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.
Too often, I have worried about my health, let questions swim around my head and neglected going to the doctor to deal with my concerns. I know why I’ve hesitated. It has to do with two simple things: fear and money.
Fear is so powerful a motivator but it isn’t a positive one. To neglect one’s health due to fear is generally to encourage a more negative outcome based on putting off something important. For example, the person with diabetes avoiding their annual eye exam may create a more frightening scenario when they finally go and find out they would have been better off knowing about a treatable eye issue while it was easier to treat and while their vision wasn’t yet compromised. I did this the year before last and when I went to the doctor a few months ago, basically shook in my boots over what she was going to find in my eyes. I was lucky–this time.
Money is not just a huge motivator, it’s a stubborn deterrent. If I can’t afford something, I can’t afford it, right? Thanks to credit cards, more of us are managing to get our insulin, strips, and doctor visits in but we are psychologically crumbling at the rising debt caused by affording what we need, knowing that we are further in the hole. I posted a while back about how much I spend on healthcare outside of my premium each year on my diabetes. That was just a few years ago and the number has not doubled or tripled, it has quadrupled since then. My family income hasn’t quadrupled so good luck to us. I’m not the only one trying to choose healthier versions of food, better insulin, adequate strips, and regular doctor appointments. I know many of you are struggling with the same and it is frustrating. We have to make some hard choices don’t we?
So how does one cope with these realities and still feel like we are in control of our health?
I don’t really know but I can tell you what I do to feel as close to that as possible.
First thing I do is make a list of my concerns and questions. I try to get as many of those as possible met at doctor visits. I ask my husband to help me make sure I go to the doctor. I think of my children and how they need me to be well and I push through and make sure I don’t neglect getting my questions answered and concerns dealt with. I go to the doctor with a list of things so that I don’t forget anything. Pushing through fear ends up feeling better than cowering at it.
Then I create a list of things to do each day that support my goals. Eating healthy, exercising each day, getting enough sleep and water, checking my blood sugars and taking my insulin–these are all non-negotiable. I have to be that person who loves spontaneity but who puts her foot down and tells people, “Sorry, I am not available at that time of the morning because that is when I work out.” Or “No, I can’t get a drink, I have to get to bed, maybe tomorrow at an earlier time?”
When it comes to finances, I also have to put diabetes and health first. So I budget diabetes and health items in like a car payment or the mortgage and try to have the mentality that these things are more important than even a mortgage. Wine and entertainment may seem like necessities but aren’t really. Those things get pushed back if needed. No it’s not fun… yes it is worth it.
The thing with discipline is that even though it seems really boring and restrictive, it doesn’t have to be. It can be the most empowering and noble thing in the world because of what we can accomplish through this discipline (and how we are the recipient of all the earnings). And you don’t have to suffer if you don’t choose to. Suffering due to our own choices can be very minimal or even non-existant because we are in control and no one is the boss of us and we aren’t blowing aimlessly in the wind like my blood sugars after a pizza and dessert.
Sure I mess up and throw off my health from time to time with poor choices. However, each time this happens I’m only more convinced that my disciplined routine is wonderful because it is what gives me the feeling I imagine healthy non-diabetics have: to feel decent most of the time. How marvelous it is to feel decent most of the time. With diabetes and without discipline, feeling decent most of the time isn’t possible (unless you are special and not like me). Think of how much you can do when you feel fine most days and can carry on with work, family, friends, and fun?
I’ve spent about half of my whole life feeling crappy and that is why I’m so enthusiastic about taking control of my health, despite the challenges. I deserve to feel really good and so do you!
High blood pressure made its debut 7 years ago when I was pregnant with my twins and developing preeclampsia. A day before they were born via necessary c-section I laid in bed thinking that I felt like the life was being sucked out of me. With my enormous belly I rolled myself out of bed and hobbled over to the computer as my husband slept. I researched my symptoms and realized I was experiencing high blood pressure.
After having my kids my blood pressure took a few months to stabilize. Then, each time I visited a doctor’s office they would check it and find it sometimes in normal range and sometimes in prehypertensive range.
During the last year I felt a terrible range of symptoms anytime stress was present (and if you are me, that is quite often). I could hardly explain my symptoms except to say that I felt once again that my life was draining from me. I’m known for my dramatic interpretations of things but at times I’d really clutch my chest and wonder why I felt like my heart was stressed, literally.
Recently, I’ve been going to bed later and sometimes finding myself dehydrated. It’s easy to neglect self-care if it comes on gradually. So although my decline in health appeared sudden, in wasn’t. I should probably expect the recovery to take equal time.
I came home from a cross country trip in a panic a few weeks ago. For months I’d been struggling with an irrational but growing fear of type 1 diabetes in my son and before I boarded my last plane home, my husband informed me that our son spent the last few hours vomiting. I had a panic attack on the plane. When the plane landed my husband let me know that my type 1 diabetic sister, Ana checked our son’s blood sugar and he was 96. I felt relieved in my mind but my body was still in panic mode.
When I got home there was an ambulance in my driveway. I felt a squeeze in my chest. My pulse was off the charts. I ran into the house to find out my son was fine. My husband had felt worried and unsure about how our son was doing and since I wasn’t there he called paramedics to help him. No sign of dehydration. Perhaps a stomach virus or food poisoning. We were to keep him hydrated.
I stayed up with my son that night and went to sleep at 5am. I knew I was abusing my body but I couldn’t figure out how to be a good mom and a person who could take care of herself at that moment. I had to defer to the next evening when my husband got home from work and I got myself to a clinic to get checked out since I also had symptoms of a possible blood clot from my flight. My electrolytes and kidneys were tested and in fine condition. My pulse was about 120 and my blood pressure 188/105. The doctor couldn’t understand why at 33, I’d have such high blood pressure. My BMI is 23% and I exercise nearly each day. I eat very well. My A1c stays between 5.4 and 6.1.
I did lose my grandfather when I was very young to a stroke and my aunt has had high blood pressure since her 20s. On the other side my grandmother has had high blood pressure for a long time. So I suppose I am predisposed. I have lived with type 1 diabetes for 21 years which is an undeniable stress when not managed well.
Fast forward a few weeks. I’m on blood pressure medication. My dad turns 60 the same month I turned 33 and I have asked myself several times, “Am I going to make it to 60?” I know I probably will but my concern is the state of health I will be in at that point. I am the most stubborn person you will meet. I want to be relatively healthy or not be at all. Yes, I just said that. I think it is a comment completely and utterly based on fear and past experience. I’ve already had a hard time and things will probably get worse? How do I mentally manage that possibility? Are these feelings normal? Do I have some kind of diabetes burnout?
My plan is to sleep well, take deep breathes, practice more gratitude, keep exercising, keep eating well, entirely avoid coffee and alcohol, and try to accept that I need blood pressure meds and that maybe I have done an ok job and things just happen. I see a doctor soon to talk about my anxiety and blood pressure.
Do any of you deal with similar issues?
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.
I struggled with the title for this post. I wanted to call it “You Need This App!” but I imagined people would then start reading and be discouraged by the surprise theme of menstruation on a diabetes blog. However, I am certainly talking about a mood and period tracker app and it really is my favorite app. It has improved my well-being. It has helped my relationship with my husband. It’s got an alienating and cheesy name-are you ready for it? “Hormonescope”. Look beyond that and let me explain.
We women know all too well that in the days leading up to our period, our hormone levels change. What I have learned is that they fluctuate all month long and these fluctuations are legitimate motivators to our changing moods and behavior. I got this app last year and quickly realized that each day, when I read what was going on with my body and why, I could easily be more in control of my day(s).
This app tracks you from the starting date of your last period and then gives you a daily “hormonescope” that is not ridiculous at all but based on science. I decided to test it out by writing down how I was feeling each day and then reading my information for the day. What I found was that when I was feeling more sensitive to pain, the app knew about it. When I was feeling like a homebody, the app knew about it. When I was feeling like dressing up and wearing lipstick, the app knew about it. When I was about to become almost irrational with my emotions, the app knew about it. In other words, the science was well researched to generally describe what our hormones do throughout the month and when they would do it and how that translates into typical behavior.
What about those people with irregular schedules? Well, usually, that would be me. For the last few years, I have normally been between 3-10 days late each month. This app helped me with this by keeping me aware of my irregular cycle. Combined with information about how to increase overall health, I used this awareness to motivate me to eat healthier, exercise more consistently, reduce sugar, stay away from soy, keep my blood sugars consistent, and to constantly work on stress management. I have always had pretty terrible menstrual cramps that have diminished with better eating and exercise. I spent the last three months working hard at my healthy habits and just had a cycle that included none of my typical cramps, nor ovarian and breast cyst swelling and pain, smoother moods, and an on time predictable schedule. It was heaven. I’ve heard of women having this kind of cycle and I thought it would never happen to me. I feel very much supported by this admittedly simple app and the daily dose of information it shares.
I also struggle with depression and anxiety and this app has helped me with that, too. When estrogen and progesterone start to drop about a week before our period, gloominess and worry can set in. But what if you got a hint each day of what to expect with your hormones and behavior? In the days leading up to menstruation, I used to get into a terrible depressed mood and be lost in my weary haze, always slightly unsure if I would ever crawl out. Now, because I have a heads up and a reassurance that nature will help reverse the mood in a few days, I work through this hard time of the month much better than ever before. I drink herbal teas, wear loose clothing, and cut myself slack when it comes to chores and things that have to get done.
This app has also helped my relationship with my husband. It has been hard on him to lose a generally happy and loving wife for about 10 days every month to extreme mood changes. This app hasn’t just increased my understanding of what is going on with me, it has increased his understanding of what goes on with me. “Oh, you aren’t crazy, it’s your hormones!” Just kidding, he has never said that. It also helps give him insight into how he can support me during that time. I appreciate when he plans an outing out with the kids on one of the days I really need it, for example. And I think he appreciates not having to freak out over my sudden crying at sappy animal commercials. It’s also a bonus to be aware and take advantage of “sexy days”, days when hormones support the mood being just right.
There have been days when I feel like I can tackle a big project and the app knew about it. I have felt like “a genius!” and the app knew about that, too. (Too bad that doesn’t last more than a day or two) I no longer guilt myself on the few days I eat more than normal or the feelings of wanting to stay at home and chill with a book. I jump up and embrace social outings on the days my body and brain are feeling more friendly and chatty and outgoing. I deep clean the house when energy is up and cook simple and easy foods, otherwise known as microwave meals when it’s really low.
I never thought I’d rave about this kind of app but, it has brought me tremendous value and I recommend it to any woman who menstruates or any human who wants to better understand and support a woman who menstruates. Just now I read my “hormonescope” for the day and it mentions that with progesterone and estrogen on a gentle rise after a previous dip, I’m supposedly feeling more creative flow and introspection but am physically jumbling my words so writing is a perfect thing to do today. Voila.
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/
Click for the Favorites and Motivations – Saturday 5/16 Link List.
If you have been blogging for a while, what is your favorite sentence or blog post that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)
My favorite blog post: (Because getting this info down took forever and it’s one of the biggest things that helps me…)
I really believe carb counting alone is insufficient when it comes to my diabetes management. At least the simple way it’s taught. It’s just my opinion and I’ll explain why:
I’ve found that for ME, there are adjustments I make for different types of carbs. These are adjustments beyond just subtracting grams of fiber. A carb is not a carb. They vary spectacularly and learning their differences helps me keep my blood sugars in range and helps me decide which carbs to avoid.
I classify my carbs:
-Sugar/sucrose/plain fructose (no fiber)
-HFCS (High Fructose Corn Syrup)
-Chocolate, ice cream, and other high fat desserts
-Fruits and vegetables
When I eat anything with processed grains like white rice sushi or pizza or cookies, cake, or crackers, I have to watch out for a post meal blood sugar skyrocket. It doesn’t happen right away which is why it’s often confusing to dose for these kinds of foods. For example, last time you had pizza you were high afterwards so this time around you give more insulin, only to get low in the middle-towards the end of your meal.
I find that about 30 minutes after eating anything with refined or processed grains, I have to give another dose of insulin. An insulin pump option on a dual or square wave bolus works well for a lot of people, but from what I gather, people with and without pumps have a hard time keeping blood sugars in range with processed grains.
Eating something like candy made from glucose or sugar or drinking plain 100% juice or sugar sweetened beverage is a bit different. I find that if I’m going to consume this within a reasonably fast amount time (as opposed to snacking over a period of 30 minutes) then I count carbs and using my 1:15 scale, I give just that amount of insulin. Then I wait 15 minutes for the insulin to start working (more if I’m not in range). I find that the insulin cancels out the sugar carbs pretty well and there is no shocking aftermath.
High Fructose Corn Syrup (HFCS)
This one is interesting. At least for me (remember, this is just what happens in MY body). I find that candy or beverages made with HFCS works like when I eat refined grains. But that makes sense to me when I think about corn being a grain! It’s easy to forget because people serve it to kids and say “eat your veggies”.
High fat desserts
This gets it’s own category because of the large amount of fat (and because they’re my favorite!) I try to stick with dark chocolate for a low dose of sugar. I also make sure to buy desserts that do not have HFCS in it as a sweetener. I try to get the gourmet kind with minimal ingredients and then I count carbs and give insulin in the middle of eating since the fat content really slows down the absorption of most of these foods. If there is a lot of sugar I give insulin prior to eating as usual. I’m referring to a dessert like high fat truffles, mostly.
I count carbs and then add a tiny extra amount of insulin to my carb count depending on how much I eat. I don’t have to do this unless I’m really filling up on this protein source. I love how these foods fill me up and do very little to my blood sugars.
Vegetables and Fruits
I’m a fan of these, especially in terms of carbs. As you are well aware, the high antioxidant, vitamin, mineral, fiber, and water content of these foods makes them wonderful for our health. I definitely don’t need as much insulin for these foods. I count the carbs and then omit for fiber content. Fruit is something I stick to consuming in it’s natural state and in small quantities. The sugar in fruit is fructose and too much overloads the liver, causing fatty liver problems. Oh and it definitely affects blood sugars. My favorite are cherries, they are very low glycemic. Have you tried them for a low? It takes so many!
I know I didn’t talk about legumes or nuts. I don’t eat legumes anymore. I think I ate too many as a kid. I treat legumes like vegetables and I treat nuts like meat.
With any food: If I eat a lot, I need to give a little extra insulin for the full stomach effect that Dr. Bernstein has talked about in his books.
I adjust for a few other things. I’ve mentioned them before but here we go again:
-BM status. Eww, I know. But being backed up might make a person anticipate a need for more insulin. The opposite of that issue= less insulin. So watch out for major lows if you get food poisoning!
-Stress. If I’m stressed, I have to give a little bit extra insulin to combat the stress hormones and their affects on my blood sugars.
-Exercise. Different types of exercise require different diabetes management approaches. Read Ginger Vieira’s book for that info and so much more-even worksheets for getting all these changes right!
-PMS. Days before I start, I need to up my basal insulin.
-Sleep. If I stay up late (past midnight), I have to give some extra insulin (unless I’m active).
-Sedentary. If I’m being sedentary more than two days in a row due to sickness or diabetes burnout or whatever, I definitely have to up my basal insulin substantially (by 30-40%).
-Too much artificial sweeteners. Certain artificial sweeteners in high doses do contain carbs (it’s a small amount per serving so they’re legally allowed to round down to 0) so if you’re binging on diet coke, check your blood sugar and stay alert to a sneaky increase.
That’s all I can think of. It’s just an example of how you want to be aware of how your body reacts to different types of food and activity. You can see why I stick with meat/poultry/seafood, vegetables, and fruits. Much better blood sugar stability and less variability for me. But when I do splurge, at least being aware of how those foods act differently help me manage them for those occasions.
I write all this out because you can have tighter blood sugar management. It helps to learn yourself and the foods you’re eating. Again, get Ginger’s book or ebook and discover how to improve your blood sugars. I highly recommend it.
Click for the Foods on Friday – Friday 5/15 Link List.
Taking a cue from Adam Brown’s recent post, write a post documenting what you eat in a day! Feel free to add links to recommended recipes/shops/whatever. Make it an ideal day or a come-as-you-are day – no judgments either way. (Thank you, Katy of Bigfoot Child Have Diabetes for this topic.)
Here is what I ate one day last week. It’s pretty typical though I do like to change it up quite a bit:
In a magic bullet blender I put in a handful of frozen berries, a little fresh mint, some kale, chard, spinach, (or other dark leafy greens), some almond butter, chia seeds, and unsweetened coconut flakes. I drink it up in a wine goblet.
11am I have coffee with a little milk.
Kale salad with feta cheese, tomato, red peppers, and olives. A slice of uncured deli turkey.
3:30pm I have tea time. Today is a chocolate mint mate with nothing added.
Some sauteed mushrooms, potato, squash, in a bed of peas with mint. A glass of cheap wine. A hibiscus popsicle.
This is a typical feel good day. There are days when I have pizza with grilled veggies on top and ice cream.
Click for the Changes – Thursday 5/14 Link List.
Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?
Since blurting out “cure!” would make this post too short, I will say that I want management tools, devices, and medications to become accessible to everyone who needs them. I’m tired of using insulin past it’s date, using expired strips for the past two years, and not affording a CGM. More than that, I would love for anyone to have all they need to attempt to manage their diabetes well. Imagine, having all those things still doesn’t guarantee managing diabetes well-that’s how tricky it is. But at least being able to not stress about acquiring tools (including basic ones like um, insulin) would be nice. So we need better tools and we need better access to those tools. (I wrote this post a few days ago, since then a similarly themed article popped up that I’d like to refer you to since it’s more articulate than my post: https://myglu.org/articles/a-view-from-the-other-side-of-the-tracks).
I could go the route of saying we mostly need people’s perceptions to change since that may lead us to the mass funding we need for a cure. So there is that notable thing.
To be honest, I could go on all day about changes I’d like to see. So I’ll stop there. :)
Click for the Clean it Out – Wednesday 5/13 Link List.
Yesterday we kept stuff in, so today let’s clear stuff out. What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it? (Thank you Rick of RA Diabetes for this topic suggestion.)
I am a sentimental fool. Let me tell you about the lancet device I use. Well, first let me explain that last year I was using a multi clix device and I really loved it (ooh and I know I want to try the fast clix!) But then my dog chewed it up and I went back to my original 1994 (don’t know what brand, it has long rubbed off) lancet device. It’s the one I’ve mostly used throughout the years. I’ve tried new ones, agreed the new ones are better, and then my weirdo self went back to the original.
Why? I think using this clunky, loud, and more painful device makes me feel like I haven’t had diabetes for 20 years. There is a sense that 20 years hasn’t actually gone by. It makes me feel younger because I was 11 when I started using it. It makes me feel like there is some consistency to my diabetes even though I’ve been on a roller coaster in terms of how I manage my diabetes and even though my body has certainly been affected by diabetes. People who are now long gone have laid eyes on this device, probably somewhat associating it with me. The sound is familiar-it makes a horribly loud and clunky (not clicky) noise. I’m appreciative of how this device hasn’t broken in 20 years despite all the times I’ve dropped it. See? I’ve got my silly reasons.
I’m hoping to tear away again and use a highly superior lancet device. In the meantime I will stick with this one out of some strange sense of comfort and practicality (because I rarely change the needle, I still have plenty of them for this device). I just need to let go. Accept some final things. Like, that I’ve had diabetes a hella long time. And that’s ok. Because I’m ok.