Tag Archives: type 1 diabetes

Burnout and Patient Shaming

I slacked off in 2016, canceling my doctors appointments and not rescheduling them. 

Yes, I’m aware that’s terrible. 

Yes, I’m aware that’s dangerous. 

I’m also aware that I was still adamantly monitoring my A1C through my Dexcom, had no instances of DKA, was never hospitalized, and never ran out of supplies because my doctor kept approving the prescriptions. 

It isn’t an excuse to those in the healthcare field, but to those of us with chronic illnesses, we get it. We understand that the appointments are overwhelming. The tests are frustrating and annoying. The battle with insurance is never-ending. 

And sometimes, you just need a damn break. So that’s what I did. 

Now I’m getting back on the wagon. I saw my endo a couple weeks ago, and saw my eye doctor yesterday for the yearly diabetic eye exam. 


I passed. I still have 20/20 vision, and I have no signs of diabetic retinopathy. 

But I didn’t miss the judgement in the doctors voice, that I hadn’t been there since April 2015. That I didn’t have an up-to-date A1C number and the estimate of 7.2 from Dexcom Clarity “really should be closer to 6.0.”

I hear you judging me, but I also hear that your perfectly functioning pancreas keeps you going every day. You don’t face the battles I do. You don’t have to hope to God you’re going to be able to pay for your deductible because you meet it in January every year. You don’t have to stab yourself over and over and over again.  You’ve never dealt with burnout from this horrible condition that you didn’t cause or ask for. 


Shaming me for my actions isn’t a solution. If anything, it only makes me hate you more and not want to do better. It makes me feel like the things I have accomplished – like the fact that I received a promotion to middle management last year, played a sport and still managed to keep myself alive – mean absolutely nothing to you. It makes me feel like the fact that I’m still out here kicking ass doesn’t matter because my A1C isn’t a 6.0 (which, by the way, A1C isn’t a good marker for diabetes care anyway!) 

A little compassion goes a long way. Rather than chastising me for not coming in for an appointment for the last year, maybe try asking me what I have been up to in that time? When I indulge that I played softball, ask how that affected my blood sugar – was it difficult to deal with, did I tend to run low or high during games? If you act like I’m more than just an A1C number, I’ll be a lot more receptive to your advice and suggestions. 


So please, keep your judgment to yourself, healthcare professionals. I already know that I didn’t and don’t do things to your standards, and ultimately I am accountable for my actions. 

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It Took Three Years, But It Finally Happened

I came home early from work today because I’m sick (and I didn’t go in at all yesterday). I decided to take a bath, which I hardly ever do, to relax. First, I ran the water too hot and nearly scalded my entire body. After I got out, I realized my pump site in my leg was still hurting since after lunch, and it had a little blood in it, so I decided to swap it out for a new one. As I’m standing in my kitchen, completely naked, sniffling and sneezing, fighting moderate ketones, drawing up a new pump site, I go to throw away my empty insulin bottle. It bounces off the rim of the trash can, falls to the floor, and shatters into a zillion tiny glass pieces all over my kitchen and living room. 



Just another day in the life with type 1 diabetes. 

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A Decade without Self-Harm

Ten years ago today, I self-harmed by cutting the word FEAR into my thigh with a safety pin. 

It wasn’t the first time I had ever self-harmed. I had been doing it for two years at that point, albeit not very often, and rarely drawing blood. Most of the time, I would just trace over an existing scar on my wrist at the base of my hand, but sometimes I’d get more aggressive and scratch and cut a little higher up on my wrist. It was always to cause pain to create a physical release for emotional stress and pain – Never to try to die. 

January 26, 2007 I was told by the boy that I liked that he didn’t want to date me. It was yet another blow to my fragile self-esteem. I took a few emo selfies (although that word didn’t exist yet at the time) and then decided I needed to self-harm to bring emotional pain to a physical level. 


It was the first time I’d ever cut on my leg. It was also the first time I ever told anyone I knew in person about it. (I had a group of internet friends who knew and we were all open with each other about our struggles). I told a friend the next day that I was struggling and what I had done, confiding in them. They promised they would come and pick me up and we’d go driving around and hang out to cheer me up.  

They never came. 


I was dragged, kicking and screaming, to the ER by my parents who believed I was suicidal. I was forced to strip naked and be examined by a nurse, who was also a classmates mother who I had known for years. I was then also examined by a doctor who was the father of another classmate. I had to talk to a therapist on the phone at 2am because it was snowing really hard and the therapist couldn’t make the drive down from Kalamazoo. I was eventually released from the ER after almost 6 hours, feeling humiliated and more miserable than ever, and forced to see a therapist a few days later for one session to make sure I was okay.

It was the beginning of a long ride through rock bottom for me. 


For weeks afterward, my mother would walk into the bathroom while I was changing, pretending to do other tasks while she searched by body for signs of self-harm. 

I had been betrayed by my friends, and that cut more deeply than any sharp object could. I had reached out for love and support from my friends and had been given embarrassment and suffering instead. At the time, I was livid, but so desperate for friendship that I let them back in. However it took a long time for me to be able to fully trust them again. In hindsight I know that it wasn’t betrayal but rather teenage kids trying to help another teenage kid with something over their heads in the only way they knew how. 

I knew I wanted to be free from self-harm. I didn’t know how to do it, so I began keeping track of how long it had been since that night. A week passed. Then a month. Then a year. 

So now, here I am. Ten years later. I honestly never thought I would be able to say that. I knew I would struggle – and struggle I did. I had the support of a lot of friends through the hardest times, which were the first few months afterwards. (At that time, I didn’t know that part of my problem was undiagnosed Seasonal Affective Disorder, which I began treating in 2012). 

I adopted a “fake it til you make it” attitude to get me through, and that was a large part of my success. Did I have my life all together and figured out? No way. But I told myself that I did. I would tell myself that I had it together and that I was succeeding and beautiful and happy until I slowly started to believe those things for real. 

With each passing year, it got a little easier to resist the pull to harm myself. There were times where I nearly failed – but I didn’t. I held fast to the belief that if I just held on, that I would get through – and I did

While compiling this entry and reading through old journals for reference, I found this that I had written two months after the last time I self-harmed:

if i have already felt this much pain at seventeen, then what shit will i have faced/be facing when i am twenty-six or thirty-four or fifty or eighty?

I’ve faced so much since I wrote that ten years ago. I dated a man who was sexually and emotionally abusive, and it shaped so much of who I am as a person. I found and married the love of my life. I was diagnosed with diabetes. I started my own business and have traveled all over the country to do what I love. I received several promotions at work, where I do a job I never thought I’d be doing. I dedicated myself to an extremely strict church for the better part of a decade. I’ve faced my seasonal depression head-on. 

And that’s all by age 26. I can’t vouch for 34, 50, or 80 yet, but I’m pretty sure I’ve got it on lock. If not, I’m going to keep faking it until I make it. 

If I can do it, you can do it. 


If you or someone you know is thinking about suicide, or just need someone to talk to, please reach out to one of the resources listed below. You are important and we need you here with us. 

National Suicide Prevention Lifeline: 1-800-273-8255 (available 24 hours per day)

Suicide Hotlines by State: suicide.org

Crisis text line: Text message GO to 741741

Additional resources: To Write Love On Her Arms

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Filed under Before, Real life, Support system

As 2016 Closes Out

For many people, 2016 was a horrible, no good, very bad year. So many celebrities died. Brexit happened. A very strange US election happened. All among other things.

But for me? 2016 was honestly amazing.

It feels almost like a bad thing for me to be saying that because so many people around me had such a terrible year, but it’s true. 2016 was great in so many ways for me.

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Still Diabetic

Diabetes Awareness Month is over, but my fight with diabetes isn’t. I’m still diabetic. There still isn’t a cure for my condition. 


Technology has advanced, but I have to rely on it and constantly plan ahead in case it fails. I have to deal with problems that normal people don’t even know are a thing, let alone think about. (like my dog getting tangled in my insulin pump tubing in the middle of the night)


Yet I will continue on, with feelings of melancholy – Yes, I’m alive, but it’s still a hindered existence. 

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World Diabetes Day 2016

November 14th is World Diabetes Day. It also marks the birthday of Dr. Banting, the man who co-discovered insulin, enabling those with diabetes to no longer die from their condition. 

For this year, I asked my Facebook friends to ask me anything they wanted to know about Diabetes and I’d answer them here. So let’s jump into it!


Allen and I had actually been married for almost 2 years before I was diagnosed. So while I can’t directly relate to Kendall on this one, I do know what it is like to develop new relationships post-diagnosis. 

One month after I was diagnosed, I changed jobs. I’ve always been very up-front about being diabetic and what that means for the people who work closely with me. In my experience, it hasn’t hindered any friendships – my coworkers have generally been curious and many have been massively supportive for the past four years. Of course, none of these relationships has been romantic in nature, but I think that ultimately, there are many good people out there that want to understand and be supportive, and as long as you approach every question with a good, honest, informative answer, then people will be open and receptive of who you are. 


A non-diabetic person should be around 80-120 mg/dL – and many type 2 diabetics should try to stay close to this range as well. Ultimately, this is a conversation that should be had between you and your doctor. I personally have my range set from 80-180 mg/dL. 


Allen has been SO helpful through my journey. He does all of my Dexcom CGM insertions, mostly because I typically want it inserted in places that aren’t easy to do by myself. He also occasionally helps insert infusion sets in hard-to-reach areas. 

Otherwise, Allen is very much hands-off in regards to my care. He’ll wake me up at night if he hears my Dexcom alarming, and if I say “I’m low” he’ll immediately jump out of bed and get me a juice (and then ask what my number is when he gets back). We also use Dexcom share (so I can see my numbers on my Apple Watch) but Allen has one alarm set on that one: He’ll be notified if I go below 40 mg/dL. That way if I’m not with him, he can message me and see if I’m okay, and if I don’t reply then he knows to start calling everyone I’m with (or 911 if I’m alone). It’s a system that works for us but it may not be right for everyone. 


Nope, but there are some I prefer to avoid. Orange juice is the main one. It’s one of my favorite things, but I just can’t ever time the insulin right for it and end up miserable. I usually avoid cake and cookies as well if I can help it. I also will always choose diet pop over regular – I’d rather save the carbs for food instead. I probably should avoid more things, like Chinese food and pizza, but they are just too yummy. 


Yes and no. 

Yes, insulin companies offer coupon programs and discount cards – however, these are usually unavailable to the people who truly need them and they do not address the true problem– sky-high prices for consumers. 

There are a lot of groups on Facebook where people can pay it forward and directly send supplies to someone in need. I actually benefitted from a pay it forward group early on in pumping when my insurance was changing for the year and I was having issues getting supplies because of having to get prescriptions and authorizations. However due to the fact that selling or trading prescription medication is illegal (and if the items were purchased by insurance dollars then it is also fraud at that point) many people shy away from this. (Test strips fall into a gray area because they can be bought OTC)

There are many reputable organizations out there that accept donated supplies to help those in need including Life for a Child, Insulin for Life, and Marjorie’s Fund to name a few. 


I love this question so much because I really had to stop and think about it. But here it is:

You don’t see the repeat lows through the night. Waking up 4, 5, 6 times in one night because your blood sugar won’t come up (or go down). Trying not to overcorrect, trying to figure out what you did wrong/right/different, trying to just get some freaking sleep. 

You don’t see the body image issues. The weight gain as punishment for doing your pancreas’ job, the bruising and scars from poke after poke after poke, the struggle to find clothes you can wear your pump with (dresses with pockets are SO hard to come by). 

You don’t see the hundreds of times I make a diabetes-related decision every single day. I haven’t been to my desk in a while so I missed breakfast, did I already give insulin for it? I hope I didn’t. I’ve been running around like crazy, being way more active than I usually am so my blood sugar will probably start dropping soon. I want to have the cupcakes my coworker brought in but I don’t even have enough insulin in my pump to cover it, I will have to pass for today. 

You don’t see the shame and emotional toll of having a seriously misunderstood and often joked about chronic condition that will likely kill you. You don’t see every time a diabetes myth is perpetuated, or misinformation is spread, or a joke is made in poor taste but people who aren’t directly affected by it don’t care because.. why would they? Human nature – if it doesn’t directly affect you, then do you really care? Not typically. 


If you read through all of this, know that I appreciate you. Any advocating I can do is a step in the right direction. Diagnosis rates are still on the rise. If I can only ask one thing, that is for everyone to know the signs and symptoms of type 1 diabetes. It can happen to anyone at any time – it happened to me. 

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Survivor’s Guilt

Earlier today I saw a post in one of the diabetes groups I’m in, and it struck a chord with me.

A lot of the general ignorance of type 1 diabetes doesn’t phase me anymore. I’ve become so numb to the harmful (and completely misguided, ill-informed jokes) that they just roll off of me now.

But this got to me.

The post was an article about the ever-rising price of insulin. Someone had left a comment on the post and the mom of a type 1 kid screenshotted it and shared it in the group I’m in.


Immediately, my stomach lurched and I wanted to cry.

A thousand thoughts rushed through my mind – familiar thoughts that I’ve had many times before, but that doesn’t make them any less troubling.

What if I’m meant to be sick?

What if I’m meant to die?


Survivor’s guilt. It isn’t something that is openly discussed in the Diabetic Online Community. At least, not that I’ve seen. So here I am, proclaiming it – I deal with survivor’s guilt over my diagnosis.

Before 1921 when Dr. Frederick Banting and Charles Best discovered insulin, every single person with type 1 diabetes died. Every. Single. One. At most, they could live a few months post-diagnosis – but it was more of a shell of a life, an existence spent in ungodly suffering from the havoc high blood sugars can cause.

Is my life greater than any of theirs?

What about the people who are on insulin but still pass away due to dead in bed or other complications of diabetes? Or the ones who are misdiagnosed and die.

I shouldn’t be alive. I suffered under misdiagnosis for five months. I should have complications. But I don’t. Why? Were those people somehow less deserving of life than I am?

Is it destined that only the richest of the rich will be able to afford insulin and the rest of us will wither away? If you look on the streets, that’s already the case. Diabetic homeless people die every day because they do not have access to insulin. Are their lives of less worth than mine?

I don’t write this to incite pity, but rather to just air my feelings out. I can’t help that I feel this way, and living in denial of what I’m dealing with will only make things more difficult for me. As someone who already suffers from Seasonal Affective Disorder, I don’t need anything else messing with my mind.

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Apple Watch vs Pebble Time vs …Softball??

I recently joined a softball league that my work is sponsoring. I am NOT sporty/athletic but I had played in middle school on a league and we were really good (we won the city championships both years, the first year as underdogs!) plus my best friend Katie is the one who started assembling the league. 


Of course, things were way different when I played in middle school. I was 12/13 years old – it was literally half my life ago. I was in better shape and I was not diabetic at that time. 

Today is our first game. I’ve been struggling with finding the perfect bg balance during practices. Most times I’m running ultra high even though it’s been 90 degrees and super humid, but one practice I did crash low and had to sit and smash a few rolls of smarties while everyone else kept practicing. That sucked. 


As much as I LOVE my Apple Watch for monitoring my bg during various activities, I have to do what’s best for me out on the field so I can perform at my best. That’s why I made this decision: I will be wearing my Pebble Time while playing softball. Here’s why!


1) Constant display! The Simple CGM Spark watchface updates every time my Dexcom does meaning I have live readings at a glance! 

1a) I have to sidebar and note that the WatchSugar app I have on my Apple Watch is great, but it only updates every 20 minutes or so. This is an issue on Apples side of not updating Complications. It will be changed in WatchOS3 coming out next week where we can have timely Dexcom updates on the watchface. 

1b) Also note, the native Dexcom app gives live updates but it is not ON the watchface. I have to navigate to it. And then wait for it to update. I can’t use that much time staring at my watch while on the ball field!

2) I will be a LOT less devastated if my Pebble gets destroyed by a line drive than if my Apple Watch did. 

2a) The Pebble is pretty rugged. It has a couple scratches on the face, sure, but overall it’s pretty tough! Sadly I feel like my Apple Watch wouldn’t take the abuse as well. 

3) Since I’m only using it for softball, I shut off all the extra stuff on my pebble. I don’t need my calendar, or text message notifications, etc while I’m on the field. That’s a lot easier to do than switching those settings on and off all the time on my Apple Watch!

4) Battery life. The Pebble lasts way longer than the Apple Watch. Plus it charges so fast, I could throw it on the charger 10 minutes before a game and probably have enough juice for the whole game. Not the case with my Apple Watch. 


One of the big Cons to this setup is that my Move goals on the Apple Watch won’t be accurate. Of course I’m gonna be moving during the games and since I’m not wearing my Apple Watch, my “rings” won’t catch that movement and I’ll look super lazy on those days 😉 But it’s a small trade for the benefits of using my Pebble on the field!

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Food food food

I’ve been trying to eat healthier for the past week or so. I started telecommuting (working from home) last week, and after day 2 I realized that the temptation to get something to snack on from the fridge every hour was going to be detrimental. So I started filling the house with healthy snacks. 


I have many friends who are beachbody coaches, or have done competitive body building, or follow IIFYM, or are just legit amazing people who are all on a journey to better themselves. I want to be like that too, so that’s another aspect of my drive to eat healthier. 


My husband, who is the pickiest eater on the planet, decided he wants to try eating better as well. I’ve been making healthier meals, and even bought the ingredients for protein and fruit-packed smoothies and have been having one every weekday morning. 


Of course, it’s been wreaking havoc on my blood sugar numbers, because my body is used to taking in so much junk and much higher amounts of carbs! (Plus I am move physically active now that I started softball – there will be a post on that later). 


Overall I’m feeling more energetic and I’m hoping that I might see a few pounds come off between eating healthier and being more active, but we’ll see. For now the biggest struggles will be finding recipes that both Allen and I will eat (the fajitas were full of compromise lol) and just to not fall off the wagon! The most important thing for me to remember is small compromises are okay – like having a diet pop once in a while (rather than 2x a day, or going cold turkey on them entirely). 

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#DBlogWeek: They Don’t Care About You

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Check out my other #DBlogWeek posts here. Learn more about #DBlogWeek here.

Today is my fourth post for #DBlogWeek. Here’s today’s topic!

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I’ve discussed the insane cost of my supplies here, and I’ve also written about how Obamacare saved my life. However, I’ve mentioned a little more quietly that I was hoarding supplies all last year.

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So here’s what I’ve discovered in my short time of being type 1 and dealing with lame adult things like insurance companies.

  1. Know what your deductible is and how long it will take you to meet it. Sometimes this can take a little estimating, but it’s worth figuring up if your work/insurance offers more than one deductible level like mine does. I went for the higher premium/lower deductible plan this year because I am able to hit a $1000 deductible in 2 months time – and that made the overall year’s cost lower than the seemingly cheaper $1500 deductible plan.
  2. Never stop hounding. Your supply company is at your mercy, not the other way around. If you know it’s authorized, or you’re supposed to have your shipment on a certain day and it isn’t there (AHEM, Solara), hound them. Email them every day. Call them twice a day. Ask for supervisors. This is your LIFE on the line – and you are your own biggest advocate. They don’t care about you, so you have to do everything in your power to get what you need.
  3. Know and accept that you may have to choose a job based on insurance. This is a reality we have to face. The state of American healthcare today means that we have to do whatever we can to have the best opportunity at survival – which means never ruling out the fact that your company may change their insurance to something completely terrible (as my husband’s did this last year) and you may need to look for a new job with better insurance. Dear America, please stop sucking and revolutionize healthcare a la Australia or Canada, please!
  4. If your medical care team isn’t working for you – switch! My initial misdiagnosis led me to seek other options for care, and that ended up being in my best interest. I found a doctor who trusts my judgment and listens to what I want, and we work together to find the best treatments for me. I can’t say enough about him and I wish everyone had a doctor as great as mine!

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I hope this helps someone in some way!

Read more posts for #DBlogWeek here.

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