Tagged: Diabetes Advocates
The Tribe
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.
The Other Invisible Disease
“Get on a plane and just disappear.”
That was the first thought that popped into my head that morning, eighteen years ago.
Get in the car, get to the airport, purchase a ticket, and go.
Where?
It didn’t matter.
Do what when you got there?
Didn’t matter.
Nothing mattered.
From the outside, my life appeared fine and dandy. A successful career, family close by, disposable income, and a sweet loft apartment.
I was miserable.
Invisible
Much like diabetes, depression is invisible - and misunderstood.
Those who say: “Snap out of it. You’ll feel better tomorrow,” or “What’s to be depressed about?” may not be aware of the biopsychosocial model of depression.
The biopsychosocial model (abbreviated “BPS”) is a general model or approach positing that biological, psychological (which entails thoughts, emotions, and behaviors), and social (socio-economical, socio-environmental, and cultural) factors, all play a significant role in human functioning in the context of disease or illness.
Even if you look like you have it all together, if there is a biological maelstrom inside your body, you’re already behind the eight ball. A decrease in the amount of neurotransmitters that help the synapses in your brain (and keep those synapses firing on all cylinders) can be part the depression component. Studies have shown that individuals prone to depression have different brain structures or overactive portions of parts of the brain. No one can control brain structure or the amount of neurotransmitters coursing through our bodies. It’s pure biology.
There are other factors: how one deals with stress, what kind of stress the person lives with or is given, triggers for stress, how we perceive the world and even where we live. The biology of our body/brain plus the outside influences can send the average individual into a spiral. “Snapping out of it” just isn’t that simple.
Sinking
Very few people knew I was sinking. While I was isolating myself, I told everyone that I was swamped with work. (I worked from home, so it wasn’t like anyone could tell that I wasn’t.) In truth, work started piling up. I traveled often, but kept putting off trips. Phone calls weren’t returned to clients and if they really needed a response, it was via email so I wouldn’t have to talk. I didn’t want to talk to anyone.
New Year’s Eve was spent alone, after turning down a few invitations to go out and celebrate. Celebrate what? Another year of feeling miserable? It’s not like anything was going to change. Why bother? I ate leftovers and played video games online.
I felt hollowed out, like I was a pumpkin carved and discarded. Things that once brought joy brought nothing. No emotion. Apathy. I cried myself to sleep at night. I barely ate. Even when I was forced to go out, I was the snarly, sarcastic bitch in the group of people. (There’s always one, right?) I preferred just being alone, because no one could see how lackluster I had become. Misery doesn’t love company. Misery wanted to be left alone.
That morning, I got up and made coffee, sat on the windowsill, and sobbed. I wanted to run away and if I wanted to truly do so, I could. I could just disappear. But I didn’t have anywhere to run to. And I would still be miserable.
Dancing with Depression
I made a phone call and within two hours, I was sitting in a psychiatrist’s office with a prescription in my hand and a diagnosis of “severe” depression. Over the next few months, that office became a refuge and a place to share my thoughts about my life and my future.
Diabetes was discussed in depth: the suffocation I felt when I thought about living with this disease for the rest of my life, the damage that I had done with diabulimia, how I felt that I could never settle down with someone because I didn’t want to burden him, and the day to day grind with a chronic illness. We talked about how diabetes and depression were often intertwined (for the reasons mentioned above). We talked about how I needed to find some peace with the war I was waging with my diabetes.
Cognitive behavioral therapy is often used to help those with depression in conjunction with medications. The first antidepressant that the psychiatrist prescribed caused night sweats, nightmares, and paranoia… so I was quickly switched to another popular one: Prozac. (It is found that those with eating disorders should shy away from Prozac, as it suppresses appetite. I’m no longer on it…)
I slowly stopped sinking and stopped looking for the nearest exit from a room to get away. I began talking to people and clients again and one day, I laughed, startling myself. I hadn’t laughed spontaneously in months. My life wasn’t better, but it was sucking less.
But the dance with depression wasn’t over. I made a very big mistake. I eventually felt so good and so even keel that I decided I didn’t need to take the antidepressants anymore.
I tapered off the medication that had kept me buoyant while I moved several states away. I sold most of my possessions and decided that I would start anew with a fresh attitude, accepting an offer to move into my parents’ home in Florida to soak up sunshine and continue my career. My parents were traveling all summer, so I had the house to myself.
Perfect. New job, new acquaintances, new life… same old me.
Deeper Than Before
Unlike last time, I was interacting with people and going out. I was gregarious and downright charming. I was dating and making friends.
And then I just collapsed internally.
On a sweltering day in late August, I stood in a fashionable business suit in the middle of downtown and called my father on his cell phone.
“Help.”
That was pretty much all I could get out before I began to quietly sob. The conversation was quick and my father made me promise that my next call would be to a psychiatrist for an emergency session.
He flew home from his vacation the next day. I only left the house to go to the doctor for a few weeks. I took a medical leave of absence from the new job I hated and never went back. After I began feeling emotionally better and the medication finally kicked in, the real work began.
It Never Ends
The real work is this: an understanding that some people have one or two depressive episodes in life, others never get clinically depressed, and others (like me) have dysthymia/ persistent depressive disorder which is the medical term for “chronic depression”.
It’s quite popular amongst those with a chronic health condition. (Thanks, Harvard, for giving me this great quote and link to the research.)
At least three-quarters of patients with dysthymia also have a chronic physical illness or another psychiatric disorder such as one of the anxiety disorders, drug addiction, or alcoholism.
For people like me, understanding that I am more susceptible to depression due to a chronic illness - or biology - neither of which I can run away from, actually helps. Spending time with therapists who understand the weight of living with a chronic illness and working through cognitive behavioral therapy (CBT) techniques has made a difference. A book I recommend, if you’re interested in CBT is The Feeling Good Handbook. It’s pretty amazing and the workbook aspect of it really helps to make the exercises customized just for you.
And antidepressants? Yes. Please. After a few misses, I have found a drug combination that works wonderfully. Just like I take insulin daily for diabetes, which is a chronic illness, I take antidepressants daily for the other chronic illness. I’ll take them both daily for the rest of my life.
Just like diabetes, I have my sucky days, even with medication. They don’t last long and they’re not soul crushing like before. I talk about what makes me frustrated or depressed with those close to me and it helps. If I feel like I need to seek professional help, I go. It’s hard to take the first step, but it’s worth it.
Invisible
I’ve had times in my life that I didn’t want to share my diabetes diagnosis. I look fine, so why bring it up, right? Keep diabetes invisible and no one is the wiser. Except that doesn’t work.
No one seems to want to talk about a depression diagnosis, as if talking about it makes you seem weaker. Keep depression invisible and no one will think you are weak. That doesn’t work either.
We don’t talk about depression mixed with diabetes enough. The community is only now beginning to understand that living day-to-day feeling frustrated and sad and angry and despondent is part of diabetes that contributes to depression. This month is Mental Health Month and people with diabetes have opened up about the fight to stay healthy - body and mind. There are some wonderful posts about “diapression”, which is the term that has been coined to connote diabetes and depression. I urge you to review the Diabetes Advocates page on depression and diabetes for these posts and resources.
It took me almost the entire month to get up the guts to think about how these two chronic illnesses have made an impact on my life. Thanks to Scott Strange of Strangely Diabetic for reminding me that we all need to talk about this.
If You Have Diabetes and Feel Depressed
Do you have the symptoms of depression, like the ones I mentioned above? If you do, breathe, then pick up the phone and call someone who you trust. Tell them about how you feel.
It’s OK to ask for help. You will be OK. There are ways to treat this and you just need to take the first step. (Let me know if you can’t tell anyone. Send me a message at the perfectd [at] gmail.com and I’ll get you to the resources. You should never, ever feel alone.)
* After posting this, a few comments made me realize that I never clarified that the major depressive episodes I’ve had were almost twenty years ago. They make them no less relevant for me - or you - today.
But for those who expressed their worries… I’m good now and have been for quite a while. Antidepressants and good therapists keep me sane. So does the DOC.
And the bitchy moments I have? Can’t blame that on anything but my personality these days. Turns out you can be happy AND bitchy. You say bitchy like it’s a bad thing. :)
Fab Five Fridays: “Happy” Edition
I’d like to thank Pharrell Williams for that infectious little ditty stuck in my daughter’s head.
“Happy.”
Whenever she hears that song, the dancing must commence.
No matter what you might be doing, just drop it.
Grab a hand, jump up and down, and wiggle wiggle wiggle.
These are the instructions The Kid gives to me, drill-instructor style, while grinning and giggling.
She makes me happy. Just like these five things you should know about:
1. The Diabetes Technology Society announced the DTS Surveillance Program for Cleared Blood Glucose Monitors.
How important is this?
Wicked.
Epic.
For those of us who wonder if the number on our blood glucose meter is accurate, it’s a majorly huge thing. Once a blood glucose meter is released to the consumer after approval by the FDA, there is no way to find out if these meters are… accurate. This is the post-market surveillance program that Strip Safely and advocates of meter and strip accuracy have been wanting (and the FDA, too!) - it’s coming!
“This surveillance program will provide a significant benefit to both patients and manufacturers,” says David Klonoff, M.D., founder of Diabetes Technology Society and Clinical Professor of Medicine at University of California, San Francisco. “Patients will benefit by having access to more accurate meters on the market and manufacturers committed to delivering accurate products will now have an opportunity to back up claims about quality and accuracy with proof from this independent, third-party testing program.”
Abbott Diabetes Care is already committed to supporting this program and other major manufacturers will be signing on, of that I’m sure. Manufacturers who do not pass the accuracy guidelines at this point will still be allowed to sell in the U.S. market, but I foresee these accuracy reports becoming important in the future as the FDA looks closely at how to ensure our safety with the help of the DTS. Huzzah!
2. The 2014 Diabetes Mine Patient Voices Contest is waiting for YOU.
From the DiabetesMine website:
The 10 top entrants were selected to receive an “e-Patient Scholarship” to attend the DiabetesMine Innovation Summit that takes place annually at Stanford University in Palo Alto, CA. Each year, our winners act as “delegates” for the patient community, expressing our needs and desires to the Powers That Be: decision-makers in pharma, healthcare, technology design, medical device regulation, software and app development, national advocacy groups and more.
This year, the DiabetesMine Innovation Summit will be held on November 10, 2014. Your entry is a product review video for the DiabetesMine Test Kitchen - and it needs to be in by June 19, 2014.
As a 2013 Patient Voices scholarship recipient, I say this:
The DiabetesMine Innovation Summit was a watershed experience for me. The passion of those attending from various communities: medical device, pharma, clinicians, developers, investors, insurance, and patient advocates was electric and infectious. All of us arrived wanting to share how we could work together to make life with diabetes easier using technology. We left with new ideas and a better understanding of what we need to do to make that happen.
If you have the opportunity to attend, do not pass it up. And this is your opportunity to attend this invitation only event!
3. Sweet! Advantame - the newest artificial sweetener to be approved by FDA on May 19, 2014.
For those of us who are stuck with limited choices for artificial sweeteners, here comes Advantame. It’s super concentrated sweet, but here’s the scoop from the FDA’s site:
Advantame is chemically related to aspartame, and certain individuals should avoid or restrict the use of aspartame. To that end, FDA evaluated whether the same individuals should avoid or restrict advantame, as well.
People who have phenylketonuria (PKU), a rare genetic disorder, have a difficult time metabolizing phenylalanine, a component of both aspartame and advantame. Newborns are tested for PKU using a common “heel-prick” test before they leave the hospital.
Foods containing aspartame must bear an information statement for people with PKU alerting them about the presence of phenylalanine. But advantame is much sweeter than aspartame, so only a very small amount needs to be used to reach the same level of sweetness. As a result, foods containing advantame do not need to bear that statement.
So, heads up - it’s chemically related to aspartame (Nutrasweet). I’m a sucralose (Splenda) chick when I use artificial sweetener (I buy Diet Coke with Splenda in can form, and have been known to bring my own 12 packs everywhere…). I try to avoid aspartame, so this new sweetener will be interesting to watch from a marketing perspective.
4. Speaking of Sweet!, I’m over at A Sweet Life, too.
I recently wrote an article about guilt and food and diabetes. See them all traipsing off into the sunset together? That’s what I’m talking about. (Spoiler: They don’t traipse off well.)
There are some stupendous articles written by some of my favorite peeps… and I’m happy to have been asked to add my voice over there. Pop on over and check the site out!
5. Diabetes Hands Foundation has got you in mind: MasterLab for Diabetes Advocates on July 2nd in Orlando.
Want to be a champion for effective diabetes policy? You’re in luck. The Diabetes Foundation will host the very first MasterLab, July 2, 2020 at Marriott’s Orlando World Center in Orlando, Florida! We are excited to offer the first of its kind, action to amplify diabetes advocacy. If you don’t have a background in diabetes advocacy, that’s ok! No previous experience needed.
I never thought I would be an advocate for diabetes. Hell, I never thought I’d be an advocate for anything. It’s funny how life brings you to new places.
I’ve learned a lot since I made the decision to speak up for myself, but I still have a long way to go… and I’m thrilled that this is happening.
Please seriously consider joining us.. Learn more and register here…
And a bonus Fab Friday Happy, because I’m deliriously happy about this…
Register for The Diabetes UnConference. We don’t want to miss you while we’re there, talking about the things that are important to us - people with diabetes.
Come on, it’s Vegas. 
Now go wiggle, wiggle, wiggle. Make yourself have a happy day.
It Ends With Us
It ends with us.
Whether you physically sat in the room at the Diabetes Advocates Forum or joined us there in spirit, I tell you now. It ends with us.
We will be the ones to end the feelings of frustration with diabetes, the barriers to affordable access, the misconceptions of this disease, and in the future, the disease itself. However long it takes, whatever needs to be done, it ends with us.
After two days of intense, emotionally-charged meetings between key members of the Medtronic Diabetes team and invited diabetes advocates, this phrase is what remains in my head.
It ends with us.
Bold statement, you say. Brash statement, you say.
About time, I say.
I understood before the meetings began that we would be discussing the new Medtronic Minimed 530g with Enlite and discussing diabetes advocacy, but beyond that, no clue. I knew that Medtronic Diabetes and Bayer HealthCare had selected members of the diabetes online community (DOC) regardless of insulin delivery system and CGM choice. (You heard Dexcoms and different beeps and boops going off throughout the sessions. Ahh, the sultry song of diabetes.)
Those who attend as well as those who don’t often wonder why these individuals were chosen to represent the diabetes contingency. (I see the questions on Twitter and the comments on blogs and other social media portals.) I still don’t have an answer on that, but we all had one thing in common: passion.
And that passion wasn’t just coming from the advocates. It came from almost every person I encountered with a role at Medtronic Diabetes. They do want to know what we think, not just about their products and how they present them (and we didn’t disappoint in our answers, believe me), but about how they can help. Not air quotes help, but real how-can-we-use-our-voice-to-help.
Not once did they try to sell us something. Not a product or a line or lip service. The Medtronic Diabetes representatives were frank and forthright, matching the honesty of the attendees. I heard apologies for missteps and long waits for better CGM sensors for their products. I heard requests for better ways to communicate. I heard agreement towards greater participation with advocates to reach goals.
There was laughter. And tears. And a lot of beeps. We all scribbled on notepads and tapped on smartphones and laptops. Sessions occurred in which decisions about future advocacy initiatives were identified and visions questioned for clarity. Some of my moments of ah-ha! came not in the meeting, but in sidebar conversations. Advocacy happens everywhere.
I’ll get to the nitty-gritty of what happened in later posts, but I flew home with that feeling in my gut that burns deep.
It ends with us. All of us. Not just advocates, but everyone who is passionate about ending. That includes Big Pharma and device manufacturers and government. Us. There is no longer a “them”.
And in order for it to end with us, it has to begin with us.
Get ready, because…
It ends with us.
My Heart Is Full…
Do you know the cartoonist, Gary Larson? He’s the guy who does The Far Side®.
My life has been a series of Gary Larson panels. Growing up, I was known as “Ginger Ginger” by my parents. (Due to copyright issues, I refuse to illegally post the panel, but if you google Gary Larson and “Ginger Ginger”, it describes me and any other teenager.) But this isn’t about that cartoon. (Or the one about Midvale School for the Gifted. Or the one I swore was just for me as a languages major…)
It’s about this cartoon where a kid asks to be excused… except in my case, it’s my heart.
I just got back from the Children With Diabetes Friends for Life Conference and I’m suffering simultaneously from withdrawal and overload. The people I met, the things I learned, the emotions that I experienced… it will take a few days to fully process into actual coherent words, but when it does… you have been warned.
Thanks to Diabetes Advocates and the Diabetes Hands Foundation‘s scholarship, the connections I made and the mindset I’ve been in will last until… the next CWD FFL Conference (July 2-6, 2104 in Orlando). The path I’ve walked on for the past thirty years with diabetes will be taking a new direction, so buckle up and come along with me.
Once I can stop being one hitching breath away from a full blown crying jag (which I’m sure will come, but not out of sadness…), I’ll talk about Dr. Ed Damiano’s AP project, about meeting Richard Vaughn, about the feeling of “getting it”, about telling someone that “I’m still alive”, about the FDA and talking to them about the Strip Safely campaign, about the moments that right now are still raw…
But in the meantime, my heart is full.
And it will be like that for a while.
And I’m happy with that.
