Category: CWD FFL

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?

 

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.

 

The Tribe

Birdie (Kerri Sparling's daughter) and The Kid (my daughter) at Friends For Life 2013 - just two of the gorgeous children that T1s can produce.
Birdie (Kerri Sparling’s daughter) and The Kid (my daughter) – just two of the gorgeous children that T1s can produce.

In less than twenty-four hours, I will be surrounded by my tribe.

Friends for Life, the premier conference for families with Type 1 children (and some of us Type 1s who are children at heart), is going on in Orlando for the next few days. It’s the one conference that no one will ask you if you can eat that, look at your pump and wonder aloud if it’s a pager, or want you arrested if you say you’re high and pull out a needle.

The tribe grows larger this year. I’m honored to be on a morning panel for the first ever Diabetes Advocates MasterLab – a full day session discussing the importance of advocacy and how everyone touched by diabetes can be an advocate. What’s special about this is that we’ll have Type 1 and Type 2s together, along with the parents and grandparents of Type 1s (with some of them being Type 2s themselves). The more encompassing the tribe is, the more powerful it becomes.

For as horrible as this disease is, there is comfort in the solidarity of the tribe. Complete strangers give knowing nods in passing, acknowledging green bracelets signifying Type 1 diabetes on each others’ wrists. When a Dexcom trill goes off in a room, twenty people look down to see if it’s theirs. Someone has a low blood sugar? A torrent of glucose tabs rains down upon them.

There is such comfort in being with others who understand the silent wish as a meter counts down to a number. There is such joy in celebrating the new, squishy babies of T1 moms. There is even such pain as the tears flow when a fellow T1 speaks aloud your innermost fears. We are bound together by blood. And nonfunctioning pancreases.

The dream of The Diabetes UnConference came out of last year’s attendance at Friends For Life. I learned so much, but it was the moments of “life discussions” outside of the meeting rooms that sparked so much of what has now become a part of me. This year’s Friends For Life will continue to be a catalyst in how I live and be an inspiration of who I want to be.

I am eagerly awaiting the open arms of the tribe that no one ever wanted to join.

My friends.

My d-family.

My tribe.

 

Hoarder…

2011-05-22_Liberty_Warehouse_condemned_notice_in_DurhamI’m a hoarder.

You wouldn’t expect that from me, especially since our house is on the minimalist side of the spectrum and I’m not very nostalgic with material items. But I am hoarding right now and I don’t know how to stop.

It’s been almost a month since the Friends For Life Conference in Orlando. I’m hoarding memories and things I want to say about what I discovered while I was attending. I want to share and yet every time I sit down at the keyboard, my mind seizes up and won’t let the words flow. What’s worse is that I am still processing some aspects, so one thought piles on top of another, pitching precariously over my head.

Others have touched upon their own personal highlights, and I’ve done my share, but there is so much more that needs to be told.

So, I ask this of you. Much like hoarders who get professional help, I have to start small, so I’m leaving it up to you, dear readers, to tell me the order of my posts. (Maybe this will help me release some of these thoughts and feelings…).

What would you like to hear about first?

You’ll be able to see what others think, but don’t let that sway you. (If you want to hear me talk about something else, then comment on that as well…) I need help before my head is condemned!

Diabetes Roulette

NeonAs I was discharged from Joslin’s inpatient treatment unit after my diagnosis, we stopped in the clinic gift shop (What a silly euphemism for pharmacy) for it. My parents insisted.

It was ugly.

Institutional. Klunky. An eyesore.

And a constant reminder that I had, as it was engraved on the back of it: DIABETES.

The firecracker red caduceus symbol was like a neon sign to strangers, both adults and children. The conversations were:

ADULT VERSION

“Are you allergic to penicillin?”

“No, I have diabetes.”

The Look* came next and the inevitable Greek tragedy of some loved one who was afflicted with this horrible, wretched, unforgiving disease and was now dead. (Don’t get me wrong. It’s horrible, wretched, and unforgiving, but I was twelve. A mature twelve, but I was still scared out of my wits. You don’t say stuff like that to a kid. Ever.)

*The Look can only be described as the reaction on your face when you accidentally punt a puppy into a wall or fart in a quiet room full of people you want to impress. A painful, pitiful, “Oh my gosh, I can’t believe that this is happening…” expression. You know The Look. 

CHILDREN VERSION

“What’s that?”

“I have to wear it because my parents said so. I have diabetes.”

“Whatever. It’s pretty shiny.”

Fin.

I preferred the children’s style of conversation, obviously.

I dutifully wore it everywhere and just gritted my teeth every time I looked down at my wrist. For a while, I shoved it under my Swatch® watch and hoped that no one would notice. By the time I was sixteen, that stainless steel shackle was thrown into the bottom of the jewelry box. Sayonara.

In an attempt to get me to wear something in case I passed out in public, my parents bought a prettier, delicate gold one. It got some play, but joined the first one at the bottom of the box.

“Stainless, meet Gold. You’ve got so much in common.”

Years went by and when the mood hit, I would pull out Gold and slap it on. When I went on vacation or when I was traveling for business. Never when I was out “hitting the clubs” (Gah, what a horrible phrase…), when I probably needed it most.

RevolverDiabetes Roulette. 

That’s what I was playing. For stupid, vain reasons. I didn’t want people to know that I had diabetes. I didn’t want to talk about it, didn’t want people to know me as “the chick with diabetes” (rather than “the chick with the classic, dry wit” – they didn’t know me as that either, but I could dream…), didn’t want to be judged if I was stuffing my face with a doughnut or a Big Mac.

Even after I began wearing a pump, I would still not regularly wear a bracelet. I bought a Sports version for kicks, but it joined Stainless and Gold in the box (which was starting to get crowded…)

I didn’t when I began wearing a CGM. Why? Wasn’t it obvious? Neon signs – two of them now. (And these items even beep!)

Goodness, it wasn’t like people couldn’t see those items strapped to me like a mad bomber in the marketplace. And I wasn’t shy about my diabetes anymore. I’ll talk about it to anyone who asks and I tend to push back when they start up the kidney or amputation monologue.

Know what changed?

I was sitting in a session at the Friends for Life Conference in a highly emotional (at least for me) session: “Parenting with Type 1 Diabetes”, listening to someone I admire greatly say:

“I have my children’s names on my ID bracelet so that if something happens, the first responders can call them by their name.” 

At that moment, my selfish Diabetes Roulette game was over.

If something ever happened to me in public, I want my daughter to be safe and spoken to gently by her name. I want my husband to come get her or to be informed of what was happening.

I am wearing  one of those ID bracelets now (Blaze orange Sport, if you must know, which makes Stainless look downright sedate), waiting impatiently for the new Lauren’s Hope one with my daughter’s name and my husband’s phone number engraved on the tag.

It will be a constant reminder that I have diabetes.

And a family.

And that both need to be cared for when I can’t.