Tag: blood sugars

living a fulfilling life and going after my dream

Living a Fulfilling Life and Going After My Dream

Living a Fulfilling Life and Going After My Dream

Rachael Baker

Today marks 10 years since I was diagnosed with Type 1 Diabetes.

Since that day, for the past 10 years and for every day ahead of me, all throughout the day, I have to test my blood glucose, think, calculate and inject insulin to maintain my life. No days off, 365 days a year, 7 days a week, 24 hours a day. A day off for me means I don’t make it to the end of the day.

Whilst diabetes is ridiculously complex and hard to understand if you don’t experience it, it is important to know I did nothing to get it and I can not fix it! This is the difference between type 1 and type 2 diabetes.

Type 1 is currently incurable.

So I have spent the past decade accepting that I can only spend every waking and sleeping moment working to make sure I stay alive. The balancing act of diabetes is affected by every daily activity and it is honestly so hard, I have spent days in tears, days where my blood glucose is so high I can barely stay conscious, and nights where my blood glucose is so low I can’t move enough to reach the lollies on my bedside table.

This is scary stuff and some days I don’t want to get out of bed and battle it and other days I don’t want to go to sleep just in case I don’t wake up, but despite this, I have never let it stop me from doing anything. I have kept up with my peers through every step of my life.

Being diabetic, whilst hard and extremely challenging at times, is amazing. It is an opportunity to continually grow and strengthen, as I face challenge after challenge and decision after decision, and still manage to see the next day.

I am healthy and continually strive to ensure my diabetes is optimally managed, whilst appreciating it will never be perfect – this has taken a long time to realize and I am so eager to help others do the same.

I am currently studying a post graduate course in Diabetes Education and Management whilst working full time in a Pediatric Emergency Department as a Registered Nurse. I volunteer as a Diabetes Educator at Camp Diabetes and help children and adolescents cope with everyday activities and teach them that they too can live a normal life.

I can easily lose my life if I slip up at any given second, but I can also live a long and healthy life and do everything a normal person can. This gives me the greatest perspective on life and makes me live to the fullest and appreciate everyday.

It has given me a passion and a dream to be a diabetes educator so I can motivate and teach other diabetics to achieve their full potential as well and I am now so close this dream. I cannot wait for what the next 10 years holds.


share a story


 

diabetes and the unexpected - diabetes blog week

Diabetes Blog Week: Diabetes and the Unexpected

Diabetes Blog Week: Diabetes and the Unexpected

This year is my first year participating in Diabetes Blog Week. I’m excited to be part of this annual diabetes event and share my perspective.

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Having diabetes for so many years I’ve become accustomed to the unexpected. Diabetes has a way of throwing curveballs when you least expect it. It makes things rather difficult and frustrating at times.

Here are my best tips for when the unexpected happens:

Be over prepared

I can’t tell you how many times I’ve been somewhere thinking that I’m not going to need to change my pump site— and it fails. How convenient, right? So now I just bring everything that I could possibly need “just in case”. Just enough to spare me if anything unexpected happens. It’s certainly more of a hassle to carry around extra weight all the time, but the stress of “what if” is therefore not an issue.

Take a deep breath

I have a way of wanting to control everything that goes on with my diabetes to the point where I’m actually doing more harm than good. When unexpected occurrences arise, I’ve learned to now take a deep breath—and handle it calmly and carefully. It’s taken me awhile to be patient, but adding stress to the situation and making quick judgments only makes it worse.

Ask for help

This is probably the most difficult thing I’ve had to learn to do. I always want to feel like I can handle the world and whatever comes my way. But sometimes when my blood sugars are off—and I need assistance getting my supplies, or a snack nearby. Having an extra hand actually makes me feel more at ease and I’ve learned it’s okay to ask for help.

Create back up plans

I’m not always sure if diabetes will cooperate or how my body will react upon each day. Diabetes comes with a lot of uncertainty and unknown. So of course I think of well “if this happens, I have this plan.” But say, for some reason that isn’t effective—I also have this plan for back up.

For instance, I have a dexcom, but what if I don’t hear my alarm, then my husband will be alarmed and call me or run home to check up on me. Creating back up plans creates a more stable safety net and helps living with this disease a little less worrisome.

Diabetes comes with a bunch of twists and turns, up and downs, highs and lows. But I take what I’ve learned in the past and I apply it to the future. No matter how unexpected diabetes is and the challenges that do arise, I will continue on living beyond it.

One Drop

One Drop | Diabetes Management

There’s been a lot of talk lately about the diabetes management platform called the One Drop. This diabetes management subscription model has paved the way for easier, more affordable and reliable access to many diabetes needs.

I received a complimentary Chrome kit and had the opportunity of trying it out for a few weeks before giving a review.

This platform offers:

Unlimited test strips and 24/7 in-app Certified Diabetes Educator support – all for $40 a month.

The One Drop is not covered by insurance. This is a direct-to-consumer service. You will pay roughly around the same that you currently pay with insurance by copayment. But now you don’t have to deal with the hassle of getting test strips approved.

The One Drop offers a free award winning application to manage your diabetes. You can Download One Drop for iOS and Android, You can track all of your information in one place: glucose, meds, food, activity.

What I Like About The One Drop Management System:

  1. The glucose meter is slick, shiny, and easy to store.
  2. The app is easy to use and gives me insight on how I’m managing throughout the day
  3. Having the option of unlimited test strips gives me flexibility. I no longer to worry about running low on test strips.
  4. I have online support for any questions I may have using the product and how to better process the information that I receive.

The customer management team has been very helpful in assisting me on setting up my account on the app and syncing my bluetooth meter. Once they were both paired, it was easy to keep track of all my readings directly on my phone.

 

The glucose meter is very accurate and glucose reading corresponds to the ones that I receive on my CGM and compare to other glucose meters that I currently have. I would highly recommend this product for anyone needing a positive change at a lower cost.

To get started on the One Drop Premium Plan. (Available in USA, EU, and UK)

Diabetes Won't Stop Me From Living

Diabetes Won’t Stop Me From Living

Diabetes Won’t Stop Me From Living

By: Nickie Eckes

I have type one diabetes. I was diagnosed back in February of 1990, at 5 years old, because my body decided it wanted to wage war upon itself and destroy the beta cells in my pancreas.

I remember going to the hospital, and I remember being terrified and having no idea why all these doctors were “torturing” me. I just wanted to go home with my mom, dad, and brother. They said my blood sugar was over 1000 and I had to stay.

The weeks that followed in the hospital were not fun. I had gotten used to getting up and playing and running on stop. Now I was being told I had to live on a strict schedule, only able to eat a certain amount of food at certain times, along with a shot of insulin to ensure that my blood glucose levels were maintained.

They also informed my parents of a place called Camp Sioux, a camp for kids living with diabetes to go and have a “regular” camp experience, but also learn about diabetes. I loved going and it made me feel not alone because everyone was diabetic, and I made some lifelong friends. The type that understands me when I just need “a minute” or “a snack” and understand all those diabetic jokes that make my stomach hurt from laughter.

I’ve dealt with the highs and the lows of this disease now for over 27 years. I’ve handled people telling me if only I would take better care of myself, I wouldn’t be this sick. I did nothing wrong to get this illness, it’s an autoimmune condition. My body can’t make the hormone insulin, which is what is needed for the simple sugars you get from food to enter your cells for energy.

I have to calculate everything I do in a day, from what I eat, to how much I’m going to be moving, along with stress levels and illness (such as common cold or the flu) just to ensure that my blood glucose level stays within a good range and I don’t pass out due to a low blood sugar, or go so high that I get diabetic ketoacidosis (meaning your body is producing a thing called ketones and those can make you very sick). And what works one day may not work the same the next day.

I had the years of rebellion and not caring what my numbers were. I did the whole I’m gonna die young anyway so who cares. And then I decided, I wasn’t going to let this disease keep me down. My friend calls diabetes livebetes because he says “it won’t stop me from living!”

 

Research has made many amazing developments since then, so much now that newly diagnosed people are being told that not much in their lives has to change; they just need to know where their numbers are and how much insulin flow take for those different numbers. We can even program those numbers into a pump and have it do the dosing for us (although not completely without thought from us).

We now have faster acting insulins that instead of having to wait 30 minutes after taking them to even start eating, we now only have to wait 5 minutes. We have what is called a Continuous Glucose Monitoring system (or CGM for short) that can tell us our levels every five minutes, which helps a lot given it can predict a high or a low before they occur, and we can correct the issue before it becomes an issue.

In fact this year, with any luck, I will get to obtain the new diabetes pump, with the first ever closed loop system on it! Both my doctor (who is also diabetic) and I are rather excited for this and are not so patiently waiting. There’s still always planning and calculating everything. It helps, but it’s not a cure. All of these advancements sound amazing and are fantastic, but it’s still a heavy load to carry.

Diabetes Won’t Stop Me From Living

I will keep fighting. I am strong. I hope to one day be able to say “I used to have diabetes.” And because of all this, I remind myself while I may have diabetes, it does NOT have me.


share a story


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

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

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.


share a story


 

Taking a break from diabetes technology

Taking Breaks From The Diabetes Technology

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.

Taking breaks from the Diabetes Technology

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.


share a story


 

You Are Never Given More Than You Can Handle

You Are Never Given More Than You Can Handle

“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’a 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 miss understanding 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, and 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!


share a story


 

What It’s Like To Live With Type 1 Diabetes

What It’s Like To Live With Type 1 Diabetes

By: Valeria Guerrero

What’s it like?

It’s pricking your finger endlessly throughout the day.

It’s not being afraid of blood because you get used to seeing so much of it.

It’s no longer feeling tremor to a needle because you’ve had no choice than to be poked by them every day.

It’s being woken up countless times throughout the night to fix blood sugars that just won’t become stable.

It’s waking up feeling hung over because your sugars were high all night no matter the amount of corrections you gave yourself.

It’s not being able to eat whatever you want before carb counting and analyzing how it will affect your sugars later.

It’s having to put on a fake smile every time you have to explain to someone that type 1 and type 2 diabetes are NOT the same thing.

It’s not being able to go a single work out without stressing if you’re going to go too low, drop too fast or go high.

It’s seeing all the scars all over our tummy, arms and legs from all the site changes and pokes and just cry.

It’s people staring at you while you poke yourself and watching you like something is wrong with you.

It’s people telling you “you can’ t have that” or “should you be eating that?”

It’s people assuming you have type 2 when you say you have diabetes.

It’s watching people look at you like you’re breaking the law by having a candy.

It’s asking yourself what you did wrong because you got this disease even when they say it isn’t your fault.

It’s remembering what it was like before being diagnosed and feeling nostalgic.

It’s struggling with money and possibly going into debt because supplies are just so expensive.

Photo Credit: Josie Nicole

It’s wanting to cry whenever you hear a representative say “your insurance doesn’t cover that entirely so your out of pocket cost will be…”

It’s seeing a medical bill in the mail and getting a knot in your throat.

It’s thinking of all the money you could’ve had if you didn’t have diabetes.

It’s watching people turn their head away when you’re about to poke your finger or give yourself a shot.

It’s watching your mom walk out of the hospital room because she wasn’t able to handle watching you give yourself your first shot.

It’s worrying if you will wake up the next day because you don’t know how your sugars will be throughout the night.

It’s being terrified to think about even having babies in the future because you’re terrified there might be complications.

It’s feeling lost and in a haze when you’re going low.

It’s panicking that you don’t have a juice box around that you’re dropping too fast.

It’s waking up in the middle of the night dripping in sweat as your body is begging for sugar.

Photo Credit: Ashlyn M.

It’s not being able to go straight back to sleep after a low because you have to wait until you come back up.

It’s eating anything and everything in your fridge when you have a low sugar.

It’s avoiding anyone who is sick because you don’t want to get sick and have to deal with high blood sugars.

It’s the possibility of ending up in the hospital over a stupid cold.

It’s finding test strips everywhere you could possibly think of.

It’s looking like robotron with so many devices connected to you (CGM, pump).

It’s your pump tubing getting caught on something and tearing out and trying not to scream in pain while trying to stop the bleeding.

It’s having people ask you and assume that your CGM is a nicotine patch.

It’s people telling you to correct your blood sugars over and over when little do they know that you’ve been trying everything you could for hours.

It’s having to go to the doctor every 3 months.

It’s having to have medical insurance no matter what.

It’s having to throw out a vial of insulin that has gone bad and just thinking about the money that you just threw away.

It’s ensuring you have all your supplies anytime you plan to leave the house.

It’s the fear that it’s too much for a loved one to handle and love you for.

It’s wanting and praying that your mom will eventually try to learn more about the disease so she understands you a little bit better.

It’s wanting your loved ones to know how you feel to know how hard it is; that this isn’t easy but knowing they don’t.

It’s being in denial for years after being diagnosed because you don’t want to accept it.

It’s worrying more if you have enough money for your supplies more than buying a shirt you’ve been wanting for months.

It’s having to always have a purse with you because you have to carry your supplies with you. It’s hating the word “disability” because it makes you feel less of a person.

It’s the feeling that no one gets you because everything you feel is invisible.

It’s arguing with your dad and having to yell at him that your sugars are high and that it only makes you more irritable.

It’s arguing with your boyfriend over the stupidest things because your blood sugars are high.

 

It’s your friends getting upset with you because you tell them you can’t go out for some reason, but in reality diabetes just has you feeling like shit.

It’s putting up listening to people who think they know more than you on this disease.

It’s having to be okay with death because in reality, it’s a possibility at any given time with this disease.

It’s seeing all the people who pass away from this disease and feeling your heart drop to your stomach because you know that could be you.

It’s having people tell you “there will be a cure soon” but you just feel like soon is never soon enough.

It’s not worse than cancer but this stays with you forever.

It’s not something I would ever wish on my worst enemy.

It’s hard. Man, does it get hard.

It isn’t easy. There’s so much more to it. More than anyone could see or understand. I could go on forever. There are and have been so many times where I want to give up. Where I just want to go a day or two without the pokes. To try and feel “normal” again.

But I know I can’t. I know better. Because my life depends on it. But it has shaped me into who I am today. I thank God every day because I could’ve been one of the many children who die from a misdiagnosis. I was close to it. But I didn’t. I believe and I know I am stronger than what people believe me to be.

I have gone through hell and back. There will be rainy days. But the sun will always shine again. No matter how hard the rain may have beat down on me. But I won’t let diabetes win.

What It's Like Living With Type 1 Diabetes

 

“With my chin up, I still stand here. Strong. I wear these scars proudly. I’m a warrior. No blood sugar nor person will tell me otherwise.”

-Valeria Guerrero, Type 1 Diabetic


share a story

my silver lining

My Silver Lining

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


share a story


 

The Tribe Of The Unglamorous Heroes

The Tribe Of The Unglamorous Heroes Of The Night

The Tribe Of The Unglamorous Heroes Of The Night

– Written by Michellè Dreeckmeier

InstagramFacebookBlog

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.


share a story