Day 3 Prompt
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.
It's something like 92% of those with diabetes are Type 2 and about 6-8% are Type 1. Both have issues with their pancreas. Both have highs and lows. Both have the cloud of complications hanging over them. But they are two totally different diseases with the same descriptive word, diabetes. Words have power. They have power to harm. They have power to help. And they certainly have power to confuse.
I've always been big about communication being important. I love language, always have, but I am so tired of language being used to generalize and stereotype and judge. And for me the worst offenders are the ones who could use their language for improvement. My Mom always said if you don't have something nice to say then don't say anything at all. I would add to that if you don't know what you are talking about then don't say anything or make jokes about it, especially if you are reaching a wide audience, and definitely if that joke might hurt a child. Your words make changes happen or not happen. And in a world where babies and children develop Type 1 the information and jokes you make might even cost someone their life.
When Drago was diagnosed he struggled emotionally. He was 14, had watched his younger brother almost die being misdiagnosed before diagnosis as well as witnessing and care-taking the highs and lows for a year and a half. It it him hard. So hard we put him immediately into counseling. Counseling was terrific for him. His counselor was also a Type 1 and there were many discussions on the power of words, everything from how to handle insensitivity of those that don't understand to how the words you choose for yourself carry a lot of weight. For example, instead of saying "I'm going to go stab myself" when it was time for a shot (his exact phrasing) switching it to something a little less negative like "I'm going to go take my insulin" made a huge difference. It changes your outlook. Positivity replacing negativity was huge in helping him come to terms with his diagnosis. That's not to say we don't joke and have some dark humor days but we see when humor is necessary and we work towards using positive words. In our house it is "Have you checked your blood sugar?" instead of tested. Testing for us brings anxiety and negativity. We also tend to use "he was diagnosed with Type 1 autoimmune diabetes" versus "he is diabetic". Why do we get so specific? Because of the generalizations and stigmas associated with the word diabetes, that's why. I see it regularly on people's faces when I say diabetes. It's almost like "oh, is that all" and "what did you do to cause it" kind of look. It's how people assume that eating too much sugar is automatically the reason. That diet changes will make it miraculously go away. Or that children will outgrow it. But one of my least favorite responses "Is that the bad kind?" Is any kind of disease a good kind? Seriously, not cool.
So to wrap this up, sugar doesn't cause diabetes (not gestational, not MODY, not LADA, not Type 1, not Type 2, etc.....) and continuing to put it out there that it does confuses people. It makes people brush off symptoms. It causes children to be misdiagnosed. Generalizing with words causes lives to be lost. Words can hurt. Choose wisely.
Thursday, May 19, 2016
Wednesday, May 18, 2016
The Scream
Click for the The Other Half of Diabetes - Tuesday 5/17 Link List.
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!)
Day 2 and already a little late, the story of my life. It seems no matter how much I prepare, organize, get things ready, things slip. It's the nature of life, and it truly is the nature of Type 1. We talk a lot about the highs and lows and possible complications. We talk a lot about the other autoimmune diseases that could pair up with this monster but mentally....that's a subject whispered barely audibly in a room by yourself. Have you ever seen the Edward Munch picture The Scream? Sometimes, many times, that is my mental state dealing with two kids with Type 1 and a hubby with Type 2. But on the outside I smile, I stay positive, I push forward one step at a time, one breath at a time. My husband likes to say that the boys' Type 1 is a very physically fit guy in the corner doing one-armed push-ups just waiting for you to let your guard down so he can get a good right hook into you. Just when you think you have this all figured out he hits. You can never let your guard down, and that is so mentally (and physically) exhausting and it contributes to guilt and worry and all those other emotions when it all catches up to you. (And it will because no one is 100% perfect.) And that is a recipe for burn out. And burn out lets that guy get the upper hand. And then those physical things we talk about become noticeable.
When Sugar Bear was diagnosed we were given a box with info inside but on the spine of the box it said this:
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!)
Day 2 and already a little late, the story of my life. It seems no matter how much I prepare, organize, get things ready, things slip. It's the nature of life, and it truly is the nature of Type 1. We talk a lot about the highs and lows and possible complications. We talk a lot about the other autoimmune diseases that could pair up with this monster but mentally....that's a subject whispered barely audibly in a room by yourself. Have you ever seen the Edward Munch picture The Scream? Sometimes, many times, that is my mental state dealing with two kids with Type 1 and a hubby with Type 2. But on the outside I smile, I stay positive, I push forward one step at a time, one breath at a time. My husband likes to say that the boys' Type 1 is a very physically fit guy in the corner doing one-armed push-ups just waiting for you to let your guard down so he can get a good right hook into you. Just when you think you have this all figured out he hits. You can never let your guard down, and that is so mentally (and physically) exhausting and it contributes to guilt and worry and all those other emotions when it all catches up to you. (And it will because no one is 100% perfect.) And that is a recipe for burn out. And burn out lets that guy get the upper hand. And then those physical things we talk about become noticeable.
When Sugar Bear was diagnosed we were given a box with info inside but on the spine of the box it said this:
So what gets me through the tough moments, what phrases or mantras do I use.....I tell myself to just breathe. In through the nose, out through the mouth. Positive in, negative out. This disease is so taxing on everyone effected by it. It's grueling. It's a marathon and even in a marathon you have to pace yourself, stop and walk if you need to, stop and catch your breath if it all gets to be too much. And go ahead and scream. Let it out. Better out than in because then you can go on. Keep putting one step in front of the other. Every day, every moment is a new day and a new opportunity for you to get the upper hand, for you to kick butt. For me, some days music helps, most days humor is my best friend. But always, always I'm reminding myself to center, to breathe, to listen and to know that this too shall pass and then it'll be the next moment, the next breath, the next step. It's not easy, actually it's rarely easy. If one of the boys is high, one is low, and hubby is high or maybe all three are high and I'm tired, I'm always tired, it can be an ingredient list for disaster. This disease is emotionally draining, you have to find your recharge mine is recognizing to just breathe.
Monday, May 16, 2016
Our Experience
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.)
Diabetes blog week is here! This past year has flown by and outside of two kids still living I feel like we haven't done much. I know we actually have it's just difficult to see exactly what sometimes. Anyway, here's todays prompt and check in again tomorrow. I'll be here all week!
Hmmm, what is the most important diabetes awareness message to me? Why is it important? What am I trying to accomplish by sharing on my blog? I started writing this blog after Sugar Bear was diagnosed. It originally was to help me heal emotionally. To wrap my brain around my thoughts and try and make sense of everything. His diagnosis was a traumatic experience. It hurt. We grieved. We felt so alone and scared. It blind-sided us and we could have easily lost him. Many children (and adults) don't survive or don't survive intact a misdiagnosis and ensuing severe DKA. Somehow we got lucky. Somehow. Somehow I got to keep my baby. Why? How? These thoughts floated through my heart and brain in the weeks after our experience. How could we have prevented what we went through? What would it take to keep someone else experiencing what we did? And while I was struggling with these questions and getting our feet back under us I was exploring and researching the internet and stumbled upon the diabetes online community (D.O.C.). Wow, a club had I known existed I never would've wanted to join but so thankful they were there. They had been where I was. There was a well worn path. They welcomed me and lifted me up. I found friends. I found people who understood. And with it I found my voice.
I blog our experience because it is still fresh. We haven't been at this that long. And maybe our experience will be a lifeboat for those newly diagnosed. And maybe our experience will educate those that know nothing or very little of this life. And maybe our experience will change the world. That is what I want most of all. I don't want our community to lose another Kycie, or David, or Hailey, or Reegan from misdiagnosis. I want awareness and education. I want to teach and help. I want the world at large to know this isn't caused by diet (not even sugar causes it) and that those comments hurt. And they are misguided. I want pediatricians to take parents seriously when they know something is wrong but because the parent doesn't have the extensive knowledge we rely on the professional to figure it out and it's not okay to tell us it's just a virus/strep/etc...because those brush offs do cause harm and in the medical world that is not okay. I want TV shows and advertisers and journalists to get it right because the world is listening and you are educating even if it is wrong information. I want to encourage, to educate, to advocate, and to continue to find my way because my children and yours are important. They are our world, our future. They deserve our best.
Diabetes blog week is here! This past year has flown by and outside of two kids still living I feel like we haven't done much. I know we actually have it's just difficult to see exactly what sometimes. Anyway, here's todays prompt and check in again tomorrow. I'll be here all week!
Hmmm, what is the most important diabetes awareness message to me? Why is it important? What am I trying to accomplish by sharing on my blog? I started writing this blog after Sugar Bear was diagnosed. It originally was to help me heal emotionally. To wrap my brain around my thoughts and try and make sense of everything. His diagnosis was a traumatic experience. It hurt. We grieved. We felt so alone and scared. It blind-sided us and we could have easily lost him. Many children (and adults) don't survive or don't survive intact a misdiagnosis and ensuing severe DKA. Somehow we got lucky. Somehow. Somehow I got to keep my baby. Why? How? These thoughts floated through my heart and brain in the weeks after our experience. How could we have prevented what we went through? What would it take to keep someone else experiencing what we did? And while I was struggling with these questions and getting our feet back under us I was exploring and researching the internet and stumbled upon the diabetes online community (D.O.C.). Wow, a club had I known existed I never would've wanted to join but so thankful they were there. They had been where I was. There was a well worn path. They welcomed me and lifted me up. I found friends. I found people who understood. And with it I found my voice.
I blog our experience because it is still fresh. We haven't been at this that long. And maybe our experience will be a lifeboat for those newly diagnosed. And maybe our experience will educate those that know nothing or very little of this life. And maybe our experience will change the world. That is what I want most of all. I don't want our community to lose another Kycie, or David, or Hailey, or Reegan from misdiagnosis. I want awareness and education. I want to teach and help. I want the world at large to know this isn't caused by diet (not even sugar causes it) and that those comments hurt. And they are misguided. I want pediatricians to take parents seriously when they know something is wrong but because the parent doesn't have the extensive knowledge we rely on the professional to figure it out and it's not okay to tell us it's just a virus/strep/etc...because those brush offs do cause harm and in the medical world that is not okay. I want TV shows and advertisers and journalists to get it right because the world is listening and you are educating even if it is wrong information. I want to encourage, to educate, to advocate, and to continue to find my way because my children and yours are important. They are our world, our future. They deserve our best.
Friday, April 29, 2016
Superheroes
Drago made it to school for three days. Today, he is once again sick.
Wednesday at work I once again got to tour the local Children's Hospital for our fundraising in May. It made me think on so many things, from Sugar Bear's diagnosis to Bow tie Boys challenges. I went back and reread my post "where the ceiling meets the wall". Certain memories are engraved so deeply that even with time they don't heal completely. I'm just grateful we survived and are surviving.
Wednesday night I started feeling crummy. Yesterday was my day off and I spent the whole day mostly on the couch. I feel like I have the flu. My kitty, Ricky, took care of me all day.
It was a challenge to take care of the boys needs too. It never stops. Diabetes doesn't care. Sugar Bear had a high in the 300s yesterday with ketones and Drago bottomed out with lows. When they finally were both "stable" around 9pm I could finally sleep for an hour. Then it was Lantus time for Sugar Bear. And the merry go round continued. It doesn't end and honestly i don't want it too because when it does end it'll mean either my boys have grown up and moved out and are doing this all on their own or they are gone. Right now both of those thoughts are just not where I want to be or where I am. Silver lining, I do what I do because I love these boys so very much. They are my superheroes.
Wednesday at work I once again got to tour the local Children's Hospital for our fundraising in May. It made me think on so many things, from Sugar Bear's diagnosis to Bow tie Boys challenges. I went back and reread my post "where the ceiling meets the wall". Certain memories are engraved so deeply that even with time they don't heal completely. I'm just grateful we survived and are surviving.
Wednesday night I started feeling crummy. Yesterday was my day off and I spent the whole day mostly on the couch. I feel like I have the flu. My kitty, Ricky, took care of me all day.
Wednesday, April 27, 2016
Tuesday, April 26, 2016
Weak
Drago has been sick with the stomach flu for a little over a week. Just awful. He went back to school today but he isn't 100%. Well, I guess, really when is he? His immune system seems to pick up every bug going around. He just can't seem to get a break. The good news is the pump made his illness "easier". It's always a balancing act and even more so when they are sick.
We got to hear Lauren Sivewright talk about her experience in the artificial pancreas trials. It is so hopeful. Both the boys didn't want to go, but after listening to her they were so excited. Sugar Bear was constantly whispering in my ear about how we "have to get this", this coming from the boy who is hesitant to have devices attached to him. But the thought of more "normalcy"....it brought tears to our eyes. Unless you live this it is really hard to describe the invasive nature of this disease, it colors everything.
We are in full swing of fundraising for our walk. I can't believe this will be our 5th walk for JDRF, our 3rd with two Type 1s. Every little bit we raise goes towards these innovations like the artificial pancreas that will make my children's lives so much better. I don't know if we'll ever see a "biological cure" but strides are happening that give me hope. And hope is really all we have.
I don't cry as often about my boys and their disease anymore but this past week got the better of me. Everyday is such a fight and some days it is all out war. And sometimes we feel so alone with it. It's hard on my relationship with my husband. It's hard on my relationships outside of our immediate family. And it takes a toll on all of us. The days and nights blend together because this disease doesn't rest. We're exhausted. Our brains are foggy. It is so challenging to keep functioning, to keep putting one foot in front of the other, but we do. We have to. I look at my boys and I see bravery, courage, determination. They are my heroes. There is no flinching with finger sticks. No grimacing with injections. And don't think for a minute these things don't hurt or you get used to it, well maybe you do somewhat. You definitely build up scar tissue on the fingers. Anyway, I always ask afterwards and they always give me a number on the pain scale, sometimes lower but many times 5 or above. This disease isn't for the weak.
We got to hear Lauren Sivewright talk about her experience in the artificial pancreas trials. It is so hopeful. Both the boys didn't want to go, but after listening to her they were so excited. Sugar Bear was constantly whispering in my ear about how we "have to get this", this coming from the boy who is hesitant to have devices attached to him. But the thought of more "normalcy"....it brought tears to our eyes. Unless you live this it is really hard to describe the invasive nature of this disease, it colors everything.
We are in full swing of fundraising for our walk. I can't believe this will be our 5th walk for JDRF, our 3rd with two Type 1s. Every little bit we raise goes towards these innovations like the artificial pancreas that will make my children's lives so much better. I don't know if we'll ever see a "biological cure" but strides are happening that give me hope. And hope is really all we have.
I don't cry as often about my boys and their disease anymore but this past week got the better of me. Everyday is such a fight and some days it is all out war. And sometimes we feel so alone with it. It's hard on my relationship with my husband. It's hard on my relationships outside of our immediate family. And it takes a toll on all of us. The days and nights blend together because this disease doesn't rest. We're exhausted. Our brains are foggy. It is so challenging to keep functioning, to keep putting one foot in front of the other, but we do. We have to. I look at my boys and I see bravery, courage, determination. They are my heroes. There is no flinching with finger sticks. No grimacing with injections. And don't think for a minute these things don't hurt or you get used to it, well maybe you do somewhat. You definitely build up scar tissue on the fingers. Anyway, I always ask afterwards and they always give me a number on the pain scale, sometimes lower but many times 5 or above. This disease isn't for the weak.
Friday, April 15, 2016
How long do You have to Wait
Our life always seems a bit crazy. We have had so much going on this year that it has been challenging to stay positive and on top of things.
Besides the things I have written about, I had my own health "scare". In January I found what I thought was a breast lump. My family doctor referred me to a surgeon but it took until the middle of March before I could see him. He sent me for a diagnostic mammogram and ultrasound. It turned out the "lump" I felt was really nothing but there was a non-palpable mass elsewhere that required a biopsy. I had my biopsy last Friday and am happy to report the mass is benign, but that waiting.....that interim between appointments and information....that was brutal. My Mom's boyfriend of 12 years is going through colorectal cancer right now and after his surgery has found out it is worse than previously thought. And there is so much waiting and thinking and space that it is more than challenging.
Drago started the pump this past month and that has been a whole new learning curve but is going well. Yesterday both the boys had their lab draws and three month endo appointment. Sugar Bear's TSH is elevated again and he has thyroid antibodies and we are once again waiting until the next appointment to do more labs. It is just a matter of time at this point before he'll need to go on medicine for another autoimmune disease. Good news is their HA1c's were fine and BMI's were even better.
I've gotten more involved with the research end of JDRF and even had a very bit appearance on a local TV show. I'm constantly learning to fill up that waiting space for the cure.
There is a lot of hurry up and wait. It's all a test of patience from a blood glucose checks that show a low and you treat and then wait, to the highs you treat and wait. When you wait long enough you see change. I believe the diabetes world has waited so long and is on the verge of seeing great changes. It lets me hope while we wait.
Until next time, try and enjoy your wait.
Besides the things I have written about, I had my own health "scare". In January I found what I thought was a breast lump. My family doctor referred me to a surgeon but it took until the middle of March before I could see him. He sent me for a diagnostic mammogram and ultrasound. It turned out the "lump" I felt was really nothing but there was a non-palpable mass elsewhere that required a biopsy. I had my biopsy last Friday and am happy to report the mass is benign, but that waiting.....that interim between appointments and information....that was brutal. My Mom's boyfriend of 12 years is going through colorectal cancer right now and after his surgery has found out it is worse than previously thought. And there is so much waiting and thinking and space that it is more than challenging.
Drago started the pump this past month and that has been a whole new learning curve but is going well. Yesterday both the boys had their lab draws and three month endo appointment. Sugar Bear's TSH is elevated again and he has thyroid antibodies and we are once again waiting until the next appointment to do more labs. It is just a matter of time at this point before he'll need to go on medicine for another autoimmune disease. Good news is their HA1c's were fine and BMI's were even better.
I've gotten more involved with the research end of JDRF and even had a very bit appearance on a local TV show. I'm constantly learning to fill up that waiting space for the cure.
There is a lot of hurry up and wait. It's all a test of patience from a blood glucose checks that show a low and you treat and then wait, to the highs you treat and wait. When you wait long enough you see change. I believe the diabetes world has waited so long and is on the verge of seeing great changes. It lets me hope while we wait.
Until next time, try and enjoy your wait.
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