Floating…

It’s been quiet around here at the blog, but I’m not being quiet in other places. Lots going on and I’m happy with the way it’s all going… it’s just going at full speed most of the day (and night).

Zero complaints, because truth? I love my life right now. As I texted with Heather Gabel earlier today, the only way I can describe it is: “happily terrified.”

Here’s some things I’m involved with or care about… in no particular order.

The Diabetes UnConference Las Vegas 2016

IMG_6147Crunch time. Registration is still open, but we’ve got a only a few spots left for attendees. To think that in less than 30 days, I’ll be in Las Vegas with some of my most favorite people in the world – and that I’ll get to meet more new favorite people, well… swoon.

These people are my tribe. They believe in peer support and the power it wields. I expect laughter and tears and new inside jokes as well as some old ones (#vegasdust, #claptwice). There’s a lot to do between now and then.

The Diabetes Pre-UnConference Sessions

The Diabetes Collective (the non-profit I founded in 2014) is hosting the Friday, March 11, 2016 Pre-UnConference sessions, which will be free and open to the public. The focus is diabetes, but not necessarily psychosocial – we’ve got Moira McCarthy Stanford sharing her ideas on how to put the fun in fundraising for diabetes research and a session on how not to lose your mind with diabetes. There’s much more; take a look.

If you’re in the area (or road trip!), join us. You can register here.

Diabetes Patient Advocacy Coalition

We held our first DPAC Insiders dialog this week and while I knew what we were planning to do in 2016 in terms of diabetes policy advocacy, talking about it makes me even more excited.

Bennet and I will be doing DPAC Diabetes Advocacy Boot Camps online and in person to assist passionate people in becoming effective advocates for diabetes policy. It’s certainly not the same as raising diabetes awareness or being an advocate for myself.

In fact, if you want to join us in person, you can register for one of two DPAC DABCs: at the Pre-UnConference session or at the CWD Friends for Life Falls Church. (You need to register!)

HealtheVoices 2016

043774-151123_HealtheVoices Application Announcement 1.25.16

This is the HealtheVoices Conference‘s second year and I’m honored to have been chosen to be part of the advisory team this year. For those who are online advocates of ANY health condition, this is an amazing and empowering experience. I learned so much about other health communities and a little about how I view myself as an advocate.

Here’s my recap of the 2015 conference. Worth a gander.

If you are on social media (have a blog, Twitter following, Instagram groupies) talking about a health condition, I encourage you to apply. While I can’t publicly talk about them yet, the keynote speakers and the sessions are going to rock socks off.

This year, it’ll be in the Windy City (a.k.a. Chicago).

The application deadline is February 22, 2016. Don’t wait until the last minute!

Please note: Janssen Global Services paid for my travel expenses for the conference in 2015. I am being compensated for my time and travel expenses in 2016. All thoughts and opinions expressed here are my own. 

Still Pump Breaking

I’m tinkering. Experimenting. The lows are significantly better because I reduced the Tresiba dosage. I’m having issues with the nano pen needle length (insulin is leaking out, despite keeping the needle in long enough for it to do its thing) and I’ve got my pharmacy special ordering syringes with half-unit dosing. I appreciate the DOC for commenting and sharing their thoughts, tips, and suggestions so that I can have an alternative to insulin pumping. You all rock.

And Everything Else

You gotta read this. Biohacking. Whoa.

But as far as I go..

  • There’s stuff percolating with PatientsLikeMe.
  • Still doing interesting things with the Diabetes Advisory Council.
  • I signed up to run my first 5K in May.
  • There’s upcoming trips to DC and Tweet-Ins planned soon.
  • I’m using this to get a lot of writing done (everywhere but on this blog, it seems) to cut down on the noise in my head.

 

And then there’s these goofballs, who keep me grounded…

even when I’m floating.

Selfies with goofballs. It's like dancing with wolves but without dancing. Or wolves. I love these two.

Selfies with goofballs. It’s like dancing with wolves but without dancing. Or wolves. I love these two.

 

Crashing The Diabetes Bike

bicycle-1515716-640x480I’m about five days into my MDI adventure (Tresiba and Novolog flex pens) and well… from the title, you can guess how it’s going.

It’s a little bumpy.

It’s not Tresiba’s fault. Or Novolog’s fault.  The flex pens are amazing (once I learned how to use them!) and throwing them into my purse along with the rest of my gear is simple.

It’s having to learn how to be a person with diabetes all over again in a more “traditional” sense. Not that I was sloppy, but I would casually bolus for meals and figure if I saw a rapid rise, I could dose a teensy bit to bring it back down within range. I would guess at carb counts, figuring I could always adjust later. Adding Invokana to the mix means that my carb ratios and correction ratios are also a little off kilter.

And the math. Oh, the math. I forgot about diabetes word problems:

If Christel’s fasting blood glucose level is 164 because she bottomed out last night and the cortisol is still hanging around in her system and she wants to drink a cup of coffee with half and half now and scarf down an English muffin (double fiber!) with peanut butter before she goes running at the gym an hour later, how much should she bolus?

(If you know the answer, please let me know, because I have yet to solve it correctly.)

I’m pulling packages out of the garbage to get the carb counts. I’m eyeballing fruit. I’m eating more protein because it’s less of a headache. And yet, my CGM graph still looks ugly.

Here’s the rub: One unit of insulin means a lot to my body. It loves it these days. So much so that if I inject one unit to correct a BG outside of my comfort zone, I can send myself into a severe hypo. Which I did this weekend. Flex pens are only for one unit dosing (or two unit dosing). Yes, you can purchase cartridges for a half-dosing device, which I may look into doing next month if this continues.

The second rub: From my years of pumping, I know that my afternoons are when I need less of a basal. Crash. I will be decreasing my basal Tresiba dosage to counteract the crashing. We’ll see.

Why am I doing this?

Normally, when it’s time to eat, I reach down while glancing between my CGM and my meal and bolus. These days, I head off with my phone (mySugr is awesome if you are doing a MDI regimen. Seriously. No better way to track injections and food and times and BGs!) to check my BG by fingerstick, think about what I’m going to be eating, calculating if I still have insulin on board and how many carbs I’ll be eating. Then twist that pen, inject, and dispose of the needle in a sharps container. It’s not 30 seconds…

John asked me why I was really taking a break when we were eating dinner last night.

I think I’m doing this for a few reasons: 1) I really need a break. 2) I need to know if something does go wrong with my pump that I can handle MDI and know what my dosages should be. 3) It’s teaching me to be mindful of what I am eating and doing. It’s teaching me what it means to have diabetes again.

I may explore the amazing Dr. Steve Edleman’s “untethered regimen,” which for me would mean I would continue to take Tresiba (which I do like very much, for when I do get it right…. my BG levels are beautifully stable) and then only put the pump on to bolus. (This would allow me to do those 0.4 correction boluses that I simply can’t do right now with the flex pen.)

I’m still riding the diabetes bike. Crashing is inevitable when you’re learning to ride again.

Words of wisdom, anyone?

 

 

Taking a Diabetes Break with Tresiba

unnamed-2It’s happening for the first time in seventeen years.

I’ve decided to take a break from my insulin pump.

Granted, we’re not breaking up permanently. I’m just going to see other insulin regimens for a little while.

I need a break.

After a “naked” shower earlier this week, which always leaves me feeling elated and extra clean (no worries about scrubbing and ripping an insertion set off), I wrapped myself in a towel and glanced over at the counter where the next round of “Who wants to play a pancreas?” waited to be inserted.

And I just couldn’t do it. 

The thoughts shot quickly and unexpectedly through my brain:

  • “How much longer will I need to do this?”
  • “I don’t know how much longer I can do this.”
  • “I don’t want to do this.”
  • “Nope. Not doing this.”

And then I walked away.

Diabetes isn’t a part-time gig. We all know that. I can’t just not show up and expect to live much longer, so when I walked away after that little internal hissy-fit, reality set in and more productive thoughts trickled through:

  • “So, what can I do to change the way I’m feeling about putting another insertion set in?”
  • “What are my other options?”

Seventeen years with insulin pump therapy have produced some of the best control I’ve ever had. It’s also been a pain in [insert body parts]. Always attached, always “almost” in the way. I have found that I hug my daughter differently based on where my infusion set is placed and where my pump is on my body.

I love my pump, but I need a break.

Tresiba

Nothing this major should be decided alone, although in the end, it’s me that gets to decide. My hissy-fit included a frantic text to my husband, telling him that I was going off the pump “right now!!!” and I was going to pick up a prescription of Tresiba. I had discussed it with my CDE a few weeks ago and we switched my “back up” insulin to it. (I have come close, but never had to use my back up insulin.)

Fortunately, one of us (hint: not me) is much more logical and rational. He reminded me that this was a major change and that he’d prefer to be around when I began the therapy change “just in case.” While I wear a CGM and mostly react to the alarms, I’m either home alone or just with the Kid most of the day. We agreed that I would wait until today to take a break.

Decision made, I put on my big girl pants (after all, I was still in a towel) and inserted my CGM sensor and my infusion set. Just to spite me, neither one hurt a bit or bled.

nph-1I have only used an insulin pen twice in my life. I had to read and re-read the instructions to make sure that I was doing it right. I instinctively rolled the pen in my hand to make sure it was mixed. (NPH, anyone?) Old habits die hard.

I just took my first injection of long-acting insulin in seventeen years. 

New adventure. New medications. New challenges.

But a break all the same. Wish me luck!

 

Diabetes KonMari: Supplies

Have you heard about The KonMari Method? It’s the concept of de-cluttering your life developed by Marie Kondo. She wrote this book:

51H8x07Fd7L._SX351_BO1,204,203,200_The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing

She wants you to only keep things that “spark joy” and to find a place for everything in your home. Obvious, she does not have diabetes, because she would know that it’s hard to get that spark of joy from a lancet. But.. I kind of get what she means. (I’ll explain later.)

I was curious (her “method” is hot on Facebook and Pinterest), so I took a gander at what her revolutionary concepts boiled down to – and if I could adapt them for life with diabetes.

KonMari: Diabetes Supplies

Here’s what her main concepts are – and my take on whether I can (or you can) KonMari my diabetes supplies. Some of what she espouses is a little touchy-feely, but if you can go with the flow or look past “thanking your items,” you might find Diabetes KonMari could work for you, too.

  • Tidy up all at once, not little by little. The idea that if you just try to organize a little bit every day, you’ll end up organizing just a little bit every day.
    • I feel like that’s all I do with a kid. Tidy up little by little – a Lego here, a stray sock there. You know the phrase: “Death by a thousand cuts?” That’s what tidying up little by little can feel like. Anything that I can do for my diabetes to “tidy up all at once in one fell swoop,” I’m willing to do. Also, need to check those expiration dates, right? So, let’s do this.
  • Sort by category, not by location. “The best sequence is this: clothes first, then books, papers, komono (miscellany), and lastly, mementos…Sticking to this sequence sharpens our intuitive sense of what items spark joy inside us.”
    • OK, it’s all komono with diabetes, right? Grab all your diabetes supplies and everything related to diabetes. Everything. Put them all together. Wait. Did you forget that box of lancets hiding in the other bathroom? That one, too. The meter in your purse? The extra meter in your suitcase? Glucose tabs. Juice boxes. Anything and everything to do with diabetes, down to the extra supplies in your emergency kit. Put it all there, sweetie. Everything.
  • Start by discarding, all at once, intensely and completely. “Do not even think of putting your things away until you have finished the process of discarding,” she exhalts.
    • I had diabetes detritus that I didn’t even know I still owned. Items that I’m sure I said once: “I might need that.” and threw it in a box. Lancets from 2004, still in the packaging. (Admit it… you probably do, too, if you’ve had diabetes that long.) I culled my diabetes supplies down from a mountain to a fairly robust mound, putting some items into piles for donation (if I could) and trash (if I couldn’t). Gotta say it was cathartic. And here’s why…
  • sparks-1-1553324-640x480Keep only the things that “spark joy”. She wants us to pick up every item and ask, “Does this spark joy?” She tells us: “Keep only those things that speak to your heart. Then take the plunge and discard all the rest.” Let’s be real. We’re not going to hold every item. But…
    • “What the hell, Christel!?! (Yes, that rhymes.) How can diabetes supplies give me joy?” Yeah, yeah. I’m right there with you. Except that I have this one favorite lancing device that I use, so why do I have seven different other types of lancing devices that I will never use? Why do I keep infusion sets that I tried once and abhorred? Why do I have glucose tabs that make me gag in the bottom of a backpack? (I’d rather eat table sugar.)
    • The point of this is to figure out what you do like and keep those items and get rid of the rest. If you’re scared about losing your one lancing device you own, get another from your medical team or purchase one. (Or swap an unused one with someone you know.) Clear out the stuff you “might use someday if I use up everything else” and you’ll find you have the diabetes supplies that may not bring you unbounded joy, but don’t suck.
  • Once you’ve finished discarding things — (selling them, donating them, giving them away, or ::gasp:: throwing them away) — only then do you store them. KonMari tells you to think about why you have a particular item(s), and then think hard about the role it plays in your life. Ask when you got it. Why you got it. How about that spark? If you decide it’s not worth keeping, you can say, “Thank you for teaching me what doesn’t suit me,” and let it go.
    • Um… I don’t think you have to touch and thank each lancet separately. You’d be “thanking” for a long time. But think about what you don’t need.
    • But in donating these items, you’re helping someone else. Books on diabetes that you don’t need? Donate them to your local library or share them with your local diabetes group. Ask if anyone could you unused lancets, syringes, meters, etc. and gift them to someone who will be sparked by joy. And if you can’t find anyone, you can always donate to Insulin For Life – USA. (Link and info on what you can donate here.) But throw away any expired or used items. Those aren’t helping anyone – especially you.
  • If you use it, you need to put it away. Storage is key. “Clutter is caused by a failure to return things to where they belong. Therefore, storage should reduce the effort needed to put things away, not the effort to get them out.”
    • I bought clear plastic bins with locking lids and put my most used items (strips, pump supplies, and Dexcom sensors) on a shelf that I can easily access. Extras? Storage that is easily accessible but out of the way. What about glucagon? Glucose tabs? Those lannnnnccccetttts? Find a place for them to “belong” and keep them there until they are needed. Nothing is worse that trying to find a glucagon kit shoved in a drawer.
  • Eliminate visual clutter. “By eliminating excess visual information that doesn’t inspire joy, you can make your space much more peaceful and comfortable.”
    • Sounds funny, right? “I keep the meter on my bedside table, along with my juicebox and my glucose tabs and my receiver and…” We talk about being overwhelmed with our supplies/devices sometimes, so this is what I’m doing:
      • My bedside drawer holds my meter, my glucose tabs/juicebox, etc. At night, I take them out and if they didn’t get used, they go back into the bedside drawer in the morning. It’s a hard habit, but I like being able to look over in the morning and see the absence of diabetes on the night table.
      • I’ve begun to find storage places and taking diabetes out of my line of sight, but I know where everything is stored now.

empty-box-1312775-639x424Would you be wiling to try and KonMari your diabetes? Do you think this method can’t be used for diabetes? Or do you have a better method to “spark joy?” I’m curious as to your thoughts, too!

Bloodborne Infections from Diabetes Supplies? Yep. You read that right.

biohazard-3-1307153-640x480The longer I have diabetes, the more I learn about how we, as a community, have a lot to learn.

If you’ve ever been a patient at a hospital or a health clinic, you know that the goal is to send you home healthier than when you arrived.

Unfortunately, it doesn’t always happen and PWDs are more susceptible. It’s not just blood glucose levels we need to worry about while we’re under a medical team’s care. We also have to worry about bloodborne virus transmissions. I didn’t know  until I started to do some research. What I found shocked me – and I’m sure it will shock you as well.

Hepatitis B

Hepatitis B is a bloodborne infection that can cause serious, deadly issues (think liver cancer or cirrhosis). It can be transmitted a number of ways, including sharing of needles or blood glucose testing equipment.

Hepatitis B Virus (HBV) can survive outside the body at least 7 days and still be capable of causing infection. Think shared blood glucose testing equipment. Anywhere. Are you sure that the health care professional has washed his/her hands before putting on those gloves? Did you see them disinfect the BG meter? Are they using a single use lancet? Did an infected person’s blood land on the cart, then transferred blood to the new pair of gloves the team member just put on when he/she picked up the meter and moved the cart?

Even worse? Think about your kids letting a friend use a lancet device “just for fun.” Sadly, even kids can have Hepatitis B.

When you start to think about all the ways this virus can be transmitted, you might begin to feel sick to your stomach. (That’s one of the symptoms, by the way, but many of the symptoms are “run of the mill” when you have diabetes.)

But where it’s happening most often is long-term care facilities. And these are preventable.

Between 2008 – 2014, there have been 23 reported outbreaks, 175 outbreak-associated cases, >10,700 persons notified for screening. 17 of the outbreaks occurred in long-term care facilities, with at least 129 outbreak-associated cases of HBV and approximately 1,600 at- risk persons notified for screening. What should worry you is this next statistic:

82% (14/17) of the outbreaks were associated with infection control breaks during assisted monitoring of blood glucose (AMBG). (http://www.cdc.gov/hepatitis/statistics/healthcareoutbreaktable.htm)

There have also been cases of Hepatitis B and Hepatitis C transmissions at hemodialysis clinics (and if you think that’s not diabetes related, think of how many of us may be on dialysis for kidney disease) and home healthcare agencies.

It’s not like nurses or doctors think: “How can I hurt patients today?” But these outbreaks are PREVENTABLE. How? By following proper infection protocol policies and training healthcare professionals and patients to not share needles or lancing devices (and a few more steps).

Now, I’m sure you’re thinking: “Why should I care about this?” Simple.

Someday, it could be you.

Or someone you love.

And if we don’t ensure that these infection risks are mitigated, then who will?

What You Can Do

DPAC_ASKanEXPERT_infectionJoin the online presentation of DPAC’s Ask The Expert presentation on Tuesday, January 26th at 12pm.

Diabetes Patient Advocacy Coalition (DPAC) went straight to the CDC and they’re pleased to have a passionate expert to share her thoughts and what we, as the patient community, can do.

Dr. Pamela Allweiss, MD, MPH, Medical Officer for the Division of Diabetes Translation at the Centers for Disease Control and Prevention (CDC) will discuss the risks of virus transmission in healthcare settings (hospitals, clinics, and long-term care facilities) in the United States.

Healthcare-associated infections (HAI) are a serious threat to even the healthiest patients; people with diabetes are at higher risk than the general population. Did you know that there have been outbreaks of Hepatitis B in healthcare settings because of improper infection protocol and diabetes supplies?

During this presentation, you will have an opportunity to learn more about why this is happening in our healthcare system, ask questions, and discover how to mitigate these risks and ways to engage your state policymakers to enforce infection control protocols to ensure your safety.

Register by clicking here. Even if you can’t attend the live presentation, you can still send questions to info [at] diabetespac.org ahead of time and get a link to the recording after the presentation ends.

We’ve got enough to worry about. Let’s work to worry about one.less.thing.