Category: DPAC

The Highland Cow Edition

Hi. I know. I know. Been a while.

I’m still here. By here, I mean on Earth. The last few months have been mind-bending, outrageous, quiet, loud, and contemplative – not in any particular order. My focus hasn’t been on writing. It’s been elsewhere, but I thought you might like a picture of a highland cow in all of its shaggy goodness and maybe hear from me.

Diabetes

I still have diabetes. (I understand that this may be shocking to some of you.) It’s still doing its thing and I’m still doing mine. Sometimes it’s a wonderful waltz of stable blood sugars and other times an awkward dip when I least expect it leads to a frightening tango where I lose my step.

I forget how to dance with this disease some days and it’s frustrating. You’ve been there, though, haven’t you?

Healthcare

I am still scared about the future of my health care. And those of every.single.person with diabetes in the United States who stands to lose protections due to bad genes. I read policy articles every morning and go from angry to distraught to outright “this is crazy-town-banana-pants” (this is a phrase uttered often in my house, courtesy of The Kid and John). I don’t have to pay to ride a roller coaster; I just have to read the latest news about ACA.

I channel those feelings into action through DPAC and ways that I can make a difference. I have met with Congressional staff, spoken with other organizations, and am looking forward to a few positive steps forward to protecting all of us with pre-existing conditions.

Silly Rabbit – Or Highland Cow…

I even asked friends if they wanted to participate in a March for Health that has grown into a group of amazing advocates who, on April 1, will speak up in cities around the country. But silly rabbit, you can’t do it… because something non-diabetes related is going on and I had to step back.

I ignored some health flags until I couldn’t ignore them anymore, so I’m waiting to hear back on bloodwork and diagnostics. It’s slowed my roll, so I’m stuck on the sidelines wondering when I can resume my rabble-rousing ways. When it comes to diabetes issues, I’m all “take it in stride,” but when it’s not diabetes, I feel helpless. (And the stories I could tell about trying to get an ultrasound scheduled would make you laugh… and cry.)

But Good Things!

I’m spending time with my favorite goofballs.

I just came back from our FOURTH Diabetes UnConference and we announced our fifth (October 13-15, 2017 in Alexandria, VA, y’all) which will be co-located with DiabetesSisters’ Weekend for Women conference.

DPAC will be part of Children With Diabetes Friends for Life in Anaheim, Orlando, and Falls Church, helping spread the goodness of advocacy. I love what CWD does and thrilled that DPAC can be involved.

And… there’s more, but my lips are sealed at this time. Good things! Happy things!

So, I’m here. Still here. Still have things to say but just not a lot of time to say them. And that’s OK, right?

 

Friday, October 7th at 12pm Eastern: Diabetes & Insurance

Insurance? November used to be the month of crisp air and Thanksgiving. (And decorative gourd season. NSFW.)

Now, it’s the month of open enrollment stress and the navigation of health insurance plans. For the third year in a row, I’ll be looking at the exchange plans and making spreadsheets and phone calls to determine what type of insurance option will be the best for me and my diabetes. (We are a package deal. Unfortunately.) It’s maddening and necessary.

I’m not saying that insurance is easier for anyone without diabetes. I just know that we have to look at formularies and deductibles and DME processes and MNIs and exclusions and….

You’re getting the picture.

Health Insurance and Diabetes

Over at DPAC (Diabetes Patient Advocacy Coalition), there will be a FREE online presentation with Dr. Edmund Pezalla, MD, MPH about diabetes and commercial insurance plans. He’s former VP of Pharmaceutical Policy and Strategy in the Office of the Chief Medical Officer at Aetna, so you know he knows what he’s talking about.

Register here for the presentation.

You can attend live – or you can still register and a copy of the recorded webinar will be sent after it’s archived.

If you don’t know what to watch out for… you might end up paying way more than you should. And no one wants that, right? Especially when there are gourds to be decorated!

 

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.

 

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.