Recently and over the years, there have been very intelligent and thoughtful written reactions to the way that people with diabetes are clinically labeled as uncontrolled, non compliant and non adherent.
I wanted to share my thoughts today.
Recently and over the years, there have been very intelligent and thoughtful written reactions to the way that people with diabetes are clinically labeled as uncontrolled, non compliant and non adherent.
I wanted to share my thoughts today.
I grew up with type 1 diabetes and so it became crucial that I get comfortable with checking my blood sugar and giving myself injections in front of other people. I would often be afraid of their reaction. Would they be disgusted? Worried? Alarmed? I have always used some discretion when handling these acts in public but I’ve also been vocal about how these acts affect me and not anyone else so I really don’t want to hear anyone complaining about it. After all I’m the one enduring the pain, right? Well, I may have been wrong.
My children are six now, but I noticed that when they were about 4, my son would stare at me when I gave my insulin shots. He would watch the needle go in and out. He’d even observe as I put the orange cap back on the syringe and zipped it back up in its case. I thought to myself, “well, he sure seems interested” and I’d answer any questions he had about what I was doing.
As he got older he would ask questions like, “mommy, does it hurt when you do that?” And I’d answer truthfully, “yes, sometimes it does, but usually it doesn’t”. He would then say something like, “I sure am glad I don’t have diabetes.” In the past year, he has winced every time I prick my finger for a blood sugar check or given an insulin shot. I also noticed that sometimes he would appear to physically shake off the image he just saw the way a parent might when envisioning a worst case scenario involving their precious child.
I have been quite accustomed to doing all these diabetes things in the same way someone else might pull their hair up into a ponytail or role up a shirt sleeve. In other words, I have grown into an adult that recognized I needed to be comfortable checking my blood sugar and giving insulin anywhere and in front of anyone for my wellbeing and so I do these things mindlessly and without the crippling worry I felt as a child or teenager. In doing so I’ve learned that most people have a lot of empathy and compassion. They are cautious if they don’t know me and if we are say, shoulder to shoulder on a plane ride, but still rather polite. I always imagined that I’d have children who wouldn’t even blink at my pricking my finger because I figured they’d be used to it.
My daughter has been an interesting comparison. She doesn’t wince or tremble or look like she is in pain for me at all. Instead, she looks away and continues what she is doing, staying just as happy-go-lucky as always. Recently, after injecting, my son said, “Mommy, it hurts me so much every time I see you do that.” I quickly rushed to his side and said, “But, I’m ok sweetie, it only hurts a little, I’m still happy and smiling and everything is ok.” Then he explained how he knows it does hurt sometimes, how he has seen the little bruises that sometimes arise, and how he hates that something painful is what keeps me alive. Such empathy! Then I was stunned when he said, “Would you please turn around when you are giving your shot so I don’t have to see?”
And I suddenly understood something I hadn’t before. Some people watch us inject or prick our finger and genuinely feel a tingle through their body thanks to a release of cortisol brought on by the stress of the great load of empathy they feel for us. Most of these people know we have to do what we do but some people are very sensitive, so much they might appreciate us having more discretion around them because they will feel our pain to some extent.
You might think of someone you don’t particularly like and not really care too much about their reaction. I get it, but we all desire compassion from others and the only way to really earn that is through reciprocal empathy. I care about you and you care about me. My son doesn’t get that stress response anymore because even in the comfort of my own home I turn around or go to a different room. When we are in close quarters I let him know what I have to do and he appreciates the warning so he can turn away. Then I say I’m done and both my kids look at me and smile.
I now extend this awareness and courtesy to others wherever I go. I bet there are less people out there with a fear of needles than those who are quite simply sensitive to another’s suffering. And who would want to make this sweet little face upset?
Just to clarify, we people with diabetes should absolutely do what we need to do, when and where we need to do it. However, life should be played by ear and there are easy little ways to spread compassion as we go. I’m not boldly defiant about my diabetes management in public–i’m calmly adamant that it’s the right thing to do. When I soften myself up and show empathy towards others, they show it right back. It’s a win-win, what I’m advocating for.
Click for the Continuing Connections – Sunday 5/17 Link List.
The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year. So let’s help foster and continue those connections as we wrap up another Dblog Week. Share a link to a new blog you’ve found or a new friend you’ve made. Or pick a random blog off of the Participant’s List, check it out and share it with us. Let’s take some time today to make new friends.
I discovered a blogger that has a sense of humor, a heavy technical slant, has had type 1 since age 4 so I think about 44 years now. He writes in German and English and shared really interesting posts this week. I think I’ll be reading more. Check out Thomas here at: http://thomas-diabetes-blog.com/blog/
I’ve travelled several times each month this year and it’s given me some lessons:
I’ve learned that I get motion sickness on planes and cannot travel without taking Dramamine. I tried to forego it once and that one time we just so happened to have a bumpy ride. It is not fun to worry about dropping blood sugars while throwing up and being jostled about in the tiny plane lavatory.
Taking all the airport stairs and skipping the moving sidewalks (is that what they’re called?) is a good way to combat all the sitting involved in travel.
Staff on planes are always happy. I still haven’t met one that isn’t, which is freaky, but if I’m feeling low, so far they are quick to grab juice if I need it and want to conserve my glucose tablet stash for later.
The food situation when in an airport is mighty tricky. Temptation abounds and yet the easiest way I’ve found to travel is to keep it real low carb because if things get hectic, and lately in airports, they always seem to, low carb often saves me amidst skipped blood sugar checks.
Given how close one’s next seat neighbor is in coach, I find it remarkable how injecting insulin in front of that neighbor has never been an awkward experience. In fact, it’s a great conversation starter and I’ve literally written down each starting line for your own amusement:
“Wow, those needles are tiny, I’m so glad for you.”
“So you have diabetes, huh?”
“OMG, do you need sugar?”
“Ok, what do I do if you pass out on this flight?”
“Wow, in and out, just like that, eh? It takes me longer to sneeze.”
“How long have you had it?”
And my personal favorite: “Does it hurt? I’m sorry, of course it hurts, what was I thinking? That was such a stupid thing to say, I’m so sorry, I didn’t mean to say that, I just figured that it hurts but maybe it doesn’t or maybe you’re used to it, is that it, are you used to it? Wait…I take that back, I get migraines and I seriously doubt I’ll ever get used to them. Just forget I said that, ok?” 5 seconds later: “So, where ya headed?”
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)
Hmm… Ok. I want my medical team to know that I know that they don’t know as much as they think they know about my diabetes. I do have to say however, my endo is extremely insightful about my type 1 diabetes. He doesn’t assume things and he seems very aware of the challenges involved in managing type 1 diabetes and for that I’m grateful. As for the rest of the team: Just know that you don’t know much. That would really help me out. Really.
Oh and I’ll be happy to answer any questions you have.
There have been times when I’ve slacked when it comes to how often I check my blood sugars. Sometimes I get down to 4 times a day and I know that isn’t personally enough-not for my aggressive control of blood sugars. But, I rarely keep that up for long because being connected to the DOC, or Diabetes Online Community, means constant reminders of how important checking blood sugars is along with encouragement and people to really relate to.
In January I ran out of test strips because I had given half of my last shipment to my brother, who was just recently diagnosed with type 1 and then I ran out of money. I had to put money into paying rent and bills and focused on just getting by while not feeling pity for myself but instead, feeling happy and grateful that I normally am able to afford all that I need for my diabetes.
I made a comment on Facebook about having run out of strips and was shocked by how many fellow people with diabetes suddenly told me they would send me some extras they had. Several people knew I didn’t have a certain kind of meter and ended up sending me strips and the meter that corresponded.
It has been so heartwarming. Strips are a precious commodity for us people with diabetes-and they cost a lot So to me these acts of kindness are HUGE!
I was getting by decently by eating low carb, skipping meals, and trying to constantly guess my blood sugars. Thanks to certain members of the DOC, I was able to stop the stressful madness and check again.
I can’t thank you enough,. Thank you, thank you, thank you.
I accepted the help on the condition that if these people ever needed anything they’d let me know. I hope they know I mean that ;)
Just another reason why being part of the DOC is awesome.
It takes bravery and guts to hope. It’s a leap of faith. There’s a vulnerability in it. I love those qualities in people so I always encourage myself to feel hopeful about things. Even if I’d rather put myself in a more protective state and cross my arms, shake my head, and tell myself that hoping is for ignorant suckers.
It’s beautiful and scary and takes patience. I also believe it sets a very particular vibe that positively touches everyone and everything around it.
This week we heard two news stories come out about diabetes research. I find them both uplifting because it gives me the feeling that we’re moving in the right direction, that we’re learning more things, and I’m reminded with this news that researchers are working on figuring diabetes out. All that encourages me. I’m doing my part by taking care of myself, and they are doing theirs by making strides in research-it’s excellent teamwork.
If I put myself in the frame of mind of a person whose child has type 1 diabetes, and I can’t feel what they feel, only I try to imagine more or less- I admit I feel an overwhelming sense of urgency and desperation. I have a child that’s very allergic to some common foods and I see that as much easier to handle than a child with type 1 diabetes. And even with my situation I feel desperation. I’m anxiously awaiting relief of my way of life which includes more fear, home cooking, and limitations for my daughter and our entire family than we’d otherwise have. I’m working on this. I’m constantly trying to keep fear in check, to recognize that home cooking is healthier and cheaper anyway, and trying to see that limitations are only what we view them as. In other words, I don’t live by the ocean and as a result, don’t get to see it often. But I don’t view that as a limitation, it’s just the way it is. Well, we don’t eat out due to allergies and it’s just the way it is for us. The real tragedy in our case would be lack of food or epi-pens in a time of need. So perspective and gratitude is huge in our day to day happiness.
However, type 1 in children is a complicated beast that puts a child in danger 24/7. Is there anything else like that for a child outside of other serious conditions and extremely harsh living environments? What I’m saying is that the seemingly irrational fear of parents of children with type 1 is something that really deserves our understanding, patience, and compassion. Hope in their hands regarding a cure for type 1 diabetes is a very fragile thing. And I’m just saying that I recognize that and cannot judge that position.
On the other hand as someone who made it through childhood with type 1, I feel much less fear and desperation for a cure for myself and unchecked I actually feel a tinge of pride and arrogance about how I’ve made it without a cure and all while being told every five years that the cure was right around the corner. What did that do to me? At first I felt like a ragdoll in a child’s hands. Then I allowed it to give me a little bit of a shell. A rigid, chilly shell. But over the years I’ve let that go because like I said earlier, it’s a beautiful thing to feel hope. I prefer being soft, pliable, open, and able to adapt to change. I hated how at 13 years old, I felt embarrassed to show positive emotions because of how that emotion could turn sour all of a sudden and someone might witness that and I’d publically lose face. I secretly preferred and longed to get myself back to a time when I would hear happy news, smile and leap for joy and then have my hopes dashed and suddenly pout and sigh from a sense of loss but soon get over it. Am I saying I’d like to be like a child again? Kind of yeah. I watch my toddlers and am constantly amazed at their range of emotions in such a short time span. They feel what they feel when they feel it. Then they let it out, let it go, and move on. It’s healthy and sweet and vulnerable and I admire and cherish this about them. I also can’t help but notice that most children do this and it’s partly what allows them to generally learn so quickly, be so happy, and forgive so easily.
So for those of you with a bit of snark about the news that seems blown out of proportion or who feel that you’ve lost all hope and trust because of past promises about a cure, I understand that, too. But, I wish for you to let go some of the pain from the past because well…it seems like a miserable weight to carry around. Hope is light and energetic and doubt and sarcasm seem like the opposite.
No matter what, those of us with diabetes have it right now and that means we have to deal with it. It begs to be managed and so our best bet is to live in the moment with it. Not easy, I know, but what’s the alternative? After all, nothing about having hope means ignoring reality-that would be more accurately described as delusion or assumption or arrogance.
But allowing hope to help us through our reality, well that’s it’s greatest purpose isn’t it?
I haven’t posted an A1c in a while. Let’s face it I haven’t posted anything in a while but in that time frame I’ve received emails like, “So, you’re A1c is suddenly not good enough to share?!” No…I just haven’t made it to the endo, lately. Sometimes that low $30 co-pay IS a deterrent. That and fear of course. So I finally did go and here are the results. My A1c is 5.9, the highest it’s been in the past 6-7 years. I drank regular coffee before my appointment to see if I could bump up my blood pressure since lately it’s been in normal range as long as I exercise regularly and avoid caffeine and sure enough, I was 130/80. I got it tested again a few days later while having had no caffeine and I was 110/71. WOW, is all I have to say. And no more regular coffee for me, ever!
About my A1c, in order to be fair and transparent, it sounds fantastic but, it’s a reflection of more swings in blood sugar than my last A1c which was 5.7 so I really have more work to do- even though it wouldn’t appear that way. And that’s the point with my sharing my A1c and the other tests along with that. Because if you’ll notice below where I post pictures of my results, I have an MCHC test in high range and in my case it means Vit B 12 and Folic acid deficiencies (having ruled out liver disease as a possibility). This winter was tough financially so we didn’t purchase many foods high in those vitamins and when we did I left my portion to my kids since they are at a more crucial state of development. I eat a lot of vegetables but meat and seafood sure seem to boost vitamin B 12 levels more than anything else. So I will try to include more of those foods now for sure. That and get all of us on a multi-vitamin. The other thing I want to mention is that it seems that having a deficiency in B12 and Folic Acid affects red blood cell life (from what I read). Our A1c test reflects our blood sugars over the past 2-3 months because that’s how long those cells live before they are replaced with new ones. If mine are dying more quickly my A1c would reflect a period of time less than 2-3 months. So there is that. Though I’m not sure about how all that works.
By the way, I found this out by asking my doctor’s office for my detailed results as you see below. Otherwise they send me a sheet of paper stating what my A1c is and letting me know that everything else is “normal”. When I got my paperwork this time around I asked for all the exact test result data and found out those vitamin deficiencies (good to know so I can actually do something about it) and I found out a high bilirubin count which in my case (due to unshared personal data) seems like a genetic thing and leads me to attempt some liver detox to see if that helps (like juicing beets). It doesn’t seem to be anything serious except it possibly causes chronic fatigue and mild jaundice and that’s no fun.
So anyway, here are the results. I just want to point out that at some point my triglycerides, cholesterol, and thyroid levels were all abnormal and now they’re not. Not always, but often, these things can absolutely be helped with changes in lifestyle habits. Worked for me and it’s something I keep putting effort into.
I wrote a post a while back called Which Diabetes is Worse? I had a thoughtful response from a type 2 diabetic, Christine, who felt strongly about how both type 1 and type 2 diabetics have it rough. I don’t know what it’s like to have type 2 diabetes so I asked her to write from her perspective. I really appreciate Christine doing this because it’s always important to be reminded how all of us are dealing with challenges unique to our own journey in life. Here’s what it’s like for this type 2:
Christine and her family
A while ago, Sysy invited me to do a guess post on the “The Day in the Life of a Type 2 Diabetic.” I don’t know what it is like to be T1, so I can’t really say what is different, except for maybe dreams and goals. From everything I have heard, when you are a Type 1, you became such at a pretty young age, Pre-teen even. I could be wrong, but this is before a person has full expectations of their life and what it would be like. When I was a teen-ager, I may have known what I wanted to be, but I was still planning and letting my life unfold.
I became diabetic at 25. I already had a life and thought I knew how it was going to be. I was living that life. I was married and had a toddler. I was finishing my degree and knew where I was going. I had a solid plan and saw no turns in the road. I wanted 6 children. I was going to be an active stay-at-home mom, who did all kinds of fun projects. I was a contributing member of society and actively participated at my church. I was a “yes” girl. I thought I could do anything if I put my mind to it. As a person I had fully developed my habits and tendencies. I was a creative person who didn’t plan well and lived in the moment. I did what I wanted, when I wanted, to.
So, when my life changed at diagnosis, I had to do more then develop new habits and routines, I had to change who I was, who I had become over those special years. It wasn’t even until today in fact that I realized, that I had to rewrite an entirely new life for my self. All my dreams and goals, had to be revised. Everything I expected and planned for had to change.
It is hard to change who you are when you are already done with the preparatory years. It’s scary. Who am I now? What can I do? How will my life be? Some answers are clean cut. The dream of 6 children is not going to work out. But can I still be that mother I worked so hard to become? Some days I am so tired, it feels impossible. I am 29 now and I am still trying to figure myself out, with this new life. I have to change me, I have to become consistent in my routine. This feels boring and against my nature. I feel like I am still on the turn in the road, unable to see the road ahead of me, hoping the road continues. It is exhausting and I feel deflated and defeated a lot of the time.
That is what it is like to be Type 2, at-least when you are a young T2. I feel physically and emotionally tired and anxious all the time and I can remember what it is like to be healthy, which almost seems like a curse instead of a blessing. In some ways it’s like being a teen-ager with an adult life, because I have to find myself all over again. On the other hand, I did have that time where I got to live my life without this weight over me and that is a blessing. I had a typically teenage experience and didn’t receive my trials until I was older. So, that I can be thankful for.
What is the same? I don’t think anything is the same for anyone? We all have struggles. One might be great at maintaining their blood sugars where another is not. While one might be afraid of needles and the other had no problem with it. Some might be good at keeping a routine and some might be good at keeping an optimistic point of view. We all have out own personal trials with this disease. No one has it worse or better, it is just different for each of us. It may feel lonely and isolating at times, because people don’t see “the sweetness within,” and how it can affect a person, but we T1 or T2 diabetics, we know and we can support each other.
Thanks for opening up with us Christine! Comments and discussion encouraged everyone!
My sister and fellow type 1 diabetic, Ana, had her first art showing recently on campus of her school, James Madison University.
The theme she chose was diabetes so I really wanted to share pictures of it with you all.
One of Ana’s professors expressed worry that this theme of diabetes somehow limited Ana’s potential to perhaps show her range. I would like to respectfully disagree. Diabetes is a 24/7 condition that affects every single cell in our bodies, has no cure, and has mental, social, emotional repercussions. Diabetes has no limits and neither does art. Art is expressed in many forms and has the potential to teach, inspire, and move us deeply. I have diabetes and know my sister but was still very surprised and moved from this collection and I know that many people without diabetes were really impacted and informed by this art work.
Ana was extraordinarily brave to open herself up in this way and allow us a chance to learn from and relate to her as a person living with diabetes. What is it they say? That in showing our vulnerabilities we reveal our strength and courage? Well, I agree and I’m really proud to call her my sister.
Her showing starts with a setting for visitors including her business cards and a jar of strips which gives a visual for just how many of these things we go through and how many finger pricks we endure.
This one is called “ketoacidosis”. Ana has only visited the hospital once in almost 19 years with type 1 diabetes and it was for ketoacidosis as a teenager. It came up fast and seemingly out of nowhere and scared the heck out of us. She recalls that she didn’t really know what ketoacidosis was nor did she realize how dangerous it could be.
Here, Ana says this represents the time between her hospital visit for ketoacidosis and the time she began these paintings. So activities and events are shown below and collectively demonstrate what is her very “Normal Life”, as the painting is called.
This one stumped me until Ana explained it. It’s the third in this series of four paintings and is called “Attack”. During the time of Ana’s “normal life” she read up on ketoacidosis to understand it better. She read about how serious it was and then went days waking up in the middle of the night with what sounds like anxiety attacks. She says she felt her heart beating strongly (which is why it’s enlarged in the painting) and felt she was being choked and sick to her stomach with fear at the realization of what diabetes could cause to happen.
Ana ends with a piece called “Thank You” which represents the support and love from family and friends.
“Insulin is Not a Cure”
This one is called “I Can See It Happening” and represents Ana’s fear of diabetes complications, namely, blindness. This is a strong fear for her because of how she loves to paint and make art and is a generally visually oriented person. But the squeezing out tears is also indicative of the many frustrations from living with diabetes.
I don’t remember this but days after Ana’s type 1 diabetes diagnosis at age 3, she caught the flu! Here are two framed sheets of notebook paper where our dad charted out Ana’s blood sugars trying to understand type 1 diabetes and help take care of a young daughter with the flu all at the same time. She was still in the honeymoon period at this point.
A wall of thoughts and feelings about diabetes…
Ana asked people with and without diabetes a few questions and framed the questions and the responses she received. Here are a few:
Ana’s answers to those questions:
Our friend Jennifer Brannock’s response:
Our mom’s response:
Our 12 year old brother:
From Ana’s boyfriend (ironically, also my husband’s youngest brother):
Here is one girl’s heartbreaking response (let’s leave her some encouraging comments!)
From Patty Keller:
More people from the DOC responded:
Don’t we know about ketones and strips…
The beta cell is quite lovely:
and in color:
I remember taking this picture one summer. Ana and our other sister Sara were in the basement roller blading to music. Our mom called down the stairs, “Ana! Check!” Ana dutifully shoved off her skates and ran upstairs to check. I thought about how our reality was so strange, yet so normal and I took a picture of her while checking her blood sugar. I didn’t tell her to “say cheese”, she did that all on her own. After this photo she went back to roller blading and I was secretly inspired by her ability to carry diabetes so gracefully. Even though the hardship of diabetes is present, I think this picture reflects the potential we all have as people with or without diabetes.
In other words, we do what we need to do, smile…and carry on with life.
Thank you so much for viewing/reading this post. It’s the next best thing to having had you all over to the art show in person.
We’re eager to hear what you think in the comments :)
XOXO, Sysy and Ana Morales