The cure for Diabetes-Overwhelmus

The other day the Diabetes Research Institute asked the question on their Twitter feed, who/what helps you get through the hurdles that you face when dealing with diabetes?  This question is very similar to the theme of the Diabetes Advocacy cover page on both Facebookand Google+–finding support amid the stress.
jan banner
When living with diabetes, we have all had those days.  The days when we don’t want to get out of bed. The days that we feel diabetes has won and we just cannot be bothered to fight any more.  The days when you just want to cry and cry and cry.  The days when you are certain that you just don’t have it in you any more. You are done.
 
If our child has diabetes, we may take over care for a day to let them just tune out for a short period of time.  When it happens and you are the parent or an adult, what do you do?
 
In my post on the three tips for parents of the newly diagnosed, I give one option to decompress…cry in the shower.  Let the water pour over you. Scream and let the tears flow.  No one will see your pain but you will be able to watch it flow out of you and hopefully will feel stronger and more refreshed when you emerge.
 
It is also important to have outside support networks though.  Support groups–online or in real life can offer a huge relief.  They are made up of people who understand your world. They live there and have experienced many of the same feelings that you have.  From these groups, we often find a few people that we “click” with and those individuals often become an even stronger source of support for us.
 
I was once warned that spending too much time with these people who get it could lead me into depression. It was not a good thing, this person told me, for people to sit around discussing the burdens in their life. I told this person how wrong he was.  I had a wonderful group of women that I connected with out of a support group.  We enjoyed regular “therapy” sessions that included dinner, drinks, and talk about diabetes, children, and our lives. Sitting with people who understood 3am lows and carb counting errors at school was exceptionally therapeutic.  We shared stories of life…and our lives happened to also include diabetes.  The connection was a true gift.
 
I have also been lucky to find this same connection through the internet.  Years ago…about 13 years ago to be precise, I stumbled across something called the Children with DiabetesParents Mailing list. My first email to this list asked how to get my son to eat. He was 3 years old by this time and I had been fighting alone for almost a year.  I was at my wit’s end. With that one email came friendships that have grown and lasted to this day.  I “met” people who had been where I was and could offer guidance on how to make it through. The best part for me is that they did not always coddle me.  They did not always say, “Poor Barb”. Occasionally they said, “Now that you are done whining, pick yourself up and get back to it! Living under a rock is not allowed.  You have to join us but we will be here to lean on while you move forward.”  Sometimes a well-meaning kick can be the best therapy.
 
Today, the Diabetes Online Community has grown to reach Facebook, Twitter and many other social media outlets.  Diabetes conferences and annual get-togethers are more common and eagerly anticipated by everyone involved.
 
Over the years diabetes has brought me many amazing friends and acquaintances but first I had to let them in. I had to ask for help…and when I did I was given the greatest gift of all. I was given a family that I never knew I had. A family that was united by tragedy but grew from understanding.
 
If you are struggling to deal with a diabetes diagnosis of yourself or your loved one, ask for help! Find local support groups through your hospital or local diabetes organization. Go online and search out the DOC on Facebook or Twitter.  Follow blogs like this one, share and engage yourself.  There are also many great diabetes coaches available to help you.  There are coaches and nurses online that will help with diet, exercise and making readings a bit more understood.  There are also people like me who will help you to wade through the day-to-day and find your footing with the emotional aspects of the disease.  The first step is to ask for help–seek answers and support from friends, family, and outside networks.  It truly is the cure for Diabetes-overwhelm-us.

How to deal with Diabetes-Overwhelmus

The other day the Diabetes Research Institute asked the question on their Twitter feed, who/what helps you get through the hurdles that you face when dealing with diabetes?  This question is very similar to the theme of the Diabetes Advocacy cover page on both Facebook and Google+–finding support amid the stress.jan banner

When living with diabetes, we have all had those days.  The days when we don’t want to get out of bed. The days that we feel diabetes has won and we just cannot be bothered to fight any more.  The days when you just want to cry and cry and cry.  The days when you are certain that you just don’t have it in you any more. You are done.

If our child has diabetes, we may take over care for a day to let them just tune out for a short period of time.  When it happens and you are the parent or an adult, what do you do?

In my post on the three tips for parents of the newly diagnosed, I give one option to decompress…cry in the shower.  Let the water pour over you. Scream and let the tears flow.  No one will see your pain but you will be able to watch it flow out of you and hopefully will feel stronger and more refreshed when you emerge.

It is also important to have outside support networks though.  Support groups–online or in real life can offer a huge relief.  They are made up of people who understand your world. They live there and have experienced many of the same feelings that you have.  From these groups, we often find a few people that we “click” with and those individuals often become an even stronger source of support for us.

I was once warned that spending too much time with these people who get it could lead me into depression. It was not a good thing, this person told me, for people to sit around discussing the burdens in their life. I told this person how wrong he was.  I had a wonderful group of women that I connected with out of a support group.  We enjoyed regular “therapy” sessions that included dinner, drinks, and talk about diabetes, children, and our lives. Sitting with people who understood 3am lows and carb counting errors at school was exceptionally therapeutic.  We shared stories of life…and our lives happened to also include diabetes.  The connection was a true gift.

I have also been lucky to find this same connection through the internet.  Years ago…about 13 years ago to be precise, I stumbled across something called the Children with Diabetes Parents Mailing list. My first email to this list asked how to get my son to eat. He was 3 years old by this time and I had been fighting alone for almost a year.  I was at my wit’s end. With that one email came friendships that have grown and lasted to this day.  I “met” people who had been where I was and could offer guidance on how to make it through. The best part for me is that they did not always coddle me.  They did not always say, “Poor Barb”. Occasionally they said, “Now that you are done whining, pick yourself up and get back to it! Living under a rock is not allowed.  You have to join us but we will be here to lean on while you move forward.”  Sometimes a well-meaning kick can be the best therapy.

Today, the Diabetes Online Community has grown to reach Facebook, Twitter and many other social media outlets.  Diabetes conferences and annual get-togethers are more common and eagerly anticipated by everyone involved.

Over the years diabetes has brought me many amazing friends and acquaintances but first I had to let them in. I had to ask for help…and when I did I was given the greatest gift of all. I was given a family that I never knew I had. A family that was united by tragedy but grew from understanding.

If you are struggling to deal with a diabetes diagnosis of yourself or your loved one, ask for help! Find local support groups through your hospital or local diabetes organization. Go online and search out the DOC on Facebook or Twitter.  Follow blogs like this one, share and engage yourself.  There are also many great diabetes coaches available to help you.  There are coaches and nurses online that will help with diet, exercise and making readings a bit more understood.  There are also people like me who will help you to wade through the day-to-day and find your footing with the emotional aspects of the disease.  The first step is to ask for help–seek answers and support from friends, family, and outside networks.  It truly is the cure for Diabetes-overwhelm-us.

My Sexy….Pancreas?

In honor of “Throwback Thursday”, I thought my post on the sexiness of diabetes would be a fun one to revisit. I hope you think so too…

My Sexy…Pancreas? 

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way.

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them.

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.

My Sexy…Pancreas?

In honor of Throwback Thursday, I thought I would repost my look at the sex appeal of diabetes. I hope you enjoy–again….

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.

Helping to Support Diabetes Advocacy

Yesterday I was asked to share a survey with those who read and follow Diabetes Advocacy. At first, I didn’t think a lot about it because people ask me to share or promote things all of the time. Sometimes I believe in what they are asking and do all I can to help. Sometimes their requests head straight to my trash as I see them with no real connection to what I do.

Yesterday’s request got my attention when I read a little further and realized that for every person who responds, Diabetes Advocacy will receive a donation.  That sounded pretty cool! Now I am quite sure that this will amount to pennies per click but pennies make dollars and dollars pay hosting fees, software costs, and occasionally for a bit of my time!

Diabetes Advocacy receives minimal funding.  The bulk of costs for this site are covered by things like small ads, purchases made through the online store and my own wallet.

Why does Diabetes Advocacy need any funding? Well as I mentioned, web-hosting fees are paid annually, software needs to be upgraded, and most importantly it takes a lot of work to maintain the quality of information available on the site, through social media and on this blog.  There are more hours that have been put into the information and efforts of this site than I could begin to tally. I do it because I love it. I enjoy being engaged and involved. I spend much of my time and my own money to keep things running as smoothly as possible. In return I see the results of hard work through people with diabetes having better, easier lives.

At the moment, I can also see a return on some that hard work by people spending 10-20 minutes answering a questionnaire on the use of insulin pens…or you can check out the online store for a few cool items. If you do use insulin injections, please consider checking out the survey or sharing the link with your friends who inject.  The result is supporting the work of Diabetes Advocacy without having to spend a dime! 

new logo Medium size

Helping to Support Diabetes Advocacy

Yesterday I was asked to share a survey with those who read and follow Diabetes Advocacy. At first, I didn’t think a lot about it because people ask me to share or promote things all of the time. Sometimes I believe in what they are asking and do all I can to help. Sometimes their requests head straight to my trash as I see them with no real connection to what I do.
 
Yesterday’s request got my attention when I read a little further and realized that for every person who responds, Diabetes Advocacy will receive a donation.  That sounded pretty cool! Now I am quite sure that this will amount to pennies per click but pennies make dollars and dollars pay hosting fees, software costs, and occasionally for a bit of my time!
 
Diabetes Advocacy receives minimal funding.  The bulk of costs for this site are covered by things like small ads, purchases made through the online store and my own wallet.
 
Why does Diabetes Advocacy need any funding? Well as I mentioned, web-hosting fees are paid annually, software needs to be upgraded, and most importantly it takes a lot of work to maintain the quality of information available on the site, through social media and on this blog.  There are more hours that have been put into the information and efforts of this site than I could begin to tally. I do it because I love it. I enjoy being engaged and involved. I spend much of my time and my own money to keep things running as smoothly as possible. In return I see the results of hard work through people with diabetes having better, easier lives.
 
At the moment, I can also see a return on some that hard work by people spending 10-20 minutes answering a questionnaire on the use of insulin pens…or you can check out theonline store for a few cool items. If you do use insulin injections, please consider checking out the survey or sharing the link with your friends who inject.  The result is supporting the work of Diabetes Advocacy without having to spend a dime! 
new logo Medium size

3 Tips for Parents of Newly Diagnosed Children with Diabetes

I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday.  That being said, it was an easy question to answer and comes in the form of three pieces of advice.

First and foremost, live your life four hours at a time.  Do not worry about six hours from now. Do not worry about tomorrow.  Live life in four hour time slots–nothing more.

Chances are high that your child is using a rapid acting insulin. They basically last four hours.  Look at readings inside the four hour window.  Look at food and activity in that four hour period.  If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve.  What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?

Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.

My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them.  Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour.  You deserve the break.  You cannot be the very best external pancreas that you can be without a break and an outlet.  Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.  Its okay to do this.

Finally, cry in the shower.  Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.  Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt.  Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.

You can do this.  There will be bumps.  There will be victories.  The landscape of your life, and that of your child, has changed forever.  This doesn’t mean that he/she will never achieve their dreams or live a long and full life.  It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times.  Life will be different but it can still be amazing…just four hours at a time.

crying in shower

3 Tips for Parents of newly diagnosed Children with Diabetes

I was recently asked what advice I would give a parent of a child newly diagnosed with Type 1 Diabetes. It has been a number of years since I fell into that category but I can sadly remember it all like it was yesterday.  That being said, it was an easy question to answer and comes in the form of three pieces of advice.
 
First and foremost, live your life four hours at a time.  Do not worry about six hours from now. Do not worry about tomorrow.  Live life in four hour time slots–nothing more.
 
Chances are high that your child is using a rapid acting insulin. They basically last four hours.  Look at readings inside the four hour window.  Look at food and activity in that four hour period.  If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously! If you see something out of range during that four hours then begin to problem solve.  What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates? Did you learn that hockey practice before supper changes the amount of food and insulin your child needs?
 
Four hours. Its simple. Its manageable…and for an overloaded parental mind, really it is more than enough to handle.
 
My second piece of advice is to find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help! Share with them, unload on them, and again…use them.  Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour.  You deserve the break.  You cannot be the very best external pancreas that you can be without a break and an outlet.  Its okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.  Its okay to do this.
 
Finally, cry in the shower.  Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.  Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. Allow yourself to feel the anger and hurt.  Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.
 
You can do this.  There will be bumps.  There will be victories.  The landscape of your life, and that of your child, has changed forever.  This doesn’t mean that he/she will never achieve their dreams or live a long and full life.  It means that your perspective will shift a little (or maybe a lot). You will find new friendships that will bring you through the worst of times and celebrate with you in the best of times.  Life will be different but it can still be amazing…just four hours at a time.
crying in shower

A DTC Motivational Memory

Being Monday, I thought I would name the day “Memorable Monday” and I would take you back to a great memory that kept me motivated when fighting for changes to the Disability Tax Credit so many years ago…

The full story of how the changes to the  Disability Tax Credit came to be can be found on my website.  Suffice it to say, it was a huge struggle that was motivated and moved forward by many incredible and supportive individuals.  Together we managed to create a change that continues to benefit Canadians with diabetes today. 

There was one woman however whose story pushed me forward whenever I was frustrated.  It was a few words from her and what the credit meant to her family that made me more determined than ever to see this credit become equitable to everyone.

In the early 2000s, insulin pump therapy in Canada was beginning to hit its stride.  Insulin pumps were becoming smaller, smarter and available to more people.  They were not yet covered by provincial health plans and only a select few private plans were paying for them. This made this family’s story that much more moving.

I was contacted by a  woman who wanted to help change the way the Disability Tax Credit was applied to people living with diabetes.  That in itself was not unusual.  As word of the initiative grew, I was contacted by more and more people who wanted to get involved.  This lady had two children living with the disease.  Life had to be a struggle but she did not complain.  She was writing to help  me not to ask me for assistance.  She was a hardworking parent.  Her children were doing well.  She was able to afford an insulin pump…but only for one child.  Her finances did not at that time allow her to pay for a pump and supplies for two children. One would be able to pump but one would have to continue on injections.  If we were able to make changes to this tax credit, then the money saved on her tax return at the end of each year would make two insulin pumps financially possible.

My heart broke.  That was not her intention but it did. I could not begin to imagine the struggle of having more than one child with diabetes but worse, having to choose who gets a pump and who doesn’t? That was so terribly sad.  I had to see change happen.  I knew that sadly this woman’s plight was most likely not unique.  The increased tax savings would help many other families and individuals living with diabetes.

As we wrote letters, contacted Members of Parliament, and spoke with the occasional member of the media, this family stayed in my head. I remained in contact with her.  She did her part to send letters and garner outside support for our cause. We finally won the changes that we desired.  She told me that she could now purchase two pumps with the money that she was now owed! I knew that the tears and frustrations getting to that point had been worth it.

I have sadly lost touch with the family. I honestly would not be able to even tell you where they lived but their story is still with me. It motivated me when fighting for the tax credit, I shared it when advocating for pump coverage. Some would say that I helped them but I know that this wonderful woman’s spirit  helped me to help many others.

fairness report

A DTC Motivational Memory

Being Monday, I thought I would name the day “Memorable Monday” and I would take you back to a great memory that kept me motivated when fighting for changes to the Disability Tax Credit so many years ago…
 
The full story of how the changes to the  Disability Tax Credit came to be can be found on my website.  Suffice it to say, it was a huge struggle that was motivated and moved forward by many incredible and supportive individuals.  Together we managed to create a change that continues to benefit Canadians with diabetes today. 
 
There was one woman however whose story pushed me forward whenever I was frustrated.  It was a few words from her and what the credit meant to her family that made me more determined than ever to see this credit become equitable to everyone.
 
In the early 2000s, insulin pump therapy in Canada was beginning to hit its stride.  Insulin pumps were becoming smaller, smarter and available to more people.  They were not yet covered by provincial health plans and only a select few private plans were paying for them. This made this family’s story that much more moving.
 
I was contacted by a woman who wanted to help change the way the Disability Tax Credit was applied to people living with diabetes.  That in itself was not unusual.  As word of the initiative grew, I was contacted by more and more people who wanted to get involved.  This lady had two children living with the disease.  Life had to be a struggle but she did not complain.  She was writing to help  me not to ask me for assistance.  She was a hardworking parent.  Her children were doing well.  She was able to afford an insulin pump…but only for one child.  Her finances did not at that time allow her to pay for a pump and supplies for two children. One would be able to pump but one would have to continue on injections.  If we were able to make changes to this tax credit, then the money saved on her tax return at the end of each year would make two insulin pumps financially possible.
 
My heart broke.  That was not her intention but it did. I could not begin to imagine the struggle of having more than one child with diabetes but worse, having to choose who gets a pump and who doesn’t? That was so terribly sad.  I had to see change happen.  I knew that sadly this woman’s plight was most likely not unique.  The increased tax savings would help many other families and individuals living with diabetes.
 
As we wrote letters, contacted Members of Parliament, and spoke with the occasional member of the media, this family stayed in my head. I remained in contact with her.  She did her part to send letters and garner outside support for our cause. We finally won the changes that we desired.  She told me that she could now purchase two pumps with the money that she was now owed! I knew that the tears and frustrations getting to that point had been worth it.
 
I have sadly lost touch with the family. I honestly would not be able to even tell you where they lived but their story is still with me. It motivated me when fighting for the tax credit, I shared it when advocating for pump coverage. Some would say that I helped them but I know that this wonderful woman’s spirit  helped me to help many others.
fairness report