Category: Management

What It's Really Like To Have An Invisible Illness

What It’s REALLY Like To Have An Invisible Illness


It never occurred to me that one day I would wake up sick and never get better.

But here I am.

I have a chronic illness known as type 1 diabetes, that significantly impairs normal activities of daily living. An invisible illness that shows no outward signs, and to the rest of the world – I don’t look sick.

My invisible illness can easily be hidden, as I look healthy like everyone else. A smile can easily disguise any pain or distress that I’ve experienced that day. My clothing can hide the medical devices I need to stay alive.

I never let my invisible illness stand in my way. I’ve adapted and I know how to care for myself. I manage the best I can. Most of the time I just feel like I’m on autopilot as if I’m in “control”. Nobody can tell what I deal with behind closed doors.

It’s when days boil over, I look pale and disorientated, and reaching for sugar nearby. That’s when someone asks “are you alright”? That’s when I say “yes, I’m okay – I’m fixing my blood sugar, it’s low“.

“I hope you get better soon” –

I hear the sound of deep concern and empathy in their voice – I do. I’m sure I would say the exact same thing if I were them. However, as days here and there are better than others. I don’t get better.

Photo Credit: Ashlyn Mills

“Have you tried [insert herbal remedy or diet]?” –

As much as I appreciate others desire to help, there is unfortunately NO magic potion. In fact, I have had to adjust and make huge lifestyle changes. But no amount of healthy eating, exercise, or herbal remedy will ever eliminate the need for insulin – or cure my diabetes.

“Isn’t it caused by [insert myth]?” –

No, it’s not caused by something that I did. It’s not caused by sugar, lack of exercise, or from being overweight. It’s upsetting feeling blamed for having an illness that I couldn’t have prevented. Diabetes, and so many other invisible illnesses are placed into a isolated bubble of “what we could have done differently” to avoid this. When it could literally happen to anyone.

“My aunt has that and she’s doing just fine” –

I’m happy for anyone who is doing well managing. But reality is – every chronic illness is different for everyone. With type 1 diabetes especially, it often gets confused with type 2 diabetes and its treatment. It’s confusing and irrelevant to talk about how one person with an illness is doing compared to another. With any invisible illness, we all have different body chemistry and hormones. And with diabetes – different sensitivities to insulin.

 

“Well you’re lucky, it could be a lot worse” –

This is when the guilt kicks in. Yes I’m lucky I’m alive, but everyday is still a life threatening battle. Where no two days are the same. But no matter the good or bad days that I have, I just have to keep going. Have faith, and hope for a cure in the future. Until then, just make everyday count and live beyond this illness.

I’m trying –

It may take more for me to complete the same tasks others do, but I do it anyways. I may not have it all together, but I never give up. Some days I don’t know how I’m going to get through, but I always persevere. I have an invisible illness, and even though my symptoms may not be visible, it’s still there.


share a story


 

10 Gifs That Nail What's Like To Have Diabetes

10 Gifs That Nail What It’s Like To Have Diabetes

10 Gifs That Nail What It’s Like To Have Diabetes

1.  Always being prepared.

I always carry along my snacks, juice boxes, glucose tabs, glucose meter, test strips, lancets, and sometimes if I have room — the most random things.

You just never know.

 

2. Serious math skills.

Doing math in my head has become second nature. I developed a knack for the simple diabetes arithmetic, thanks to the necessary carb counting and insulin mathematics.

I’m still not a fan of math though.

 

3. The expense.


Here’s to my insulin, insulin pump, test strips, lancets, CGM, sensor, doctor copays…

The cost to stay alive with diabetes isn’t cheap whatsoever.

 

4. The waiting game.

Having to stop what I’m doing at any given moment to treat a low or high blood sugar can be inconvenient at times. Diabetes forever interrupts the simplest daily tasks, and it always seems to be at the worst possible time.

Then it’s just the waiting game to get blood sugars back on track…

 

5. The cranky highs.

When my blood sugar is high, I feel pretty lousy and awfully cranky. Time to drink lots of fluids, check for ketones, and take it easy.

You might also want to keep a safe distance.

 

6. The tired lows.

When I’m low it’s hard to fight off the urge to take a nap.

I’m sleepy, sweaty, disorientated, and need sugar FAST!

 

7. The looks and stares.

When I bring out the insulin syringes or a family member asks if I’m “high” in public.

I’m sorry but I’m just keeping myself alive over here.

 

8. Seeing the Endocrinologist.

Nothing gives me more anxiety than trying to jot down and remember blood sugars for the past 3 months.
Then remembering what I ate 2 weeks ago at 3pm on a Tuesday.

No big deal.

 

9. The judgement.

Having a chronic illness, comes with a lot of stigma and misconceptions. But hearing that I caused it by eating too much sugar is the worst one.

And no, diabetes is not caused by eating sugar.

 

10. Just being awesome.

Not many people can say they work in place of a failed organ. It’s not easy but you have to give credit where credit is due.

I have diabetes, but diabetes doesn’t have me.

Source: GIPHY


10 gifs that nail what's like to have diabetes


 

My Early Life, Without Sugar

My Early Life, Without Sugar

My Early Life, Without Sugar

By: Richard Vaughn

*This post contains affiliate links*

When I was diagnosed in 1945, the doctor told my parents that I should not eat anything containing sugar. I don’t remember my reaction to being denied sugar at that time. My diagnosis was only a few days after my sixth birthday.

I do remember missing sweet things to drink. For some time I drank milk from our own cows. That was not a good choice, but we did not know that. It did not contain sugar, so we thought it was ok.

When we went grocery shopping my family did not buy candy, cookies or ice cream. I don’t know what my sister thought about that, she was three years younger, and she probably wanted sugary treats.

A year or so later, we discovered saccharin at a drugstore –

My mother learned to prepare desserts sweetened with saccharin. I had pies, cookies, and a birthday cake sweetened with that wonderful stuff. Saccharin was great! Mother made desserts sweetened with sugar for the rest of the family.

I was happy with my own desserts, and I never wanted to taste of theirs. My father prepared homemade ice cream, and a portion sweetened with saccharin was set aside for me. I always looked forward to that. It was a summer treat.

One day in our grocery store we saw a display of little bottles containing colored liquids. It was called Kool Aid. It was invented in the 1920s and initially sold in concentrated liquid form.

Later on it was sold as a powder in little packets. The Kool Aid we bought in the 1940s was in a concentrated liquid form, so we added water and saccharin. It made a delicious drink. I was very happy.

I had low blood sugar at times for many years –

My mother gave me a glass with some water mixed with sugar. That was the only sugar I had for very many years. I had some awful seizures at night several times each year, and the sugar water was ready for those occasions.

If I could not drink the liquid, my father would sit behind me on my bed and prop me up while my mother rubbed the sugar water on my lips and gums until I had enough to bring me around, so I could drink some of the liquid. I think I may have associated the sugar with my seizures, and that may have made sugar even more undesirable.

There were no meters for measuring blood sugar for my first 40 years after diagnosis, so my urine was tested for sugar each morning to determine my insulin dosage, and then I had to depend on my own feelings to detect low blood sugar the rest of the day.

While sleeping at night my parents would listen for me to be thrashing around in bed to determine that I had low blood sugar. Their bed was close to mine for many years, so that worked out well.

Now I will fast forward to the current century –

I’ll tell you about a discussion that my sister and I had a few years ago. Our father worked at a post office, and he had an afternoon and evening shift. He got home at 11:30 PM. She told me that he would stop at a store on the way home from work and buy candy bars. They were hidden high in a cabinet in the kitchen.

I can remember entering the kitchen several times and my sister was standing with her back against a wall, with her hands behind her. I guess I was not curious about that. She was hiding a candy bar she had been eating.

I never saw a candy bar, and she waited more than sixty years to tell me about that. We laugh a lot about her candy bars. I am glad she had them, and I am glad I did not see them.


To know more of what it was like to be a diabetic in the 1940’s and beyond, you can read Richard Vaughn’s book: Beating The Odds: 64 Years of Diabetes Health 

 


Perfection Does Not Exist In a Life With Diabetes

Perfection Does Not Exist In a Life With Diabetes –

Perfection Does Not Exist In a Life With Diabetes –

By: Christina Blackmon

15 years ago my life changed forever when I was told I had Type 1 diabetes.

I didn’t even know what diabetes was. I think I thought it meant you can’t eat sugar anymore. Little did I know that when I turned 20 years old my pancreas unexplainably stopped working properly and that would mean that my entire life would now depend on a hormone called insulin being injected into my body for the rest of my life.

Without those insulin injections I would die.

Little did I know that for the rest of my life I would be completely dependent upon this hormone. I also had no idea that my days thereafter would consist of being measured 8-10 times per day by a number. A number I get from pricking myself. Knowing that important number so that I can mathematically calculate how much insulin to inject to maintain good blood glucose range based on a formula that changes hourly without notice.

I also had no idea how unpredictable and unreliable my body would be and that there would be factors outside my control that dictated what my blood glucose levels would be despite eating and calculating “correctly”.

That my blood glucose would go up and down like a roller coaster ride and effect every fiber of my being. That sometimes I would want to crawl out of my own skin to escape the pain I was enduring. That I would go from being completely calm and rational to completely angry and irritable. That my pain would be invisible to others because it’s all happening internally without notice to anyone else.

There is no exact science or prescription to manage diabetes and everyday is a guessing game. Knowledge became my power and I studied and researched everything I could about this unforgivable disease. I found that it’s high maintenance and takes no breaks or vacations.

But I also found some tools that would help me. Tools like an insulin pump and continuous glucose monitor that could help me manage every second, every minute, every hour of every day for the rest of my life.

There is no cure for type 1 diabetes. I will always be dependent upon insulin.

Even with my tools – just like every piece of technology they fail me. But despite this disease I have 2 beautiful healthy kids and one on the way and no diabetic complications. Some days I feel so strong like I can do anything then others I lack the motivation to keep going.

But I never give up. I keep fighting and will keep fighting till there’s no fight left in me.

I don’t ever see any other option. I’m very thankful for the tools I have to manage this disease with everything I have and love when I can encourage or inspire other diabetics to do the same.

People ask me all the time is your diabetes controlled and I just want to laugh…what does that even mean??!! I just always say it’s not perfect and will never be. I don’t try to maintain perfection because diabetes means having bad days. I try to have more good than bad days and not focus on perfection.

Perfection does not exist in a life with diabetes.



 

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.

Would You Kill Me For a Tax Cut?

Would You Kill Me For a Tax Cut?

By: Ashlyn Mills

Blog: A Trail Of Test Strips

Before I get into the meat of this issue, I want you to imagine something…

You are 19 years old and a sophomore in college with your whole life ahead of you. Suddenly, you begin feeling ill. You are thirsty all of the time, you feel lethargic and can barely make it through 5 hours of classes without a nap in your car, something is not right and you know it. You finally go to the doctor after you’ve lost 10 pounds and the doctor tells you that you have Type 1 Diabetes (T1D).

The doctor tells you that T1D is an autoimmune condition that has no cure and teaches you what you must do to keep yourself alive. After learning about carb counting, insulin injections, blood sugar testing, and life threatening high and low blood sugar, you’re sent to the pharmacy to pick up your life saving tools.

For the next 3 months supply, you are given 900 blood glucose test strips, 900 lancets, a blood glucose meter, 6 insulin pens, 50 ketone test strips, and 540 needles to use for insulin injections. All of these supplies would have been upwards of $5,000 without good insurance coverage and even with insurance, your first trip to the pharmacy cost you $400.

Now that I’ve painted a picture for you, let me put a face to this story. This is me, Ashlyn, and this is what a pre-existing condition looks like. The story above is my story. 

As you probably know, yesterday the House of Representatives made the decision to repeal and replace the Affordable Care Act, also known as Obama Care. Obama Care has been a major topic of debate for Americans over recent years. With the ACA, many American’s saw their insurance premiums skyrocket, which made the Affordable Care Act not so affordable.

With the ACA did come some positives such as protection for those with pre-existing conditions and the ability for an adult under the age of 27 to stay on their parents’ health insurance. At the beginning of his campaign, President Trump began pushing the issue of the ACA and saying that should he be elected, it would be one of the first things on his agenda. President Trump also insured that with this repeal, he would protect those with pre-existing conditions. Yesterday, however, the House voted against protecting those with pre-existing conditions.

If you aren’t someone with a pre-existing condition or don’t have a child with one, you probably don’t understand how serious this is. Let me tell you what this could do to people like me.
Insurance companies will be able to decide if they want to cover me or not. I will have to search high and low for an insurance company who will cover me and when I finally find one, they will charge me 3x what they charge the average patient because they know I will be a guaranteed expense.

I will then be paying $3000+ per month just for insurance premiums, which will make many of my daily meds and technologies unaffordable. I may have to limit how many test strips I can afford, which will then limit how many times per day I can test my blood sugar. The less I am able to test my blood sugar, the greater my risk for life threatening high and low blood sugars and long-term complications due to poorly managed diabetes. Meanwhile, some celebrate because they got a tax cut. But those who celebrate don’t know that their tax cut could kill me or the other millions of American’s like me living with a pre-existing condition.

Would YOU kill ME for a tax-cut?

 It all boils down to this, republican or democrat, it is important for you to understand how much this decision could impact me if the senate votes yes in the next few weeks. PLEASE, do your research and contact your senator to let them know that this is NOT okay. I am actually registered republican, but that does not mean I have to stand for this and neither do you. While I believe some MAJOR changes need to be made with our current healthcare system (the ACA) in the US, I do not believe that changes need to be made at the expense of people who have no control of the cards they were dealt. Life with diseases like T1D is hard enough as it is, please don’t make it any harder on us.

TAX CUT

Please contact your senator, my life depends on it.

-Ashlyn 

share a story


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)

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’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!


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