Mermaid and Robot Hit Ikea

My friend and co-worker Suzi texted me this morning and asked if I wanted to accompany her and her two peanuts (kids) to Ikea. My response was what it always was when people ask if I want to go get lost amongst droves of organizational solutions–YES. I only spent $30.00 of my own money and mostly got things for my office.

When I went to the Mall of America on a field trip in spring, I bought 3 lego keychains at the LEGO store. I bought a Yoda for my sister, Beth, because she is wise. I bought mermaid for Suzi because it’s blonde (like she is) and has yellow skin like she does. Just kidding! Yellow is her favorite color. And I bought a robot for me because I am a robot (with my OmniPod). I smile every time I see our key rings!

I actually got to be a double-robot for the last three and a half days. My blood sugars were whack, and Dr. K (who is back from maternity leave!) suggested a 3 day constant glucose monitoring study. The monitor they hooked-up to me on Friday didn’t display any numbers for me to see, so I still had to test frequently. I had it taken off this morning. That sucker was painful to insert. It believe it was the Guardian CGM by Medtronic. It had a cannula that was least an inch long. It was kind of terrifying. I hope that the Dexcom isn’t half as painful to insert because I’d really like to get one in the next few months!

Insurance Change

Has an email about changing insurance ever made you cry?

If so–you might have a chronic disease.

My employer is changing insurance providers and I’m scared out of my whits. For most people, a change in insurance companies doesn’t mean a whole lot. You will probably still go to the same urgent care clinic for strep throat tests, and you’re probably fine calling whatever toll free nurse-line number that’s printed on the back of your insurance card. You might have to see a different primary care physician each year for your pap/physical, but the only doctor who would have ever recognized you in a crowd was probably the pediatrician you had until you moved out of your parent’s house.

The insurance company is the gatekeeper to our care. They approve or deny every aspect of what keeps us alive. Typically it means a change in the ‘provider network.’ Most insurance companies make deals with certain providers for two reasons; it keeps the insurer’s costs to a  minimum and it provides some assurance that patients will consistently obtain care from those providers.

I’m thankful to be employed. I am thankful to have insurance in the first place, but I am scared that my current endocrinology team will not be within the new insurer’s provider network. This means paying some percentage for every visit out-of-pocket. It’s commonly between 20-40%. That’s a lot when I am supposed to see them 4 times a year with each visit costin between  $300.00 and $500.00.

All I can do is hope that all of my OmniPod supplies are covered and that my team is within the provider network.
Even if not–I’ll keep fighting the good fight.

Check

I haven’t written in forever. So here’s an update.

I trained, and trained, and trained for the half marathon. The longest I ran before race day was 8.5 miles. I got sick with two separate week-long illnesses (one cold and one flu) during training. I hoped that the excitement and flow of race day would get me though. And it did! That and having Emily and Matt my cousins, and my bff Suzi at my side. Emily and I ran the entire thing together. I would have finished by myself, but I wouldn’t have done it before they officially closed the course. At the 7 or 8 mile mark, Suzi sped-the-heck up and went for gold. Matt stayed with one of our group-mates, Ayla, while she slowed down. Emily and I toughed it out together, walking the hills and running the straights with our identical buzz cuts.

I could tell tell Emily started to struggle at mile 10. The only thing that hurt for me was my arms, where the insides were chafing against my sports bra. No side ache, no knee or foot pain, so I couldn’t really complain. I did my best to coach Emily to mile 12 with my brand of running ‘coping methods.’ I had us run to certain signs, count our strides, and provided ample words of encouragement. We walked approximately 1-2 total miles between miles 9 and 12. I really wanted to run the last mile. I didn’t know if I could get Emily there myself, so I asked Matt to talk us through the last 1.1 miles. He did a great job. He extremely encouraging without pushing us to the limit.

Matt, Emily, and I crossed the finish line together. It was a great feeling. My time was 2:47. Here are all of my other stats. Also proof that I finished. It made me a little sad to see that out of 1154 runners, I finished 1121. That’s ahead of a whole 33 runners. It doesn’t count the people that didn’t finish at all (which I estimate at 30-50 people), or the people who finished after the 3:00 hour mark (which was maybe another 10-25). But it’s still a little embarrassing.

Here is the progression of half-marathon goals from January to race day:
1. Finish it by any means possible.
2. Run more than half of it.
3. Finish in under 3 hours and 30 minutes.
4. Finish in under 3 hours (when I found out that the official course was closed at the 3 hour mark).

I achieved goal #4 which means I achieved all of the other goals. This was all after waking up on Friday morning with a sore throat. I consumed my body weight in Emergen-C (which didn’t do anything at all) and hopped myself up on DayQuil, pseudoephedrine, and Vitamin I (a.k.a. ibuprofen) on the morning of race day. I felt fine/normal during the race, but rapidly declined in health afterwards.

I was extremely sore and felt a general sense of malaise for the rest of Saturday and all of Sunday. On Monday I knew something was wrong when, in the evening, I got a major case of the chills. My temperature topped out at 103 degrees on Monday night. I had the flu. I’m glad it didn’t keep me from running the race, but it was the 4th time I’ve been sick this school year (which is how anyone who works at schools counts the number of times they get sick).

I can’t say I ever want to run a half marathon again, but if the cousins would be down, I’d do the same race again next year. We had a Grade A group of cheer-er-on-ers. Mama Linda, Papa Paul, auntie Laura, uncle Frank (also race day photographer) sister Beth, cousins Maggie and NIck, friend Jenny, and wiener dogs Pippa and Nico cheered us on at 4 (or 5?) different points on the course. It was awesome.

I’ve had no knee or back pain, which is common among the runners in my family, but am experiencing some plantar fasciitis type symptoms in my right outer-heel. I feel a bruise-like pain toward the outside of my inner heel in the mornings. It goes away after 5-10 minutes of walking around, but is back the next morning like clockwork. I am also experiencing some bruise-like pain on the top of that same foot, which probably has something to do with the tendons. I’m resting it–hard. I haven’t run or engaged in any strenuous activity since the race on April 17th. I’m going to give it 6 full weeks before I think about taking up running again.

Diabetes wise–here is low down.
I woke up on race day at 179, which was good. I ate greek yogurt with berries and granola. I only bolused for the carbs–not to correct the 179. I completely suspended my insulin for the entire duration of the race (3 hours). 10 minutes after finishing, my blood sugar was 116.

I resumed my regular basal program about 30 minutes after the race’s end, thinking my sugar would continue to drop. I went home and took a 2 hour nap. When I woke up I was at about 389. I corrected, ate lunch and bolused for the carbs. I went back to sleep, and when I woke up the second time, I was at 410. I gave an actual injection of insulin and started consuming lots of water. It eventually came down into the 250s, and by the time I went to bed was back down in the 100s. I think the stress hormones and all the other chemicals in my body had something to do with the major rebound afterward. Next time (if there is one), I will be watching far more closely after the race. I had more fear that I would go low, but I knew there was a good chance I’d end up high.

I’m still alive and kicking, and looking forward to achieving the next goal I set for myself.
Whatever that may be.

Uptown

Friday was World Diabetes Day.
Saturday I met a guy in uptown who told me I probably wouldn’t have Type 1 Diabetes if I had committed to clean eating. He conceded that I probably can’t cure my diabetes now that I caused myself to get it, but could easily get off of insulin. He also is sure that most people with autism wouldn’t have it if their parents committed to clean eating.

He knows a lot about this stuff because he works out at Lifetime Fitness, got his teaching credentials but only taught for 7 months, and now works at Target Corporate. He also told me that he believes that I will die a conservative. I got pretty excited to exchange contact information so I can let him know my political leanings on my death bed.

He made it clear he didn’t want to ‘push’ his ideologies on me, because he could tell I was a really smart girl. Listening to him talk for 2 hours was just ‘hearing him out.’

At ten minutes, fifteen minutes, and every five minutes thereafter, I explained to him it was Saturday night and it was the time and place to have a fun time. I assured him that when I am dying, which is going be sooner than later if I don’t commit to clean eating, I would shoot him a text as long as I still had the feeling in my fingers.

As the night came to a close, and the snow fluttered down softly from the sky, I was thankful that my whole life could be changed by one guy, in one bar, on one night in November.

Ketones

I hadn’t thought a lot about ketones until a week ago when they hit with a vengeance. Ketones are a yucky thing produced when blood sugars are high for a prolonged period of time. They are the bodies reaction to the high blood sugar. You can have different levels of ketones in your system, depending on how high the blood sugar has been and how your body decides to react to it. The ketone test describes the amounts as: none, trace, small, medium, and large.

Whenever my blood sugar has run high, I have simply corrected until it came down. Correction doses are doses of insulin only to bring the blood sugar down (not as a part of eating something with carbohydrates in it). In the past, my blood sugar has usually come down pretty predictably. I’ve only tested for ketones once or twice before in my 7-year tenure as type I diabetic. And those two tests were just to see what happened. Both tests came out ‘none.’

On the Sunday before Memorial day, I was running between 300-450 all day. I was at home and munching on treats all afternoon, so I assumed I wasn’t giving myself enough insulin to cover what I was eating. Each time I’d test, a high number would appear on the screen. I felt okay, so I just kept eating and correcting assuming it would eventually make it’s way back into my desired range (between 80-120).

I tested before bed that evening and it came back as 350. I corrected one last time before bed, which freaked me out a little as I was risking going low while sleeping, but I figured if I didn’t give myself a correction dose, I’d wake up with a blood sugar of 1 billion. In the middle of the night I woke up feeling like a train had hit me. I was very nauseated. I tested again at 1:00am and was at 370. The (pretty large) correction dose had done nothing. In fact, my sugar was higher than it was before the dose. I started flipping out.

I am a part of some diabetic groups on Facebook. A favorite is called I Hate Diabetes (Type 1). A rather aptly named group, most people come with questions, concerns, and to complain heavily about the disease. I’ve read various posts about people experiencing ketones and ketoacidosis. Mostly stories of them having to go for a stint in the hospital. Thus, when my blood sugars weren’t coming down, I knew I had ketones.

I tested my ketone levels and they came back as “moderate.” It was the darkest color I had ever seen on the test, and started dreading a visit to the hospital. I looked up treatment for moderate ketones. Half the websites said: GO TO THE HOSPITAL. The other half said: drink lots of water, keep giving large correction doses, and keep testing blood sugar and ketones until they both come down. Water flushes ketones out of the system. Such a simple, but powerful treatment to a yucky thing.

So I made my first post to I Hate Diabetes and described my situation. The consensus among members and fellow T1Ds was similar to my Google results: half said GO TO THE HOSPITAL. The other half said treat it yourself for a couple hours and if it’s still terrible THEN GO TO THE HOSPITAL.

Over the course of 2 hours, I drank about 7 glasses of water, tested my blood sugar 10 times, and tested for ketones 5 times. I gave myself approximately 40 units of insulin to correct the high blood sugars. That’s a TON of insulin. For a Thanksgiving meal, I have given myself 25 from a pen at most. My insulin pump won’t let me give a single dose of more than 20 (you’ve got to split it up into 2 separate doses to bypass it). Basically, it’s a ton of insulin. Even 10 units of insulin given to a non-diabetic could kill them.

I started feeling better once I was at 120 with trace ketones. At 3:30am, I flopped down in bed–exhausted from the ordeal. After only one minute, my mouth started watering and I knew I was going to throw up. I leaped out of bed and dashed to the bathroom where I had the most violent and glorious vomits of my life. They broke blood vessels all around my eyes; the ‘gin blossoms’ lasting three days. After ralphing, I finally felt just right. So I passed out a second time–making it until morning.

And then I woke up low.

Good Streak

There was a three week period in January that my blood sugars were startlingly good. Each and every time I pricked my finger, I’d get a reading between 70-130. I hadn’t changed any variables, and I still have no idea why they were so good. Like all good things, the streak came to an end. I’m back to being ‘uncontrolled.’

With that lovely title reinstated, I have been doing my best to check 7-8 times a day rather than 4-5. I understand that the more times you check, especially if you’re not waiting 2-3 hours post meal, that the readings are likely to be outside of the target range. What I’m finding is that the more I check my blood sugar–the more people really realize that I have a chronic disease. When I’m hidden in my office, or checking in the bathroom, people forget that I deal with a disease 24 hours of every day.

A few days ago at lunch, I pulled out my test kit. A good friend and co-worker flinched and commented that the sight of blood makes her queazy. I wanted to respond with, “Hey! Me, too! It’s a good thing you don’t have to see your own blood 8 times a day.” Oddly enough, I had already completed the finger prick and blood test when she covered her eyes. I hadn’t made a scene. In fact, I had completed the prick and blood draw underneath the lunch table. I only set the PDM and strip on the table while it was calculating my number. No blood is visible with the Freestyle butterfly strips.

One day last week, two hours post-breakfast happened to land during passing time in the hallway, so I tested as I greeted students. The teacher who has his classroom next to my office strolled over and asked me how many times a day I check. When I told him 7-8, he was taken aback.

“Really?!”
“Yes.”
“Why so many times?”
“Because my body doesn’t make an essential hormone that regulates blood glucose. My complete lack of that hormone means that I have to take on the job of regulating it myself, or I feel very sick and eventually die. Your body does it constantly, without error. My body does it never, and I have to account for, and correct, my own human error.”
“Wow.”
“Yeah, man. It’s a trip.”

Invisible

I, inadvertently, invented a game with the one student at school who also has Type 1. While walking in the hallway a week ago, we crossed paths, and I simply said “105.” This number had been my most recent blood sugar reading. The kid smiled and said “nice!”

The next time I saw him, I said “161.” This time, he responded, “Aw man, 265!”  So the game began. Other students who witness our exchanges always look confused, as though we’re speaking in code. I suppose, we are, in a way. They ask him what our numbers mean, but he just smiles and says, “figure it out.”

And so we’ll keep playing each day in the hallways, but we won’t keep score. I’m not sure we can keep score, with all of the variables that affect a blood sugar–bolus rates, basal rates, carb counting, glycemic index of the food we eat, illness, amount of sleep (or lack thereof), stress, exercise, even the temperature of your office.

The game isn’t about keeping score. It’s not even about who has the number closest to 100. It’s about remembering that we’re connected through a shared reality, a shared patience. A game that helps us, or at least helps me, feel a little less invisible in my experience with a chronic illness.

Shot

I just finished reading Amy F. Ryan’s SHOT. I picked it up from the library on Friday afternoon, and blazed through it. It was, of course, a lot easier for a diabetic to read quickly because I already know the medical terms and the diabetic jargon.

All in all, it was a good read. It was causing me a little bit of anxiety at the beginning. She was diagnosed and sent home without any hands-on training or education. When I was diagnosed, I was pretty sick. I was deep into DKA. There was no denying that I needed to be admitted to the hospital for some serious management. But because Amy’s symptoms weren’t presenting as life threatening, they sent her away with some prescriptions and brochures.

That freaked me out. Although my education in the hospital wasn’t by any means comprehensive, I at least left with an idea of how to calculate for carbs and correction doses. Only in the following months and years was I able to piece together the nuances of diabetes. I wasn’t told about ‘stacking’ insulin until 4 months in, nor was I told about the effect of exercise on blood glucose levels until a year in.

With how many medical personnel are involved in the treatment and care of people with diabetes, I’m sure they all just assume that ‘someone else must have told them.’ I could probably write a pretty awesome comprehensive curriculum for newly diagnosed type 1 diabetics. Of course, coming from teaching students with special needs, the whole thing would be easy to understand, well designed, structured, and have tons of visual supports. Hopefully it could be ‘covered’ within a 1-2 day hospital stay, or in 1-2 days after being sent home.

Who can help me make this happen?