DSMA Live & Blue Cupcake Brainstorming

dsmaI completely forgot to mention this earlier this week, but I was on DSMA Live last night! The show is now archived on the DSMA Live website so you can listen to it if you missed it. The show is hosted by Scott Johnson (my new neighbor!), Cherise Shockley and George Simmons and we talked about a ton!

Topics ranged from my diagnosis story to social media and my various advocacy projects, to becoming a Certified Diabetes Educator and what I think about the new Academy of Certified Diabetes Educators. Since this past Monday was my 20th diaversary, I shared my thoughts on what I’ve learned over the past 20 years.

We also spent some time brainstorming ideas for Blue Cupcake, my Etsy shop of diabetes-related greetings cards. A couple of my ideas are a new Thank You card for parents of children with diabetes and a new Congratulations card for women with diabetes who have just given birth. Cherise also suggested a Thank You card recognizing the hard work of our beloved healthcare professionals, whether its an endocrinologist, dietitian, diabetes educator or heck, even your ophthalmologist!

You’ll just have to wait and see what comes out next!

Twenty

Today marks twenty years of living with type 1 diabetes. The first thing that comes to mind when I write that is “Goddammit.”

But that’s not particularly profound or eloquent, so I’ll try to come up with something a little bit more worthy of the occasion.

On Friday, I flew from Minneapolis to New York and on the first leg of my flight I had the chance to chat with the woman next to me. I had tested my blood sugar, so the woman asked if I had diabetes. When I said yes, she asked if I was okay, and I said that I wasn’t doing great but was fine. She wanted to know if I needed juice and I said that I was actually in the other direction and so what I really needed was a Diet Coke, which I got from the flight attendant.

The woman then volunteered that her friend’s daughter had type 1 diabetes too, and so we spent a good long while talking about it. I told her that I’d had diabetes for almost twenty years, since I was 8.

“You probably get pretty used to it after awhile, right?” she said.

It’s an interesting question and something that I probably would have had a different answer at another time. Just like the way an elementary school student looks at a high schooler, at one point I probably thought people who had lived with diabetes for 20 or 30 years had had diabetes for a long time. Now that I’m at year 20, I’m now realizing how paltry that amount of time really is. I know so many people who have lived with diabetes for forty, fifty and even sixty years. I even met the man who’d had diabetes the longest, before he sadly passed away a couple years ago. There are so many life experiences that I haven’t lived through with diabetes — like pregnancy and parenting — that twenty years just doesn’t seem very long at all. Just like my own age, 28, can seem like a long time and not a long time, depending on your perspective.

Of course, I’ve always felt badly when newly diagnosed people occasionally quip, “Well, I’m not a veteran because I’ve only had diabetes for a couple of years.” Honestly, I think people are veterans after a couple of hours with diabetes! This shit’s hard and it breaks you in real fast.

I think at various points in my life I have felt like a newly diagnosed PWD, and not just at diagnosis. Going on an insulin pump six years after diagnosis was almost like starting over again. Leaving for college felt like a new beginning in both the good and the bad sense, because I had not a clue what it really meant to take care of my diabetes. And I’m readily aware that I’m about to fall flat on my face again when I become a parent. Children change everything, or so they tell me.

But the woman on the plane could have meant more than just head knowledge about living with diabetes. There’s also a certain smoothness that I feel people without diabetes expect to exist. Like we just know what to do and nothing really bothers us. And in some ways that’s true. I don’t wince at pricking my finger, but I always wince at a 275 mg/dl. I don’t forget to count carbohydrates or take insulin, but I resent having to do it and I sometimes even willfully wing it just to avoid the obstacle.

I wish I could say that living with diabetes has gotten easier after twenty years. It’s still as annoying, uncomfortable, frustrating, demanding and confusing as it ever was. I feel a little bit guilty for saying that like I should have figured it out by now because dear God, what exactly have I been doing for these past 20 years? But I think part of that is so much of those years were spent almost in another world. My childhood diabetes was different than my college diabetes which is different than my adult diabetes. So really I feel like maybe I haven’t had diabetes for more than a few years because the way I’m managing it now and the people I’m managing it with are new.

Part of the problem is that diabetes does keep changing. Everything about it changes. From how your blood sugars respond on a day to day basis, to how you manage your diabetes with the new technology and the information overload they can provide you, to the changing challenges of your various life phases, from parents and teachers to spouses and children. Change is a huge cause for stress in people’s lives, and it’s no wonder we have such a difficult time coping.

I remember when I hit my ten year diaversary vividly. I was a freshman in college and I remember that it was the first time it really struck me that I would have diabetes forever. I don’t know why it took until year 10 to fully realize this, but it hit me like a ton of bricks and I felt very depressed about my diabetes for a long time. I think that I had expected diabetes to get easier, to feel better about having it, and the truth is that I didn’t then and I don’t now. I’m not afraid to say this out loud. Maybe I’m the only one who thinks this way, but I have a feeling that I’m anything but.

I think there are far more important questions to ask than my level of comfort with diabetes. Diabetes isn’t comfortable or normal, so no, I don’t think there’s ever a sense of getting used to it. I don’t think it’s possible, and I think having that expectation might actually lead to even more anger and frustration when that ease never materializes. I used to think I had to be very “happy happy, joy joy” about gaining years with diabetes. Like everything would just get better one day. I was enthusiastic that life did get better and that diabetes did eventually become just like brushing your teeth. And maybe that’s how it is for some people. But it isn’t for me.

I imagine it’s like any trauma that happens in life. Maybe on the surface you get used to it. You stop complaining about it as often. The future with it becomes less hazy. Even certain aspects of it become rote and second-nature. But you still catch yourself thinking about the life before or the life of someone else. A slight bitterness has crept into your life, just a little bit, and though you keep it at bay with distractions and mantras and a good strong cup of coffee, on your weaker days the bitterness can feel a little threatening.

I am — or at least, try to be — a positive person with diabetes. And that’s because I have found that there is a litany of questions to which the answer is a resounding Yes. There are so many things that we can do as people with diabetes. In the past twenty years, there is not a single life event that I believe I missed out on because of my diabetes. I don’t foresee missing any life event in the future, either. Anything that I have wanted to do, I have found a way to do and that’s what I told this woman on the plane. It might take a little bit more time, a little more work, but any dream you can dream, you can find a way to do.

I might not be used to diabetes, but I’m certainly used to kicking ass and living life.

Getting A Feel

I think most of us can agree that what we hope that what we put out into the Diabetes Online Community are things that people will find informative, helpful and maybe even a little entertaining. For the most part, I’ve focused on writing just about myself on this particular blog, but I also know from past experience that I don’t normally find my own life with diabetes terribly interesting. I don’t really like recapping any particular diabetes moment unless it’s something that I’ve gleaned some new insight or wisdom from, which after twenty years isn’t terribly often.

For 2014, I’d like to think beyond me. I know there are others who are have questions that I can’t readily answer from my life experience, or there are people with life experiences that are worth highlighting. But I’m not entirely sure where to start. I’d like to get a quick snapshot from you, my lovely readers, about what’s going on in your life so that I can help make The Blood Sugar Whisperer more interesting a better place to visit. There are only 3 questions, so it should be pretty easy to fill out. Thanks in advance!

 

 

Something you’re just dying to tell me? Leave a comment or !

A Change of Scenery

If you don’t read my other blog, follow me on Twitter or are friends with me on Facebook (and if so, what the heck?!), then you might not be aware that I am moving to Minneapolis. Next week!

While it was a decision that my husband and I are confident in, it was certainly not something we thought would happen so quickly! But we are thrilled not to have to play a waiting game either.

Our reasons for moving to Minneapolis are multi-faceted, with the main reason being the boringly unsexy “quality of life” that needs improving. New York is fun, but expensive, and it’s just not something we decided we saw ourselves putting up with over the long term. So we thought about where we could live, and Minneapolis seemed like the best option.

A fun fact about Minneapolis is the number of PWDs I know there! Minneapolis has an active diabetes community, with support groups galore. When we visited Minnesota for the holidays, I spent an evening at a restaurant with Scott Johnson, Laddie, and another young woman, Katie. I’m very much looking forward to hanging out with these folks (and others!) very soon.

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I also got in touch with Christina and Jo from the organization College Diabetes Network, who have a chapter at the University of Minnesota. Although I’m many years out of undergrad, I’m hoping that I might be able to impart a bit of wisdom. I’ve known Tina and Jo for a few years now, and I think what they are doing to provide support for college students is amazing. There was nothing like this when I was in undergrad! My only real source of support in college was the Diabetes Online Community.

There’s also the troublesome issue of having to find a whole new medical team. I happen to love my endocrinologist and when you find an endo who work, the last thing you want to do is find another one. Do you know how hard it is to find good help these days?! (Of course you do).

Although I’ve physically moved towns a few times in the past few years, it’s been almost 7 years since I’ve relocated to an entirely different part of the country. I just hope my blood sugars can handle the stress of it all!

A Dexcom Waiting In The Wings

As I mentioned last week, I tragically lost my Dexcom transmitter on Christmas Eve (and for the second time in a year). I’m not sure why I so easily lost the Dexcom transmitter when I never once lost my Medtronic transmitter, but that’s the way it goes.

I knew from my prior loss that Dexcom offers a one time replacement for $199 that is a cash payment, which means it doesn’t go through insurance company. At the time we couldn’t afford it because we had depleted our FSA account just getting on the Dexcom in the first place. I waited until my warranty ran up before going through the process of getting a new transmitter through Cigna. This time I’m much more keen on getting back on the Dexcom as soon as possible, so we waited until after January 1st, when our FSA was activated with more pre-tax money.

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Dex “I Make This Look Good” Com

Like many of you, I’ve become terribly reliant on the little bugger. I feel completely helpless and clueless as to how to manage my diabetes without it. The rises and falls in my blood sugar seem mysterious and unknowable. I can’t even big to figure out how to get myself under better control without my Dexcom! I have been hitting 300 mg/dl so many times lately because I simply don’t realize where my blood sugar is until I start feeling sick from the highs. Erik has also seen how wonderful my blood sugars were in November and December because I could catch underboluses so much faster and I could more readily adjust my basal rates.

Yesterday I called Dexcom and put in an order for a new transmitter, as I’m just desperate to get it back. The lovely Dexcom customer rep asked me what happened to my transmitter, and I told her the pathetic story of how I lost it in my apartment during a set change. She mentioned that if I found my transmitter, I had 30 days to return the new one! Which is awesome because we will be clearing out the entire apartment very soon, so if I do happen to find the transmitter in the move or unpacking, I will be able to return the transmitter and get my money back!

I also brought up a theory that I had discussed with a few Minnesota bloggers when I was visiting a couple weeks ago. We were wondering if it would be possible to get a new transmitter after the 6 month warranty is up (for me, this would be March) but not actually use it, and instead use it as a back-up if and when my transmitter either disappears again or dies. According to the Dexcom rep, most transmitters actually last up to a year, but the warranty is only for 6 months, which means insurance companies should pay for 2 a year, even if you only actually need one!

I floated the idea of getting the transmitter from our new insurance company when my husband starts working, but she said that it was insurance dependent. An entirely different insurance company might be willing to pay for a new transmitter before the 6 month warranty is up, but since our current insurance and our new insurance is both Cigna, they might be less inclined to pay for it until the warranty is up.

You might be wondering why I don’t just wait until I start our new insurance policy to find out if they’ll pay for it, rather than shelling out $199. Good question! Well, as I said, I have a tendency to lose these little suckers, so I’m keen on getting a back-up to keep from going through this again. The one I’m paying for now will be my primary transmitter. Then, as soon as possible, I’m going to request that my insurance company pays for a new one, which will be my back-up. The Dexcom rep told me that while the warranty starts the day the transmitter ships out, the battery life doesn’t start ticking until you actually open it and use it.

My plan is to continue ordering a Dexcom transmitter every 6 months when the warranty runs out, and by paying for one transmitter out of pocket, I’ll be one step ahead of the game. In the event I lose another or when a transmitter eventually dies, I won’t need to worry about being off the Dexcom while my insurance company approves a new transmitter. Especially as I prepare for pregnancy, having access to the Dexcom is crucial to my health and I believe it worth the expense. Of course, this is money coming from our FSA account, and not from our actual checking account so that helps to soften the blow. If I do find my transmitter in the move, I will send this one back. Since both are open, the battery life is draining on both and so it doesn’t make sense to have two activated transmitters at the same time. This really only works if you have one transmitter “waiting in the wings.”

The State of the CDE-Getting

REPORT_CARDI’ve been waiting and waiting and waiting some more for my grades to finally be posted from this term and let’s just say things didn’t exactly go according to plan.

Firstly, it pains me to admit that the only reason I got a B+ in Nutrition and not an A is because I’m the worst from-the-book test taker in the history of the world. Seriously, I had full use of the book for all my exams and I still managed to only get a B+.

Secondly, Organic Chemistry is hard, even when it’s for the “non-majors” which means I got a smashing C in the class.

And thirdly, anyone who tells you that taking Biochemistry online is a good idea is lying. It is the worst idea on the face of the planet and do not do it. Not that anyone told me this, but now that I’m tell you, you’ll know for the future. It’s my first W in the college career and even though I know it won’t ruin me, it does mean that a perfectly good $700 went down the drain. Oh well. At least I got out before I could fail it!

That all being said, there’s a very good chance my term did me only mildly good. Not all of the classes will transfer to University of Minnesota (well, they will transfer, just not as anything useful) and so I’m still stuck taking more Chemistry, Biology and of course, Biochemistry as I did not complete the class. I’m still trying to work out exactly what classes I need to take and when, I’m trying to arrange things so that I start the Nutrition program officially in the fall. After that, it looks like I should be able to complete everything in 2 years, possibly faster if it’s possible to take summer classes (I have not researched that far ahead).

That’s pretty much my current update regarding class. I should have more news regarding school in the next few weeks, once I get a handle on our plans for Minnesota. In the mean time, becoming a CDE is one of the most commonly searched questions for this blog, so if anyone has any questions about it, please let me know!

On Being Diagnosed With “Juvenile” Diabetes As An Adult

I was diagnosed with type 1 diabetes twenty years ago this month, so my frame of reference for this disease is entirely different from someone who was diagnosed as an adult. For me, strange questions come from strangers, not from my own family. Because I know my experience with diabetes is limited, I’m inviting more young adults to share snippets of their stories. Today, Rachel Kerstetter shares her experience of being diagnosed with type 1 diabetes as an adult, but not having her own diabetes story accepted for what it is.

A Guest Post by Rachel Kerstetter

ProbablyRachelI’m excited to share some of my story with you today and grateful to Allison for the opportunity! When I volunteered to write a post about being diagnosed with type 1 diabetes as an adult, I wasn’t quite sure what I wanted to say but as I thought about it more, the one thing that stood out is the way that other people perceive my diabetes.

For the first 22 years of my life I was a “normal,” healthy girl. I had a reasonably regular childhood and transition into adulthood. Then the busiest summer of my life hit me, I graduated from college in the beginning of May, married my husband at the end of May, really started my career in July… then in August I found myself in the doctor’s office, unsure of how I had dragged myself in there and waiting on the results of a pregnancy test.

My doctor had already called in a prescription for nausea medication to my pharmacy while we waited for results. She came back into the room and sat down beside me on the exam table and calmly said, “Your tests showed a large amount of glucose in your urine and you’re producing ketones. You have diabetes, it’s a pretty serious situation and we need to send you to the hospital. Do you have anyone with you?”

The arranged my admission to the hospital and for my mother-in-law to drive me there. I called my husband to tell him what was happening and I told him not to come, that I would keep him updated. He worked at a medical communications company at the time and when he discussed the situation with them and looked up the numbers from my test results, they told him to go be with me.

It wasn’t until hours after I was admitted that I finally spoke with a doctor and I asked the question, “What type of diabetes do I have?” Everyone just said “diabetes.” No one bothered to explain to me the types and what had happened. The doctor looked at me with surprise in his face and said, “You are a typical type 1.” But it didn’t take me long to realize that I was anything but typical.

The nurses didn’t realize that I was newly diagnosed and had no idea how to give myself a shot until I told them. I realized later that the dietitian they sent to talk to me thought I had diabulimia. The RN who taught me how to test my blood sugar only had a kit for children and nothing for an adult.

When learning about my diabetes, I’ve had people use words like “juvenile” and “brittle” to describe it. I’ve been asked if I’ll outgrow it, I’ve been told that it’s my fault that I have it and my insurance company refuses to call my type 1 anything other than “childhood-onset diabetes.”

I’m often thankful that I wasn’t diagnosed as a child because I know what it would have done to my family. Because diabetes wasn’t a part of my childhood and my family’s environment though, I know that my family doesn’t understand a lot of aspects of it. Like carbohydrate counting. In the beginning it was tough because people tried to feed me sugar-free stuff but without a carbohydrate count. They didn’t understand that I needed to take Lantus at the same time every day and now that I’m on a pump, they don’t quite get that my OmniPods can’t just be stuck back on if they get ripped off.

For friends and family members who don’t see me on a regular basis, I find that they often forget that I have diabetes because they remember the old Rachel. One of the best places for me to start my advocacy was with those closest to me, but it’s been really important for me to remember that the realities of diabetes will never be fully understood by people who haven’t lived with/around it every day. When I call my mom with my latest test results and A1c, I still have to answer the question, “So, is that good?”

~*~

If you would like to share your own story of being a young adult with diabetes (either type) please contact me at . P.S. You don’t have to currently be a young adult with diabetes.