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.

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.

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 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! 

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.

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.

Another Day, Another Feather Left Behind

The tree is down.  The Christmas decorations are put away for another year.  The house is a little bit more quiet now without the steady banter of two young men and the constant opening of the fridge.  My children were home for a week and it still surprises me how much I miss them when they are gone.

 

In one week I crammed in as much mom stuff as I could.  There was providing them with food that they love, doing their laundry and sitting around enjoying conversations.  We watched the latest Hobbit movie together and all huddled around watching to see our cousin’s name in the credits.

 

There was the other stuff that moms take care of too like a stop at the bank to fix issues on both children’s bank accounts.  There was a call to a meter company to replace the iBGstar that my son refuses to part with even though the display was not working properly. There was also the purchase of the small things needed to make life run just a little smoother that only Mom would think of.

 

It was a busy week.  We quickly fell into the routine of Mom doing more testing and helping with carb counts.  I later wondered if I should have offered to do everything for one day to give my son a complete break. I realized quickly that the idea would not possibly work given his current eating habits. He eats 24/7. I would not be able to keep up. It was much easier to offer carb counts and test while he slept in.

 

Despite delays caused by Mother Nature, my boys have returned to their other home.  They are slowly getting back into their routine and I am slowly returning to mine.  I still smile however when I see those loose “feathers” in the strangest places.  There is a test strip on the floor in my office where they spent hours catching up on the latest season of Sons of Anarchy.  There is a piece of an infusion set sitting on a table in the living room. How it managed to end up there is beyond me but there is sits waiting to be used…or find a garbage can.

 

My new role in my son’s life still leaves me feeling off balance and unsure at times. I continue worry and sometimes feel guilty because I no longer have to think about diabetes 24/7.  That is how life goes.  We teach our children and then one day have to step back and pray that they have absorbed some of what we have given them…and remember that we are their for them when the stumble or just need a shoulder to lean on. 

Costly Disease

Recently someone I know was diagnosed with diabetes. Because this person is an adult, they have yet to decide if they are Type 1 or Type 2.  The process of finding an exact diagnosis exceedingly slow and painful for me to watch.  I want to see this person feeling better and back on their feet. I want them to be able to learn how to take care of themselves and reclaim their lives.

 

In my desire to help, I have offered tips and information on treatment options. I am fully aware that some doctors prefer a  tried and true older method of care in part because of the costs associated with the best care  options.  I know that this person would want to have the best life possible.  I never thought a lot about the cost factor. I always tend to look at quality of life.

 

I am lucky.  My son has insurance that covers test strips and insulin.  We live in a province that covers his pump and supplies until he is 25. The only thing that we have to worry about paying for is a continuous glucose monitor and at the moment I am still working to convince him that he wants one.

 

I also have great credit and have been able to purchase his supplies out of pocket on my Visa card and then pay my Visa off when the reimbursement cheque came in.  Not everyone is so lucky.  In the case of this person who has diabetes (type unknown), there is some insurance but no direct billing.  All strips and medications must be paid up front.  This family does not have a credit card to use to help delay payment.  They have to look at paying everything in cash.

 

The cost of diabetes supplies was a huge shock to them.  The idea of paying $1 every time this person had to check their blood seemed ridiculous. Their answer was that testing would be cut down or non-existent once the doctors knew what was going on.

 

My heart broke.  Its not that simple especially if the diagnosis is Type 1(which is a strong possibility).  To stop testing puts this person at risk for so many things.  They do not yet understand how vital the information from that test strip will be for their daily lives.  They do not yet know that testing must occur before eating, during the night, before exercise, and even before driving.

 

This family now has to learn how to deal with a very serious disease that will bring stresses into their lives that were previously unknown.  There is relief for them in knowing what is going on health-wise but the financial burden is something that they have not anticipated.

 

We live in a country that is proud of its public health care system.  This family can recieve a diagnosis without worrying about spending a small fortune or having the proper insurance.  They cannot however anticipate any help to pay for the medications and supplies that will be needed to stay healthy after a diagnosis is finally made and that is the biggest tragedy of all.

Back in the Saddle

Diabetes moved away September first of last year.  Sadly this also means that my son did as well. It has been a struggle for me. I have had to adjust to a new role and honestly, I am not always sure what exactly that role is.  I am a hands on Mom and being a mom from a distance has always been a challenge but with a soon to be 20-year-old living in another province, I am slowly learning.

 

With the Christmas holidays, I got to be a hands on mom again! It was wonderful to have both of my boys with me. There was baking to eat, meals to prepare and even the odd bit of chauffeuring to be done. It was great.

 

There was also reminding about bg checks, counting carbs and doing site changes.  Diabetes was back as well. I was worried that I wouldn’t wake up for night-time tests but I did with no problem.  I would easily wake numerous times during the night and get up and check on my youngest son. I knew that he most likely was not testing a lot during the nights on his own so I decided to help him out. I woke every 2-4 hours and tested to give us some great data to look at.

 

Since my son was here, there was no need for a Wednesday night phone call or waiting for him to upload data.  I have a cable here, as well as his pump and meter.  We could sit down together and discuss the many highs because of the constant eating.  We could talk about basal versus bolus and see what may or may not need tweaking.

 

With each night test and each dead test strip, I felt grateful.  It seemed weird to walk into his room and test, knowing how many nights I hated doing just that.  This time it was a privilege. I was helping my son. I was giving him a break and keeping him safe while he was under my roof. I wondered if his wife will one day help him this way? I have no idea. He told me that he has a girlfriend now. I wonder what she knows about his care? Knowing how private my son is, I am guessing that she knows next to nothing. That’s okay for now.  When she is important to his life and worthy of his deeper affection, she will learn.

 

Until then, I will test him at night when he is with me. I will be surprised how quickly we both fall back into old routines. I will remain amazed how quickly time flies and how much my children have matured. I will be grateful for the ability and the opportunity to help my son if only in small ways now.