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Diabetically Speaking

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September 2010

We’re In This Together

The past couple weeks have been hard. Especially diabetically. I have been in the diabetes burnout funk. As any PWD can attest, when things are difficult diabetically, everything becomes more of a challenge. But I’m working through it, and this post is not going to be a gripe session. If griping got us anywhere, we’d have a cure for diabetes by now.

Missed Target - from Jonathan Houston at jonathanhouston.co.za

Diabetes control is a total moving target, and mine certainly has been lately. Predominantly, low BG’s have moved in and resulted in all the low BG fun: Shakes, sweating profusely, ravenous hunger, lack of sleep, confusion, blank outs, finding myself talking nonsense without the ability to shut up. Well, that last one really isn’t so different from a normal day, but still. I haven’t eaten glucose tabs or gel in years, but from the amount of them I’ve eaten the last couple weeks, I’m starting to think I should invest in Reli-On.

Then there are the high BG’s. The feeling like my blood has been replaced with molasses, nauseousness, and lethargic to the point that I don’t want to do squat. Thankfully, my high BG’s have a source, and are not a regular occurrence. I know it’s from eating things that aren’t smart healthy predictable. One night this past weekend, for example, I was out and got the stupid idea that I wanted a daiquiri to drink. The unimaginable and incalculable amount of sugar in it skyrocketed my BG through the roof, resulting in a semi-calculated rage bolus to get it back in range, and totally killing the point of drinking it in the first place.

I think all people, not just diabetics, want to be able to do what they want without having to analyze the decision to death. If I want pizza (which is unfortunately one of my favorite foods), I don’t want to have to count carbs so adamantly that I can’t enjoy the experience. However, to be able to enjoy other experiences, I do have to carefully count those carbs. It’s a vicious circle, and I know that choosing to be complacent in my diabetes management now would absolutely result in longer term complications down the road. We’ve all heard these lectures ad nauseum.

Not to get pleasure from someone else’s pain, but I’m not alone in this struggle, and that helps. Kerri (@sixuntilme) writes about similar diabetes challenges from her perspective of being a Mom. Sarah (@Sarah_IGTS) writes in her post “Holding On” about how we have to remember the big picture to keep us from wanting to just stop caring so much. Kelly (@diabetesalic) writes about seasonal high BG’s and the challenge to keep things in range.

We are all challenged from time to time, and all the time, with diabetes, regardless of what type we are. But as I said earlier, this post is not a gripe session. I’m reminded when I finally open up enough of just how much support is out there when a day, a few days, or even a few weeks do not go my way. We have people close to us who won’t let us not love ourselves because the amount of love that they have for us. We have the motley crew that is the DOC. We also have DSMA, where we see that there are others who are also having both awesome and awful days just like us, further demonstrating that we are never alone in this struggle.

That is something I can lean on and am thankful for. None of us has to go through these challenges alone.

I also find that laughter helps. I love to make people laugh. And as Bill Cosby said, “Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.

Community and Invisible Illness

As a medical librarian, I occasionally get the opportunity to teach physicians how to use medical library resources. During my last class, I had a side discussion with one of the physicians about patient communities, particularly online communities such as the DOC.

This doctor was intrigued with my diabetes blog, the DOC, Twitter and other social networking vehicles, and my experience in the library and identifying web sites where the average person finds the most information about their health or condition (read: Google) and how accurate or inaccurate those results can be. Understandably, he expressed his concern about the misinformation that people get from the internet and believe as the gospel. Being a bit old school, he prefers that patients get their information from their physicians, and not from the internet.

I can understand that perspective, but the flip side of that coin has multiple faces (and apparently isn’t very good with fractions). First, in today’s medical schools, even doctors in training get their information from the internet. And that’s a good thing. As a librarian, I can tell you that by the time a book gets in my hands to be put on the shelf, the information in it is, on average, at least one year old. With the internet, medical databases and web sites can be updated in near real-time, giving doctors, students, and even patients access to the most up-to-date information (depending on the source, of course).

Second, expecting that the only place people will get health and medical information is from their physician is not a realistic expectation. Patients get maybe 15 minutes with their doctor. The doctor practically has their hand on the doorknob to go see the next patient while they are talking to you. For someone with an illness, be it invisible or visible, that is not enough time to ask all of the questions that come to mind in living with it 24 hours a day. All questions that a person with any illness may have are important, whether they have never been asked, or whether they have been asked a million times. A patient should not have to prioritize questions they have about their disease or condition. If they have a question, they need a place to get answers, and often times that comes from a community of like people, not a physician. Doctors do not have the time to be available to answer every question that a person may have about living with their condition. There are simply too many others who need their help, expertise, and ability to write prescriptions. However, online communities (like the DOC) are available 24/7, so there are people you can turn to at 12:30am when you have a question.

Open 24 Hours - courtesy of *Sally M* on Flickr

On top of that, there is the nature of invisible illness. We, as human beans, do not like to admit or advertise that we have any type of illness, from a common cold to a debilitating disease. We go to extreme measures to keep it hidden, so as to not show weakness. A lot of times we do this subconsciously. FACT: It hasn’t been but until recently that I’ve stopped hiding my diabetes myself. There are people that have known me my entire life who to this day do not know that I’ve had diabetes longer than I’ve known them. Through this blog, the DOC, and just my ever increasing knowledge about diabetes, I feel more comfortable sharing and facilitating discussion about diabetes now than I ever have before.

It takes a tremendous amount of courage to admit out loud that we have a condition, and even more to blog about it, tweet about it, and share information about it with seemingly complete strangers (who become dear friends over time, I’m learning). What the DOC does, and what all sorts of other communities do, is help people to break the notion that having an invisible illness is a weakness. By sharing it with anyone, be it your teachers, coworkers, or the entire world, you are adding to the collective voice and helping to educate both yourself and others about your invisible illness. You are helping to break misconceptions about your condition. And you are helping yourself by finding a group of people you can lean on when you need them. Strength in numbers is especially true when it comes to living with an invisible illness.

I understand as well as anyone what it’s like to live with an invisible illness. There is no such thing as a day off from diabetes. I get depressed (which is another invisible illness), both from the demands of trying to keep up with this damn disease, the guilt and feeling of helplessness when I can’t seem to get things right, and having to carry them along with all the other burdens in life. I am thankful that most days I can say that I carry the load with strength and courage, but some days I succumb to the pressure, and it overwhelms me. But it does not beat me. I take a moment. Maybe two. I re-evaluate. I do a mental SWOT analysis. I change things if I need to. Then I bounce back. And I know that if I have questions, or need support, I’ve got a community behind me that is ready and willing to add to my strength.

Do I Really Need a Medic Alert ID?

Being an adult who is self-admittedly too independent for my own good, a cyclist, and quite simply a PWD who is out and about in the world, it makes sense that I get a medic alert ID and wear it as religiously as I do my yellow LIVESTRONG bracelet.

LIVESTRONG

Having read posts like Sarah’s “Three Year Present” and coming from the perspective of maintaining my independence as much as possible when it comes to my health and well-being, I’m now on the prowl for a medic alert that fits my style.

But what do I really need? How much info do I need to be available via my medic alert bracelet? Do I really have so much medical information that I need a 2GB USB drive integrated into my medic alert? Do I need a subscription service like that offered by the MedicAlert Foundation, where my ID has a unique number on it that links to additional information about me should it be needed? Or can I get away with just the basics about my diabetes and allergies with a simple engraving on the back?

And what do I want? There are so many options compared to the simplicity of when I was a kid and wore a medic alert bracelet or necklace. I could never keep up with the bracelet that just said “Diabetes” on it. It was cheap and would always break and disappear into the oblivion and wonder that is a school playground. The necklace charm worked better as a kid, but now that I’m an adult, I’m not really a necklace person. I don’t need anything bringing attention to my big round head anymore than necessary. Can I find a bracelet that fits my rebellious, edgy, rockstar, non-conformist style while not totally ruining the times when I need to err on the side of dressing professional? I do get paid to be a librarian, after all.

I have two Road ID‘s that I wear while cycling that are so well worn that the information on them is barely legible anymore (not to mention outdated and inaccurate, aside from me still being a T1 Diabetic, which hasn’t changed in 29 years). I need something that’s going to hold up with time…and oil changes, or whatever mess I get into.

Maybe I should get a tattoo. I’ve wanted a tattoo for awhile now, but haven’t found something that I’m so passionate about that I feel the need to get it inked onto my body. As a dblogger and d-advocate, does my passion for the education about and better treatments for diabetes, plus my own health, meet the passion threshold to merit getting a tattoo? My girlfriend’s dad says that “A tattoo is a permanent reminder of a temporary state of mind.” I tend to agree, but my diabetes isn’t going anywhere, and if it does, I would gladly live with a permanent tattoo of when I USED to have diabetes.

Diabetic Tattoo
Alisha Wilkes's diabetes tattoo, which I think is pretty much AWESOME!

Decisions, decisions.

The key here is that all of us PWDs should wear our medic alerts in some way, shape, or form. Paramedics and emergency personnel are trained to look for them, and it is in our personal best interest to still be able to communicate with them, even if we are physically unable to. Low BG’s can sneak up on those who are in the very best control. It’s diabetes, it happens. We feel guilty about it afterward, like it is our fault, as if we caused it. However, I would much prefer to be around to feel that way, than to not be around because the person that found me had no idea that I have special needs.

So yes, you do indeed need a medic alert ID. So do I. Now where did I put my wallet?

Momentary Self-Consciousness

Last Friday I went to meet with my Medtronic rep to get a “blind” Continuous Glucose Monitor sensor to wear for a few days. A “blind” CGM sensor is exactly the same as a regular CGM sensor, except I cannot actually see the BG readings in real-time. They are stored onboard the sensor for my rep to download and report for insurance purposes, so that I can get my new Revel (insulin pump + CGM) this week.

I really didn’t think much of it, and in fact was kind of excited to see how it was going to feel. I had participated in a one week Dexcom trial a couple of years ago without much success, so I have been interested in trying Medtronic’s version in hopes that it will work better for me.

The sensor itself has been a breeze. Besides the slight pinch when I put it on, so far it has been painless and worry free for all three days that I’ve been wearing it on my left arm.

CGM Sensor Left Arm

The hard part for me has been what I hope is a temporary moment of self-consciousness. Friday morning when I got the sensor, I was so excited about it that I wanted to show anyone. For future reference, most of the people that I showed it to cringed when they saw it, so don’t do that. I think that’s the natural response. Maybe it was because there was this foreign object now connected to me in plain sight (unlike my insulin pump, which I usually keep quite hidden). Or maybe it was the tiny amount of blood just slightly visible under the clear adhesive.

As the day wore on, this trend continued, even without me necessarily pointing it out. That night my girlfriend and I went to a comedy show with friends, and the lady sitting beside me was boring holes in my arm from staring at my CGM sensor so hard. By the time we got back home, I was practically in tears, which is totally not like me to be affected so much by other people’s reactions. We ended up canceling a day at the beach that we had planned for this weekend, mainly because I’m just not as comfortable with this new, additional doohickey on my body as I’m sure I will be in time.

With all the finger prickin’ and technology that comes with diabetes, it takes a conscious effort sometimes to not let the world and other people get to you. Some days are easier than others. No matter what though, my health and my future is more important to me than what anyone else may think or how they may react to what I need to do to stick around. If anybody doesn’t like it, they can put it in their meter and check it!

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