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.

Ages

Sticking to my new years resolution and training hard for the Earth Day Half Marathon in St. Cloud, MN. It’s not imaginary anymore. I have the pleasure of running it with my cousins Christy and Emily. Hopefully Matt joins us, too (but he never signs up for races longer than 2 weeks in advance).

I have been using the Temporary Basal option on the OmniPod during my runs. I started by decreasing my basal (background insulin) by 50% for 2 hours. I ended up low about 3 hours after each session, so I change it to 50% for 3 hours (which is the maximum time period for a temporary basal). The longer I ran, the lower I went 3 hours post workout. Through trial and error, I have my current running temp basal at a 90% (yes that’s ninety percent) decrease for 3 hours. I start it about 20 minutes before I actually start running.

I have also had to decrease my insulin across the board. The regular running has increased my sensitivity for both my insulin to carb ratio (was 1 unit to every 14 grams of carbs, now at 1 unit for every 18 grams of carbs), as well as my correction factor (was 1 unit to lower me 34 points, now is 1 unit to lower me 40 points).

Right now I’m waiting for a call from the nurse line to see if my throat culture grew a streptococcal jungle.

Too Far

A new online diabetic friend, Sophie, posted that yesterday was her one year diagnosis anniversary. It was a rough day, and it got me thinking about my upcoming appointment with PA J (Dr. K’s physician’s assistant).

I know my a1c is going to go up. Last time it was the lowest it had ever been, at 6.9. However, this was an artificially low number. Over the course of a month or so, I had been increasing my insulin rather than decreasing it. I did this through decreasing the number in my insulin to carb ratio as well as by decreasing the number in my correction factor. For some reason, my brain was thinking, “decrease number = decrease in insulin.” Well, it was a stupid mistake. Decreasing the number in either your insulin to carb to ratio or your correction factor actually increases the amount of insulin you receive.

Long story short, I was experiencing extreme lows nearly everyday. This drove down my a1c number in the long run, but wasn’t healthy or safe. I figured out my error with PA J, and I have had far fewer lows in the last three months. That means that the a1c is probably going back up. My guess is she’ll come in at about 7.3.

When I have upcoming endocrinology appointments, I get to thinking about all of my past failures and how all the chips are going to fall in the future. I should have googled what was in those brownies. And that frozen yogurt. And everything I ate that I estimated for. Will I go blind? Will I have neuropathy? Is it all my fault? Is it all under my control?

The answers are all yes and no to some degree. The only principle that remains true is that I try to manage my health the best I can on any given day. Some days are much more regimented than others, but it is not to say that the less than perfect or terrible days are terrible ever for a lack of trying.

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.

Leave A Message

Last night, Beth and I went to see Eric Whitacre at Orchestra Hall. On the way there, I saw Al Franken getting out of his car in downtown Minneapolis. I immediately smiled and waved; it was that excited 6-year-old-whole-arm-hand-flapping kind of wave. He cracked a smile and waved back at me (although much more casually).

The concert was pretty much perfect, save for my pod and PDM beeping THREE TIMES DURING THE SHOW. The first time, it beeped to tell me that it was one hour until pod expiration. The second time, to tell me it had hit the 62-hour expiration. We were seated in the back, but it was still an audible beeping to those around me. It’s not just one beep, it’s a rhythm (beep-beep beep-beep, beep-beep beep-beep). To top it off, the actual PDM emits a sustained beep when you turn it on to silence the pod from beeping. Normally it’s not a problem, but in the middle of a classical music concert, I felt very embarrassed.

The third time it beeped, it was warning me that my pod had 20 units left in it. By that third notification during the concert, I was exasperated. I considered ripping it off and tossing it into a garbage can outside. On further consideration, I realized that someone might think a beeping item with electronics in a public trash can was a bomb–something. So I left it on, and prayed that it wouldn’t beep anymore after the third disruption.

I have the PDM set to vibrate only, but some notifications will always beep, even when set on vibration. I wish OmniPod could make a silent feature available, but I suppose there are some people who absolutely need every one of those reminders.

I’m at home now listening to a recording of The River Cam, and hoping that the next time I see Eric Whitacre, that I remember to put on a completely new pod before showtime.

OmniPod Adhesive Update #3

It’s probably a little early to report the results of an experiment submitted by a reader, Donna, to curb the skin reaction caused by the adhesive on the pods, but so far so good…

Donna posted a comment on my OmniPod Adhesive Update post saying that she had found a way to prevent the contact dermatitis! A nurse told her to apply a water soluble corticosteroid to the skin before putting on a pod. The water soluble corticosteroid of choice? FLONASE (Or any generic equivalent)! Yes. That stuff that you sniff in your nose to help with allergies.

As fate would have it, I’m allergic to my wiener dog, and already have myself a prescription for fluticasone. Before going ahead and using a steroid on my skin, I consulted a doctor who is a family friend. She gave me the go-ahead. So I tried it, and the result was magical.

I spritzed the fluticasone on my skin and waited until it was dry. Then I applied a new pod. The pod was on for 2.5 days. No issue with reduced stickiness. I would estimate the reaction was reduced by 80-90%! It was completely comfortable for the whole duration. I pulled the pod off today after my shower and there was no severe reaction like before. My skin used to look and feel like a giant mosquito bite. Not this time!

This really is a Christmas miracle! (And totally makes up for the Christmas Eve miracle that wasn’t a miracle at all).
Thank you, Donna!

OmniPod Adhesive Update #2

In the last two months, I’ve been experimenting with a lot of different techniques and topical creams to quell the intense discomfort that the pod adhesive causes my skin. Now that the air has turned dry in Minnesota, the contact dermatitis is very scaly as it heals.

I’ll cut to the chase. The best method I for caring for and treating the dermatitis is as follows:
1. If possible, remove the pod after a warm shower when the adhesive is water-logged.
2. Don’t wash the area with soap. Cetaphil types might be okay, but I haven’t tried them.
3. After the area is relatively dry, apply thick layer of lotion with Shea Butter. Rub gently, but let most of it absorb on it’s own.
4. Re-apply a thick layer each day thereafter until healed.

My sites were taking up to 10 days to fully heal, and now it’s down to 3-5. I’ve just been using Bath & Body Works Body Cream. Simple as that. Nothing too expensive, nothing medicated. Previous to this, I tried: alpha hydroxy acid (AHA), hydrocortisone cream, triple antibiotic ointment, and petroleum jelly, all in varying amounts. Nothing heals it like plain old Shea Butter!

New Site

I wrote previously about the contact dermatitis that I have been experiencing, likely caused by a chemical in the adhesive that sticks the pods to my skin. As winter approaches, and the humidity in the air decreases, the dermatitis has worsened. I made an appointment with a dermatologist in March, because they are scheduling out that far. In the meantime, I will need to figure out what to do.

For the first time, I put the pod on my thigh. Its on the front, but toward the outside. This way I don’t lay directly on it when I sleep on my side. It feels a little funny there, but only because I’ve never had a pod there before. I added an extra strip of 3M IV tape to it just to make sure it stays on. Its been working! Meaning the insulin is absorbing there, so I can’t complain. This is all in hopes that my other sites (my arms and the left side of my back) will have some extra time to heal before I use them again. All in all, alternating infusion sites is recommended, so I’m glad I found another place that works. I plan to wear dresses with tights on Monday and Tuesday, so they’ll be completely hidden. It just looks like I have something in my pocket when I wear pants.

I realized that I completely missed my diagnosis anniversary this year. I’m not sure if that’s a good or a bad thing. I like to remember it because usually I can weasel some special treatment out of my family for it 🙂 Sometimes we go to dinner, sometimes mama gives me a little present. This year, September 17th came and went without anyone batting an eyelash.

I thought about it once at the beginning of October, but it came to mind again on Friday night when I was out with a friend. I got a text from one of my best friends, Sören, a 3rd year medical student. The text was simply two photos. One of an infusion site stuck to his abdomen, and the other of a Medtronic MiniMed insulin pump. I guess his assignment was to play around with an insulin pump for the weekend, using saline of course. But he really activated the site. I ended up with tears in my eyes after seeing the photos.

People have allowed me to check their blood sugars in the last 6 years, but no one has ever offered to stick a pen needle into themselves before. I think it’s because they ‘get something’ out of having their blood sugar tested. They get the result that tells them they’re normal. They don’t get anything out of sticking a needle into themselves, unless they like that kind of thing. The majority of my friends and family do not like that kind of thing. So having a friend that is a little closer to understanding the experience of diabetes is comforting. Thanks, Sören!