hope

May Day Reflection

Sunday night I was running behind schedule. I was scrambling to finish laundry, pack, gather my diabetes supplies, and get everything together for a last minute business trip to New York. Then my phone chirped with a text message: “Turn on the news.”

I knew that I was traveling the next morning, and given the news I expected elevated security at the airport, so I stayed up late and evaluated everything that I had packed to try and limit any security issues I might have with all my diabetes accoutrements. So focused on the business of travel, I didn’t have time to get online and look at Twitter or Facebook until right before I stretched out with my cat in bed for a couple hours of sleep before getting up to go to the airport.

I was encouraged and comforted by some of the short status posts and tweets about the event. Many were hopeful for peace, for healing, and for the closing of a terrible chapter in our lives and nation’s history. At the same time, I saw many negative and passive-aggressive remarks that came across as almost a jubilation of hatred, and made my heart hurt for those lost. After Sunday night, I decided to let Facebook go for a few days. I honestly couldn’t handle the hatred and celebration of death that was overwhelming my news feed and inciting arguments, both amongst my friends and within myself.

I believe that things happen for a reason. I have faith, and allow myself to trust sometimes even when I cannot see the bigger picture of things. I had no plans of going to New York prior to a week ago, but then I got a call for a meeting and packed my bags, never imagining that I would be in the city 12 hours after news that the world had been waiting to hear for nearly a decade.

After my plane landed on Monday morning, I took a cab to my hotel, dropped off my bags, and made my way to Lower Manhattan and Ground Zero. I stood next to people who were cheering and waving American flags, and observed their transitions from previously defeated to recently victorious. I stood quietly next to people who were praying, remembering, and would always have a hole in their soul from what was taken from them one terrible Tuesday morning. I walked through St. Paul’s Chapel, and through the cemetery behind it nearest Ground Zero, imagining the many resting souls there who had shepherded to the other side those that had lost their way on September 11, 2001, just out of human sight.

It occurred to me that no matter what the news of the day was, the history and loss was still there and present. The death of a single terrorist while I was standing amid the headstones in a graveyard with a front row seat to the tragedy of 9/11 had as much effect on me as a cure for diabetes for those that have already been lost to the disease. That is to say, it didn’t really change much.

There are men and women from all different nationalities fighting for a better world right now, who are leaders, soldiers, and heralds of change, who realize that the reality of terrorism and injustice may always exist, but believe that it doesn’t have to keep anyone from the opportunity to achieve their dreams. The goal is to one day eliminate terror and violence from this world, but even if that never happens, they will at least have made positive changes in the quality of life for so many.

As a diabetes advocate, I am one of many fighting for a better world also, where the reality of diabetes may always exist, but it doesn’t have to keep anyone from achieving their dreams. Our goal is to one day eliminate diabetes from this world, but even if that never happens, we will at least make positive changes in the quality of life for those living with the disease.

In addition to a productive meeting and an enjoyable time with friends from all over the city, I wonder if that realization and appreciation might be the real reason that I was meant to be in New York on the day that I was.

The Cross at Ground Zero

The Cross at Ground Zero

Hugs (photo by Joshua Ommen)

Into Me See

The term “intimacy” is something usually reserved for romantic situations, emotions and secrets best shared in the dark, by candlelight, maybe with Barry White or Marvin Gaye lending their vocal stylings to the mood, and cookies on the nightstand…you know, just in case of a low. However, when I give myself a chance to examine what and why I share about my life with diabetes, I realize that “intimacy” is the perfect word for it.

HAWMC - Day 6

The #HAWMC blog post challenge for today asks bloggers to reflect on “why you write about your health.” I write to advocate for people with diabetes, for better treatments, and increased awareness. I write to encourage, to show that a positive outlook and an amazing life is still possible even with a death defying disease.

As much passion as I have for other PWD’s living their lives to the absolute fullest, I also write for me. For 28 years I lived my life quietly with diabetes, only really broadcasting it in very close circles of friends and family. Many people who knew me my entire life never knew that I had diabetes.

For the most part with my diabetes, I kept the intricacies of what I feel, experience, get frustrated with, and celebrate to myself. Several years ago while on a bike ride I got the idea for Diabetically Speaking, but it never really got the support to grow much bigger than just an idea; or maybe I was the one that didn’t get the support. Last year, with the encouragement from A-Flizzle and maybe my own desire to finally accept my life with diabetes, I broke through my diabetic wall. I couldn’t take being alone with it anymore. I needed to let my world with diabetes out of the box, out of its cage, out of the proverbial diabetes closet.

I began by following other people with diabetes on Twitter. That was the first time in my life that I really started interacting and sharing intimate details of my life with other people who deal with the same things that I do every single day, who understand how it feels, and know what I really mean when I say, “I’m high” or “I’m low.” The Diabetes Online Community (DOC) helped me find my diabetic voice, and has helped me to stand up for myself and for others with diabetes.

Diabetes is an invisible illness. You may see an insulin pump or a blood test kit, but you don’t see what the person actually lives with. You don’t feel what the person actually lives with.

I write to share my life…OUR LIFE…with diabetes. Our needle pricks. Our nights waking up having sweat through our clothes because of a low. Our embarrassment of having wet a bed while sleeping over at a friends’ house because of a high blood sugar. Our guilt from the burdens we unfairly must place on our friends and families. Our heartbreak at hearing our children say they wish diabetes had never happened to them. Our wishing diabetes had never happened to us.

I write to share my life…OUR LIFE…with diabetes. Our time together at diabetes camp. Our excitement when we hear another insulin pump beep in the wild. Our ability to make a joke at the expense of diabetes. Our incredible diabetes community. Our hopes. Our celebrations when we overcome the challenges that are thrown our way.

I write because OUR diabetes is best managed with the strength of a community behind it.

Photo by Joshua Ommen

Photo by Joshua Ommen

Cinnamon Sticks. Photo courtesy of D Sharon Pruitt, PinkStock Photos.

No Cure For Stupid

I see headlines from time to time touting various ways to “reverse your diabetes” and “cure your diabetes once and for all.” I’m not of the “diabetes is a temporary situation” camp. For Type 2 diabetics, symptoms may subside and you may be able to get off your medications at some point (such as once you lose weight, or adjust your diet and exercise regimen), but your pancreas and insulin producing mechanics never function quite up to normal specs like they used to. Yes, I’m even talking to you Halle Berry and Drew Carey. For Type 1’s, let’s just face it, thinking you can wean yourself off of insulin is effective suicide.

HAWMC - Day 4

Today’s #HAWMC blog post challenge asks health activists to focus on a “ludicrous headline or cure about your condition.” The intent seems to be for folks to share the ridiculous “cures” for our conditions, laugh, and write a lighthearted post about it. Instead, the more research I did for this post, the more angry I got.

We all dream of a cure, whether we have diabetes, cancer, or foot-in-mouth disorder, and someday there may very well be one. However, we will never be able to outsmart chronic stupidity. Too many people believe everything they read. If it’s on the internet, then it must be true, right? Wrong.

One of my favorite passages of all time is by Terry Goodkind from his book Wizard’s First Rule

“People are stupid; given proper motivation, almost anyone will believe almost anything. Because people are stupid, they will believe a lie because they want to believe it’s true, or because they are afraid it might be true. People‚Äôs heads are full of knowledge, facts, and beliefs, and most of it is false, yet they think it all true. People are stupid; they can only rarely tell the difference between a lie and the truth, and yet they are confident they can, and so are all the easier to fool.”

We as people with diabetes and people with loved ones with diabetes, we all want a cure so bad that we will believe anything that anyone tells us in the off chance that maybe, by some long shot stroke of luck, it just might work. Remember being told when we were diagnosed that there would be a cure in ten years? I do, and that was 30 years ago.

Some would argue with my stance, but I believe that we will get much further in life by learning to live WITH our conditions, rather than fight acceptance of them. Don’t get it twisted, we should absolutely fight the disease or condition, but not our acceptance of it. With diabetes, we cannot possibly give it the attention it requires if we’re too busy living in denial that we have it.

Right now, today, there is no known cure for diabetes. Not for any type of diabetes. That is fact. But there are some amazing treatments, and modern medicine has come a long way in helping those of us with diabetes to live healthy, productive, and amazing lives with the disease. I overcome diabetes every single day, not because I’m cured, but because I refuse to let it overcome me.

Now excuse me while I go mainline cinnamon

Cinnamon Sticks. Photo courtesy of D Sharon Pruitt, PinkStock Photos.

Cinnamon Sticks. Photo courtesy of D Sharon Pruitt, PinkStock Photos.

 

Photo by tyger_lyllie on Flickr

Wandering and Wondering

I needed to go for a walk a few nights ago. I didn’t have any particular destination in mind, I just needed to wander and get some air. My blood sugars weren’t low, and I wasn’t roaming incoherently. I was just regular roaming, like when you go to the mall and wander around and don’t buy anything. Just alone with my thoughts, listening to the sound of traffic, watching the passing cars, and considering everything that is going on in my world.

It’s important sometimes to just find that peaceful place you can hang out, if only for a few minutes. It’s like diabetes nirvana, where you can eat practically whatever you want and still maintain that perfect level blood sugar. For me, that’s somewhere between 80 and 120, but YDMV. You don’t have to share that place with anyone, you don’t have to fill it with distractions, you can just be, in that moment.

Right now in my day-to-day I’m swamped, so I need those peaceful moments whenever I can get them. My days are filled with phones that ring off the hook, a flood of emails, meetings, research, a lot of puzzles in the forms of invoices, budgets, reports and spreadsheets, a task list that somehow continues to get longer and longer no matter how hard I work on shortening it, and the overwhelming pressure to demonstrate leadership ability, progress, and that I have things under control. Maybe it’s the Fall season, and everyone trying to get everything wrapped up before the holidays get here and people scatter to the four corners of the world. Or maybe it’s the ghosts of deadlines passed.

Ghosts - Photo by Paul Sapiano - peasap on Flickr

In any case, when we’re so busy, the animal that is diabetes that we try to keep on a leash likes to try and show it’s ugly side. We’re teased with perfect blood sugars for hours on end, just to do a quick check before dinner to see a BG so high it would make an angel get vertigo. Yesterday afternoon for example, I lowered my basal rates for about three hours because I was too active and my BG was dropping too quickly. Perfection, until I checked a few hours later, and spiked harder than Misty May in a beach volleyball tournament.

Then there is the flip side. The activity of the days and nights catches up, and we wake up in the middle of the night plowing into the refrigerator for anything we can find to treat a low BG, including those week old leftovers that we’ll regret eating by morning. Stress and being stretched too thin results in a lot of flux in our capacitors. We’re working so hard to get to the future that the past catches up with us and knocks us flat on our DeLorean. (I also went to see Back to the Future on the big screen for its 25th Anniversary last week, which was beyond awesome!)

I don’t know what the secret is to managing and staying on top of diabetes, stress, workload, bills, relationships, and all the other responsibilities of life. I believe a lot of life is change management, and I strive with all the changes that life throws my way to make the choices that are positive and move me in the direction that I want to go. That works, most of the time, but I still stumble. Sometimes I excel in one aspect of my life just to see another suffer from lack of attention. It’s a seesaw, and one minute I’m on the ground with my feet firmly planted and everything is as it should be, then the next up up in the air with my feet dangling and trying to hold on for dear life to those things that are most important and trying not to fall off the edge.

Seesaw - Photo by tyger_lyllie - Flickr

People deal with stress and being overwhelmed in a lot of different ways. A long bike ride helps me sort things out. Sometimes I just need some quiet time to myself. I’m naturally an extrovert that draws energy from engaging with other people, but I can’t be the entertainer all the time. Sometimes I’ve got to get a little discontented so that I can find the fuel to push through obstacles. I try to find a healthy balance that favors positivity.

It’s that balance that we struggle with, in life, with diabetes…with everything. Things can’t be sunshine and daffodils all the time, but it also can’t rain all the time either. It can be hard work to climb over those obstacles that are holding you back from whatever next step you are trying to get to. It is especially hard to cut out those things that are bad habits that allow us to escape or provide a sense of security, even a false sense of security.

But it’s worth it to try, even if you don’t succeed every time. The more you try, the more success you’ll have. Nobody has ever achieved their dreams by sitting around waiting on them to come true.

With diabetes, I get aggravated when a day of low BG’s collides with a night of high BG’s that keep me up all night. I have to remember though that most days I am more in tune with my body than most people are. I have tools and technology that help me to be able to make educated decisions that keep me alive.

I save my life every single day by the decisions that I make. Can you say that? I hope you can. If not, maybe it’s time to make some changes.

Change - Photo by David Reece - Flickr

Never Give Up

It is with a very heavy heart that I write this post, and acknowledge the loss of one of our own this week.

13 year old Eilish was taken from us by Type 1 diabetes. Her parents were active members of the Children With Diabetes community, and nurtured her since she was three years old living with diabetes. Eilish, like so many of us with diabetes, was compliant, and had good control. Yet, as we all know, diabetes doesn’t always play by the rules. From what has been shared, our understanding is that Eilish was taken from us by DIB syndrome, likely due to a severe low blood sugar level during the night while she slept.

I didn’t know Eilish. I have never met her parents, or her sister Ella. It’s likely I will never know them. Yet, every one of us in and surrounding the DOC, regardless of what type diabetes we have or if we even have diabetes at all, are feeling this loss. There has been no shortage of bloggers sharing similar sentiments today (list alphabetized by blogger, because I’m a librarian, and that’s how I roll)…

Amy (@DiabetesMine) – Diabetes: The Possibilities
Cara (@cerichards21) – Just Because…
Kelly (@diabetesalic) – Crying For Them
Kerri (@sixuntilme) – Dealing with the Fear of Diabetes
Lisa (@pyxiestik) – Tempting the Fates
Michael (@MHoskins2179) – It Could Be Any Of Us
Sarah (@Sugabetic) – Heavy Hearts
Sherry (@jennaspetmonkey) – Before Another Child Is Lost

Holly (@Arnold_and_Me) over at Arnold and Me reminded me today via a Tweet that there is a time for everything. It’s good, healthy, and necessary for us to take time to mourn Eilish, remember her, and show compassion for her family. There is a time for us to be angry, which is also why I have delayed writing this post. I wanted to spit out so much venom at diabetes that this post would not have been suitable for print had I wrote it earlier.

The New Living Translation of Ecclesiastes 3:1-8 reads:

For everything there is a season,
a time for every activity under heaven.
A time to be born and a time to die.
A time to plant and a time to harvest.
A time to kill and a time to heal.
A time to tear down and a time to build up.
A time to cry and a time to laugh.
A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
A time to search and a time to quit searching.
A time to keep and a time to throw away.
A time to tear and a time to mend.
A time to be quiet and a time to speak.
A time to love and a time to hate.
A time for war and a time for peace.

Depending on where you are right now, you may identify more with some parts of that passage than others. Being a person who strives to be optimistic, I find myself trying to move toward better things, and emotions that I am more comfortable with. Despite where you place your faith and beliefs, I believe that Eilish is in a better place now. A place where she doesn’t have to be burdened by finger pricking, getting tangled up in insulin pump tubing, or any of the other anchors of diabetes, and she can now experience a dawn phenomenon like no other we can imagine.

So through this tragedy, I see hope. I see people in the DOC who are more aware of the risks of diabetes than they were yesterday. I see people who want to learn more about the research that goes into developing better treatments and one day a cure for diabetes. I am humbled by friends who have found a way to give back to the diabetes community through fundraising, charity walks, and galas. I’m excited to see everyone even more fueled now to get the word out and increase awareness on World Diabetes Day on November 14. I am encouraged to see my friends who are leaning on each other, helping each other to laugh and find joy, not letting each other get bogged down in tragedy.

That is the spirit of the DOC, and the spirit of everyone who lives with and has been touched by this disease. We may get bruised, but together we can’t be beaten. That is why I know that one day we will find a cure, because we are like the frog in the crane’s mouth…we never give up.

Never Give Up