to diminish and I’ll start to feel myself again. My mood starts to shift and the brain fog slowly goes away. The exhaustion lingers for the rest of the day, but thankfully I’m much better.

I feel conquering despite my defeats because even at my weakest points I still fight these unfathomable challenges. These battles are never seen nor felt by anyone besides those who battle diabetes. One that I’ll have to fight more than once.

— DKA is a serious life-threatening medical condition caused by high glucose levels. This blog content is not medical advice. If you have questions concerning your health please seek attention from a medical professional.

Pregnancy Week 15 with Type 1 Diabetes - Perfectionism vs. Sanity

Posted on April 4, 2022 by thediabeticjourney.com

Pregnancy Week 15 with Type 1 Diabetes- Perfectionism vs. Sanity

By: Grace Wall

Follow: Type 1 Pace Blog

There have been studies that show girls and women with type 1 diabetes have a stronger chance of developing an eating disorder. Type 1 diabetics are constantly counting and measuring food, and measuring their level of success at managing diabetes (which is impossible to get right all the time) multiple times a day through a number on their blood glucose meter. Constant cognizance of being evaluated and judged on how vigilant we are with food, with exercise and with diabetes management is not always best.

I think it was around the time I was diagnosed that I developed perfectionist tendencies and the need to control any situation. I was ten years-old and diabetes honestly didn’t seem like a big deal to me. Adults were always telling me new things I had to do: you need to brush your teeth, you need to set the table, you need to go to summer running camp, you need to come home when the streetlights come on, and now you need to check your blood sugars and take insulin through a syringe. It didn’t phase me.

That is, until I saw when my blood sugars were out of range, worry would appear on my parents faces. When my blood sugars were good, they would proudly pat me on the back. I saw what grief I caused them when my blood sugars were out of range and I made it my goal to get as close to range as I could.

But how could I? I didn’t have the technology we have now. It took my meter 45 seconds to register a blood sugar! I began to feel lots of shame when my parents would look at my sugar log and ask about different patterns. They were only concerned and I took it as something I had done wrong. But I did nothing wrong. I did not cause my diabetes. As an adult, nineteen years later, that sentence feels cathartic to type.

Fast forward to present day. I am in my 15th week of pregnancy with my first child and I have never tried so hard to manage my diabetes. In the beginning every time my blood sugar would go over 140 I would feel guilty, but I have learned to use the reading as a tool that indicates I need to adjust my insulin needs for tomorrow. I have found it helpful to take a walk when my blood sugar is high and have already given insulin to correct it. It speeds up the absorption rate, and my dog doesn’t mind all the extra walks he’s getting!

I did have one scary day last week where I was 240 for 4 hours and I could not figure out why. The day before I had spoke with my High Risk OB/GYN about some high blood sugars which he believed just meant the placenta was doing it’s job and (here’s the fun part) starting to work against me by creating insulin resistance.

But this particular high event was not coming down with insulin or walking. I was freaking out to say the least and feeling more guilty I was hurting the baby with each passing minute. Of course it was a busy work day too so that did not help. I had a pounding headache, had to go to the bathroom close to every 5 minutes and felt nauseous.

Finally I realized my insulin pump infusion site had disconnected. Not fallen out, just unhooked the quarter of a turn it took for me to get none of the insulin I had been pumping the last few hours. I immediately reconnected and bolused for 7 units. I felt more guilty for being so stupid. In my 17 years of using an insulin pump, I hadn’t had this happen once. I have had my site completely rip out, but this was inexcusable in my perfectionist book.

As I began to reframe the situation, my guilt and anxiety tapered. I rarely wear my site on my stomach, which is where it was at the time, and as my stomach has gotten larger with a growing baby the last few weeks, it has created a variable I have not encountered before. I am getting used to my new body and I may have accidentally bumped my site.

I have also been wearing maternity pants and the waistband on those are great for growing bellies, bad for holding up pumps. Going to the bathroom throughout the day creates multiple opportunities while pulling down and pulling up those pants, where I could have knocked something loose.

The guilt of that high day registered through the roof for me. I remember feeling so defeated. However, I also recognize that I am only human and I am doing my absolute best for this baby. I think it’s truly impossible for me to try any harder (I have given up chips and salsa, pizza, diet Coke and beer for God’s sake!), and that is why I am letting it go. My husband calls it “clearing the mechanism” and it’s what we do when we come home and need to just forget about what happened at work that day. I am “clearing the mechanism” on this hyperglycemic episode and starting fresh tomorrow.

My team of High Risk OB/GYN’s have told me that I don’t need to see my regular OB/GYN any more. I ignored that and have kept seeing her. I like her - A LOT. She helped me through my first and second miscarriages and always has great things to say. She is a realist, which I appreciate.

On my last visit with her she told me I’m doing a great job with the pregnancy, the diabetes, running while pregnant, and everything and told me I need to stress less and start enjoying the pregnancy, because it’s going to be over before I know it.

I will continue to be diligent with my blood sugars but she’s right, I plan to start enjoying the pregnancy more. I plan to be value my sanity over my guilt and stop being so hard on myself. I’ve lasted almost 19 years with diabetes and if this baby is anything like it’s parents, it’s a fighter and it will be healthy and happy.

Taking Breaks From The Diabetes Technology

Posted on March 29, 2022March 29, 2022 by thediabeticjourney.com

Taking Breaks From The Diabetes Technology

By: Randall Barker

My daughter, Emma was diagnosed with Type 1 diabetes a little over 3 1/2 years ago. Being a diabetic myself, it was a moment that has brought us significantly closer. As she was choosing which glucometer she wanted to try out among the countless choices offered to her by the Diabetes Educator in the hospital, my mind was already working on the technological options that were out there.

Of course, Emma was also thinking about the “tech toys” as well; in fact I recall her asking if she’d get an insulin infusion pump before we even left the hospital. It was her doctor that quickly mentioned that she needed to first learn about insulin injections before moving on to the insulin infusion pump. He told her she would get an insulin pump soon, in fact she got her first pump three short months later.

Emma’s insulin pump is a device that she has seen me wear since she was an infant. The insulin pump is a device that is sometimes mistaken by people as a pager. And to be honest it’s about the size of a pager and is usually clipped to a person’s waist.

The pump houses a supply of insulin and gives the wearer a continuous dose of insulin throughout the day. I often describe it as a small IV unit since most people can relate to what an IV machine does. Emma’s choice for insulin pump was one just like mine. She chose a unit made by Medtronic. Her insulin pump was the latest version available on the market.

The pump also included a CGM or continuous glucose monitor. The CGM is another device that has been around for sometime but has recently become more accessible and readily available. The CGM is a sensor that has a small filament that is inserted just below the skin, where it sits for 3-7 days. The filament detects the levels of sugar in the sub-dermal layer of skin and by translates these levels into a blood glucose level reading. By using this device a person can get an accurate idea of how their glucose levels respond to insulin, diet, and other factors.

After just being diagnosed for a little over 3 months, my now 11 year old daughter had some of the newest and most advanced technology available at the time for diabetics. Along with having this equipment, I was watching an emerging advancement in glucose monitoring via the cloud. There was a group of software engineers that were developing code that would allow the parents to see their children’s glucose readings. They saw a need and after doing some “hacking” to the insulin pump, developed glucose monitoring via the cloud. It was a group that would become know as NightScout.

This idea intrigued and frightened me at the same time. I applauded the idea of being able to see my daughter’s glucose reading anytime. Yet, I was scared to attempt the “hacking” on her pump. I decided that instead of testing it out on her pump I would try it on my pump. Ultimately I was successful, but that led me to a new concern.

Was the gear that was required to “hack” my daughter’s pump and then the added responsibility of the end result really necessary? I decided at that time it wasn’t. Emma was still young in terms of her diabetes diagnosis. I wanted her to develop and be involved in decisions that affected her. With that in mind, we decided at that time cloud monitoring wasn’t for us.

Time continued on, as well as advancements in technology. Some of the medical equipment we used changed and some stayed the same. One such instance was with another CGM that was manufactured by another company other than the one we used.

It was called Dexcom and the new system was called the G5. It was the latest at the time and it brought new features that I was thrilled to see. The Dexcom system would not communicate to the insulin pump Emma was using, by that I mean Emma’s current CGM would automatically transmit to her pump the glucose reading it was detecting.

By doing that Emma could just pull out her pump and get a decent idea of where her glucose reading was. The Dexcom required a separate receiver to display the glucose readings. That was until the G5 series Dexcom was introduced. The G5 added Bluetooth functionality which meant now devices such as a mobile phone could be used to display the glucose reading.

Another advantage to this setup was now an app could be loaded on a separate mobile phone that could also be used to display glucose readings. Now we had a great solution to our CGM issue. Emma could see her glucose readings on her phone which just like any teenager, her phone was with her all the time!!!

And now her mother and I could see her glucose reading on our phones no matter where we were. We could be sitting across the room or across the globe. In fact I was recently on a trip in Africa and Emma was back home in Texas; I was still able to see how her glucose readings were.

I must say the medical and technology device advancements for diabetes that I have observed over the years are amazing. They have helped to improve the lives of countless diabetics and their families worldwide. Sometimes though these gadgets can create an unwanted effect.

For instance, one can rely on the tech so much that sometimes they forget the basics or fundamentals. I recall one time when my insulin pump simply stopped working. The manufacturer was great about getting me a replacement, in fact I had it the next day. Those 16 hours without the pump were very long though. I had to retrain myself how to do multiple insulin injections in order to keep from going into DKA.

Other times they can create a level of observation that one could almost compare to being watched by “big brother.” I find myself playing the role of a “helicopter parent” sometimes with Emma. By that I mean that I find myself glued to my phone sometimes following her glucose readings. When those readings start getting out of range I find myself quickly checking in on Emma, to then find out she has already taken action to correct the situation.

I have to remind myself that she needs to experience things firsthand in order to know how to react. There will come a time when Emma is out on her own and she will need the experience to help guide her with her diabetes management. Sometimes we become so “plugged in” with the gadgets that we lose sight of how things are without the technology.

These days I try to include my daughter in decisions that concern her diabetes management. She doesn’t always wear the Continuous Glucose Monitor. I understand that sometimes it does become cumbersome. She does routinely check her blood glucose by performing a finger stick so we at least have an idea of how her blood sugar levels are doing. She likes to take breaks from the CGM though. I do allow it because I want her to take responsibility and be involved in her diabetes decisions.

When it comes to insulin management once she was able to get her insulin pump she has never once looked back on it. I’m not sure she would ever want to go back to multiple daily injections. She does take the occasional injection when her infusion set malfunctions or if there is another reason why her blood sugar levels won’t drop. However, I don’t see her ever taking a break from the pump like she does with the CGM.

The technology that has emerged in diabetes care has exploded in the past decade. Having been a Type 1 for over 25 years I stand back in awe at some of the things I have seen. It’s still nice to remember the basics and to keep those familiar for when issues do arise. I can’t wait to see what new tech options are released in the upcoming years, but I never what to forget where things were when I was first diagnosed.

The technology is fantastic but the facts that one can take a break or even a step back is also great. The trick, I suppose is to never become overwhelmed by what options you have at your disposal.

You Are Never Given More Than You Can Handle

Posted on March 28, 2022June 5, 2022 by thediabeticjourney.com

“You Are Never Given More Than You Can Handle”

By: Amy Payne

“You are never given more than you can handle” — I have heard this many times over my life, and it has never really stuck until this past year. I was diagnosed with Type 1 Diabetes 36 years ago at the age of 6. I never really thought much about it thanks to my amazing family who never made me feel different.

The only thoughts I had were that I would likely have horrible complications and die young from my Type1 Diabetes. Besides those thoughts, I truly did not think too much about it. I lived my life to the fullest thinking I should live a big happy life now because my future was going to be bad and short.

As time went by technology/drugs improved greatly and after living a somewhat reckless no fear life through my late teens and twenties my diabetes changed. All of a sudden I could not feel my lows/hypoglycemia anymore and my no big deal Diabetes had changed.

After a few years of trying to manage the lows with my new husband we moved to Denver, CO and went to the Barbara Davis Center. They told me I had had Type 1 Diabetes for over 25 years and had most likely avoided any major complications (except for my eyes, etc). I started crying right there in the office. Endocrinologists had stressed my whole life the importance of tight control otherwise I would have complications.

They have since changed their way of advising diabetics as they realize the old way of instilling fear of complications did more harm than good. Unfortunately being from the generation of 1980 diagnosed Type 1’s and even after being told I have bypassed most complications I still would rather be low than high and to this day feel the same, ironically it is the lows that threaten my life now.

Let’s cut to 6 years later –

The cost of Type 1 Diabetic supplies have skyrocketed (the US insured populations out-of-pocket costs for insulin increased by 89 percent from 2000 to 2010 for insulin alone) and with the 89% conservative estimate increase of my insulin alone depression entered my life.

I lost it one day at the Barbara Davis Center- United Healthcare was forcing me to change from Novolog Insulin (that I had been on for approx 10 years) to Humalog Insulin (due to their contract with the manufacturer of Humalog, not for the best interest of their clients).

I was so upset because of the forced switch and how dare they when my Diabetes was so hard to control on a strict regimen and now you are forcing me to change insulin because of your financial interest vs my health best interest, I literally had a breakdown in the Dr’s office.

This along with the never ending increasing expenses to manage my Type 1 Diabetes just to simply stay alive seemed too much to handle and the happy and strong Amy had finally broken down after 34 years of being a tough Type 1 Diabetic.

Barbara Davis was amazing and helped me with my depression (by the way Type 1’s are prone to depression due to insulin is a hormone that we inject multiple times a day, the fluctuation of our blood sugar levels makes us feel bad, loss of sleep, stress and the 24/7 never ending demand of our disease). I also have an additional theory that the blood glucose testing numerous times a day or with a CGM every three minutes along with your A1C results contribute to depression in Type 1’s.

You are judged by a number constantly –

(You are high, you are low, you are good, you are bad). It is a constant number that gives a judgement on your control of a disease that is impossible to control and I firmly believe it does a number on your psyche.

I am sure Dr’s would agree with my thesis. It was a relief to know what I was feeling was normal, and it is okay to finally say you know what this is hard, I have a lot to deal with and guess what I don’t feel that great most days!

Yes it could be worse and I could have cancer but you know what Type 1 Diabetes sucks and is really really hard to manage. It is a very misunderstood disease, being confused with Type 2 and people thinking you caused this by eating too many candy bars vs the fact that Type 1 is an autoimmune disease where my body attacked my beta insulin-producing cells in my pancreas preventing it from ever producing insulin ever again.

The misunderstanding hurts –

You hear comments like you don’t look like you have diabetes and you know you can reverse it with diet. NO, you cannot! I am good today. I am tired. I continue to be strong and continue to fight Type 1 Diabetes EVERY SINGLE DAY!

Type 1 Diabetes builds character, strength, and maturity. Every experience, every interaction, no matter how bad it might seem, has the ability to shape you, to mold you, and to help you become the person you were born to be.

And if it seems that life has given you “a lot” to handle; it is only because it knows how powerful you truly are. It wants you to discover the courage, the wisdom, and the strength that lie deep within you.

Type 1 Diabetes does not define me — it has built my strong character to handle anything!

Cherise Diabetes Handbag By Myabetic

Posted on March 10, 2022April 19, 2022 by thediabeticjourney.com

Most recently I kindly received one the newest products by Myabetic called the Cherise Diabetes handbag. Myabetic is a fashion brand that designs wallets, cases, and purses highly suitable for managing diabetes while catering to one’s individual style.

In the past, I’ve tried a variety of different handbags from well known brands, ranging from low to high cost. But I’ve never been able to find one that suits my individual needs and lifestyle. I’ve never been able to keep myself well organized or find exactly what I need without some difficulty.

This Cherise Diabetes Handbag has been the first handbag that I not only admire for its look but for its durability and convenience. I can fit everything I need in just one purse. It has (3) separate compartments, with durable zippers, and the compartments are different sizes so I can differentiate between the locations of my items.

The shoulder strap is a HUGE plus because it can be adjusted and I never need to put the handbag down when I’m out somewhere. Whenever I need to grab glucose tabs or my blood sugar monitor, it’s easily accessible for my convenience. The purse is very compact and I feel a lot more confident and comfortable knowing I have everything I need.

The Cherise Diabetes Handbag comes in a variety of colors. I chose to go with the charcoal color because it matches everything I normally wear. But once I move in a couple months to a sunnier state, you can bet I’m going to have to get the (blush) and (paradise blue) for the beach. The handbag also comes in (black) which I think would be perfect for work.

In the handbag I carry my phone, wallet, keys, makeup, and of course my diabetes supplies and essentials. Normally in the past, I’ve had trouble finding what I need. But this handbag makes it so much easier and I don’t feel like I’m lugging around a huge suitcase everywhere I go.

Right now you can get 15% off your next purchase with code: THEDIABETICJOURNEY

I would give this handbag 5 stars because it meets all my needs and expectations. I’m happy to have found this brand and will shop from there in the future.

Disclosure: I received a free Cherise Myabetic Handbag from Myabetic in exchange for a review on the blog. All thoughts and opinions expressed in this blog post are my own.

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

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.

Nobody Is Aware Of Diabetes

Posted on January 12, 2022April 27, 2022 by thediabeticjourney.com

Nobody Is Aware Of Diabetes

I wake up today with no saliva in my mouth and a dire quench for thirst. My insulin pump is still giving me insulin. I’m still hooked up to medical devices, but my body is resistant. Maybe due to illness, hormones, or because it’s a Tuesday. My blood sugars are high, much higher than a normal persons blood sugars. I’m tired, fatigued, and the feeling of mortality creeps in. I go to correct with insulin, drink water, and attempt to bring this down. But I know this won’t be the last time I experience this.

But nobody notices.

I spent my day monitoring my blood sugars, calculating and measuring how much insulin to give myself. My dosing is only an educated guess, and I have to make these decisions everyday in order to stay alive. But nothing is ever the same or perfect. I’m constantly on a tightrope, hoping not to fall. I’ll do the same thing every single day but receive different results.

When I go to pick up my insulin from the pharmacy, I get this overwhelming sense of sadness. I realize that the same insulin that keeps me alive comes with a huge price. Insulin is one of the most expensive drugs in the United States, and yet I can’t survive without it. Financially, this disease has crushed me. I’m in debt just for trying to stay alive.

But nobody cares.

Once I get home, I receive a notification that my blood sugar is low and dropping fast. I feel lightheaded, disorientated, and starving for glucose (energy). I go to the kitchen to grab anything I can find to raise my blood sugar. I feel alone, helpless, and I’m fighting to survive. It’s a near death experience, that I’ve experienced many times. A low feels like my body is shutting down. A low enough number could cause me to go unconscious, have a seizure, coma, or death.

But nobody is aware.

The night follows with finding a diabetes joke going viral on the internet. Where it’s mocking the disease, assuming it’s caused by being lazy and eating poorly. This is where I stop and realize that nobody notices, nobody cares, and nobody is aware because nobody actually knows about diabetes.

Nobody knows that diabetes kills more people than AIDS and Breast Cancer combined. Nobody knows that diabetes can be caused by an autoimmune disease. Nobody knows that children are dying from this disease. Nobody knows the overwhelming sense of fear of not knowing if your blood sugar will withstand the night. Nobody knows how it feels to experience the highs and lows.

Nobody knows our desperation for a cure…

…Except the person living with diabetes.
And those caring for them.

I Won’t Go Down Without a Fight

Posted on January 12, 2022June 23, 2022 by thediabeticjourney.com

I Won’t Go Down Without a Fight

(I’m 15 years old at the time)

“Brittany, what’s your blood sugar?” My mother asks after I get home from school.

“Umm… 136.” A number I randomly blurt out without testing what my blood sugar actually was.

I go in my room and glance over at my unused lancets and test strips. I know what’s it’s there for. I know I’m supposed to take care of myself.

But why aren’t I? Why am I fighting against it?

I go to lay down, I’m tired, and I don’t feel right. I fall asleep…

(A half hour or so slips by)

“Hi Brittany, My name is John , I’m an EMT and we’re here to help you. Can you tell me what your name is?”

“...Brittany“, I reply.

“Great Brittany, do you know why we’re here?”

“My diabetes?” As I let out a deep saddened sigh.

“Yes, your blood sugar was 19.”

“We gave you a shot of dextrose. Please drink this juice and eat this sandwich to stabilize your blood sugar.”

“Thank you“, I reply as I’m still very dazed and confused as to what’s going on.

My mother hugs me and begs me “please take better care of yourself“.

As tears fall from her face. I see the frantic look in her eyes.

Once I’m back to full consciousness, it sets in. I melt down. I cry, and this isn’t a normal cry. This is painful and it hurts and all the anger releases from within me in full despair.

The feeling of helplessness, guilt, shame because I feel weak… I feel tested… I feel numb… I feel unworthy of all these extra chances I get.

I feel like I’m letting everyone down… I’m letting myself down. I feel like a failure at a disease I never asked for. Something I could have never prevented.

All I can think about when I take my insulin injections is if I don’t take enough I could end up with amputation, loss of eyesight, kidney failure, heart disease and various complications.

I think about how even if I have great control, there is still a risk. It overwhelms me. I went from having a care free childhood to having a fear of dying in my sleep from a low blood sugar or too soon from complications.

This isn’t the typical “teenage reality”.

I’m sick and there’s nothing I can do to fix it. No denial, begging, or lashing out will make my situation better.

I’m my own worst enemy and the only person who can save me in the end, is me. It’s the most terrifying and debilitating feeling having this burden riding on my back.

It took awhile but this process has changed me. I came to grips with knowing I only had one choice. Which was to fight. So I did. I let it in. I embraced the unknown. I rose above the darkness that consumed me. I continued to get up everyday to fight the same demons that left me tired from the night before.

I went from crawling to walking to eventually running. I didn’t want diabetes to win. I knew that this wasn’t going to be easy. But I knew what was on the line.

I knew I would fail, which I have. It took much trial and error. But I’ve learned to get back up, brush myself off, and keep going. To not let the fear overcome me and dwindle my spirit. To honor and respect the journey, for it has led me to here.

To not go down without a fight…

Feeling Judged With Diabetes

Posted on August 21, 2021January 13, 2022 by thediabeticjourney.com

Feeling Judged With Diabetes

Dealing with diabetes is more than just a number. It’s more than an A1C result, a blood sugar reading, or the amount of carbs I’ve eaten throughout the day. It’s the endless minutes, hours, days, and years that I’ve been battling this disease.

If diabetes wasn’t hard enough—I often feel shame or guilt for how I manage my diabetes. I get the sense of anxiety and nervousness before going to an endocrinologist appointment. As if I have something to prove, and I’m needing acceptance.

It’s a look—or unspoken judgment that is presented. I feel uneasy and withdrawn—thinking to myself that maybe I’m not doing as great as I thought I was. Being told what I could be doing better, rather than all that I am doing right.

I think it’s a lack of communication and understanding. I feel misunderstood and judged with diabetes. I know that my health care team work towards helping me, but I sometimes feel like they don’t understand me. It’s one thing to be educated in something, but it’s another to be truly in depth with it.

Don’t get me wrong—I take a huge part in this as well. There are ways I could better communicate to my endocrinologist and health care providers. After all, there’s no one else who knows my diabetes better than myself. I know what works and what doesn’t. It’s been a lot of trial and error over the years. What’s great is when I can find a doctor who is on my team and we work great together. They understand where I’m coming from—while I can correspond with their recommendations.

—

By explaining that I’m trying my best but maybe could use help in certain areas.

—

Even when trying my hardest my efforts don’t always seem to show.

—

Why I don’t wish to try a certain medication and why I’m avid about it.

—

That having different views or ways of doing things doesn’t mean “noncompliant”.

—

How I’m feeling a certain way and that it’s okay to feel this way.

—

That sometimes just by having a solid conversation, helps ease my mind a bit. Hearing that I am doing a good job makes all the difference going forward.

—

Receiving some appraisal for being at this appointment, that I care, and to make me feel a little better leaving.

—

Feeling less judged with diabetes and being understood by my physician helps my diabetes management which ensures a better me. While I do need their expertise and care, I also need myself in this more than anything. I know in the end it will be me—that will get me to tomorrow, next week, 5 years, 10 years, 30 years down the line. I know what I’m capable of, and how far I’ve come. Nobody knows that but myself—that’s all that really matters. In this journey, I’m my own captain, leader, worst enemy, fan, advocate, everything.