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.

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.

Everything’s Up

I had an appointment with my interim diabetes practitioner on Friday afternoon. Dr. K is on mama-leave with her kids, so I’m seeing PA. L, who is an endocrinology physician’s assistant. I had my labs done and everything is up including the a1c. It’s now at 7.4. As much as I’d like to blame it on the Freestyle test strip recall, it’s also due to guessing on carb counts at lunch everyday and eating too many treats at work. We made small changes to my basal rates, bolus rates, and correction factor, but two mornings in a row, I’ve gone low at the all day correction factor of 22. Between 6am and 9am it should probably be closer to 25. It all feels like one big test of trial and error, but at least the snow is melting.

I also donated a pack of unused Levemir pens to the clinic, along with 100 or so used pen needles. Just kidding. They had not been used. They were sealed and all. Since I use a pump, I don’t have a need for the long acting insulin. It’s been sitting patiently in my refrigerator since two Octobers ago. The expiration date is August 2014, so I figured I should let some living being get use out of it before it goes to waste.

I contacted a twin cities dog rescue, and they told me they would be happy to take it. Dogs use the same long acting insulin as humans, albeit in smaller amounts. I noticed there was a diabetic doxie on their site named Junior Mint, and emailed them letting them know that I would be happy to donate the insulin to be used for any dog that needed it, and that if a family adopted a diabetic dog that I would be more than fine with them taking the insulin to ease the initial cost of the adoption.

After consulting my ever wise and patient sister, Beth, I decided I should offer it to the nurse educators at my endocrinology clinic for human use. They have an ’emergency supplies’ area for patients who are in between insurances, aren’t/weren’t covered for health insurance, or don’t have enough money for their prescriptions even if they were covered. The clinic happily accepted it, and I feel good today knowing that the insulin I donated will keep someone from having to urinate 46 times a day, blurred vision, headaches, and a general feeling of malaise.

Sticking

I’ve been wearing the OmniPod now for 3 full days. The pods are sticking and I haven’t managed to knock it loose or disrupt them while I sleep. It’s suck to my left ‘flank.’ It’s a little bulky, but I don’t really notice it anymore.

I changed the pod this afternoon when I got home. It had been beeping at me during an IEP meeting at school. I apologized for the noise and told them that I had an insulin pump that was reminding me to change it…in four hours. Everyone laughed. Even the staunch english teacher in attendance. I need to change the reminder setting to an hour, or I have to remember to bring the PDM to my meeting so I can confirm the alert.

It’s all been pretty peachy, other than having than having it set to give me way too much insulin at the beginning of the week. When using pens, I was giving myself close to 100 units per day of Novolog and Levemir. Because insulin pumps are more efficient, and because it only uses short acting insulin (Novolog or Humalog) that is more predictable, Dr. K decreased my insulin usage by 20%, the average decrease in insulin use when going from pens to the pump. It turns out that I probably am using only 50% of what I was using before.

Each pod can be filled with 200 units of insulin. I only used 150 in the full three days that a pod will remain active before shutting itself down. If left on longer than three days, there is a higher chance of infection around the cannula site. Anyway, this second pod I only filled with 175. I also managed to extract the 50 units of unused insulin from the first pod and use it in the second. Nifty! I don’t know if its completely safe/healthy and by no means did my doctor recommend doing it, but I saw videos and posts on OmniPod boards and people do it all the time successfully. Why waste that insulin? It’s expensive!

I moved the placement of the second pod by about 2 inches. It’s a little bit closer to my spine this time, but still in a good ‘soft’ place a.k.a. place with enough fat under my skin. It feels more comfortable in this second placement because I don’t lay on any part of it while sleeping on my side. The other placement wasn’t uncomfortable, but I’m digging this one better. Once it gets colder and I’m wearing long sleeves everyday, I will try putting it on my arm. People are gonna think I’ve got guns! Except it will only be on one side.

Tomorrow

I moved up my OmniPod training to tomorrow (October 1st). I will be trained by a nurse educator from the Insulet Corporation. I am going to meet with her in a conference room at my regular nurse educator’s office.

Mama and papa are coming down this evening and staying over so that they can meet me at the appointment tomorrow. I figure it will be easier for them to come and see how everything works than for me to have to explain it all to them. I’m sure I’ll still have to explain things, but they’ll have fun coming down with Pippa for a little overnight. Plus, we’ll probably go to Thai food tomorrow night. And they’ll pay. Can’t beat that!

I have always had to estimate how many carbs are in my favorite Thai dish: Pad Thai Curry. It’s a traditional Pad Thai recipe with red curry added. It’s phenomenal, and I’d eat it every three days if my checkbook allowed it. I will take the time now, in celebration of the pump, to look up how many carbs are in a serving of rice noodles. And then I will have to multiply it by 192310. Because that is how many servings are in a typical restaurant plate. It looks like there is 42g in 1 cup. They definitely give you about three cups. So 42 x 3 = 126. After I have the pump… that’s all the math I have to do! But, since I don’t have it quite yet, let’s continue with how much math I usually have to do when I eat.

I’ll probably have dinner at about 7pm tomorrow night. This means that my ratio will be 1 unit of insulin to every 5 grams of carbohydrate. So we take 126/5. This equals 25.2. I round down to the nearest unit because insulin pens can’t do partial units, and because I wouldn’t want to end up passing out two hours later. I’d dose 25 units…IF my blood sugar at the time of eating was perfect (between 80-120). If not, then I add my correction dose. Let’s say I’m at 200. My correction dose would be 2 units. 25 + 2 = 27 units total. Theoretically, two hours later when I test, I should be pretty close to 120.

I explained this process rather explicitly because I have a quite a few readers who are friends and family, and who despite very honest efforts to understand the inner workings of diabetes, have no idea how much goes into figuring out how much insulin to give myself. I also explain it to illustrate how human error can effect a dose. If I figure a dose using the wrong time frame (my ratio is different for different times of the day), then I end up with a bad blood sugar. If I don’t calculate the right number of carbs in what I eat, I end up with a bad blood sugar. If I don’t correct accurately, I end up with a bad blood sugar. If I’m stressed or worried and my body produces cortisol, I end up with a bad blood sugar no matter how accurately I dose. And I have generalized anxiety disorder.

In sum, it hasn’t been a very fun last five years. When I was first diagnosed, my endocrinologist wasn’t very understanding of the anxiety piece. He seemed incredulous that I could be at a perfect 100 before an anxiety attack, and 350 afterwards. It happened. It still happens sometimes after a tough call with a parent of one of my students, after a challenging therapy session, and when I think about how much I have to pay in student loans. I’m kidding about the last one (sort of).

Dr. H Was also not very understanding of the learning curve for understanding dosing. He gave me a lot of information in piecemeal bits, expecting that I’d inherently know the intricacies of the disease simply because I have it. For instance, a big rule is not to “stack insulin.” This means, if you’ve given yourself a correction dose in the last 3-4 hours, that you don’t correct again within that timeframe. This is because the insulin is still working for that many hours. If you give yourself any more insulin, you’re going to end up with a really low blood sugar. He didn’t tell me that until I’d been seeing him for 6 months. He also never really explained the relationship between exercise and dosing, which is not linear.

Now I’ve got Dr. K on my team, and things are going a lot better. I had my final insulin pen a1c test done on Friday afternoon. A good a1c for a diabetic person is less than 7.0. In the last year I have gone from 9.4 to 7.9 to 7.5. I’m hoping that it’s about 7.2 this time, but I’d be happy with another 7.5. I’ll keep you updated, because I know you all care as much as I do. 🙂

Tired

Today I am tired of having diabetes. Most days I’m up for the challenge, but today I’m not.

Many times when I tell people that I have diabetes, they ask me how ‘in control’ I am. Right now the answer isn’t good. Some days I feel mostly in control, but many days I have no idea what the heck is going on with my sugars. It feels like no matter how many times I test or how diligently I count carbohydrates–my sugars blow.

Some days I get so frustrated that I avoid carbohydrates as much as possible, but then I find myself ravenously hungry at 8pm with a mighty will to throw all the romaine lettuce and string cheese in the garbage. Carbohydrates are what tastes good. They sure make everything more complicated.

I don’t know how many people with type 1 diabetes ask themselves the “why me” question. I’ve been asking myself that question on a regular basis as of late. I’m sick of it, but I’m more sick of feeling like I am the one to blame because my rhythms and ratios remain a relative mystery. I’m successful at most everything else I do in life, but when it comes to counting, calculating, and correcting, I just can’t seem to get it right. I feel like a failure. I want it to be someone else’s turn. I want to be healthy and slim again. I don’t want to have to spend an hour on the treadmill everyday to gain weight slower than I already do. Most days I feel like Andrea in a fat suit.

In the past when the pump has been an option for me, I was always a little bit apprehensive. The insulin pump and infusion site might feel like a constant reminder of being a freak of nature. I don’t need anymore reminders that I am different (and only alive due to the miracles of modern medicine). So I’m at this crossroads where I have to choose between this expensive piece of equipment that might help control my blood sugars, and just throwing in the towel all together. I can’t really give up because I know how utterly lousy I feel when I have run high for more than 4 or 5 hours, and I don’t want to die. So. I guess I give this insulin pump a shot. What else can I do? Some have said that insanity is doing the same thing over and over expecting a different result. I’ve been doing the same thing now for five years. Am I crazy?

The Endocrinologists

I’ve had three endocrinologists since my diagnosis. I really get around.

My first endocrinologist was Dr. H. He came to see me the second day in the hospital. He was a tall, rather handsome guy in his late 30s. I totally looked for a ring. And he was totally married. This came as surprising after I met with him the for the first time as an outpatient. He was a bonafide science project. Dr. H had a distant, awkward, embarrassingly terrible bedside manner. He told me on various occasions that I had to wait until the end of the appointment to ask any questions. He would line all of his papers and my papers on the desk in a wildly obsessive way, and made eye contact with me about twice in two years.

I ditched him when I moved to Pittsburgh for graduate school. There I was matched with Dr. R. She was a tall, leggy blonde in her 50s. I saw her all of two times. It wasn’t her. It was me.

Now I see Dr. K. I should note that both her first and last names are impossibly Greek. She is down to earth, funny, and realistic. She has pretty bad hair, but I will never hold it against her. Her nurse is also Greek. They would at least bronze medal as a team at an endocrinology olympiad. I’m happy to have found them. I will also never tell Dr. K that I chose her based on a (poor) review (on some write-your-own-review-of-doctors/teachers/electricians website) describing an incident where she drew a patient’s take-home instructions into a comic strip instead of giving them an itemized list. The patient was insulted. What a prude.