Tag: Type 1 Diabetes

Delicate Balance

I thought I had my diet and blood glucose (BG) levels all figured out, and then, I got lazy. Two meals this weekend I eyeballed my portion and carb load and definitely missed the mark, by a lot.

Oops.

The first meal was meatloaf, rice, and corn. I knew I had about 20 carbs in a half cup of rice, and I guessed the meatloaf was very low in carbs, say less than 5. I didn’t give the corn much thought. Big mistake.

It’s a vegetable, right? The diabetes educator said I could basically eat as many vegetables as I wanted because it requires so much energy to digest them that the carb load is negated.

Well, I forgot her caveat about starchy vegetables.

I tested 4 hours after dinner on Saturday night, and wouldn’t you know, 284 BG. WHAT?!?

I thought my hands were dirty so I washed then tested again…283 BG. Hmmm…

I immediately thought it was the meatloaf…it did have a sauce…oh, ketsup has like 4 carbs. So it’s not the meatloaf.

Then I thought I had forgotten how many carbs are in rice…nope, about 20 for a half a cup is right.

I guess, maybe, it’s the corn. (Still in doubt, still believing it’s a regular vegetable.)

Google: “Carbs in corn”

123g in 1 cup

Holy moley. That’s the problem. Unknowingly, I had eaten close to 90 carbs for dinner. Lesson learned, not all vegetables were created equal!

Although, the lesson was not learned completely because I did a similar mistake the next day.

Lunch on Sunday was red beans and rice. My portion was probably a touch large, but should’ve only been 40 or so carbs. What I forgot to account for was dessert…creme brulee…my favorite!

So that meal, I ate 70 or so carbs and was pushing 300 BG three hours later.

So here’s where I’m at now: keep each meal less than 50 carbs (including dessert!) and eat lower glycemic vegetables.

My BG have been super good since introducing exercise again last Thursday. I think I may be able to control my diabetes without insulin! When eating gluten-free and 50 or less carbs per meal (with a 20 or so carb snack in between), I’m able to be below 130 BG before each meal and before bed. Woot!

Now to see if the doctor’s agree…

Diabetes Check-up – 1 Week Gluten-Free

I met with my endocrinologist office this week to review my numbers and make sure I’m on track. 

The office had never heard of treating T1 diabetes with a gluten-free diet. This is a little concerning to me; however, new research is coming out all the time, so it is probably hard to keep up. 

The doctor I spoke with was supportive of the diet, of course still checking blood glucose (BG) regularly to make sure my BG stays in line. I was a little disappointed that she thought my BG were still a little high. I just had <150 stuck in my head. So I thought levels of 130-140 were perfect. The pre-meal BG needs to be <130, and the 2 hour post-meal BG <150. I should be <130 in the morning too, after the overnight fast.

Oh rats, maybe the diet change isn’t good enough. I’m regularly 130-145 pre-meal or fasting in the morning. 

I want to give the diet more time, especially since I JUST started feeling better/normal again. I’m checking in with the office next week, and we’ll go from there. 

Here’s my latest thought or thing to research: is the goal of insulin and diabetes management to make sure my BG returns to normal level after eating or is it to make sure my BG doesn’t spoke to high while eating? Somewhere in between? Both?

Gluten Withdrawal

Folks, it is still working. Eating gluten-free is allowing my blood sugars to be very stable (for a Type 1 Diabetic, not a non-diabetic) while still eating 30-50 carbs at a meal. I find this amazing.

I tried to document my first couple days in my last post, but it is confusing. There are so many numbers!

I have not been limiting my carbs other than not going crazy. At each meal, I eat what I want and the portions I want. I just make sure they are gluten-free. I have not taken my fast acting insulin since Tuesday, April 25, 2017. Not a drop. My body is able to cover the carb load at every meal.

Since Tuesday, I had been taking my long acting insulin. I thought I might still need it, but on Wednesday evening (4/26/17) I started to go low in between meals. So on Thursday, I lowered my long acting insulin dose from 7 units to 5 units. I had low episodes that afternoon and evening. In fact, I found myself at 86 BG right before bed. Rats. I might go lower through the night! This incurred a late night call to my lovely sister-in-law who is holding my hand through this whole ordeal. I fixed that level through juice but did set an alarm to check my BG in the middle of the night.

On Friday, I lowered my Toujeo dose again to 4 units. Here’s where I get super frustrated. I was low at 10am, 11am, and 12:45pm. By lunch I’m feeling like I need a juice IV! In the middle of those lows, I was at Costco. I know I’m not supposed to drive if my BG is below 100. So me and my two children are just sitting in the van, do-dee-do, waiting for my BG to go up. So frustrating!

Saturday, April 29, 2017, I decide to not take any insulin. Repeated low episodes are so annoying and potentially dangerous. Here is where it all falls apart…

Saturday was not a normal day, Dan was brewing with a friend, and my friend and I were going shopping while the hubby’s watched the kids. I rushed my breakfast and lunch, not eating the carb or calorie load I normally would. While I’m out shopping in the afternoon, I’m feeling progressively “off.” I repeatedly check my BG, but it’s not low. I began around 1:30 with a BG of 148, and I proceeded to check is every 45 minutes or so as I grew shakier and shakier (the lowest reading I had this entire ordeal is 96…not low at all). I also had shortness of breath and the feeling I was about to vomit.

As we are driving home, I start to pass out. I start shouting, “I don’t feel good. I don’t feel good!”

My sweet friend calmly pulls over (bless her heart!). She gets juice ready (the feelings are like a low even though my BG says otherwise). I quickly take 2 units of Toujeo (It seemed like the right thing to do. My BG wasn’t low, but I thought maybe it would stabilize me somehow) and recline my chair.

I start to feel better so we continue on. We decide to pick me up a protein bar at a grocery store, and by the time we are back at the car, I’m feeling like I’ll pass out again.

We try to decide if we should go to the hospital, go home, or call an ambulance.

The feeling hits again a few minutes later so we pull over and call an ambulance. While waiting for it to arrive, I start to feel better again, but I think it’s too weird to not seek medical help.

The ambulance arrives and checks me out. I’m fine. Blood pressure, blood glucose, heart rate (so odd to me, I felt like my heart was racing!) everything looks fine.

Weird.

We talk my symptoms over with the EMTs. They scold me for changing my dose of insulin on my own, and we leave the ambulance.

We were stopped at a meat market. We decide to go in to get ice cream for dessert. I don’t even make it to the front door, and I start to feel faint again.

Dan and I decide to go to the hospital.

I feel so bad walking in to the ER that I just lay down on the ground while Dan checks me in. Ha!

The ER runs all kinds of tests: EKG, chest x-rays, blood work, urine tests, blood pressure in different positions, etc. I’m fine. 100% clean bill of health. Absolutely nothing wrong with me.

Right. As I lay on the bed visibly shaking. Of course there’s nothing wrong with me.

I’m super scared at this point. They are discharging me, and I can’t calm down. They say I can just come back if I feel bad again. AGAIN??? I STILL feel bad. I’m still shaking!!!

I really feel like I’m going to die, and the hospital has no idea why. Looking back maybe I should’ve taken comfort in this. The Lord knows my time and there’s nothing a hospital or team of doctors can do to change that.

I’m really just scared stiff to leave. The last doctor asks me about my anxiety level. I begin to wonder if it’s a panic attack. I decline any medication and decide to head home.

As I’m talking to the last doctor, I ask Dan to start researching what happens when people stop eating gluten.

We get back to our friend’s house. I still fee rotten. They serve me up dinner quickly, and I start to feel better very quickly. The shaking is still present but the faint/ill feeling subsides. Yay!

I spend the next hour trying to get a hold of my endocrinologist just to run everything by them. Could not using insulin cause this? I really thought the fault lied with me not taking the Toujeo that day.

We get home, get the kids in bed, I get off the phone with the endo, and Dan says, “So it looks like gluten withdrawal is a real thing.” What?

We read several articles that night that tell personal stories of gluten withdrawal being very similar to drug withdrawal. We couldn’t find any medical articles, but there are PLENTY of personal stories floating around the internet.

I’m now one of them. I think I exacerbated my symptoms by not eating enough, but gluten withdrawal is a real thing. I’m a believer. It felt awful, like I was dying.

I’m now 2 days from the episode. The shaking is nearly gone but gets worse if I wait too long to eat. I’m eating every 2-3 hours and feeling fairly normal now. I have not taken any insulin (fast or quick acting) since Saturday, April 29, 2017 at 3:45pm. My endocrinologist agreed with my assessment of my BG and subsequent reduction in insulin. She is completely on board with 0 insulin unless my BG spikes. I have only had 2 readings higher than 150 since I started my GF diet.

  1. One was because I loaded my system on juice before arriving at the hospital (215 BG…not THAT high really).
  2. The second was last night. I was 197 before bed. I had a snack mix that evening. I’m wondering if there was gluten in it. Not sure what happened there.

Another example, for lunch today I was 90 BG pre-meal. I ate a lower carb (for me) lunch at 20-25 carbs (all gluten free) and was 126 BG 2 hours post-meal.

Amazing. Everything I’ve read about gluten prohibiting the carbs from absorbing correctly in my gut (instead heading straight for the bloodstream) appear to be correct. Another note, I think the reason this is working too is that my pancreas is not 100% dead yet. I am still producing some insulin and not having gluten in my diet is allowing my body to use that small amount of insulin better.

Cuh-razy. Right?

More Processing: Self-Pity

Self-pity is addicting. It feels good to tells myself I don’t deserve what’s happening to me. It feels good to roll the scenarios of the last week around in my head.

How did I get a diagnosis in one week exactly? I called my endocrinologist, who needed a new referral, my primary care physician doesn’t practice anymore, find a new primary care physician, whoops set 2 appointments with PCP, cancel one appointment, run to a PCP visit that day, wait 24 hours, call endo to see about referral, explain nicely that I’m VERY concerned and need to see the endo, push, push, push, fight, fight, fight…

I did so much work! I am amazing.

Proof of this lies in the fact that the endocrinologist can’t believe I (1) got an appointment with her with two days notice and (2) even noticed my symptoms in the first placed. I am so good.

Well, since I did all that work, poor old diabetic me, I can take a lazy day. No housework for me. I’m spent. I’ve done SO MUCH today. Let me think it over again…

I can get so wrapped up in what happens to me: the sequence of events, the unfairness of it all, or even the unknowns to come.

However, wallowing in my own self-pity gets me nowhere. In fact, it actually takes me backwards.

  • Emotionally – I haven’t truly accepted the diagnosis. I’m not fully in denial but definitely not embracing and moving forward.
  • Physically – While my body is doing fine, the physical state of my house and home are a wreck. It feels like too much to vacuum, too much to wipe off the mirrors, too much to clean the toilets. I’ve been thinking about my food, insulin, health insurance, glucose test strips running out, comparing health plans during open enrollment, etc. etc. How could I possibly do housework right now???
  • Spiritually – A song comes to mind: Trust and obey, for there’s no other way to be happy in Jesus than to trust and obey. I’m not really trusting Jesus with anything if I’m stuck in my own self-pity. That’s the thing about self-pity. It only focuses on myself, not on God, as my focus should be. I’m not seeing the blessing in the diagnosis. I’m not asking to see the blessing in the diagnosis. I’m not seeing how God can use diabetes to make me more like Him. I’m not seeing how I can be impacting others for Christ. I’m not seeing any of this because I can only see myself. Poor old broken me.

I may stumble sometimes, ok, all the time, but I know Jesus. I know He has more for me. I know He is working in me, and He designed my pancreas to last only 33 years and 3 weeks. I don’t know how He’ll use this for my good and for His glory, but I’m trusting Him to do so.

So I picked up a rag, cleaned the mirrors, and wiped finger prints off the windows/appliances/trash can. You know what? It only took 10 minutes. At the end of the cleaning, I had a boost in my step because I had accomplished something that day! I had 2 items to check off my To Do list!

The boost also allowed me to open my Bible and seek Jesus, not for what he could do in me, but just seek Him. I’m in John 19 now, Jesus’ death on the cross. It’s beyond horrific. The older I get the more I can picture and imagine the beatings, the mocking, the pain, and He did it all in quiet submission to the Father so I could have a relationship with Him. Me, this “broken” (sarcasm font) human, wallowing in self-pity because boo-hoo I have to inject a teeny needle into my body so I can eat and live. There’s nothing like true suffering by someone who actually didn’t deserve it to bring me back to reality.

Jesus is my life. Serving Him with what I have is my desire. He just gave me another tool with which to serve Him, and a whole new circle of people to show Christ’s love. What a blessing!

Processing

I’m still trying to accept the Type 1 diabetes diagnosis. I realize this isn’t a death sentence. This is a completely livable condition. It likely won’t kill me, unless I fail to manage it.

Therein lies the burden: management.

I am still in the adjustment phase. I’m not carb counting (yet seeing the need for it with each passing meal!) rather I’m administering insulin based on the level of my blood sugar. It’s a retro adjustment rather than a forward-looking adjustment. If I am high at the beginning of a meal (due to what I ate at the last meal) then I take more insulin regardless of what I plan to eat at the current meal. I totally see why diabetics count carbs, and I’m actually looking forward to it. Weird-o.

Back to management: it’s exhausting. I have two young boys who command a lot of my attention, and when they aren’t, I’m “managing.” I’m testing my glucose level, administering insulin, cooking a meal, answering the phone (talking to doctors, pharmacists, SO MANY diabetic support programs, etc.), talking to the health insurance company AGAIN, etc. etc. It’s exhausting. My introverted self has not had a moment to think. Until right now, really, as I type this. Super dad took the boys out golfing, and I am typing away. Processing, if you will.

I have some thoughts to get out. Here it is in all it’s selfish glory: I feel like I’ve already suffered enough, medically speaking. This diagnosis doesn’t seem fair.

I feel guilty even typing that. I know it’s wrong. God made my body exactly as He intended. Psalm 139 says

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

This passage was especially comforting to me after I went through my AVM surgery. God put my AVM in my brain. He did it on purpose. It didn’t surprise Him. It was enormously comforting to know that my AVM was a part of His plan, His purpose, for me.

It was easier to accept His plan for me with a one time surgery that turned out so positively. It is a lot harder to accept a lifetime diagnosis that requires constant care and attention.

And yet, I know my God is faithful and true. He would not let anything happen to me outside of His plan. His plan was for my pancreas to stop working  normally around April 1, 2017.

The week before the diagnosis, I was studying John 18 and 19 in my BSF Bible study. This is the trial and torture of Jesus before His crucifixion. Pilate’s indecision was a decision against Jesus. Even when Pilate saw that Jesus was not guilty of the crimes the Jewish leaders accused him of, Pilate did not stand up for truth. I left BSF that day with the question “Is Jesus my Savior and my King?” stuck in my head. I wrote it at the top of my notes. Is it true? Is Jesus Lord of everything? All areas of my life?

Later that day, I wrote this down

Is Jesus my Savior and King? Is He really Lord of my life? Am I acting on the truth given to me? I sure pray it is so. Lord, use me; change me, don’t let me be stagnant. Make me more like you.

I wrote this on Wednesday, March 29, 2017, three days before I started having symptoms of Type 1 diabetes. I believe God’s purpose with the diagnosis is to change me, to use me, to make me more like Him. I refuse to let this opportunity to go to waste. I want it to be used for God’s glory. Anything less and I will be striving for nothing.

A New Chapter Begins

I started this blog with the intention of being a home decor or possibly a DIY blogger of some sort. I like alliteration, and I was quite pleased with myself on my blog title: Flawed yet Functional. “Good one, Emily! Repeating “F” words, short yet meaningful, easy to remember (at least for me it is!), useful in many applications houses (no house is perfect), furniture (same), decor (always somewhat flawed, I’m not a professional!), my body (my AVM story), etc. Yes, this is a good title with a variety of uses and applications in blogging.” Little did I know just how useful!

While I still love decorating and renovating our house, my family has taken precedent the last few years. The desire to write, share my story, and encourage others still exists. My most recent physical struggle brings this blog to the forefront of my mind again. What if my story (and it’s continuation…) can encourage/guide/warn others? What if by writing out my story, I not only help myself process but others as well? In that vein, I no longer write for the hope of being internet famous or even making money on this ole blog, I feel the need to share. God is working something out in my life. I don’t know what yet, but I think writing here may help me figure that out.

So what’s happened?

Last week was Spring Break here in West Michigan. My husband and I intended to spend it quietly at home for the most part. We had two weekend trips planned, but those were going to be small and low key. The first weekend trip had us staying in a hotel, and my husband knew to purchase a couple gallons of bottled water knowing that hotel water doesn’t taste wonderful. Friday I was drinking it fine. I thought it tasted a little odd, but I was thirsty (and the hotel water truly was yucky) so I just kept refilling my water bottle.

Friday – In the evening, it occurs to me that I’ve filled my water bottle a lot, several times since arriving that afternoon. Just how many times, I’m not sure, but it is starting to occur to me that it might be more than normal.

As it happens when you drink a lot of water, you must urinate often. We had a hotel room with a separate bedroom, and of course, the bathroom is in the bedroom. We had put the kids down in the bedroom so they could have the quieter, darker room. The things we parents do for a good night’s sleep! I had to sneak into the bedroom several times that night. Hmm, that’s odd. I still thought I just drank too much water.

Saturday – I notice how thirsty I am and decide to keep track. I drank 75 ounces before lunch. Yikes! That’s a lot! Now I’m wondering what the cause is. I immediately think it’s the bottled water.

There must be something in that water!

I mention my issues and concern to Dan, and we both think it’s odd but likely the bottled water. My body must not be used to it…or something.

Sunday – I think my thirst returns to almost normal. It’s still high, but not 75-ounces-before-lunch high.

Monday – I’m driving my kiddos to a petting zoo in the morning, and I notice my far-sight is blurry. I couldn’t focus further down the road. In fact the more I tried, the blurrier it got and the more my eyes watered. By the time we returned from the petting zoo, it had returned to normal. Weird, but I didn’t really give it too much thought. I talk it over with Dan. “Diabetes?” I mention “Probably, not but I’m seeing my brother’s family tomorrow. I can test my glucose level there.”

Tuesday – I’m heading to my brother’s house, and my vision is blurred again. I’m aggravated/nervous. It’s looking like diabetes to me, but I feel fine. Absolutely fine. I test my glucose level as soon as I arrive. I’m chatting it up with my sister-in-law and niece, not really paying attention to the glucose meter.

“Aunt Emily!!!” My niece exclaims.

I look down at the meter, 522 it reads. “Is that finished counting down? Like, is that the number?” I ask.

“Yes! That’s your blood sugar!” My sweet adolescent niece exclaims. Shock and awe are all over her face.

“You need to see someone right now!” My sister-in-law informs me.

Sigh. It looks like I have diabetes. Tuesday began an adventure to get back into my endocrinologist to confirm the diagnosis of diabetes and determine type 1 or type 2.

By Friday, I had been diagnosed with Type 1 diabetes as a 33 year old. In exactly 1 weeks time, I went from a healthy adult to an adult with a lifelong disease. I went from someone who rarely goes to the doctor to one who will be seeing 1, 2 or even more on a regular basis. I went from someone who spend very little on healthcare to one who will be maxing out her health plan every year. I went from someone who eats healthy yet doesn’t consider what or how much she’s eating to someone who needs to know every morsel she ingests.

It’s a touch overwhelming. I’m still at the beginning, but that’s where I am today: a human being with a hole in her brain and a pancreas that doesn’t work anymore. Flawed? Yes. Still functional? Absolutely.

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