Dec 8 2012

Bolus Like You Mean It!

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The term “rage bolus” is one I learned from the diabetes on-line community. I was so excited when I read it. I’ve experienced it plenty, but could never properly put it into words. To rage bolus is to become so frustrated and angry with blood sugar that will not come down, particularly when you have no idea why, that you angrily jack up the insulin. Often taking an amount well past the correction you’re supposed to need. This is fraught with risk, of course, because it can just as easily cause a terrible low that will send me on a miserable glucoaster ride.

I’m there. I have patiently tried to get my bg down for over 10 hours. Still, it remains in the 280-305 range. What the hell? I think the rage comes mostly from not knowing what’s causing it. Diabetes is a disease of constant anticipation and second-guessing – If I do “x”, how much more/less insulin will I need? What did I forget to factor in that caused this high/low? I have flat out no idea what’s causing this, and worse, why won’t it come down?!? This makes me furious. And sleepy. And thirsty.

I just got my insurance to send me more blood test strips and I don’t want to burn through them by obsessively testing my blood every 15 minutes. They also just sent me more CGMS sensors so I can at least occupy myself by obsessively checking the Dexcom receiver. Still, the sensor hasn’t been in a full 24 hours yet and it can be a little wonky during that first, full day. That thing can’t be right, right? I think I’m being pretty disciplined by only testing every 30 minutes and while the meter and the Dex aren’t totally in sync, they really aren’t far off.

Once it finally starts to budge, the hypo watch will start and I’ll still be obsessively checking to make sure I head off any severe low. At that point, the acute bolus regret will kick in. It’s a lot like thinking about the company Christmas party the next morning. What was I thinking? That’s a made-up example. I have never done anything I regretted at a company Christmas party. I’m pretty sure.

Now the “double down” arrows are here. It’s time for the panic eating to start sounding like a very reasonable course of action. The active insulin my pump is showing could easily cover a few slices of pizza. I’ve eaten exactly one fried egg-white in a whole wheat pita today.

I started writing this to distract myself from taking even more insulin. Now I’m writing to keep myself from drinking a Coke “just to be safe”. I will compromise with a Diet Coke. And a gossip magazine. Yes, I’m feeling calmer now. Let’s see what the Lohan family has been up to!

Dec 3 2012

Dexcom & Insurance

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I will start by saying I have very good health insurance. I’m extremely fortunate to have access to it. The insurance industry’s treatment of Diabetics as a whole is unconscionable. Their discrimination is shameless.

Still, my insurer does have their quirks. Namely, if they think I’m using too much of something they will argue with me about it. I test my blood a minimum of 8 times a day, and a lot more if I need to. My insurer told me the ADA only recommends 4 times a day. My doctor wrote a prescription specifying that I have to test my blood at least 8 times a day and that has worked. I also suggested to the representative I was speaking to that she send an email to risk management or whoever makes these decisions and ask them to compare the cost of paying for more blood strips vs. the cost of buying me oh, say, a new kidney.

As of yesterday, I have run out of Dexcom sensors. Not forever, just for a couple of weeks. Still lucky, I know. Again, my insurance will not send me more until mid-December – when they feel I should be running out. Based on wearing a sensor for 7 days, I should be fine until mid-December. However, I lost two of them early due to my skin starting to react to the adhesive. I withstood the itching for as long as I could but only made it 4 days. The rest of the time, I have no reaction to the adhesive and I have no idea why it varies. I usually wear it high on my upper thigh or my upper arm. I lost one when I inadvertently caught my pants on it and ripped it off.

I haven’t had a Dexcom for very long, but I immediately grew dependent on it. Wearing it made very clear to me that a blood sugar result with no context is a lot like throwing a single dart with no idea what the score really is. I’ve been doing this for 33.5 years without Dexcom and I can certainly do it for two more weeks, but I doubt my control will be as good. But I will focus on being grateful I have access to it at all, and keep an eye out for my new BFF, the UPS guy!

Nov 29 2012

Why have a blog?

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The third week of the Joslin Blog project asked bloggers why they started writing. Since my site is about a minute old, it’s pretty easy to remember how it all started.

There are a lot of diabetics who’ve created an amazing array of blogs, tweets and an incredible on-line community of support. I can’t believe I could’ve found them earlier if I’d only thought to look! Yet, even with all that’s available to me, I felt strongly I needed to have my own blog.

The reason is that I constantly forget that I’m a T1D. That might sound pretty great, but the reality is that I forget to put my health at the top of my priority list. I test my blood a minimum of 8 times a day, but I stubbornly refuse to give this disease much space in my life. A dose of defiance can be a powerful thing – look no further than the inspirational Team Type 1!

It’s not as great when it leads you to be dismissive of your own well-being. After the kind of nasty low/wicked high combo any T1 can tell you about, is telling yourself to suck it up and get to work on time possibly a little too harsh? Is it right to stay in a meeting while you feel the low coming on because you don’t want to inconvenience everyone by asking for a break? Is it right be totally embarrassed to have to ask a Judge for either a short break or permission to eat in the courtroom?

I started this blog to give myself permission to make a little more room for diabetes in my life, to remember to be kinder to myself and to finally embrace the idea that acknowledging T1 is not a weakness.

Nov 21 2012

Taking the Night Off

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Every week I download all the data from my Dexcom and my insulin pump and surround myself with pages of data that I’m not sure what to do with. Daily Modal, Hourly Modal, Trends, Success Reports, Sensor overlays, etc. I end up with pieces of paper covered in tiny dots and graphs, sometimes smiley faces and sometimes red danger arrows. I usually pick out one or two things from the whole pile and berate myself for them.

With hundreds of bits of data to choose from, I look at the ones that are out of my target range and my mind will try to spiral off towards all the terrible complications that await me for this failure.

But, in the last month I’ve said goodbye to two friends. They were each taken in shocking and sudden ways. One was 46, one was 41 – neither was diabetic. It’s time for some perspective. I’m still not happy with my blood sugar all of the time. I’m still scared about all the complications I’ve been hearing about since I was a little kid. I’m still upset with myself every time I have a high or low and I seriously have no idea WHY.

But, I am also still here. I’m alive and I have my eyesight and all of my limbs. I’m going to attempt to let myself off the hook tonight for all the “failures” in my diabetes management. Diabetes is hard and it’s scary. It’s also not the only thing in the world. And it’s a poor excuse for taking the present for granted by obsessing over the “what-ifs”.

Nov 17 2012

The Joslin Blog Project: Changes

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The Joslin Diabetes Center in Boston is the biggest, baddest treatment and research center for Diabetes in the world. I’m a huge fan. As part of their fundraising and awareness efforts they’ve asked bloggers to answer one question per week for the month of November (Diabetes Awareness Month). This weeks question is Changes: What were the biggest changes you went through after diagnosis, and what were (if any) small things you didn’t realize would change.

I have been asked this many, many times. This is probably a question that’s better posed to my parents. Everyone I know who was diagnosed at a similar age to me (7 yrs.) always has the same answer to that question – I don’t know, I don’t really remember “before”. That’s not to say I don’t remember my life at all before age 7. It’s just that my mind can’t call up an image of just being allowed to eat. Or what it was like to not take shots. About 75% of the time when I say that, whoever I’m talking to tells me that, in a way, I’m really very lucky I was so young because it would be so much harder to have a clear memory of “before” and “after”. Please shut up. That is a stupid thing to say to someone. Yes, I know you were just trying to be positive. It’s ok, you don’t have to try and spin it for me.

I suppose my main “before” memory is just of being really, really sick. I remember being confused that I was not getting better. I’d had plenty of childhood ear infections, viruses etc., but they always ended. I do remember hoping each day that this would be my last sick day and tomorrow I’d wake up feeling better. Instead, I woke up either the same or sicker each day.

After the initial diagnosis and hospitalization, when life resumed with the new normal, the biggest change I noticed was something that felt like a total loss of anonymity. Everyone knew I was diabetic. All the teachers, all my classmates, the principal, the school librarian, the school nurse, my dance teacher, all the neighbors, everyone at church, all my friends and their parents. Everyone knew what I ate, when I ate it, when I was supposed to eat again, what I was supposed to eat if I was dropping. Everyone kept an eye on me for signs that my blood sugar was getting too low. I was keenly aware of the loss of privacy.

Yet, I know that my parents worked very hard to fight against me being singled out. They never wanted me to feel different or self-conscious. They must have been in such a difficult position, because they clearly needed adults to be keeping an eye on me when I was away from them. This was before blood monitors even existed, so lows had to be spotted by observation. My mom must have felt like she had a new job as a diabetes educator. I was literally the only diabetic in the elementary school. The only other kids like me that I knew, were kids I met at the hospital. I may not remember the change from non-diabetic to T1D very well, but I vividly remember the change from “normal” to “different”.

 

Nov 15 2012

Awareness Ribbons

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Awareness Ribbons are everywhere. When I was a kid I knew about yellow ribbons tied around old oak trees, but that’s it. The first time I heard about a disease-specific ribbon was a red ribbon worn for AIDS awareness. I think Sharon Stone had something to do with starting it.

At any rate, my mom has wondered aloud for years – “Where is the diabetes ribbon? Why don’t you guys have one yet! You’ll be the last disease to choose one and then all the good colors will be gone! Look at Breast cancer – they own the color pink.”

This chart illustrates a mere fraction of the awareness ribbons in use today.

Diabetes has finally promoted its own disease awareness symbol! Our color is blue and instead of a ribbon (ribbons are so 2011) we are using that most universal of symbols – a circle:

Apparently yesterday was World Diabetes Day! The more involved I become in the online community of diabetics the more I realize just how big it is and how many wonderful, supportive people there are in it. This is the least alone I’ve ever felt with this disease.

 

Nov 13 2012

Core Competencies

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This is a guest post today from one of my favorite T1D blogs. He was helping his wife update her resume when he started to wonder what it would look like to list T1D on his. I think the idea of putting diabetes management on one’s resume is awesome and a very fresh way to think about it. Below is Robert Coombs’s hypothetical resume:

T1D – Executive Officer – July, 2007-Present

  • Served as the primary staff and strategist for a lifelong sustainability project.
  • Recruited, coordinated and directed a team of healthcare professionals with routine contacts regarding project maintenance, innovation and performance.
  • Studied the latest research in endocrinology, nutrition, and skincare in an effort to integrate new discoveries into existing treatment methodology.
  • Identified and achieved measurable outcomes on a quarterly and annual basis with 90% success over 5 years.
  • Adhered to a strict schedule with more than a dozen discrete and complex tasks performed daily including the use of data analysis, algorithmic decision making, and constant multitasking.
  • Nearly 2000 consecutive days without a single absence or vacation.

The unfortunate reality is that I would never put diabetes on a resume or even mention it in an interview because, much more than admiration for your multi-tasking skills, talking about it will raise questions like, so how often will you be out sick? How much more will insuring you cost this company? I’d be forever emblazoned with the scarlet “P” (pre-existing condition).

It also never crossed my mind to count the days! Even shaving off a year or so,  I haven’t taken a day off from my job as CEO of Diabetes Management in over 11,680 days!

Nov 11 2012

Not him too!

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This guy had his blood sugar tested last night. I don’t just check my dog’s blood sugar for fun – although I’m tempted too, just to lower the average result my meter shows.

A few weeks ago I took him to the vet solely to update his Rabies vaccine. I was shocked when he weighed in 6 pounds less than he always does. The vet wasn’t worried and I increased his food.

However, yesterday he drank so much water I had to refill his bowl multiple times and he had to go out much more frequently. While taking him for a walk about 30 minutes after our last outing, I was seized by this thought: THE DOG IS DIABETIC TOO.

A million thoughts ran through my head and by the time we got back to the house I was thoroughly freaked out. I’ve got my hands full managing my own diabetes, how am I going to manage his too? Can he wear my back-up insulin pump? Will my insurance notice if I add his insulin order to mine?

It’s embarrassing to admit, but part of me was also like, “Dude, I’m not paying the massive upcharge for an emergency vet visit tonight. Mommy’s gonna give you a shot and we’ll go during regular hours, OK”?

I gave him a new bone to focus on and I’m pretty sure he has no idea that I  folded back his floppy ear and pricked it as lightly as I could. He clocked in at a perfect 81! Now I just have to figure out what non-edible object he consumed that made him so thirsty…

Nov 10 2012

Primary Care Doctor, You’ve Been Voted Off the Island

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This happened last week,and I’ve been upset about it ever since. This is a long post, but I feel a little better. Now maybe I can stop thinking about it.

I’ve recently started looking for a primary care physician. I haven’t had one in years. There’s a guy I’ve gone to a couple of times in maybe three years. I can’t remember his name and I doubt he could remember mine. I had a great PCP that I really liked, but she left the practice to spend more time with her young kids. Fortunately, I don’t need one very often and my life is filled with specialists so I rarely even think about it. Lately though, I’ve had persistent swollen lymph nodes so I asked one of my specialists for a few names of people who are similar to her in their approach. The person she really loved is not accepting new patients, her second choice is too far away and the third was a physician she doesn’t know too well but has always liked working with AND her office is 15 min. from my house. Sold.

My first appointment was on Election Day. I mention that only because she went off on a long tangent about voter suppression. And that was the best part of the whole visit. I don’t know what bothers me more – her comments to me, or the fact that I didn’t tell her off before I left. Sure, she was brusque and not terribly warm – but I’m happy to tolerate those flaws in an otherwise great doctor.

She asked what brought me in and I told her about the lymph nodes and that I’m almost always exhausted. I’ve checked out the usual suspects – vitamin D, anemia, thyroid – all are controlled. She asked what my most recent A1c was – “7.5”, I answered. That’s all I got to say, because the appointment turned into a condescending lecture/ guilt trip about how I need to do better. She never heard anything else that I said.

She informed me that 7.5 is WAY too high and I will never feel good until I get that number down. It should be 6, maybe 6.2 would work, but absolutely under 6.5. It was a crossroads for me – either defend myself or tell her to go get certified in internal medicine if she wants to play endocrinologist. The guilt-stricken, scared little kid desperate to defend herself side of me won out.

“6.5 or under is not necessarily a safe goal for someone with hypoglycemia unawareness”, I said. I was still feeling confident that I know more about this than she does. “A non-diabetic has an A1c of 4.5 or 5 — 6 is well above that and a score of 6 is well out of hypoglycemic range. But 7.5! That’s equal to an average BS of what? 180? 190? That’s far too..”

I interrupted her – 7.5 corresponds to about 165. “The point is”, she responded, “It’s way too high and certainly not hypoglycemic”. No, I thought to myself, the point is you don’t know what you’re talking about.  Still, hypoglycemia unawareness is its own topic and I’m not going to waste time talking about it now.

I try to steer the talk back to the actual symptoms I came here for. She’s not having it. “It sounds to me like you have the symptoms of pre-diabetes”. Umm, maybe she’s trying to joke with me? So I laugh, “You’re about 34 years too late with that one!” No, she is serious. “In pre-diabetics we see glucose toxicity, you see too much glucose in your blood is actually toxic to your body. People don’t realize it’s really a toxin”.

“That still doesn’t explain how I could be pre-diabetic and diabetic AT THE SAME TIME”. She changes course slightly here – what she’s really getting at is insulin resistance. “In people who’ve been diabetic for as many years as you have, we can begin to see insulin resistance – essentially you have Type 1 but you’re now adding the classic symptom of Type 2, which is insulin resistance”. She is right that insulin resistance can really affect anyone. But it usually goes hand in hand with one of two things: being overweight or being pregnant. Is she calling me fat? Because, sister, you’ve got more to lose than I do. Unsurprisingly, insulin resistant people are on very large doses of insulin. “How can you bring up insulin resistance when you don’t know how much insulin I take? Resistant people take a lot of insulin, even as high as 90+ units a day. I take an average of 26 units per day”.  “Exactly! 26 units and it’s obviously not enough or you wouldn’t have an A1c of 7.5”.

This is what bothers me the most – I started to fight back tears. I felt ashamed and embarrassed at my failure to control diabetes. “I work really hard at this. I work my ass off trying to manage this. I check my blood at least 8 times a day and wear a CGMS too. I’ve been chasing the perfect A1c since I was 7 years old.”

“You’re not supposed to be ‘chasing’ your blood sugar, you’re supposed to be managing it”. Resistance is futile. And she is a Grade A jerk.

 

Nov 9 2012

Diabetes and Trials

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No, not that kind of trial – nothing clinical, medical or research related. I’m talking about an actual courtroom trial. I am an attorney and today was a trial that I have been anticipating for almost 6 months. The case has taken a number of crazy twists and turns, plea bargains that fell apart and continuances. But today was the day. I felt really good about my level of preparedness. I spent a lot of time developing my trial strategy and I came to Court today ready to go.

Except for one thing – managing my diabetes combined with the adrenaline rush of a trial and the unpredictable nature of taking a break and grabbing something to eat. I woke up extremely nauseous and unable to eat, due to nervousness. I know skipping breakfast is not my friend so I eventually managed something with a little extra protein.

Whatever low the delayed breakfast might cause will be more than offset by the surge in adrenaline that’s about to jack my blood sugar by 200+ points if I don’t head it off. I have started using Ativan as needed to help block the physiological response adrenaline causes. I know – it’s a benzodiazepine, they can be addictive, they should be used short term. Worth it. At least for me.

So the anticipated rise began as I packed up my files and headed out the door. By the time I got to Court, the dreaded double up arrows were still on my Dexcom. What to do?

I hate “stacking” boluses. It just gets confusing and makes it really, really hard to analyze later because you can’t easily pick out what factors were at work at any given time. So…I looked at the correction bolus the wizard gave me, took it and took another .5 of Ativan. The idea was to have the Ativan cut off the rise and treat the high were it was. That plan succeeded in holding everything exactly where it was.

Except that “where it was” was about 280 and it held very steady at that number throughout the day long trial. Someday I’ll write about why I chose steadiness in my BS over my target range -whole other factor. For today, I made my deal with T1D. Then I went home as soon as Court was over and took a long, hyper-glycemia induced nap.