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!
Click for the Keep it to Yourself – Tuesday 5/12 Link List.
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)
What do I keep private from the internet? If you have known me a while you will know I don’t do private. I try to not filter myself in order to appear “better”. Oftentimes some of my posts are controversial. But there are some things I will not share. Not because I don’t want to but because I am extremely sensitive and I fear a simplistic understanding of what I write (not from most just a few)
I typically choose all my words carefully and deliberately. But I’ve allowed myself to be shoved off my blog more than once because of criticism, hate mail, and heady assumptions. I admit that any broad misunderstandings are my fault. In those cases I didn’t write clearly enough. Every so often though, I think I’m being clear, I test my blog out to a few people and ask them to tell me what I’m saying, the feedback says I’m clear, I will publish officially, and then I will get a few responses that crush me. When that happens, it seems like some readers are looking at things in a black and white fashion, skipping over some very important words I include, and instead of seeking clarification, they go off the rails at me.
Recently, I spoke to someone who I would regard as a nuanced thinker. I shared what I haven’t shared before. That will come out later for me to talk about but in the meantime I’d say that I feel sharing is highly influential and important in our community. What some of you have shared in the past has been very freeing for me. Being able to relate, to know I’m not alone, to feel I’m not a freak, etc. One way we can encourage more of this honesty and openness is to read with the same honesty and openness and respond in kind. We want to support and seek clarification, not jump to conclusions and crucify. I’ve seen a lot of bloggers get tackled over a thought they had, a reasonable human thought. And that doesn’t help us. So keep sharing friends. I will keep reading with my heart on my sleeve, understanding that you and I are no different and that you have every right to entertain certain thoughts and feelings. I try to remember too, that you are at liberty to change your mind anytime, just like me.
“I hate diabetes” escaped the lips of my five year old son who doesn’t have that kind of language habit, yet, and who doesn’t really know the meaning of the word “hate”. Hearing him say those three words set off a chain reaction of memories that started almost 21 years ago to the day when my youngest sister was diagnosed with type 1 diabetes at age three. I remember having trouble going to sleep that night after my dad wearily explained that she had in incurable illness that would involve needles and bleeding (and so much more). Before I fell asleep I remember whispering out loud, “I hate diabetes.” Later that same year I wrote in my diary those very words with so much pressure from my pen the words permanently embedded into the next few pages. Never one to pass up an opportunity for clarity, I dotted my exclamation points with my own 11 year old blood.
Since that year I have probably uttered “I hate diabetes” more than a million times-an estimate I don’t think is exaggerated. I haven’t said or thought it much in the last few years because I want my mind filled with positive thoughts and my children to start life with a mental blank slate. I want them to figure out how they feel about things versus feeling what I feel and thus carrying around a detrimental amount of my baggage. It has served me well to remove those three words from my vocabulary. I am much more equipped, emotionally speaking, to take care of myself. And I do take care of myself.
Today, I was informing my children that tomorrow I will go to the eye doctor for a short visit. My daughter said, “Ok, mom” while my son, seemingly alarmed, said, “Why? What’s wrong?” I sat down and looked him in the eyes, which were staring at me intensely, “Well, nothing is wrong, but because I have diabetes I should go to the doctor each year to have a check-up”.
“But why does your diabetes mean you need a check up?” he continued.
“Because diabetes can hurt the body’s cells over time and our eyes are particularly sensitive.” I calmly explained.
My daughter jumped in saying, “So diabetes can hurt your eyes and other parts of your body because our whole body is a bunch of cells, right?”
“Yes. And I’ve had diabetes for 20 years so it’s a good idea for me to be extra careful and see doctors every year to make sure my body is working like it should.”
My daughter smiled, gave me a thumbs up, and said confidently, “Sounds good, mom!”
My admittedly skeptical son looked down and said, “Well I hate it.” He looked up at me with his brown eyes and in the most deliberate manor said, “I hate diabetes.”
I was stunned.
For a second I thought about saying something soothing and typical of a parent. But all that came out was, “I do, too.”
And that was it. He went back to eating his dinner. I began my memory roller coaster and wondered how my child could know enough to say he hated something that he has always seen me have. Did I appear weak or sick to him? Did I give him cause for worry? What gave it away? Was he just putting the logic of my explanation together?
So many questions flooded me until I was tired of thinking. All I’m sure of is I will do whatever it takes to make sure my diabetes doesn’t affect them more than it has to. When it slows me down, makes me feel incompetent and a complete fool for having had children, I need to make sure I kick those thoughts to the curb. So that my kids don’t catch those thoughts. So that I don’t become those thoughts. Because when a five year old says “I hate diabetes” one sits up and pays attention. I don’t want my children tethered to my worries. Or can this legitimately be their worry, too? I’d rather it not be. Especially not at five. And not while I’m alright and it’s technically jumping the gun.
That’s what I will tell him tonight before he and his sister go to sleep. That I’m alright and there is no need to worry. I will make it a point to hear my own words.
I’m probably being naïve to think this topic isn’t too controversial to post. But, I don’t shy from ideas and discussions and information so… I’ve been learning about our “failed drug war” and also about how some people use medical marijuana and the benefits they say they experience. I’m not someone looking for any type of drug at the moment but I’ll be honest, I sometimes think about what the future with diabetes has to bring and I wonder if I will desperately want that option at some point.
This worry may not make sense to some but personally, I’ve had type 1 diabetes for 20 years. I’m 31 and know I likely have many more years of diabetes ahead of me. I know that every year brings the possibility of diabetes complications closer to reality and so I ask myself, “how will I cope?” One of the most common complications of diabetes is nerve damage, which may bring nerve pain among a plethora of other possibilities. I’ve dealt with random pains most of my life (not going to list them for you) and am already acutely aware of the way chronic pain works it’s way into every facet of life, from the obvious to the mundane and least expected.
To suffer more pain and not have many options for managing it sounds daunting. I’m on this topic of thought tonight because two weeks ago I had a cavity filled. The dentist said, “You have a huge cavity! So this is going to hurt and if it hurts after a few days you will probably need a root canal.” Well, I’ve been in some decent pain since that day and today I broke down in tears because the constant, between a level 1-10 I’d say 4 pain I’m having is wearing me out. Life doesn’t stop when someone is in pain. I mean if most of us have an accident or a temporary illness we get to rest and then move on as strong as ever. But when pain lasts and lasts, when people can no longer carry you or cook for you or take care of the kids for you, how do you do all that yourself? I’m only at a pain level of about 4 and I’m wishing someone would give me a sleeping pill so I can have a break. To be honest, some magnets for pain are taking the edge off for me. And I’m super grateful and obviously open to solutions like that.
I call this pain a 4 because I think I know a 10. I once spent a few hours screaming non stop from kidney stone pain (after a laser blasting of a large stone which caused many small stones to parade down my urethra) which was so bad I would have nearly taken a gun to my head had that option been available. I know, I know, “Sysy, how can you say such things?!” Pain can take over.
You must be asking yourself, “Ugh, why haven’t you gone in for that root canal?” Well, because I can’t afford it. But since I have health insurance I can’t go to the local free clinics, either. I have private dental insurance and it costs an arm and a leg. My son is going to the dentist tomorrow and it will cost $500. He comes before me so I will bargain and strategize until I can manage to go in and hand over the dough. Don’t worry about me, Friday is nigh!
Back to diabetes. You can see what has taken me down this trail of thought. Previous life experience, current pain that is making my jaw, ear, and neck hurt and my vision blurry in one eye. (Gosh, I hope that’s normal) If diabetes causes me some kind of chronic pain in the future…will I be able to handle it? I’m very sensitive to pain. I once went to a salon to get a Brazilian wax and passed out like a fool. I may not want prescription medications with dangerous side effects and astronomical costs. In fact, I know I don’t want that option. My organs need to be protected. They’ve been stressed out since I was 11. Is there anything else? I hear there is. I think I hope it may be available if I need support one day. And this doesn’t even begin to address all the people who could use some help RIGHT NOW. Do they, do you, want this option? I’m all about healthy lifestyle choices to manage conditions but what if I need more?
Growing up, the boy I was in love with, joked with me often saying, “Marriage-you-wanna?” (Get it? “Marij-uana?”) And like a good girl I always said “no”. I’d like to revise my answer to: “maybe one day?”
Winter is a particularly challenging time for many people. That would include people like myself, who might also have diabetes to perpetually deal with. So while I may gain the obligatory 5 holiday pounds, take Vitamin D supplements, and read a lot of books (like many do during this time) it also means my diabetes management is strained. My workouts have continued-I do kettle bell swinging and yoga instead of going outside for walks or runs. I have been sipping a lot of herbal tea and soups to keep warm and hydrated. But little things like checking my blood sugar feel like more of an inconvenience. I’m cold, in cuddle mode with this blanket, and have to squeeze my finger extra hard to get a decent drop of blood out.
I’ve been doing alright, I think. My routine psychologically matches my home-a cozy 900 sq ft cabin surrounded by cool, peaceful, swaying pines and grey branches. I get up, do some yoga stretches, make coffee or tea, and make the kids and I breakfast. Then we read, play, experiment, play some more, and whenever they are occupied without me, I read what I want. It feels very cozy and small and slow. I have to trick myself not to feel unimportant. Though I know the goal isn’t to feel important, either. So I just try to be. Be ok with the weather, be ok with me. I’s easier said than done. We’ve been trained to be as productive as possible. It’s definitely busier in the Spring. I get on an efficient diabetes management routine and am carried through the day by the light, warmth, and growth all around me.
Right now I take it easy. I think about what habits I have and decide which I’d like to change. And as a friend recently reminded me, I can use the Wintertime as a space for reflection and pause, knowing it will soon lead to those sunny, life affirming days that happen to be more my style. Not to pick on any of you crazy winter lovers…but, you’re a little nuts. ;)
We moved recently and bought a small house on a small triangular shaped property with dozens of trees on it. Most of the trees are pines and other evergreens, which are my favorite. The unique shape of the property captivated us and we’ve been dreaming up cool garden ideas. Even before we moved we saw a lot of work in the yard. There are several different types of vines growing wild, choking off trees, and beginning to threaten others. While envisioning the future, I imagined myself making Alex a sandwich while he worked hard to clear the vines and clean up the yard.
That’s part of the back yard, a wild and wonderful mess.
Once we moved in I realized that Alex was at work from sun-up to sun-down and the clearing of the property needed to be done and waiting until warm weather would mean watching out for snakes and dealing with pests (and I’m not confident in my ability to do either). I thought to myself, “I’m going to absolutely hate this, I’m not the gardening type”. But I went out there and starting pulling up vines, some half an inch thick, others thin and twirled around tree limbs and branches. They have formed a massive thicket and run up and down many of our trees. I used to think this look was desperately charming but I started to look up the vines to identify them. One in particular is a terrible invasive type which takes down trees (oh no, the house!) and covers up plants (how rude!). It grows really fast and we just so happen to have it all over the property. I worked for 4 hours one day only to clear about a puny three ft radius of land. Then I went inside, washed my dirt covered hands and that’s when it hit me. This was the most fun I’d had in a really long time. I felt so healthy! My allergies weren’t acting up because it was late fall. I felt peaceful and energetic. All from pulling up vines, uncovering trees and plants, and finding artifacts left behind in the ground such as Twizzler wrappers and lots of old socks (I have questions for the man that used to live here).
Doesn’t look like much, but these mounds are massive in person and reflect only a tiny amount of cleared land.
Since then I’ve spent several more afternoons doing the same, enjoying myself so much I only stop when it’s too dark to see and my kids remind me it’s time to do my motherly job and feed them (think of all I’ll be able to accomplish when they can feed themselves!) Each time I feel a sense of euphoria. I did recently pull or rip a pelvic floor muscle doing this which makes sense considering I jumped into a new physical activity without any caution and without working myself up to the task. But, I’m healing and learning not to over strain. And I’m still loving it. And I’ve become a nerd to my husband who just shakes his head back and forth as I call myself the “tree whisperer”. I struggle a lot of with anxiety and depression, something I’ve blogged much about, and this activity is like strong medication for me. I don’t quite know what it is. Maybe it’s being out in this time of year with the smell of pine, the crisp fresh air, birds, squirrels, and deer all around, and no pollen to make me sneeze. All I know is I’m just going to keep it up. It’s built in exercise, too so my blood sugars love it.
See how much there is? I can’t even find my husband when he’s out there.
I was so sure I would hate doing something I turned out to totally love doing! So, this is a serious note to self: try new things! Who knows where it will lead. And if you have any tips for dealing with invasive vines, I’m all ears.
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!
Emotional Eating with Diabetes is Ginger Vieira’s 2nd book. It tackles a subject all too familiar to people with diabetes and perhaps, not acknowledged enough by everybody else.
I’ve blogged about my struggles with food but not in great detail. So I want to share my emotional eating story.
I’m a really emotional person and someone who has lived with type 1 for over 18 years (and through childhood and teenage years) so put that together and add in some 1st world body issues and you have someone who can review this book from a very personal place of experience.
And while I think I’ve got a good grip on my emotional eating issues (they don’t resurface often), I’m like an alcoholic in the sense that I need consistent reminders to stay on the right path and out of the dark side. I really benefited from reading this book. And I think I’ll read it every single year from now on for support.
It started when I was 12 and had only been living with type 1 for a year. I would beg my mom for gum at the grocery store and then sell each piece at school for 10 cents, which I’d then pool together to buy an alternate lunch at school each day-a Little Debbie oatmeal cookie or fudge round. I hated diabetes and the rules that came from my doctors so much that I was going to spite them any way I could. So I ate what I wasn’t supposed to for lunch.
Then I started sneaking in candy bars and granola bars when no one was looking just to eat what diabetes wouldn’t let me eat. (Do remember, this was before fast acting and 20-some hour insulin so back then we did have to abide by some rules that we don’t have any longer.)
I would binge and then feel like the worst person in the world. And I developed a cycle of rebellion mixed with self-hate and a neglect for self-respect (ironically something I was all for in other manifestations). People didn’t know I had a problem because I hid it. And that was probably the first sign of a problem for me.
My health suffered, my weight went up, I had a hard time keeping up with such a destructive way of living.
Eventually (after years of hard work), I began to enjoy eating healthy and learned how to treat myself in a respectful way when it came to food. And because food matters so much in diabetes, my health improved dramatically-no, my life improved dramatically.
If this sounds at all like you or you want to stop feeling obsessive about food, get this book. It’s written in a straight forward but friendly way that will acknowledge all your fears and anxieties and help you through them. This book will give you a guided path to where you want to be and show you how to be kind to yourself along the way.
I agree that the “can’t eat that” mentality is harmful. Ginger stresses that we make our own decisions and instead of telling ourselves we can’t have something, we either choose to or choose not to. And that’s how I do now with bread, rice, and pasta and other heavy carbs. I choose not to have them but I know that if I want them, I can have them. There is a difference between enjoying chicken and veggies and eating that same dish while staring longingly at the rice side that is “forbidden”. Our minds are very susceptible to this kind of pressure and they are bound to crack.
Every now and then I eat my favorite food-ice cream, and I eat it really slowly, savoring every bite. And I remember how I used to eat it so fast my tongue would burn and I would ask myself “What are you doing, you’re not even enjoying this?!” That’s when I realize I’ve come a long way. And yes, it took baby steps, the way Ginger describes in her book, but eventually we can get where we’re meant to be. And the journey is so worthwhile. This book is succinct, kind, and best of all I believe it’s effective.
I strongly recommend it.