See Diabetes Run – with friends!

Before I get back to the shin splint story, I want to back up a bit and talk about why I care… I’ve never been a runner. Walking has always been my exercise of choice and when I have had walking partners who were well-matched in pace & temperament, it has done well by me. I walk pretty fast (14 min. mile or a bit less – not race walking, but not bad) and would try to get in 45 minutes to an hour, so it seemed to work for cardio. I had a hard time keeping up a regular schedule when I didn’t have someone to walk with though.

In 2014, when buying new sneakers at my local (awesome!) running store, I noticed an ad for one of their spring running groups. It caught my eye but I didn’t do anything about it, not being a runner :)  Then in July I got an e-mail from the store & it included a list of the upcoming groups & training programs. I had had success with weight loss but still hadn’t improved my fitness level (my other goal) so I actually stopped and thought about it. Asked the BHE what he thought (he said, “go for it!”), and the next time we were downtown we stopped into the store & I registered for the Beginner 5K training group.

It started on Aug. 18 (my mom’s birthday) and I started letting go of my “not a runner” status. To my surprise, I loved the group exercise, liked stretching before we started when everyone chatted while following along with our coaches, liked running/walking with different people each time as our paces waxed & waned. The training was a modified C25K (couch to 5K) led by 3 coaches – 2 store staff & the owner – all of whom are runners. We started off the program mostly walking with a few 30 second runs thrown in and ended up running 3.1 miles – a 5K. The people in the group (more than 40 of us to start!) ranged from those who ran in college but not since, those who ran but had never done a 5K, those who had never run (me!), and I’m sure many more scenarios. We met twice/week as the group and then had “homework” assignments like doing other types of exercise, core-strengthening exercises, and some intervals (walking/running) like we were doing with the group.

At the beginning, I really couldn’t imagine running 3 miles straight. It seemed impossible! Along the way, different milestones seemed so far away but then were accomplished — run for 5 minutes? no way. Run for 15 minutes? no way. Yet, there I was, accomplishing that and more. I also wasn’t sure how different managing my diabetes would be with running than with walking. The intervals meant that the intensity of the workout was changing during the workout as well as between workouts. Thank goodness for the pump & CGM – not to mention peanut butter and bananas! I got pretty good at eating a proper sized snack ahead of time, changing basal rates a few hours ahead and during and after the sessions, and keeping a close eye on bgs after 24 hours or so. It never did get what I would call “predictable” but it seems like diabetes never does. I did gain confidence that I could handle it though – whatever diabetes decided to do for that run, I could adjust and get through it without having to stop the workout. Sometimes I was low and sometimes I was high, but I didn’t have to miss a session because of my diabetes.

Doing the 5K in October, running the whole thing, finishing, and finishing in way less time than I hoped (though I did set a silly goal of 50 minutes!) was such a good, proud feeling. And being there after the race, celebrating with the 25 or so others from our group who had also run the race, made it so much better. We all felt like we could never have achieved that goal of running over 3 miles without the support and motivation from the group.

About a dozen people from the group said that we wanted to keep running regularly after the training was over. Out of those, 8 of us have actually continued to meet and run all the way through the winter. We have run a few races together and supported each other through some injuries. My shin splints, someone’s knee surgery, plantar fascitis, hip pain, etc. I never would have stuck with running without this group of amazing women. Several of them are younger than I am, some older, and others right around my age. We do/did different things for work, come from different parts of the country, have different backgrounds and lifestyles, but we all have this sense of accomplishment and the joys we have found in running in common. These are 7 women I probably would never have met w/o the 5K group but now I can’t imagine my life without them. They are truly friends.

What a long post to convey a simple truth: I can’t let shin splints (or any other injury) make me stop running. Without running, I won’t see these friends once or twice a week, I won’t have their support and understanding, I won’t laugh with them, or walk with someone when we both are struggling, or feel motivated to get my body moving. We celebrate our times during races — if someone improves their time we get excited, if someone doesn’t, we get excited that we all finished. I’m sure many people have this kind of experience during their school years when they play on a team… I never had that as a kid so I’m learning it rather late. In this case it is definitely better late than never.

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Let the Repair Begin

I know I’ve written on here about my running group (and here – one of my favorite posts ever), and also my frustration with various pains and injuries. Most recently (and longest lasting) is shin splints.

Digression: I realize now that I haven’t really written much about my running group or the pains & injuries :) I guess I wrote a lot in my head. Just a quick catch-you-up: I love my running group! After our beginner 5K group did the race in Oct. 2014 – about half of the original group of 40 ran the race – some of us said we wanted to keep meeting and running. There are about 8 of us now and we have actually made it through the winter with a combination of outside & inside running. I got my knee pain resolved not long after that Oct. race but in November I started dealing with shin pain which I discovered was shin splints :(  Went to a chiropractic place for a couple of months & while they were successful in treating the pain/symptoms I wasn’t making any progress to being able to run again.

OK. So, here we are in the present. I love this group of woman runners – I’m involved in the first exercise of my life that I actually look forward to. I’ve had a few months of struggling using the elliptical machine instead of running, running anyway and regretting it, and more recently going back to walk/run intervals (3 min run, 2 min walk). This is all better than when the shin splints were at their worst, but I still have pain and I know as soon as I try to run 3 miles again I’m going to be right back there.

So, I went to my primary care office last week & she gave me referrals to the “Three Ps: Podiatry, Physiatry, and Physical Therapy.” Basically she thinks it would be good to get an evaluation from those three & see what makes the most sense.  I’m cautiously hopeful… Glad she didn’t pull the “it hurts when you run? don’t run.”

By the time I’m wrapping up this post, I have actually seen 2 of the three – well, sort of. Not sure yet what will happen, but a plan is starting to evolve. Next time: Podiatry Orthopaedic Surgeon/Sports Medicine specialist.

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So Close (or T1 still seeking T1)

I have written before about being jealous about all the Friends for Life stories. Not because of Disney World (though, fun!), and certainly not because of Orlando in July (hot!) – but definitely because of kids meeting up with other kids who wear the same devices, count carbs, deal with the same daily issues, and are still kids. Diabetes camp, ditto. I wish that the Bear knew another T1 around her age who lived close enough for the possibility of an actual friendship.

I haven’t written about our recent introduction to a newly diagnosed little girl and family who lives in our town (!), is the same age as the Bear (!), and who were seeking a mentor family (!). Like so many things relating to diabetes, I was reluctant to let myself hope that this might turn into something good. But, as we got together a few times for lunch, a movie, the Ed Damiano talk, a play date – it was turning into something more real than fantasy. The two girls immediately liked each other – lots of giggling and asking to see each other more. All of us parents had a pretty easy rapport — they seemed glad of our experience and we were all relieved to talk with others who “get” it. Some of their great habits were so helpful to hear about.

This past weekend I finally felt ready to start to believe that this could be real.

I’m sure you can guess what comes next. At a play date, mom lets us know that even though they haven’t told the kids yet, they are being transferred. I almost started to cry. Not that we’ve gotten that close, and neither have the kids — even if we spend more time together between now & summer when they move, it’s not going to be like a best friend has moved away.

It’s the hope that I’m sad for. It’s the loss of the potential.

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There’s No “I” in Team: Finding the “We” in Diabetes Management

Since the initial learning curve, I have been the foremost expert on my own diabetes. I’m very comfortable looking at the data from my diabetes devices, noticing patterns (with or without a download!), making changes to my basal rates, insulin:carb ratios, and correction factors, then doing the necessary paying-attention to see how those changes are working to solve the issue.

My last endo practice has been in upheaval for several years and closed at the end of 2014. The last CDE I worked with there left the practice at least 5 years ago and so it’s been about that long since I worked with an educator. My last endo would review downloads with me and ask me if I wanted to change anything, but she was pretty laid back and happy to let me steer. In fact, her laid-back approach certainly enabled my increasing patterns of hypoglycemia. She would say, we don’t really know – for some people a blood sugar of 60 might be perfectly normal. This both sounded strange to me (never having heard any endocrinologist, CDE, or PWD say that hypoglycemia was still up for debate), and fit my inclinations to run low rather than run high (as if those are the only two choices!) so I didn’t challenge it. She just wasn’t that interested… I was managing more capably than a lot of her other patients so I must be fine.

Cut to the present. New endo practice and I saw the endocrinologist last October. I liked her approach, her attention to detail, and the time she took to ask me questions and actually listen to my answers. We looked over my downloads and made a couple of small changes. She clearly was picking up on my hesitation to do anything that would cause highs – or even make me fear that we would be causing highs – and when she suggested a change, asked me if that was something I could feel good about or if we should negotiate it.

3 months later (this week), I went to see the APRN. [I thought I was going to see a CDE, but I had misunderstood] I liked her too. Also found her to be an attentive and perceptive listener. We spent much more time looking at downloaded data and really talking about how the standard calculations compared to my actual settings, where the gap between them seemed to be lining up with patterns of low bgs, and where certain aspects of my settings (time spent in one basal rate setting for example) might actually be working against what I was trying to achieve. We ended up changing all of my insulin to carb ratios and simplifying my basal rate profile (from 8 time periods to 4 or 5). That’s a lot of changes based on a provider’s recommendations for me. It has been a long time since I trusted what a provider was suggesting as far as settings go. She also came up with a genius suggestion for the alert settings on my CGM that have been causing real problems overnight. A totally simple, sensible suggestion and one I never thought of even though what I have been doing is no less effort/work with poor results.

Long story, short: This appointment was a great reminder for me that even though I know my own diabetes/body better than anyone, that doesn’t mean that a fresh set of eyes/perspective, along with training, education, experience, can’t help me find solutions that I haven’t found on my own.

The past two days have already had fewer low bgs. And, I just changed 2 of my i:c ratios tonight because I can see that the changes we made weren’t quite enough. If the APRN had suggested the bigger change at the appointment I know I would have balked. But starting out with a small change helped me to see some success and helped me trust that we are heading in the right direction.

It’s nice to be able to say “we” in relation to diabetes management again.

Posted in Balance, Endocrinologist, Hypoglycemia Unawareness, Living with Diabetes, Pump Management | Leave a comment

Crushing on the Bionic Pancreas

Yesterday we went to a diabetes gathering put on by the fairly new nonprofit Maine P-PODS (Facebook: https://www.facebook.com/MainePPODS) featuring Ed Damiano and Ryan Reed as speakers. The BHE gets major props for driving through a slushy snowstorm, entertaining the Bear through two long sessions of adults talking, and spending an entire afternoon at a diabetes day.

It was a nice event – about 8-10 tables of medical device companies, diabetes organizations, and information. And we got to meet up with some new friends whose daughter is the same age as the Bear & was dxd in the fall. I was most interested in going to hear Ed Damiano but I really had no idea…

No idea that I would be swept away by the bionic pancreas — I’ve read the articles, blog posts, etc. about participants’ experiences and what the bionic pancreas can do. I think too many years of hearing about the cure (“only 10 years away!”), all those mice being forced to have diabetes and then getting cured of their diabetes, and new devices that promise more than they can deliver has been getting in the way of me being excited about the b.p. I’ve kept up more of a distance – sure, that sounds like very good technology and I’m sure it will be available someday, but who knows when.

Listening to Damiano caught me hook, line, and sinker. He’s a D-parent (which I knew but it’s different hearing a dad talk about his kid, show toddler pictures, and clearly see that he “gets it.”), and has watched this algorithm/device make a huge difference on the ground. He has seen the results when pre-teens, teens, adults really put the device/algorithm through its paces – playing hard, eating meals that would be near-impossible to manage even on the pump, going through their daily routines. He really understands what it could mean to not make diabetes decisions, to live life without thinking about these details every moment. He understands what his team is working towards – that it isn’t a cure, it isn’t trying to be a cure, it is solving one very complicated problem that could improve quality of life exponentially. He gets that this solution will still require T1s to wear a device and to have insertion sites so all of that better be as good as it can be.

The bionic pancreas could let me sit down to eat and just eat. If anyone without T1 (or who doesn’t care for someone with T1) is reading this, I’m sure that sounds like a very undramatic statement. To me, it is almost as implausible sounding as me traveling to Mars. We could all go to sleep and I wouldn’t have to think that if I didn’t get up at 2:30 to test our daughter’s blood sugar she might not wake up in the morning. I would not have to wonder if she would still be breathing in the morning. I can’t remember what that was like, not thinking that.

I had tears in my eyes during parts of his talk. I felt that scary feeling of daring to hope for something. I still don’t think I can believe that it might be available in the fall of 2017 (when Damiano’s son is due to go off to college – his goal) – but it’s hard not to believe that it will be available. That is more than I have hoped for a long time.

Here is a video that he shared during his presentation – the Helmsley Trust made the video of the trials that were done at the Clara Barton and Joslin summer camps in 2013: http://sites.bu.edu/bionicpancreas/stories/  The more people who see this video the better.

I hope that every person with or affected by T1 gets to experience something this year that makes them feel hopeful about better days ahead. Whether it is a scientist talking about advances, a new friend who gets it and makes them feel less alone, or a no-hitter on their CGM — we all need to feel better about the future.

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CGM Blues Redux

This should be shorter than the original post on this topic…

The CDE said what I expected: You are the parents, you make these health decisions. Best thing is to be consistent & clear about what is non-negotiable. (paraphrase)

Of course, I know that. I think what I was really looking for was how to approach the emotions. But I also know that our (great) CDE’s job/strength is to manage the diabetes – the physical parts of it, the numbers. The social worker is who I need to talk to for the psychosocial pieces.

The CDE did give me the e-mail of another mom with two T1 kids who both wear Dexcoms so that’s another person I can reach out to. Hopefully she doesn’t just say that she has never had her kids resist this hard to the sensor.

The good news? The Bear agreed that we could insert a new sensor tonight and though she was tense, she went right along when it was time to do it.

The bad news? Before the 2-hour calibration window was up the sensor failed. I tried restarting it, but same error message. Called Dexcom & through the conversation realized that I had used an expired sensor. Dexcom couldn’t say for sure that was what caused the failure, but it does mean they can’t replace it. No big deal there but now I feel awful. A chance to have a positive experience (or at least less negative) and now I have to tell her in the morning that we need to take it off. It’s unlikely she will agree to put on a new one in the morning without her dad here (it usually takes the two of us – one to hold/comfort & the other one to insert) so it will need to wait until tomorrow evening. I usually cut myself at least some slack with these kinds of mistakes – they happen often enough with diabetes that you have to let some of them go – but this one I should have paid more attention to.

This too shall pass… but for now I still have the CGM blues – mainly over the distance between managing the numbers and managing the broken heart.

Follow-Up: The Bear cooperated to try a new sensor tonight — this one also failed after only about 25 minutes. The support people are always so nice… They are sending a replacement sensor for this failed one. I did explain my concern that here is a kid who is already reluctant to wear the sensor and I’m going to have to insert the 3rd one in as many days with no way to know if that one will fail as well. Could there possibly be another problem, I asked – could it be the transmitter or receiver? Almost always a sensor issue according to support. And it would be very rare to have a whole lot that was defective. Still, I went through the sensors we have left and chose one with a different lot number – only 2 numbers different, but still. Feeling discouraged.

Posted in CGM, Living with Diabetes | 2 Comments

CGM Blues

I have worn the Dexcom CGM for a few years – ever since the Navigator stopped being available in the States – and I know it makes a difference in my diabetes management. It can help me avoid some lows and help me not overcorrect for the highs. It also helps me identify when a high bg is persistent and more insulin is called for. My A1c has always been in range, but with a CGM I can achieve less variability in my bgs and that makes me feel better more of the time.

As soon as we had the opportunity to get the Bear on the CGM, we did it. This mainly involved waiting until she had enough physical “real estate” to accommodate both her pump site and a CGM. We went with the Dexcom because of it’s longer wear-life and reports that the insertion was less painful. This was before the pediatric approval but we were lucky to get it covered. Of course, I went into this feeling very positive – between my own experience and reading about many positive experiences with CGM use and kids on the DOC.

I’ll say up front that it is a good tool. There are times when knowing how her bg is trending makes the difference between a too high or too low that we otherwise would be reacting to. And sometimes it even saves us all some sleep. But it hasn’t been in the same category as my own use.

Tricky Bits:
1. The CGM is nowhere near as accurate on the Bear as it is on me. Even before I upgraded the software on my Dexcom the difference between my results and hers was huge. We know to double check any reading that would suggest treatment with her meter but a very unexpected number can still give you a shock. And it really seems to “bother” other caregivers in her life — teachers, babysitters, long for an explanation of how the CGM can be reading 320 and a finger stick results in 185. What did they do wrong? What should they do? It just adds another layer of confusion to an already unpredictable situation. I hope that when we upgrade the software in her Dexcom we will get improved accuracy, but I’m sure it will still be less accurate than my use.

2. Site Rotation. We have been using the Bear’s arms for the Dexcom sites. She wears her pump on her rear and hasn’t been willing to try anywhere else for that yet. We alternate arms and try to keep the sensor on for as long as we can (1 – 2 weeks usually though as with accuracy sensors don’t last as long on her as they do on me) but I still worry about having enough different places to insert. *Note the word “willing” – that is operative in pretty much everything that I find tricky about the CGM and the Bear.

3. The adhesive is much more iffy on her than on me. I feel like I do a lot more prep before insertion and then way more taping and re-taping just to keep the sensor on for more than a few days. I’m sure this has a lot to do with activity & how careful each of us are when putting clothes on and taking them off. Also, even though she doesn’t have severe irritation, there is more noticeable redness from the adhesive (and probably all the extra prep and tape) on her than I ever notice on my own skin. Yes, my skin is a lot older too :)

4. Emotionally, the CGM has been hard. She always resists an insertion even though new pump sites aren’t much of an issue. Even when she goes through one or a couple of insertions and says to us “that didn’t hurt as much as I thought,” the next one is still a fight. Through cajoling, insisting, bribing we manage to get her to suffer through it, but every few months she reaches the end of her rope and the resistance escalates. At these times we usually end up taking some sort of break from her wearing it. I was probably naive about this part of adding the CGM. I know better than to think that because others haven’t had much resistance from their child neither would we. And my wearing a CGM of course doesn’t guarantee that she won’t resist it herself.

So, here we are. Her sensor fell off last Thursday and she begged for a break. She has been wearing it nonstop for a while so I said ok – we talked about it and agreed that we would put a new sensor on on Monday before she returned to school on Tuesday. Monday night I said, “Let’s remember that we have two things to do tonight: a new pump site and a new sensor,” really expecting her to say “ok” or at least to reluctantly go along. I’m sure you can guess what really happened… Sobbing. Heartbreaking tears and my strong, energetic girl hunched over, head on hands, looking totally defeated. Cue mom’s guilt (it is my fault she has T1; and I’m the one who pushed for the CGM), grief (what is this doing to my child?), frustration (self-explanatory), and indecision (do I force this on her or do I let her not wear it?). Through tears she told me how much it hurts, that it’s no use to wear it (“it’s never right!”), that she never wants to wear it again. I told her she could have a few more days break since we are going to the CDE on Wednesday. I said we could talk to the CDE about it and see if she knows what other kids do to make it hurt less. But that she would have to wear it at some point. I tried to explain a little about why the CGM is helpful even if it doesn’t always match her meter (all things we’ve talked about a lot).

Later, after she had calmed down, I talked to her more about it. At that time she didn’t cry but it was almost worse. She asked why she doesn’t get to make any decisions when it comes to diabetes, why is it never “about me.” She said she wished they never invented a CGM. She asked why we would want her to do something that hurt her so much. She hates diabetes, hates having diabetes, hates explaining diabetes. She doesn’t care what her A1c is. She doesn’t care about being healthy.

I know she’s just a seven-year-old kid and can’t see this from my perspective. I know that it’s our job to care about her A1c as it relates to her overall and long-term health. I know that’s why we make the decisions about these things and she doesn’t get to yet. But I would make it different for her if I could. I would take on twice the T1 myself if that meant she didn’t have it.

I know what it feels like to have a blood sugar at 48 or at 480. I know what a pump site insertion feels like and what it feels like if it isn’t in a good spot or if it gets pulled out. I know what the CGM insertion feels like – and I can tell you that it does hurt, even the best ones still hurt more than a finger prick and more than an injection. And I can tell you that it hurts both when the needle goes in and when you pull the needle back out. So, I get it. I can truly empathize with what she is physically feeling. And I wish I didn’t have diabetes so I can empathize with some of what she feels emotionally. But, I’m not 7. Even with all that we do share, I am no comfort when she feels out of control, forced into doing something painful, different in a way she can’t fully articulate.

I hope that all of us talking about it with the CDE tomorrow will at least move the conversation forward to her being able to accept the necessity a bit more even if she won’t be able to agree with it for a while. Maybe we can try some numbing cream for the next few insertions like we used to do for pump sites. Maybe ice? Maybe some day she will let us try some other sites (both for pump and CGM) and we will discover that some spots hurt less. In the meantime, any and all suggestions welcome. Would love your comments and thoughts.

Posted in CGM, Living with Diabetes | 3 Comments