Yes, you. I’m talking to you with the diabetes.*
Wanted to give you a quick update on what’s going on with The Diabetes UnConference. (And if you don’t know what it is… please go to www.DiabetesUnConference.com and learn about the first multi-day peer-to-peer idea exchange for ALL adults with diabetes (Type 1, Type 2, Type I want to talk about my diabetes…) being held at the Flamingo Las Vegas from March 13 - 15, 2015.
Room Block Deadline: February 10, 2020
The super-duper low room rate at The Flamingo Las Vegas, where the conference is being held, is only available until February 10, 2020. (This means you can count the days left on two hands if you have all ten fingers. If you don’t, well… borrow.)
After that, they release the room block to the hoards of basketball fans who will descend on Las Vegas for March Madness. (We root for Team Diabetes UnConference. We are undefeated.)
Don’t get caught paying a stupidly high rate for a room that you can get for a song (if that song costs $69.00+applicable tax and fees) through The Diabetes UnConference room block. Check out the information about The Flamingo Las Vegas here. And book your room here.
Attendee Registration Deadline: March 1, 2020
Even if you aren’t planning on staying at the hotel, please register by March 1st. We won’t be able to accommodate walk-ups, as head counts must be given to catering and for the incredible Dexcom sponsored High Roller event. I would hate for anyone to not be able to participate because they waited until the last minute. I can’t “squeeze you in”. Don’t miss out.
Why Should You Come To The Diabetes UnConference?
You can learn why I think you should come. Watch this interview where I make a lot of funny faces and answer questions (thank to TuDiabetes for the hilarious chat!):
Of course, you don’t have to take my word for it. Take their words:
- DiabetesMine’s words
- A Sweet Life’s words
- Kerri Sparling of Six Until Me’s words
- Stephen of Happy-Medium’s words
- Rhonda of Fifteen Wait Fifteen’s words
- Diabetes Daily’s words
- Heather of Unexpected Blues’ words
- Kelly of Diabetesaliciousness’ Words
We want you to be there. We want you to feel like you can talk openly about diabetes without judgment and learn from others. We want you to join us for the crazy, zany, beautiful things that will happen.
Don’t miss out. We don’t want to miss you.
*And you with the desire to help those with diabetes. We love you, too. While you can’t join us this year, you can help spread the word. Don’t worry… we have plans for you to come next year!
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.
Today is one of those days.
Living with diabetes is sometimes akin to paddling quickly in a leaky dinghy, trying to cross a river.
- You have a goal: the other side.
- You have tools to help get you there: a bucket to dump the water out that keeps pouring into the bottom and a motor or a paddle and even a rudder to get you moving in the right direction.
- You have others to help you: those in your boat with you or those encouraging you to row faster from the other side.
Despite all this, you still have to paddle fiercely while using the bucket to prevent you from sinking deeper and drowning.
If the weather is warm and sunny and the current is still, the trip across isn’t too bad. You’re tired, but you made it to the other shore.
- Rough weather? A torrential downpour? Pitch black of night?
- Lose a paddle? Can’t afford to buy another motor?
- Those on the other side are screaming at you, not in encouragement, but in frustration that you can’t get there fast enough or you’re just plain “paddling wrong”?
And that river is rocky. You have to dodge the rocks you can see and hope that you can avoid the ones that scrape the bottom of your boat that hide under the surface. Some of those rocks can rip a gaping hole into the side of your tiny dinghy and you are… sunk.
You have to climb into that boat every day. No breaks. Exhausted? Too bad. Feel like you can’t do it again? Too bad.
It is too bad.
And for anyone who has diabetes, our battered boats cast off anew every day to the other side (and there is always another side), while we hope to reach it unscathed.
Any wonder that people with diabetes are at a higher risk of depression than the general population? That our burnouts have serious consequences to not only us, but our friends and families?
Today, my boat is taking in more water than I care to admit. My blood sugars are slightly above range, but it’s because I’m exhausted from lack of sleep. (Alarms on my CGM/pump went off to let me know that I was getting a weak signal. My blood sugars were fine, but because the CGM couldn’t tell, it woke me up.) My food intake has been more caffeine and less salad today than I wanted. Even the good stress I feel over launching my dream is still stress.
If I didn’t have diabetes, my dinghy may have holes from other things. I may not know how to navigate other waters or I may be the one on the other side of the river, yelling encouragement.
But I have diabetes. And a leaky boat.
And as I look down the river,
there are millions of leaky boats struggling along with me to get to the other side. Every day.
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?
Different cultures have their own idea of “personal space”. I’ve lived in other countries and worked in companies where my own concept of “umm… you’re a little too close…” has been questioned. It’s a matter of how you were brought up and how comfortable you are in your own skin combined with the ability to be perfectly fine with someone standing very, very close to you when having a business discussion.
This isn’t an anthropology blog (although, really, aren’t we all studying human behavior in relation to diabetes, so…), but I am starting to feel like my personal space is being invaded and I don’t like it.
I’m a hugger. A snuggler. A squisher and a giggler and a tickle monster when it comes to my daughter. I am sometimes the instigator but as The Kid has grown older, she wants to attack me with the same happy ferocity and fire the first shot across the bow of runaround shenanigans that I used to incite. And the sensors and infusion sets on my abdomen are getting in the way… and they hurt. And that hurts me.
The real estate I have on my body is limited (seeing as I’m limited in stature and subcutaneous tissue locations). The current trial I’m conducting with the Medtronic MiniMed 530G with Enlite only allows placement of the Enlite sensor on my abdomen. I had three failed sensors last week. Three. Every time one failed, I had to find a new place to put the next one.
I am placing my infusion sets on my upper abdomen to stay out of the way of waistbands that chafe. I’m reluctant to put the sets anywhere else (I rip them out of my arms and legs far too easily, even with taped down tubing), but I’m thinking I may have to rethink things here, because…
I’m running out of my own personal space because of diabetes.
The worst part of this all is the reaction that I have when The Kid comes barreling straight for me, screaming wildly (causing me to have Braveheart flashbacks) for a hug… I tilt my abdomen inward as if pulling away from her. To protect the sites in the small space I have to use, I sacrifice the full body hug that I want to give. Every time I lift her up, I must be careful not to scrape her legs against my abdomen. Tickle war on the bed begins with a “Careful of my pump, sweetheart…”
And of course, I know that I have options. Take all the diabetes gear off. Go back to MDI and no technology. I understand that I am lucky. The technology has kept me alive and healthy so I can complain about not being able to hug The Kid as tightly as I want… and I hope I’ll be able to continue to complain about that long after we send her off to university. By then, I am sure it will be she that complains that I am hugging her too tightly.
But today, diabetes is invading my personal space. The space that is sore from repeated pokes and prods and insertions. How do I tell it politely to step back?
I have no idea.
I’ve never heard anyone describe injecting insulin as graceful or gentle.
The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.
If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.
Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.
Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.
Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.
Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.
The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.
You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand. But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.
No one said it would be easy. I knew it would be hard.
But no one told me when I was diagnosed that diabetes hurts.