Curing Type 1

As walk season and Diabetes Awareness Month get closer, and in light of my recent experience at the AADE (American Association of Diabetes Educators) conference, I’ve heard a lot of people talk about what it would mean to cure diabetes. To me, curing diabetes is about much more than being able to eat whatever I want, or about not being “different” in some way because of my diabetes.

Why do we need a cure? THIS is why.

Because type 1 diabetes is a disease that we didn’t ask for, didn’t cause, and that pervades each and every aspect of our lives.

Because our health relies on our ability to mimic a finely-tuned feedback loop of blood glucose and insulin supply between the brain, hormones, and the pancreas. (And let’s face it, we diabetics are good, but we’re not quite THAT good.)

Because we endure physical pain, callouses, bruises, and scar tissue to dose and deliver the life saving medication we need daily.

 

Because we get used to the needles, but they never stop hurting.

 

Because none of us can remember the last time we got a good night’s sleep. Because parents of children with diabetes should not have to wake up at 12 AM and 3 AM every single night. Because a CGM alarm jolting you awake 5 times a night is 5 times too many.

Because as I write this, my blood sugar is 322 after my third infusion set change of the day. Site change # 1 felt like I was being stabbed in the side with a burning sword, and site change # 2 came out with a bloody cannula. Here’s hoping site change # 3 was a success so I can go to sleep soon.

Because one autoimmune disease isn’t enough- Type 1 puts us at risk for hypothyroidism, Celiac disease, and premature rheumatoid arthritis, among other things.

Because I shouldn’t have to read that my disease puts me at a much higher risk for developing all sorts of infections in my microbiology textbook.

 

Because we know, in the back of our minds, that despite our best efforts, we could still go blind, or lose limbs, or go through kidney failure. All because of this disease we didn’t ask for and didn’t cause.

 

Because sometimes, the ability to manage your disease depends on your ability to pay for the supplies and medications.

Because we have to fight our insurance companies tooth and nail sometimes to get what we need. It’s an interesting experience, telling someone who knows nothing about diabetes that not having a certain medication/device is a health hazard and safety risk.

Because I’ve got enough charts and notebooks of blood sugar patterns and insulin rates to wallpaper my room- none of which have done me much good, thanks to the unpredictable nature of blood glucose.

Because the simple act of leaving your house for the day requires a completing a lengthy checklist, and forgetting any single item could be catastrophic.

Because “grabbing a bite to eat” and “going out for a run” are never just grabbing a bite to eat and going out for a run- so many factors have to be considered to complete either activity safely. And so are driving, flying, going on vacation…

 

Because type 1 diabetes is a disease that impacts physical, mental, emotional, and social well-being. A diagnosis changes your entire life, and the lives of those close to you. We are strong, we are fighters- but we need a cure.

Diabetes on the Run!

After a bit of a hiatus, I’ve finally returned to my blog! I’ve been extremely busy balancing work and a microbiology class, and just haven’t been inspired to write about anything in particular- until now!

One of the other things I’ve been doing this summer is training for a 5K. I’ve tried to start running a few times in the past; it was never something I stuck with, for one reason or another, but running was always something I dreamed of being good at.

Well, maybe “good” is an overstatement- just being ABLE to run a few miles will be good enough for me, no matter how slow!

Diabetes was actually not my main concern when I started my program. I figured “I know people with diabetes who run marathons- how hard could it be to manage my blood sugar for 3 miles?” It turned out to be a bit harder than I thought. Up until now, my main strategy for preventing lows during exercise was to cut back on my insulin for whatever came before my exercise, or to eat a snack before going out. I should add that neither of these worked very well for me- cutting my insulin would result in a sharp spike, and a sharp drop once I started exercising, and eating a snack without insulin usually led to cramps.

But I didn’t know what else to do, and so I stuck with my terrible low-prevention strategies for quite a while. Until I got some advice from an experienced runner with diabetes a few months ago, who said to never run with insulin on board. That ONE suggestion has been a lifesaver! If I can wait until at least 2 hours after my last bolus, I don’t drop as quickly once I start running, and experimenting with temporary basal rates has also helped.

Sometimes my levels run a little higher than I’d like, and sometimes I’m a little too low for comfort, but I’m sure I can even them out, with a little more experience. Having to run with a Dexcom, juice box, glucose tabs, and my meter is also pretty annoying, but I’d rather be safe than sorry- “sorry” being, stuck two miles from my house with a low blood sugar and nothing to eat or drink!

Running (and balancing that with other activities like swimming, hiking and yoga) has enabled me to cut back on my daily insulin- I’ve decreased most of my basal rates and ratios, and I’m expecting a drop in my A1C as well. I’ll find out in a few days- fingers crossed!

While I’m not a great runner yet, the positive changes I’ve seen so far in both my endurance and my diabetes management are encouraging me to stick with it. It will be challenging, but I’m ready to take it on, since I’m finished with school for the time being. I’m looking forward to running in the fall, once it gets a bit cooler- of course I picked what must be the hottest summer on record to start training! I also find running to be a nice stress reliever- a quiet time for reflection or to think about nothing at all.

Here’s to longer runs and fewer lows!

DBlog Week Day 4: Healthcare & Insurance

Oh goodie, another subject I have lots to say about! My experiences with the healthcare system and insurance companies definitely fall along a spectrum, from truly horrifying to truly outstanding. I’m lucky enough to have a fantastic endocrinologist who I’ve been seeing for over 10 years (and he treats adults, so I don’t have to worry about switching any time soon)- I know having a doctor you like is a rare thing in the diabetes community! I have never been scared of, or dreaded, any appointment I’ve ever had with him, although anticipating my A1C results is a different story. But no matter what my readings have been, he never makes me feel bad- we just look for ways to improve (which are often helpful). Other care providers- my PCP, eye doctor, and a new CDE who helped me get back on the pump after a yearlong return to MDI- have been similarly positive.

I’ve had some negative experiences with other healthcare providers, including a CDE who entered my settings incorrectly during a pump training (which threw me off for several hours until I noticed and corrected the mistakes) and a provider who INSISTED that I could ONLY have three basal rates (morning, afternoon, and night. Needless to say, the changes resulted in- well, a fiasco, and I quickly switched them back.). My experiences with my current health insurance have been surprisingly good- the people I’ve spoken to have been polite and helpful, I’ve never had much trouble getting supplies covered, and if there is ever a problem, they are quick to resolve it.

Like yesterday- my mail-order pharmacy had called to say a “prior authorization” was required for my test strips. No one there could explain to us why it was suddenly being required, or what a prior authorization even was. Frustrated, I contacted my insurance company, and I spoke to a woman who calmly and thoroughly explained the whole situation- she wouldn’t let me get off the phone until I was sure I had no more questions! I was pleasantly surprised and impressed.

While I’m lucky to have had a relatively smooth experience (with the exception of my pharmacy- see day 2 for my rant about them), I know others have had to struggle- finding a good endo, working with insurance- and all of this makes managing diabetes harder. Many of the people I know with diabetes are planning to go into health professions-so that they can help others with diabetes. This is a trend that I hope will continue; I think people of all ages could benefit significantly from working with endos, CDEs and nurses with diabetes. I myself hope to be a diabetic nurse practitioner one day. Diabetic biomedical engineers could change the face of the d-tech industry; nutritionists with diabetes could also have a lot to offer.

I’ve always said that studying diabetes in a book or a lab is completely different from LIVNG with it every day; providers with diabetes understand what might or might not be a feasible solution to a patient’s problem, even if it’s something non-traditional. Maybe that provider would have trusted me when I said three basal rates wouldn’t work for me if she understood this…

DBlog Week Day 3: Words, Words, Words

If there’s one thing that’s a sure bet with diabetes, it’s that some people feel the need to comment on your lifestyle choices after you reveal your diagnosis. While it doesn’t happen to everyone every time, it happens often enough for us to make memes about it- so yeah, pretty often!

When people talk about these experiences, they highlight them as offensive, insensitive- implying that they caused their disease when they should have known better, and making comments like “I could never give myself shots every day!”

I find it hard to blame people for some of these comments; after all, very little has been done to dispel old myths about type 1, and the diagnosis and treatment of type 2 have become more prominent in the media. Type 1 is covered much less often, so it makes sense that people equate “I have diabetes” with what they know about diabetes from the news.

But first and foremost, even before it’s offensive, commenting on someone’s lifestyle choices IS RUDE. I’m not offended when someone is surprised that I’m “so thin for a diabetic” or assumes that I can’t eat anything with sugar, but I am frustrated that people think that it’s okay to comment on other people’s choices, and make assumptions without knowing the circumstances. Making comments about the lifestyle choices of people without health complications is not considered acceptable; why does a diabetes diagnosis reverse this attitude?

In regards to how we speak about ourselves and our diabetes management- everyone has their own “dialect” of diabetes lingo. “Check” vs. “test,” “dose” vs. “bolus”- each person learned these terms a different way, and has their own preferences. The use of “diabetic” versus “person with diabetes” has gotten a lot of attention, and most people strongly prefer one or the other. While I wouldn’t use “person with diabetes” to describe myself- I feel like it’s a mouthful- I do see the benefit of using a term that separates the person from the diabetes. For me, that’s “I have diabetes” or “he/she has diabetes.” I have no problem referring to myself as “diabetic” but for some reason I’m less comfortable when other people refer to me that way. I’m not really sure why- still figuring that out.

In short- think before you speak, and no matter how we talk about our insulin/blood sugar testing, we’re all still talking about diabetes!

(Although- does everyone say “I’m high/low”? That one seems pretty universal to me!)

DBlog Week Day 2: Mental Health

My first reaction to today’s prompt (like a lot of other people’s, I’m sure) was “OH BOY, DO I HAVE A LOT TO SAY ABOUT THIS!”

Doing the job of your pancreas is not easy, and it requires a lot of thought, planning, and record keeping. Obviously that’s going to have an impact on your mental health. From the time I wake up in the morning, I’m already thinking “Where will my blood sugar be two hours after breakfast? Do I have enough food packed to treat lows today? Do I have enough insulin to last until I get home? Should I change my site? Do I need any prescription refills? (horror of horrors. I’ll get to that later.)”

This is just a short list of the thoughts that run through my head every day. It doesn’t often occur to me how much energy I spend thinking about and managing my diabetes, but when it does, it hits me like a ton of bricks. I sometimes wonder how much simpler my life would be without it.  The best examples of this are definitely eating out and changing my site. I’ve had a lot of problems with site failure in the past, and I worry a lot every time I change it. I won’t change it before bed, before work, or before leaving the house for the day, so that if I do have a site failure, I can manage it better. But my worries result in me not changing my site as often as I probably should…

Eating out is an extremely stressful experience for me- I never know how well I’ve counted carbs (so I usually just get salad, regardless of what I’d actually like to be eating) and, unavoidably, my blood sugars go high and stay high for about 10 hours. If the meal I eat out is dinner, this means my Dexcom will wake me up every 2 hours while I sleep so I can give more insulin. This results in a grumpy, dehydrated, and sleep-deprived Kristen the next morning. As a result, I avoid eating out if I have somewhere to be the next morning- or if I just want to sleep through the night.

But the most detrimental thing to my mental health? Refilling prescriptions. My insurance mandates that I use a mail order pharmacy-which shall remain nameless because I have nothing good to say about them. They don’t communicate- if there’s a problem with your prescription/order/payment, they won’t let you know. I’ve spent weeks waiting for prescriptions that never arrive, only to call and find out that the order was never processed. I’ve also dealt with charges for nonexistent orders, been shipped the wrong supplies, and interacted with rude and incompetent customer service reps. I have been reduced to tears on a number of occasions after calling this pharmacy, and frequently state that dealing with them is THE worst part of having diabetes.

There are some bright spots though, like Tandem’s AMAZING customer service department, not being afraid of/dreading endo visits, and good blood sugar days. Those days- when you know your hard work has paid off- are huge self-confidence boosters.

So yeah, diabetes is a huge downer a lot of the time, but the good moments have the power to turn your whole day around.

(Yes, that’s kind of cliche- but it’s true!)

DBlog Week Day 1:Why I’m Here

I am so excited to be participating in DBlog Week 2016! This is my first time writing for DBlog Week, and also my first post as a new college graduate (hooray!). Today’s topic asked us to reflect on why we blog, and what message we are trying to send.

I started blogging almost a year ago, after attending a student leaders’ retreat with the College Diabetes Network. I had never gotten to interact with so many people my age with diabetes before- I didn’t know anyone growing up, and my university’s chapter of CDN was very small. Being around 30 other people who were all checking their blood sugars and giving insulin at the same time I was had a much greater effect on me than I expected: I had never felt out-of-place doing these things before, but being surrounded by others doing the same things I was gave me a profound sense of “belonging” to the group, and to the diabetes community as a whole.

After I went home, I knew I wanted to get more involved in the diabetes community; several people I met at the retreat wrote their own blogs, and I decided it was something I’d like to try. Originally, my focus was to reach as many people as I could with my writing, to contribute to the DOC, but writing for my blog has slowly shifted to become something therapeutic for me, especially since I decided to expand my focus to my experiences dealing with social anxiety and relationships in college.

Making the decision to blog, in itself, demonstrated how much my self confidence has grown over the past few years. I often joke that I was “scared of my own shadow” during freshman year of college, but it’s not far from the truth. Expressing my thoughts and feelings on such a public platform is something I never would have considered even a few months before I started this blog- but here I am, putting my writing on the internet!

I want people who read my blog to know that diabetes (or any life circumstance) shouldn’t stop you from doing something you want to do, while also conveying that everyone manages and reacts to their diabetes/other challenges differently. No one experiences EVERYTHING about it in the same way, but we all share enough to feel connected to each other.

We are Fighters

The thing about fighting diabetes battles is that they teach you not to give up.

Living with diabetes is about battles. Some are big and some are small, but none is more or less important than any other. We fight for ourselves- for our lives, our health, for a stubborn high blood sugar to come down- and we never stop.

But many of our battles are about others. We fight for better public understanding of T1D each time we address comments like “did you eat too much sugar when you were younger?” We fight for accommodations, whether at school or work, to ensure our safety. And we fight insurance companies and pharmacies, who don’t always understand the paramount importance of timeliness and accuracy in regards to filling prescriptions and shipping orders.

I’ve had diabetes for so long (15 years in July!) that most days, I don’t fully comprehend the amount of time I spend taking care of myself and proactively ensuring that I receive the supplies I need. But some days- like today- the reality of the energy it takes to manage diabetes washes over me.

I use a Dexcom G4 CGM, and I have for just over a year. Now, I’m the kind of person who reads instruction manuals cover-to-cover, so I’m not sure how I missed the fact that transmitters have a finite battery life, and should be replaced every six months. Guess who hasn’t replaced her transmitter in that year of CGM use? Yours truly.

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Two weeks ago, I received my first “transmitter battery low alert” and, upon finding out that getting a replacement would require documentation from my doctor’s office and insurance approval (why this is necessary for something I already own and just need to replace, I have no idea), I did everything I could to speed up the process. An obscene number of phone calls later (last time I had to get paperwork pushed, the process took nearly 3 months. I don’t have 3 months), my replacement transmitter arrived at my house. And my distributor sent me a G5, despite several phone calls during which I indicated I needed a G4.

I was exhausted. I was livid. But the thing about fighting diabetes battles is that they teach you not to give up. Even if it takes a while, you will always come out on top. So I got back on the phone with my distributor, and, after a little help from my parents (AKA the greatest backup ever)  I’m pleased to report that I will have the correct generation transmitter within 48 hours.

One of the most valuable things diabetes teaches you is how to advocate for yourself- and not give up. The best part about this skill is that it’s applicable to the rest of your life as well. Closed class you want to enroll in? You’ll make it happen. Feel like you’re doing more than your fair share of a group project? You know how to address it. If I’m addressing a diabetes issue (like when a prescription is delayed in being mailed due to an error on the pharmacy’s part), I know that I am in the right- and I carry that confidence over to advocating for myself in non-diabetes situations.

So, the bottom line is- follow up, make phone calls, do whatever is necessary to make sure YOU get what YOU need, don’t assume that everything will be pushed through correctly (unfortunate but true), and DON’T. GIVE. UP! 🙂