Tagged: Type 1 diabetes

Don't Kick The Baby! (Kickstarter It!)

If you’ve ever watched South Park, you might remember this:

And I don’t want you to kick the baby, I want you to Kickstarter this baby.

We Need Real Resources for Type 1 Diabetes Pregnancy

Even with one of the top endocrinologists familiar with Type 1s, pumps, and pregnancy, I felt alone in my care. That whole “What to Expect When You’re Expecting” doesn’t discuss the hypos in the first trimester, the fears of high blood glucose, or the psychosocial aspects of a pregnancy that has diabetes in the mix.

Know what I had?  The Medical Management of Pregnancy Complicated by Diabetes by a well-known physician that was geared towards medical professionals and not people with diabetes. (And I bristled at the very title… “Complicated” – yep.) It gave information, but when you are awake at 3am and freaking out, this tiny book just didn’t cut it. I knew very few individuals who had Type 1 and had recently given birth (In fact, I knew one.) and longed for real resources.

Enter The Solution

I’ve said before that I’m not the person to turn to for information about Type 1 diabetes and pregnancy, as my pregnancy was not about my diabetes. But I know plenty of women now who have shared their experiences and insight since The Kid was born, and I’m thrilled that one of them (Who also happens to be a dear friend with an adorable baby, Lucy!) is providing a solution for a patient-focused real resource.

Ginger Vieira.

Along with Jenny Smith<CDE, RD (who is also a PWD!), they’ve created: Pregnancy with Type 1 Diabetes: Your Month-to-Month Guide – and there’s a problem.

No publisher will touch it, because the market is too small. That means those of us Type 1s who want to have healthy pregnancies are not worth publishing for, because we don’t make up a profitable segment of the population. So, Ginger and Jenny have gone out to the community to help get this book published through Kickstarter.

Why? Because all women with Type 1 diabetes deserve to have real world resources to help them get through one of the most rewarding (and management intensive) times of their lives. This is one of them.

Ginger was kind enough to share this video with my readers (It has Lucy in it!) why this is important and how you can support the work they’ve done.

 

What’s better than Lucy?

That’s a trick question. Nothing. But if there was, it would be an excerpt from their book, which is what Ginger has graciously offered to you as an exclusive to this blog.! Take a read, then head to Kickstarter and give what you can… and share this within our community.

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EXCLUSIVE FROM PREGNANCY WITH TYPE 1 DIABETES

(THANK YOU GINGER AND JENNY FOR GIVING US A SNEAK PEEK!)

Preparing for Pregnancy: Part 3

New Standards for High & Low Blood Sugars

 

There’s been a longtime assumption that anyone with an A1C in the 5s or low 6s must be experiencing a tremendous number of low blood sugars every day or every week, but the truth is that that is not an essential ingredient to achieving an A1C at or near non-diabetic levels.

What it really comes down to is different goals, different standards for the day, different ways of dosing insulin, of choosing what to eat, when to take insulin and how much longer after that before eating…it’s a variety of habits that lead to an A1C in the 5s or low 6s. Those habits require a tremendous amount of practice, discipline, and always being open to learning and making adjustments.

If you are aiming for an A1C in the 5s and low 6s and you’re constantly experiencing low blood sugars then that is a sign that you’re due for a little help and fine-tuning on how you’re approaching your diabetes management. Frequent hypoglycemia is not an essential part of achieving a low A1C.

This entire book is designed to help you achieve a low A1C without experiencing frequent hypoglycemia! It’s all about blood sugar management, fine-tuning your insulin doses, and learning as much as possible about diabetes management during pregnancy and everyday regular life!

Okay, now that we’ve gotten that part out of the way, let’s talk about the A1C you’re aiming for and the blood sugar goals you’ve set for yourself.

What do you currently consider a “high” blood sugar?

We’re going to keep this straight-forward, cutting right to the chase: if you’re trying to achieve an A1C of 6.0 but your blood sugar between meals and during most of the day is usually sitting around 150 mg/dL or higher, you’ll be as likely to reach an A1C of 6.0 as someone driving north when they’re trying to get to Florida. It just doesn’t make any sense. Your target blood sugar ranges and your A1C goals don’t match.

What do you do when you see a blood sugar of 150 mg/dL on your glucose meter two hours after eating? Do you take a correction dose of insulin or do you say, “Eh, that’s fine”?

Take a look at the following A1C translation chart from the American Diabetes Association explaining what the average blood sugar level and overall range is for each A1C result:

  • 12% = 298 mg/dL (240 – 347)
  • 11% = 269 mg/dL (217 – 314)
  • 10% = 240 mg/dL (193 – 282)
  • 9% = 212 mg/dL (170 –249)
  • 8% = 183 mg/dL (147 – 217)
  • 7% = 154 mg/dL (123 – 185)
  • 6% = 126 mg/dL (100 – 152)
  • 5% = 97 mg/dL (70 – 125)

What is your A1C right now? If you’re at 7.5 percent and you’re extremely frustrated, ask yourself, “How often is my blood sugar sitting around 150 mg/dL?”

Now, where do you want your A1C to be either prior to pregnancy or during?

Take a look at what your goal A1C translates to as an average blood sugar and blood sugar range.

For example, an A1C of 6.0 percent: That means your blood sugar is rarely over 150 mg/dL, and very often sitting around 120 mg/dL. That 30-point difference matters. If you’ve been telling yourself that a 150 mg/dL isn’t a big deal and isn’t much different than a blood sugar of 120 mg/dL, then you now know exactly why your A1C hasn’t budged from 7.5 percent.

Want to get your A1C in the 5s? That means you’re aiming for non-diabetic blood sugar levels. It means you’re spending the entire night near 90 mg/dL. You’re waking up near 90 mg/dL. (Why consider the overnight? That 8 hour window of time that you are hanging out at a value, weights about 33% into what your A1C value is going to look like).  An A1C in the 5s means You are pre-bolusing your insulin before meals so that your blood sugar does not rise too much past 130 to 140 mg/dL for very long, or very often. It means when you correct a low blood sugar, you only consume enough carbs to bring yourself back up to 90 mg/dL rather than 130 mg/dL. It means when you see a blood sugar level sitting steadily at 140 mg/dL, you take a tiny correction dose of insulin to bring it down to 90 mg/dL.

An A1C in the 5s means you’re always aiming for non-diabetic blood sugar levels, but that doesn’t necessarily mean that’s where you should aim.

Non-diabetic blood sugars?! That’s crazy!

We know, it sounds crazy! But here’s the thing: you don’t have to do it perfectly. (And frankly, you don’t have to do it all–that’s a personal decision that you’re going to make for yourself. It can’t be made for you!)

Instead of perfection, it’s just the aim. The target.

Instead of telling yourself that it’s impossible to manage your blood sugars that tightly, you’re telling yourself that you can do the very best that you can do to achieve the tightest blood sugar levels that you personally can achieve for the sake of both your health and your baby.

You don’t have to be perfect. You don’t have to get your A1C in the 5s. It’s okay if you never see your A1C in the 5s while you’re pregnant–but the intent is what matters. The intent and the belief in your ability to do the best you can do is what’s going to help you achieve blood sugar levels you’ve never thought you could achieve. Learning how to manage your diabetes is a non-stop, life-long learning process and if you believe in your ability to learn and improve, you could learn more about diabetes management during your pregnancy than you even realized there was to learn!

You just have to believe in your ability. Not the ability to be perfect, but the ability to improve, to achieve things you’ve possibly never achieved. That is all.

(And if you have a healthcare team that doesn’t understand the aspect of “perfect blood sugars during pregnancy isn’t possible” thing…you show them this chapter and you tell them what’s up!)

And it’s really about creating your own personal standards and goals.


For all of us that didn’t have this resource when we were going through our own pregnancies with Type 1 diabetes (not COMPLICATED BY DIABETES), don’t you wish we had this? That’s why I’m sharing this and asking for your help with their project, because I know that it’s not about being a profitable market… we are not a “market” – we are women who want healthy pregnancies and real-world resources.

Easy Flow Chart for High BG Management

In case you need to print it out and show it to someone who might not understand just how incredibly easy it is to manage diabetes on a daily basis. (I can’t even type it without laughing.)

I’m sure I skipped a few key steps in the flow chart.

Easy Flowchart for High BG Management

P.S. This was my day today.

Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

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2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

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I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

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

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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.

 

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!