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Diabetically Speaking

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August 2010

Time for a Change

I remember the days of “timestamped injections” where I would take a specific dose of insulin at a specific time of day with no special considerations for what I might have been eating or doing at the time. I also remember very clearly my thoughts when I switched from that old method of diabetes management to MDI (multiple daily injections). I had been having some crazy low episodes in my early 20’s that facilitated the necessity for a change. I would get confused while driving or trying to do something, other times just wandering around completely out of it. I was found passed out on the kitchen floor one morning completely unconscious, and the one that really put me over the top was when I had a seizure from a low BG while on a roller coaster…A ROLLER COASTER!

I considered a pump at the time from MiniMed, but my own fears made me choose MDI because I was not yet ready to rely on a machine to keep me alive any sooner than I absolutely had to. Maybe I am a control freak when it comes to my diabetes, but I didn’t feel an insulin pump was as reliable as I needed it to be for my own comfort. Plus, I had no insurance, which plays a big factor in people’s ability to get a pump even today.

MDI worked for a time, and staved off some of the low episodes. But not all of them. After all, diabetes is an unpredictable beast, and even the best control can be thwarted for seemingly no reason at all. One example is when I went on a 12-mile bike ride by myself one evening, and before I could get back home I was pushing my bike down the street fighting off a low BG seizure. After getting home, getting help, and recovering from that episode, I knew that it was time for another change.

My endo at the time helped me get my first and current pump, the Animas 1250. Since having the pump, I have still had some lows, but so far not near as dramatic as before. My Animas 1250 has allowed me so much more freedom in my life with diabetes, and ability to control it, than I’ve ever had before.

Recently however, I’ve been dropping into dangerously low levels again (see my recent post Bike Ride & Motivation). Being in my early 30’s, and arguably too independent for my own good, I know that it is up to me to take care of myself. No one is going to do it for me. That is why I am very excited about my upcoming transition to the Medtronic Revel insulin pump with Continuous Glucose Monitoring (CGM). Once again it is time for a change, and I am ready to use technology to its full potential to help me not only manage my diabetes, but to keep me healthy, aware, and alive until it is time for the next change.

One day I hope that we willl be able to abandon these pumps and needles altogether. In the meantime, I will use technology and whatever diabetes treatments I can get my paws on to make sure I am around to see the day when we finally shut down the glucoaster thrill ride once and for all.

This Attraction is Closed

Endo Anxiety

Tomorrow I finally get to see my endo. This city has few endocrinologists, but I grew up seeing this doctor as my pediatric endocrinologist and he knows both me and my history, so it makes sense that I see him now. It’s a good start…er, restart…at least. As it stands now, I am his oldest patient (at 31). I wonder sometimes if it would be awkward to talk with him about my adult life and living with Type 1 diabetes while sitting on a firetruck examination table.

Firetruck Exam Table

Anyway, moving on…

It has been a year since I’ve been to my endo. Maybe I didn’t go mid-year because I’ve been busy with work. Maybe I didn’t go because every time I thought about it I was out of town. Or I can be practical and say that maybe I put it off because my insulin and supply prescriptions didn’t need to be refilled until now anyway. Truthfully, it is probably because I have to live with diabetes every single day and just don’t want to deal with all of the hubbub and aggravation that comes with doctor appointments anymore than absolutely necessary (endo appointments, ophthalmologist appointments, PCP appointments, scheduling lab work, the dentist, etc…all of which I’m due for). Procrastination at its best!

It is hard for me to get my many experiences with hostile doctors out of my head when I have to find a new one and schedule appointments. You know the type. They tell you how you aren’t taking care of yourself, that you aren’t doing this or that right, shame on you for not doing what they told you to do last time, how they have other patients just like you who are in bad health (which I don’t get how that makes them “just like me”…but whatevs), and pretty much just make you feel like you are wasting their time and you’re a complete slacker when it comes to taking care of yourself. Too much gloom and doom, and I despise being blamed for having diabetes, as if it’s my fault and I caused this.

Fortunately, not every doctor is like this. Hopefully, not even the majority of them are like this. I know when I lived in south Florida, I loved my endo there. She was great, on top of things, and I could actually call her with questions (what a concept!). I hope I can have that sort of relationship with my old endo here in north Florida as an adult.

Living with diabetes is a rollercoaster. I can exercise every single day, count every single thing that goes in my mouth, check my blood sugar a dozen times a day, and still be challenged by the unpredictability of diabetes. I need a health team that gets that, not one that holds it against me and makes me feel like a failure. When it comes down to it, I probably know as much or more about living with diabetes as they do. I’ve yet to find a doctor who actually has diabetes themselves. I need to know about the science of managing diabetes, and the technology and treatments available that can improve my quality of life. I need a doctor and/or CDE who will listen to me, be patient, talk with me, help me understand, write my prescriptions, be compassionate, and give me their outside-looking-in viewpoint. I’m hard enough on myself, I don’t need someone else to do that for me.

I know me. Tomorrow morning I’ll be nervous, my heart rate will be elevated, and my blood pressure will be up. It doesn’t matter if I’ve seen the doctor 100 times, it is always difficult for me to find that comfort zone that allows me to just chill the heck out. So tonight I will get ready for my appointment, and follow some of the suggestions that my friend Mike (@mydiabeticheart) shared recently about preparing for a doctor visit. I’ll make sure I have my meter, my pump (as if I can forget that!), and my prescriptions that need to be refilled. I’ll write down my list of questions, especially considering that I need a new pump and I am very interested to find out if my endo has had any success in getting insurance companies to approve coverage of CGM. I’ll ask about the numbness in my hand, and if that is more likely to be from working on a computer all day or diabetes. I’ll also find out what my A1C is tomorrow, aka “the diabetic’s report card”, and determine whether I deserve to pat myself on the back, or if I should go to confession (like @txtngmypancreas).

Bike Ride & Motivation

I sent my friend and colleague an email, with the subject line: Need. Bike. Ride. It wasn’t long before he replied with a similar sentiment, and we both made the dash to our respective homes at lunch to grab our bike gear.

I love cycling. I love it like my dog loves Milk Bones, or my cat loves a bright patch of sunshine. It brings me joy, it makes me feel better about myself, and it helps me manage my stress. I’ve always said that one of the best things about a bicycle is that there is no room for “baggage” on it. When I get on a bike, the stress just seems to fall off as the miles click by. Cycling also helps me stay in shape, push my limits, and meet new and interesting people. My best friend got me into road biking several years ago, and I’m so glad he did, because it has brought me so many stories and adventures since.

Today was almost an adventure unto itself. As we were just about to take off from the start of the ride, I did a quick BG test to make sure things were copacetic. They weren’t. My blood sugar was 36 mg/dl…and I did not feel it even the slightest. That frightened me, because normally I can feel it, especially one that low. I played it off so as not to freak out my friend, because good or bad, that’s what I’ve done most of my life, hide it. However, I did make him aware that my BG was low so he could understand our delayed start, and I got a glucose gel down, suspended my basal insulin delivery on my pump, and managed to get my BG up to a modest 74 before feeling confident and safe enough to get on the bike. About 10 miles into the ride we stopped at a convenience store, and I added an orange Gatorade to my arsenal, just to make sure that things didn’t sink back down with all of the activity.

At the halfway point (16.5 miles) my BG was holding at 74, which given the activity and fact that my pump was suspended, seemed about right. I continued to drink my orange Gatorode (which by the way, is quite delicious when you don’t get it on a regular basis), and by the time I finished the 33 mile ride, my BG had risen to a solid 147.

Earlier today Kerri (@sixuntilme) wrote a great post about fear and hope, and what motivates us. I hope that I can be strong, athletic, and continue to do bike rides like this (and even longer distances) for years and years to come. I want to be retired and able to blow the doors off some young whipper snappers who think they are lightning on wheels. Being on two wheels, pedaling for miles, and as a Type 1 crossing finish lines that most people say “I could never do that” about, that makes me happy. I love the endurance, the challenge, and the sense of accomplishment when I cross the finish line. But while I have that hope, I also have the fear of that one low BG that sneaks up on me and is one that I can’t manage on my own. I hope so much that if/when it happens, that it doesn’t ruin for me the sport that I love so much. That mix of hope and fear is one of the things that motivates me, and encourages me to stay @woodonwheels.

Crossing the 150-mile Finish Line with my team (Team StormRiders)
Crossing the 150-mile Finish Line with my team (Team StormRiders)

Fun With An ENT

Last week I had a 3-day meeting out of town with library colleagues from across the state. As successful as the meeting was, I was plagued the whole time by a clogged left ear, which has resulted in muffled sound for the past couple of weeks.

The meeting was challenging enough being engaged throughout 14 hour days, not being able to excuse myself to check my BG as often as I would have liked, and enjoying uber-delicious food in the evenings with little regard to what effects it was going to have on my BG (not to mention my waistline). When they are serving macaroni and cheese made with truffle oil and a crunchy breadcrumb top, you’ve got to just take what life is giving you, and be damned the consequences.

But now that I’m back home, I decided to see an ENT to figure out why my ear sounds like it has a cotton ball stuffed in it. His diagnosis is that I have fluid behind my left eardrum, and it just needs time to drain. In other words, I paid for an expert to tell me to keep doing what I’ve been doing…nothing. At least I know it’s not infected, so I can live with that.

He also checked my tonsils, and asked if I have sleep apnea or snore a lot. Anyone who has ever spent the night with me may argue, but I said no, not enough to join Snorers Anonymous. “Hi, my name is Martin, and I am a Snork.”

Snorks

The ENT’s advice was for me not to put on any weight, because I have the characteristics of someone who could put on weight and have breathing problems. Despite the immediate urge to choke the guy, with a completely straight face I looked at him and asked, “Did you just call me fat?”

I am nothing without a sense of humor.

What’s Up DOC?

So here I am with my first post on the new dblog. I’ve been sharing with the Diabetes Online Community (DOC) on Twitter so much lately I almost find myself throwing in # and @ signs in random sentences. It’s good to finally have a home built where I can stretch my thoughts out longer than 140 characters.

You can read the About Me section, and learn a little about me and my pump, Gort. Diabetes is a big part of my life, whether I like it or not. Whether ANYBODY likes it or not. I grew up with it being so taboo, so I am really thankful to now live in a world where I can be right out in the open about it. I feel like people see a needle, or a blood test kit, or vial of insulin, and without knowing specifically what those things are all about at that moment, they don’t immediately think you are a drug addict like it was when I was a kid.

I was in elementary school during the Reagan era, and Nancy Reagan’s “Just Say No” campaign on TV had the ever present images of needles and drug paraphernalia.

Nancy Reagan and the "Just Say No" CampaignImages of Just Say No

They would of course show these commercials during Saturday morning cartoons, exposing everyone to it, and beating into kids’ brains “Don’t use drugs!” Then I would show up at school, and someone would get sight of my syringes and vials, and game over…I was a drug user. Kids can be so cruel.

Maybe now I just have a lot more confidence, but I feel like the world has changed and matured. Today I can do a blood test right out in the middle of everyone, and I might get some side glances, but mostly people are just curious. I love that, and I love sharing and educating when they have questions. My favorite is when someone asks me right before I prick my finger if it hurts and I tell them no, prick my finger, and then scream bloody murder. That usually results in a laugh or two.

On top of that, the insulin pump (oh, the wonderful, wonderful pump!) has revolutionized diabetes even more by totally taking away the need to carry around syringes and vials anymore. It makes all of us T1’s so…free. We might still have to carry around a backpack full of other things, but it bids farewell to the days of having to ask a family member or close friend to stand in front of me while I draw my insulin out of the vial and shoot up.

This dblog is another voice, and another opportunity to bring diabetes out of the shadows. We can be diabetic, and do not have to be ashamed or feel we are less than anyone else, not ever. We don’t have to look in the mirror and see a broken machine. We may not have an automatic transmission like some people, but we can drive a manual transmission just fine. We have the technology, we have the science. We can do this!

And we will…every day…until there is a cure.

Diabetes Blue Circle

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