All the Feels (the good, bad and ugly)

The good: my A1C was like, 5.6 or some craziness and I am in a prescription assistance program so that I can get insulin for free now (more on that later)!

The bad and the ugly, however, is the rest.

I promised in a recent social media post that I would share with you some questions I asked my Endo at a recent visit. Before I do though, I want to explain what drove me to these questions. You need to know a little bit about my insulin needs.

Truth is- I use very little insulin (some of you might know this already) and honestly I have even thought before, "How can I be type 1?" I use so much less insulin than anyone I've ever talked to in the diabetes community. This has always made me feel like an outsider, like a type one that's "not legit". I was recently denied the opportunity to participate in a drug trial that would have been extremely beneficial to me, because my "pancreatic function was too high".

For those of you whose only experience with diabetes is my myself,  here are some numbers for comparison: I can get away with FIVE units of long acting insulin, while some type ones can need as much as THIRTY or even more.

To type ones out there for some perspective, I cant even use up a minimum reservoir on a pump and usually ended up wasting insulin when I wore an omnipod.

Now, all that to say: my endo has told me multiple times I am a classically diagnosed type one with antibodies that prove for sure that I am dealing with autoimmune diabetes. But I wanted to know for sure at this last appointment..... could I get away with not taking insulin?

The answer was a hard no. My endocrinologist told me that because I have the potential to spike to the 300s (no matter how rare it may be) that I must continue insulin therapy. She does not recommend a closed loop system because she does not see it as necessary. She does not know of any pumps with a low enough reservoir to avoid wasting insulin. We cannot do inhalable insulin for mealtime boluses because of the increments it comes in. I absolutely cannot take any oral medicinal replacement for insulin.

So I honestly feel stuck.

Stuck with 4-5 injections a day and destined to be bruised and pricked multiple times a day even though we have technology to prevent (or at least decrease) that.

Oh goodness, I know I should not complain. I am so thankful my diabetes is less work to manage than most peoples. That I sleep good at night. That I do not often deal with crazy swings in my numbers.

But what STINKS is that I STILL have to prick, I still have to stick. I feel like I am teetering on this edge of true illness and faking it, but its a quick fall to reality when I truly do not put forth effort to manage my numbers (even if its less than others have to).

I have a chronic illness. One that will never go away. I have to remind myself of this, because sometimes I don't feel "worthy" to be labeled "type one". Ugh. How DUMB.

Well, there it all is, aired out in the open. I don't understand the purpose or see a point to this, but I'll bet I am not the only one who carries these type of weights.

No matter what I may feel however, the truth that I am sure of deep down in my heart is this: MY STRUGGLES DO NOT DEFINE ME and I should never seek to find contentment by looking around and comparing myself to others.

What happened when Peter started looking around? He SANK. DONT sink. The waves of depression, discontentment, discouragement, sadness, they are all waiting to overtake you.

Remember to look at Jesus. To take his hand. To trust him and whatever he is planning for your life.

Its difficult to explain why needing so little insulin is frustrating and why its hard to be thankful for the positive. I can see how none of this may make sense to someone who doesn't live in my brain.
But oh my friends, hear this: I find comfort in knowing that I can express my feelings, the good the bad and the ugly, to a God who understands and cares about every part of me.

I almost quit social media AGAIN... and heres why

"No one will follow me if I don't post attractive pictures of me showing off my medical devices" 

"I am not like everyone else because I don't need much insulin, and my sugar stays in range without much effort, and I don't have a pump or CGM"

"I am not a 'true' type one diabetic"

"I am not relatable" 

Shew! Felt good to get that out there! I want to talk about comparing yourself to others... whether that be other diabetics, famous people, or peers. 

All of the phrases I listed above are things my inner self has struggled with, especially upon my recent re-enrtry back into the diabetes world on social media (Instagram specifically). I found myself straight DEPRESSED. Discontent with being device-less, wishing I was more like every other diabetic so I could be relatable, wishing I had more followers, more likes, more comments and better pictures. 

And so I was like, forget this! I was much better off without social media. I was happy with my glucometer and MDIs. I didn't even hardly THINK about having diabetes. Now all the sudden I'm stressed about not having devices, not having enough followers, and being so different from every flourishing diabetic on social media. UGH. 

I had a well-meaning follower tell me one time, "Maybe your a little bit cured!" because I cut out my long acting insulin while on a mission trip. "I would've been in DKA!", she says. 

I was recently refused the opportunity to participate in a clinical drug trial by higher ups because, "My pancreatic function was too high" although my doctor, research coordinator, and diabetes educator agreed I was PERFECT for this study and classically diagnosed type one diabetic (abnormally high GAD antibodies and all). The drug they were testing was supposed to stop or delay the autoimmune process. 

I don't have my pump or CGM right now because I don't have medical insurance, and I was totally fine without them until I got back on Instagram and felt like a total outsider to the diabetes community. 

I have felt like an outsider most of my life, ever since I was old enough to realize how different I am. I dress different than most people because of my personal convictions, I don't do things other people do or go the same places as other people my age. So its not a new feeling. 

When I was first diagnosed I was SO excited to go to a women's conference hosted by our local JDRF chapter. I was 16 (newly diagnosed) and with my mom. All the girls had devices. They all had been diabetic since they were 5 or 6 years old. I felt so, "not in the loop" around these people who I was supposed to share common ground with. This group that was exclusive, with a focus on a rare disease and difficult lifestyle that I and everyone else there had. Surely I should have felt normal here!

But I didn't. And you know what? Its OKAY to be different. Its OKAY to share common ground, but on different levels. Your self worth does not come from how relatable you are to people on social media that you probably don't even know or other diabetics who have better or worse numbers than you.  

Its okay if you take 5 units of Tresiba and have a high carb ratio! Its okay if you need 50 units of long acting and barely any short acting! These things do not make you type one or not type one. I have autoimmune diabetes, and my bet is you do too. I can grantee we are different in how we manage or illness and you know why?  Here's some relieving news: WE DONT LIVE IN THE SAME BODY OR HAVE THE SAME BRAIN! Autoimmune diabetes IS NOT YOUR FAULT. You have little contol over what your body does or does not do.

For me, my fulfillment, my self-worth, and my overall contentment is based in Jesus Christ. Its so easy to look at other people (especially as women) and wish we were just a little skinnier, a little more popular, or had clothes that were a little cuter or more revealing. 

But YOU my friend... YOU are SO much more than what everyone else's social media posts tell you you need to be. You be YOU. You do YOU. 

2 Corinthians 10:12

"For we dare not make ourselves of the number, [for they] comparing themselves among themselves, are not wise"

1 Corinthians 6:20

"For ye are bought with a price: therefore glorify God in your body, and in your spirit, which are God's"

So whether you are a mom struggling to fit into every mold that every other mom is trying to smoosh you into, or you are a teenager discontent with how you pose for photos, how you look, or what you have to wear, or a diabetic who feels like no one gets you, please remember you are unique, perfect and I think you are AWESOME. 

So I almost quit social media AGAIN. But I didnt. Because I want to keep sharing, learning, and relating in any way that I can.

Death by Holidays (goodbye honeymoon phase)

Alright, I don’t know about you guys, but when I’m stressed out, super busy, or on vacation, I get a little lax in my management if you know what I mean. Finals week, Thanksgiving, and Christmas vacation are all perfect examples of this. Finals week was, well, stressful. And when I’m stressed out, I like to eat. I mean, who doesn’t love a good a candy bar when you’re on the brink of mental collapse? (Okay, that may have been a slight exaggeration, but you know what I mean) When I say “lax in management” I don’t mean that I completely stop taking insulin or ignore a bad BG reading. It means that I snack more than I should, don’t check as often as I need to, and fail to stay within my normal carb range. I try to shoot for around 45-60 carbs meal. Well obviously, that goal is not even realistic on Thanksgiving.

Let’s start with Thanksgiving. Lots of food, right? Want a general idea of HOW MUCH food? I took nine units of insulin to account for my loaded down plate. At a bolus ratio of 1-15, that means it was about 135 carbs. Post-Thanksgiving meal, my tummy was NOT happy with me. As a diabetic, I rarely eat until I am stuffed. And this was the first time since the beginning of this year (my diagnosis) that I had really gorged. And oh boy did I pay for it! The stomach cramps that night that followed were NOT pleasant. I can’t remember if I checked my BG before bed or not. Forgetting to check my BG before bed was a bad phase for a while (more on that later). So after Thanksgiving I seemed to be having difficulties staying in range. So I monitored my carb intake, insulin dosage, and BG’s closely for a couple days then decided to bump up my bolus rate. So I started doing a unit to every 12 carbs instead of 15. I also upped my daily injected of Lantus from 5 to 7 units.

So that was Thanksgiving. Now on to Christmas.

Pretty much same story, different holiday. Poor control, snacks, too many carbs, too much food in general, ect, ect. This past week I was out of state visiting a friend before school starts back. All week I kept seeing a reoccurring high post-prandial (after meal) BG. So, I upped my intake again, and tried 1-9 for a couple meals, with results still above my preference. Another bump down, and I seem to be back on level ground with a 1-7 ratio.

Now I’m wondering if I might need to give Lantus another bump up, considering I went to bed last night with a BG of 113, and woke up with a 130.

I said all that to say this: Honeymoon period is obviously either over, or in fast decline, and I can’t help but wonder if I was responsible. Did all that over-eating, inconsistent snacking, and irresponsible management finally send my pancreas over the edge? It’s a question worth asking, but I’m not sure if I’m brave enough to admit all of the above to my endo next week. He’s bound to notice those highs and missing bedtime BG’s. Good thing he is a super nice guy.

 ~Regretful T1D

An Icee Revelation

So this one time I walked into a gas station and, temporarily forgetting about my (almost) dead pancreas, I came this close to buying a slushy.

1^st thought: *Gasp* those look ah-maz-ing

2^nd thought: It’s hot out, a perfect day for a slushy!

3^rd thought: And they don’t even cost that much!

Then, just as I was getting all worked up, a light bulb went off:

4^th thought: Oh yeah. I have diabetes.

Although I don’t often let this disease limit me when it comes to sweet treats, I had NO idea how to count carbs for a slushy. Not only did I think the amount of carbs would be too much for a normal day treat, I also wasn’t in the mood to take insulin. The thought of avoiding an injection was a more pleasant one than the thought of the cold cherry-coke slushy touching my taste buds.

As before stated, T1D doesn’t usually detour me from devouring sweets. I mean, let’s be honest here, Mickey D’s frappes are my weak point. I think I had three last week (hopefully my Mom’s not reading this…). A small Oreo frappe, my favorite, (thanks a lot person who introduced me- you know who you are) has 82 carbs. A small chocolate chip frappe has 110 carbs, a fact that I discovered yesterday after I already bought one because the Mickey D’s employee informed that they did not have Oreo frappes, even though the picture was clearly displayed on the menu (Uhhh can you say false advertising?!). Although I’m addicted to these things, in all fairness I only get one when I’m out with friends or, like today, traveling. I just happened to hang out with friends a lot last week. Frappes are probably so processed and terrible for me. Ew. I’ve got to kick this habit.

Healthy eating is something I aspire to pursue when I move out and have to buy my own food, but right now I don’t pay for food so I don’t complain, ya know?

Referring back to the slushy story, have you ever almost forgot you had diabetes? It’s all still fresh for me, so I guess it makes sense that I might have a momentary lapse in memory. Or does it?

~Absent minded T1D