And Then….

It always seems there is that added “And Then” with diabetes: You change your site, and then it leaks, you bolus for your food and then half way though you are full, your Dexcom beeps and then you drink juice, your Dexcom beeps and then you take a correction, and that list can go on and on.  It weaves it way in and out of your day and then into the night. And then, there are times in your life, diabetes seems to be full of wanting attention.

It weighs heavy on you. You loathe the sound of Dexcom. You hate hearing the beeps of the pump and the meter. Beeeeep. It needs a battery.  Beeeep. It needs a reading.  Beeeeep. Beeeep. Beeeep.  You are low. Beeeep. Your pump reservoir is low.  And then Beeep Beeep.  You are high.  All within a span of an hour. And then you bump into the door jam ripping out your Dexcom site.

And then, you ponder of all “and then” moments as you change your site a day early and you realize how lucky you are. Lucky to live in a time where all this technology is truly a blessing. Lucky to access to such technology many cannot afford nor have insurance that covers a good part of it. And then, you are humbled.

Do You Still Love Me?

The following blog was inspired by an innocent question of a eight year old boy to his mother, who I love both to the moon and back.

Sometimes we, with a chronic illness, can only see how we impact those we love and cannot see past our guilt. And sometimes we need to be reminded we are worth way more than our broken parts and we are worth the unconditional love of those we love.  

There once was a  young one with diabetes who once sighed

As he said to his mother with sad eyes:

Do you still love me even though I have diabetes?

Do you still love me when I am so low and shaky?

Do you still love me when I have to stop what we are doing, and wait for my glucose number to rise?

Do you still love me when I miscalculate the carbs and go high?

Do you still love me when I miscalculate the carbs and go low?

Do you still love me when I have to drink all the water and to the bathroom I go?

Do you still love me when I forget to bolus?

Do you still love me when I cannot focus?

Do you still love me when you wake up in the night because Dex is screaming for attention?

Do you still love me when I am high and I cannot control my emotions?

Do you still love me when I have to call my day short and rest my tired body?

Do you still love me? Do you still love me my dearest mommy?

The mother pulled the young one to her and hugged him close to her heart

And with all the love she had, she then remarked:

Of course silly little one, my dearest little ball of fun.

I will always and forever love you my dear little one.

I would love you even if you had three noses.

I would love  you even if you had no toe-zees.

I would love you even if you were bald.

I would love you if you could not throw a ball.

I will always love you just the way you are

I will always love you my little star

For you are the perfect little one for daddy and me,

And you will always be loved with or without diabetes.

The Death of the Green Bracelet

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And then it happen. My green bracelet had officially died one month after putting it on my wrist. As I carefully placed it in a box, the rush of that week from Friends For Life flooded my heart and soul. A smile crept across my face as I thought of all those who I had meet and the impact they will have on my life and my attitude. Friendships were bonded this year, and I know now I have created some lifelong bonds that will be hard to break.

If you have never been to a diabetes conference, I do highly recommend it. I encourage you to reach and connect with those around you at any conference. Finding your tribe is a powerful resource. A powerful resource that I wish I would have found sooner.

The main reason why I wanted to go this year was Masterlab. Diabetes Hands Foundation puts on amazing day of advocate ideas, speakers and training session of some of top advocates from around the country. To be in a room full of passionate people who are making a difference is inspiring. Being able to connect to these people and have them as a resource is an invaluable tool in the world of advocacy.

Then there were the people which I connected with during the conference. Moira, who continues to inspire me and others in making a difference. Kerri, who has a way of writing and connecting with others. Scott, who has a knack of connecting others and a love of ketchup, grill cheeses, and diet cokes that matches mine. Kelly, who is an amazing advocate. Rick, who I met before, but his quirky sense of humor makes me smile…always. Karen and her husband Pete, who I was friends with over the internet and was so pleased to meet them in person. Mike L., who I have always admire from afar. Will, whose Sunday’s article always has me pondering and smiling. Nia, whose quiet way about her warms my heart. Cara, whose southern ways matches mine. Becky, who traveled from England to be here was simply a joy to be around. Kim, whose struggles with complications are real but her attitude is far more impressive. Ernesto, who in 15 minutes I realized how cool he really was and immediately admired his strength and determination.  And many others…

There was also the nightscout crew who I connected with as well. I am in awe of their work and their passion in paying it forward. James, Wes, and Ben were all at the conference and are part of the driving force behind the project. There was also the most funniest and wittiness of the group of women who are sensational at programming: Christina, Julie, and Kate. All who can out wit and make you laugh until you have tears in your eyes.  (I should also mention that Julie’s two children are adorable.)

And then there was a new friend made, Phyllis. I sat beside her during Masterlab.  Those of you who know me, know I cannot sit still for a very long time. Poor Phyllis, and poor Mike B, who was on the other side of me (who incidentally has a heart of gold). Luckily, Phyllis and I hit it off immediately and were both tweeting and sharing thoughts. By 2 pm, my attention span had been shot and my #Squirrel moments had invaded Phyllis’s attentiveness. I am sometimes not the best of influence.  Mike B had labeled us #badvocates. (But truthfully, the things I walked away with from that nine hour experience has help me see the path of advocacy clearer.) Phyllis and I meet up every chance we got that week and sometimes that got us in trouble. Sometimes, a lot of trouble. Just ask those mentioned above. #drinkyourjuice #prosecco #sitdown #stonerbrownieswithscale #notGF #drinkyourjuiceNOW

But the highlight of my week was getting to see Jack daily and his gift of a hug at every encounter.  Jack is a seven year old who has Type 1 before he could walk. He lives fairly close to me, but time does not let me see him as much as I would like to. His smile is contagious and his attitude is something I pray for daily that he will maintain throughout his life. We got to hang out together several times. I let him test my blood glucose and work my pump for me, letting him focus on me instead of himself. I played silly games with him just to hear his laughter. His parents are just as amazing. They recognize his need to own his disease, but not let it run his life. They are truly trying to raise a responsible young man with compassion who just happens to have Type 1 Diabetes. And I admire them more than they will ever know.

And that my friends, is what Friends for Life Conference is about. It is about making connections with those who are just like you. It is about making those who live with diabetes day in and day out realize they are capable of chasing their dreams. It is about letting us meet people who have the same chronic illness as we have and who have achieved their dreams. It gives us the power of our voice to advocate toward better treatments (hello artificial pancreas) and the understanding that we can do things as long as we are given the opportunity to care for ourself first. It is about giving us the tools and resources to achieve our goals in self care. It is about letting us voice things that we do NOT share with others…including our fears for the future. It is about acknowledging that we all work hard at taking care of ourself to the best of our ability and understanding that sometimes we need encouragement. Friends for Life is about making friends for life that truly get it.

Words Matter

FullSizeRender (2)There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

 

Words matter.  It is a life learned lesson that we teach our children at a young age. Even Thumper, from Disney’s movie Bambi, reminds us with his famous quote, “If you can’t say something nice, then don’t say anything at all.” But over time and the anonymity of social media, we often forget that phrase. My life has introduced me to teaching kindergarten, to politics, to marketing, to owning my own business, and back to raising a family. Words matter in all of these endeavors. Perhaps more in some areas than in others.

In politics, the art of word crafting is all about “framing the debate”- what is it you want to change or what is it your want to redefine? It is here that sometime I believe we, as the Diabetes Online Community (DOC), could impact policies and public perception the most.
One of the perception of the public about Type 1 and Type 2 diabetes are the misconceptions about “sugar” and how we manage them.  THERE…that word….SUGAR.  If we want to redefine the debate around “sugar” and the perception of how “sugar” causes diabetes, shouldn’t we use the right terms in our discussions?

Diabetes is hard enough without all the misconceptions. But the reality is those misconceptions started from the medical field in its attempt to find out more about our disease. In the early years of our disease being discovered, often doctors would set out our urine in a field of ants and see if they would drink our urine, which if the ants drank, then we were overspilling glucose. Some doctors even referred to this as “The Sugars.” Here in the deep south of the United States, I still hear people refer to diabetes as “The Sugars.”

We claim to check our “sugar’  when referring to checking our glucose levels in our meters. We are guilty of telling people our sugar is too high, or our sugar is too low. It is not a wonder why people are confused about sugar and diabetes. I can see how the connection to sugar for the general public has been establish as a caused of diabetes. And it is my opinion we add fuel to that misconception by the words we used.

What if we took out the word sugar when we are discussing diabetes and replace it with glucose?   Sugar is an ingredient in recipes, it is an endearing term for your better half, and people tend to like it in their coffee…or here in the south, tea. I prefer not to have sugar in my discussions about my disease.

Words Matters.  And how we use them to reflect what we say is important. We have the power to drive the discussion. It is all about how we open the dialog and frame the discussion and it starts with us-those impacted by our disease the  most.

 

 

Curve Balls

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We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

YOU CAN DO IT!  Sometimes when dealing with the frustration that comes with silly numbers that are not in within that narrow little passage doomed “in range,” you need a cheerleader.  The point you need a cheerleader in your frustration will vary from person to person, as much as our diabetes varies from person to person. It usually takes a lot for me to get to that point. I tend to be pretty happy go lucky.

I am very fortunate. I now have three options to disclose my frustrations with my Type 1 diabetes (T1). In the past three years, I have come in contact with several people in the Diabetic Online Community (DOC) in which I frequently will vent/rant to. In this safe environment of a six person group chat, I know I can literally discuss anything and rant about what is really bothering me. (#targetlowsarereal) In addition, I have a close friend that will let me just unload my frustration. Although he has no connection to diabetes, he certainly has an empathic ear and he will let me just vent. Just voicing those frustrations can be very liberating. If you have not tired it in a safe non-judgement environment, I highly encourage you to seek your own little group.

Lastly, there is my husband, my dear love of my life. I tend not to vent too much to him about this stupid part of my life. I know he worries. I know he is concern. I catch him pulling my continuos glucose monitor (CGM) numbers up on his phone. I hear him click Dexcom’s middle button in the middle of night. I see him glancing when I test. But on really bad days-those days where my numbers are being particular stubborn-those are the days I turn to him.  Those are the days, I will simple tell him my day is done. His simple words of I understand and his reassuring words of it will be okay are all I need to hear. He is after all, my biggest cheerleader.

Mentally, this disease can turn major tricks in your mind. It is relentless, time consuming and a balancing act of trying to stay within the lines of a very narrow parameter.  It never stops. Even when your parents use to take care of you, you still felt the impacts of lows and highs. It does not take a rocket scientist to figure out that all of us at some point and time will simple burn out because of the many steps in the day it takes for us to be safe in range…day after day, week after week, year after year, decade after decade. Not to mention to stay within that range is almost impossible. Sharing your frustration with someone can have a huge impact on your mental health well being. Again, I highly encourage it.

But, the best advice I ever got came from individual from TuDiabetes chat room. I don’t even remember what we were discussing. His elegant words came across the screen and it hit me hard. “It is not your fault. Nothing about diabetes is….EVER.”  And you know what? He is right. No matter which type you have.

Most of us feel a mental sting when we start thinking about our numbers. You know, that silly little number that pops up on a glucose test. That number we all tend to focus on. Here is a secret: It is just a number. A number that tells you what to do so you can make your best effort to stay within the narrow strip of “in range.” There are no “good” numbers. There are no “bad” numbers.  It simple tells you if you need more insulin, more carbs, or status quo. As hard as it is, try your best not to judge that number. Although I admit, when that number pops up at 100, I feel like I just ace a test! All those years in school have impacted me.

It is not your fault and you can do it. Empowering words. I wish we all could hear those word in our head whenever diabetes throws you a curve ball. I wish we could all know that we are incredible bad@$&es when it comes in dealing with everything diabetes throws us, no matter what type of diabetes you have and no matter what number pops up on that little meter.

 

 

Hope in a Community

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Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you,Heather Gabel, for this topic suggestion.)

I am new to the blog world and a little scared to share my thoughts on such intimate feelings about my chronic illness, otherwise known as Type 1 Diabetes(T1D). For years I was alone in my journey. Seriously…alone.  In 2013, I was on a quest to find more information about an insulin pump. After 20 years of Multiple Daily Injections (MDI), I was about to embark on pumping. It was such a confusing time. I was face with the decision of deciding which pump I would choose to be attached to 24 hours a day.

It was there, on the computer, I found a jewel of community called TuDiabetes. WHOA….there are people who do this every day …just like me.  WHOA….there are people who understand the frustrations that often results from this disease. WHOA…did you know this community has been around for over ten years?  HOLY COW….I can ask you about your experiences and how you handled this situation?  WOW…my diabetes vary from yours?  GRRRRR….you “get” that I am having a bad day. WHOOOO HOOO…someone is happy for me because I remand in range all day and they understand what a rare unicorn that is.

It is within this community called the Diabetic Online Community (DOC) where the message of “You are not alone” is loud and clear. And that message can be powerful in a world where once one felt alone, and in that discovery comes hope.

Hope is where the DOC stands at its strongest. Together, we are advocating. Together, we are fighting Medicare for the coverage of Continuous Glucose Monitors (CGMs) for those of over 65 and who are not just T1 but Type 2 (T2), and for those of us who will one day be over 65. Together, we are hacking diabetes devices to improve them and make them do what we want to do simple because we are not waiting. Together, we often offer encouraging words with those who need it. We are talking about the depression and burnout that often happens with chronic diseases that require 24/7/365 monitoring and treating. We are educating each other and exploring the upcoming new developments in the realm of our disease. More and more of us are participating in clinical trails for both T1 and T2. And together we are raising funds to help find a cure so that one day Type 1 will become Type None.  (I firmly believe that if a cure is develop for one, the other type cure will not be far behind.)

You are NOT alone and there is HOPE.  Those are mighty powerful words. And I am proud to be a part of the community who delivers that message every single day.

 

 

 

 

A Moment Frozen

A Moment Frozen

This is one of the first blogs I wrote for TuDiabetes back in August 2014.  It still resonates within me and the moment is still etched in my mind.

You know those moments in life that freeze, and it seems like everyone in the room is frozen but you. Time just shuts down, and you are stuck in slow motion. I have had that experience a couple of times. Most of them involve a traumatic injury. But this did not, and frankly shocked me.

My husband really does not say much about me having diabetes. In fact, I thought he really didn’t even seem to understand much about it all. Which was fine by me. But this has all started to change when I finally starting pumping last year after 19 years of multiple daily shots (MDI). He has started to ask more questions, and I was really surprise by the knowledge he does have.

As some of you know, I recently found my voice as an advocate last year. With my health insurance woes, I have been busy fighting for coverage for all who have diabetes and have the State Health Benefit Plan (SHBP) for the State of Georgia. I have even meet with the Director of Community Health about the lack transparency of diabetes coverage. The biggest score on this whole mess was a meeting with Blue Cross/ Blue Shield of Ga Vice President, head of their Nursing Program, and the head of their Health Coach Program, who managed the SHBP.

It was in this meeting that time stood still. I normally do not involve my husband in such things. But for some reason, I asked him to tag along. Which ended up being a good thing, because the VP and my husband knew each other, but had not seen each other in seven years. Once they recognize each other, it put the whole room at ease.

We were talking about how blood glucose numbers should not be a judgment. That it is just a number that tells you what your treatment options are. I started to talk about the lows….now my husband, who had not said a word since the small talk…and we were an hour into this meeting…. spoke up.

And time stop. I have never heard him utter one word about his feelings about me having diabetes and the impact on him. While I had always wondered about his thoughts, I had never taken the opportunity to really discussed it with him. Mostly because I was so bent on hiding it. And there, in this meeting, is where he decided to share his emotional distress over me – the worries of me not waking up in the morning, the worries of me driving, the worries he had when the kids were little, and the worries from hospitalizations of DKA from the result of food poisoning, not once but twice. The impact of the years that I had struggled with low blood glucose levels and high blood glucose levels had taken its toll on him. And I sat there in awe…not realizing how much it had impacted him.

I am sure there was an awkward pause when he finish. I was so taken aback, that I forgot where we were. As I wiped the tears away, I looked at the VP sitting there, and wondered if he would get how frustrating it was not to get the supplies you need. I wondered what his thoughts would be if his love ones were denied test strips and insulin. I wondered how he would feel about talking to a health coach once a month, who has never seen an insulin pump or didn’t even know what a CGM was. I wondered if he got the big picture. I wondered how he would feel if it was his wife in my shoes..or his children.

I then looked back at my husband, who smiled lovingly at me. I reached under the table and grab his hand. The meeting that was supposed to be about the fight for affordable healthcare choices for the 650,000 state employees had morphed into one of the most emotional endearing moment of my life. And it will forever be a moment frozen in time.