Tag Archives: diabetes support

You really do make Friends For Life

barb and jo 2015

This past weekend I had the honor of being able to take part in the Children with Diabetes Friends for Life Canada Conference.  Being asked to speak to attendees truly is an honor that I never take for granted.

For me, Children with Diabetes (CWD) has been a lifesaver and I don’t mean that lightly.  In 2000, my youngest son was diagnosed with Type 1 diabetes at the age of just two years.  I was terrified.  I knew no one else with a child with this disease.  Our clinic gave me the phone number of one other parent.  She was just as new at this as me and lived an hour away.  I had no immediate family nearby.  I had amazing friends and kind in-laws but I still felt alone.

When my son was diagnosed we didn’t have internet. That sounds strange today when we have Wi-fi in our cars but in March of 2000 this wasn’t the case.  Our computer was used to type up documents and for my older son to play games.  By the fall of 2000,  my mother had convinced me to try this new thing…dial up internet.  At that moment, my world expanded.

I had been fighting trying to get a 2-year-old to eat after he had had his insulin.  The results were exceptionally stressful for everyone involved.  There were a lot of tears.  A search for “parents of children with diabetes” lead me to an email support list.  I joined and posted my first question…”how do I get my son to eat breakfast after I have given him his humalog?”  The answer was instant.  Two women replied…”Don’t inject him until after he eats then only give him insulin for what he ate not what you wanted him to eat.”

The answer was simple.  It had been suggested to me by my clinic but when it came from these two  women it finally clicked.  Fifteen years later, I am still friends with one of the ladies that replied.  We have met in person and I have been able to thank her for changing my world.

From that moment forward, I became a part of a community.  We cheered each other on and debate certain issues. We shared new technologies and tips that helped to make our lives easier.  Everyone involved had lived the same life at some point.  We shared hopes, dreams, and frustrations. It was (and is) the most amazing group of people whom I ever had the pleasure of interacting with.

Over the years, I have stayed in contact with many of them.  We have reached out to each other in private emails, text messages, phone calls, and in person visits.  When you  attend a Friends for Life event it  truly is a large family reunion.  It is time spent with amazing people who have been in my life for over 15 years and have made a profound difference to it.  They have motivated me and encouraged me.  When we get together, it is as if we have never been a part.

Going to a Friends for Life event is a chance to reconnect with old friends and make new ones.  There are so many names that I recognize at registration that I get to put a hug to when we meet.

It truly is a gift to be a part of such an event.  I treasure every minute and hope that everyone gets the same chance at one point…to find amazing friends and incredible supports to help you through this journey of life with diabetes.

 

Its the most wonderful time of the year!

I am trying to be calm, but I am so terribly excited.  I have gone over my presentation for one last time.  I am thinking about starting my laundry and finding a suitcase.  Inside, I feel like a child getting ready to head to Disneyland tomorrow.  Most people would think I am crazy.

I will be spending most of my weekend inside a hotel.  I won’t be sharing that time with my partner.  We won’t be enjoying a private, romantic getaway.  Why would I be so excited?

Because this weekend is special.  This weekend has taken two years to plan and  arrange.  This weekend I get to spend time with some of my absolute favorite people on the planet.

I will be with  friends who have been there through thick and thin.  They have encouraged me and given me the kick that I have needed through the highs and lows of life over the past 15 years. They are my diabetes family.

I truly consider it an honour to be able to be a part of the Children with Diabetes Friends for Life Canada conferences.  I know how important these conferences are for families so it pained me a few years ago when I found out that there would be no more conferences in the immediate future.  With the work of many incredible people, we were able to change that.

This weekend, CWD will return to Canada after a brief hiatus.  Families have been talking about it since the end of the last conference.  I am so excited for them.

Many people don’t understand why I get excited about this conference.  They figure it’s just the time away or something like that.  They are wrong.  This is a time, an event, at which I can give back.  I can share what I have learned over the years with families and in return I get smiles, hugs and new friendships.

To sit in a hotel filled with people who have experienced what you have been through is a huge gift.  Each time that I am able to share in that experience, I consider myself to be the luckiest person on the planet.  It brings a song to my heart and a smile to my face to know that I get to be a part of something so incredible!  Have to get some laundry done and get packing!!FFL-Canada-2015-450

 

Dealing with Diabetes Online Burnout

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Its an interesting topic…burning out from your social support network.  It sounds silly but it happens. It has happened to me many times.

I first entered this world 15 years ago.  I was very alone and I found an online community that let me know that other people knew exactly what I was going through. Over the years, there would be squabbles but in the darkest hours there was always support.

I would step back and remove myself from certain groups.  I would feel attacked and even though I knew that some of my core support were there. I would step back.  I would unplug.  I would disconnect.

15 years later there are so many more ways to connect to people online than I was using back then.  The mailing list that was once my lifeline has been replaced by Twitter, Facebook and other outlets.

As the way we connect changed, so have my connections.  I offer advice now and then and provide support through Facebook groups. I share Tweets and take part in blog weeks. I post to my own website and Facebook page but not the extent that I once did.

Am I gun-shy because of the attacks I have taken? No, that is not it.  I have taken some vicious attacks, have shaken my head, and simply continued with my life and my work. Sometimes that has been easier said than done but the DOC has given me a core group of people who always ground me and remind me of my truth.

So how would I advise people to handle Diabetes Online Burnout?

  1.  Walk away.  It sounds easier than it is but seriously, sometimes we need to unplug, unsubcribe, un-visit places that are hurtful for us.
  2. Find your core peeps and keep them close.  Whether you frequent Facebook groups, Forums, or Twitter, you will find a group of people who click with you.  They understand you and you understand them.  Savour and work on that relationship.  They offer real friendship.  Remember that.
  3. Don’t take it personally.  You can’t tackle every issue.  You won’t be an expert in all realms. Its okay not to be a part of every battle.  Offer whatever support you have available even if its just a retweet, but don’t allow yourself to feel that you have to do more or that you aren’t doing enough. You are doing what you can and that’s amazing!
  4. Its not a contest.  If you make a difference in one person’s life, you are a super star! There are many people in the DOC that we would love to get to know better but out there, someone really wants to know you better as well.  Everyone is amazing and has something to contribute.  Don’t feel that you are any more or less than someone else.
  5. Make time to enjoy the outside world.  There is more to life than the online world.  We can become enamoured because we have found a place where people “get us” and then we are devastated when someone doesn’t. Take time each day out for your family, your pet, and for YOU!

Burnout isn’t a bad thing. Its just a time to regroup so that you can move forward stronger and more confident than ever!

 

What a wonderful community to have to be in!

When my son was diagnosed with Type 1 diabetes it was one of the darkest times of my life. I was scared. I felt terribly alone. I didn’t know what was happening or how we would cope.  I was overwhelmed and unsure.

I left the hospital terrified that I would  somehow do this wrong. I eventually called a lady whose daughter was diagnosed the month before my son. Her little girl was a bit younger than my son but we had a lot in common.  We lived in different communities however and it would take years before we actually met face to face and become good friends.

In the meantime, I struggled. I stumbled. I am sure I made mistakes. I tried. I cried alone in the dark at night not sure of how I would make it through but grateful that my son was alive and knowing that failing or stopping was not an option. I had a job to do and somehow I would do it.

My son’s diagnosis happened  in the beginning of the  year 2000.  We had survived the Y2K scare only to land in a new nightmare.  We had a computer but this thing called the “internet” was interesting but new to us.  With prodding from my mom that it would make keeping in touch with family easier, I finally broke down and ordered our first dial-up service.

After a bit of playing around, I stumbled across this place simply called “children with diabetes“.  In a few more keystrokes, I was hooked up to a group of strangers who would come to know more about me over time than many of my own family.  They would be there in the dark of night and share the brightest of days.

Over the years we would share our personal lives as well as the highs and lows of diabetes life. We would talk treatment options and share opinions.  We would get together in real life and instantly share hugs, meals and a warmth to be found nowhere else.

For me this was the beginning of my exposure to the Diabetes Online Community.  It was a place where we, as parents, could share and learn.  We moved past the awkwardness of telling the people around us about our “online family” that we have never met in real life.  We knew just how real this online family was and how strong the bond was. We knew that they were there for us no matter what.

Today, this online community has grown.  The advent of Facebook and Twitter has expanded the community.  We have been able to come together with more adults living with Type 1 diabetes and those with Type 2 diabetes.  The bond and the generosity has someone managed to equally grow.

I have seen the Diabetes Online Community (DOC) reach out to help people who have run out of test strips. I have watched as they have helped to raise funds for families who were out of work and just needed a little help to cover their light bill this month.  I have seen money raised to help a family struggling through the loss of the prime income earner due to terminal illness.  I have seen them jump to the aid of members who have lost everything due to fire.  There is no boundaries to the help they will provide and no borders stopping the support.

The support is not always about money. It’s not always about a cyber shoulder to lean on.  The support can also come in technology.  The community has always been a breeding ground for innovation. From the early days of creating a headlight for parents who were doing night tests to the most recent creation of the “Night Scout” for parents who wish to have access to CGM data through cloud technology. It is amazing.

While I am fortunate not to have had a lot of illness in my family, I remain forever grateful to have landed in a community that contains the most generous and true friends that a person could ever ask for.  A place filled with family. Family picture

Depression and Diabetes

I don’t want to get out of bed. What difference does it make any way? I am tired. I don’t matter. I can’t take it any more. I can’t lift this dark cloud that hangs over me. I am poor company. My family is much better off without me. I don’t make a difference in the world. I am just taking up space. No one would miss me. What is the point?

Does any of that sound familiar? Many of us have had some or all of these thoughts to varying degrees. Yesterday’s passing of Robin Williams showed us that money, fame, and talent do not protect you from the devastating reach of depression. Sadly, if you live with diabetes, you are also twice as likely as the rest of the general population to be effected by depression.

The Diagnostic and Statistical Manual of Mental Disorders characterizes clinical depression “as having five of more of the following symptoms during a 2 week period and represents a change from previous functioning with at least one of the symptoms being a depressed mood or loss of interest or pleasure.  The other symptoms included a diminished interest or pleasure in almost all activities most of the day, may appear tearful,  significant weight loss or gain, insomnia or hypersomnia nearly every day, psycho-motor agitation or retardation never every day, fatigue or loss of energy nearly every day, feeling worthless or excessive or inappropriate guilt, diminished ability to think or concentrate, or indecisiveness, recurrent thoughts of death, recurrent suicidal ideation without a specific plan or suicide attempt.  These symptoms are not brought on by medication or other physical condition and impair ones social, occupational or other important areas of functioning. ”

Everyone has those days when the world seems dark and bleak.  People living with diabetes however are cautioned by experts to watch a bit closer for signs of clinical depression in their own lives.  Gary Scheiner mentions this issue in his book “Until There is a Cure“.  He and others note that the pressure that comes with diabetes care, the need to “get it right”, and be the perfect diabetic can lead to failure and a deep sadness that can spiral into clinical depression.

We are also reminded that the people with diabetes are not the only potential victims.  Parents of children with diabetes may also find themselves in a pit from which they cannot see the light. We often experience our own guilt for first somehow allowing our child to develop this disease. There is the guilt over nagging them to test or inject.  The feelings that we are robbing our children of a “normal” childhood by forcing them to take responsibility for their diabetes care too soon can be overwhelming. The list of reasons for sadness go on in both those living with diabetes and those who care for them. The challenge is to recognize the symptoms and get help.

The Mayo Clinic feels so strongly in this that their website specifically cautions people living with diabetes to be very alert to signs of depression.  If you feel that you are suffering from clinical depression, please see your doctor.  Just as you take insulin to deal with the imbalance in your body thanks to a non-functioning pancreas, it is important to take medication that can help to work with brain chemistry that has somehow found itself out of balance as well.

Counseling, therapy, and even life coaching can help to deal with the daily stressors of diabetes care.  They can help you to deal with triggers and create coping strategies but they will not fix the chemistry if you suffer from clinical depression. If you are struggling with a diabetes diagnosis, please look for support from others. If you feel that the depression and sadness has become prolonged or overwhelming, please see your doctor. Together you can  create a plan to help you find your way forward again.

robin williams
Thank you for the years of enjoyment and sharing your talent. May you find the peace in death that you were unable to find in life. RIP

 

 

Feeling Alone?

 

 

alone with dSadly I think that at some point everyone feels alone and isolated.  When you first hear that diagnosis of “diabetes”, you may be overwhelmed, confused, and dazed.  What does it all mean? Once you begin to realize what it means, often you then feel alone.  No one else truly understands what you are going through.  It can be terribly depressing and isolating.

If you are a parent, other parents do not understand why you hover over your child so often. Why is it that you don’t sleep at night? The child is controlled isn’t he/she?

As a person with diabetes, people may question your meal choices.  They may wonder if you are “faking it” when you tell them that your blood glucose level is off and you can’t be involved in that activity at the moment until it settles back in range.

No one really understands your worries.  They can’t see diabetes and they think that it’s not a big deal.  They seem to suggest that your fears are unfounded. You are just being paranoid.

Then you meet another person with diabetes…a total stranger quickly becomes a long-lost friend.  When you speak, you find yourself lost in a world of like–they test like you.  They count carbs like you.  They know what a high feels like.  They understand not being able to do anything when you are low.  They know what a pump is and have a glucometer that they carry with them! You belong!

For someone who doesn’t have diabetes, this may sound a bit extreme.  If you live with diabetes, this is very familiar.  I remember the first time I spoke on the phone with a stranger who had a daughter diagnosed with Type 1 diabetes the month before my son.  We talked for an hour.  She was a complete stranger but she understood dealing with lows in a toddler. She had desperately searched for a sugary treat that her baby would eat at that critical time as well. She got it! She was living it too.

The first time I went to a diabetes related event, the emotions were no less intense. Everyone had a glucometer.  Everyone knew the carbs in each food item or at least offered their best guesses.  There were insulin pumps and needles brought out with the food. This was “normal” and it felt wonderful and safe.

Meeting people online can also be helpful.  To reach out and know that there is someone there who gets it and has been there can be sanity saving.  The very first time I reached out online to a group from the Childrenwithdiabetes.com website and received help…well my world changed forever.

Today there are many websites and social media groups that offer support.  They will answer questions, share information, and understand what you are feeling.

For months, I have been thinking about these two things…social media support and real life interactions.  How would you best combine them? Ideally you wouldn’t.  Everyone would be able to gather at diabetes events, feel the love, and be refreshed but in real life that isn’t always possible.  What could I do? I could host a Google Hangout!

Google offers its own unique way of gathering people called a hangout.  The idea is that a group of friends, family, work colleagues, or strangers, can get together in realtime, using audio and video to talk.  I therefore thought it would be a perfect place to host a virtual support group meeting.

If you are feeling isolated and alone, or just want to enjoy some conversation, grab your headphones and microphone and join me in Google Hangout on Tuesday April 29th at 7pm EST. If people are interested and enjoy the opportunity, I will work on making this a monthly event.

So mark down the date, check out the link, and join me…or let me know that you wanted to join me but something came up and you want to be a part of the next one!

5 Things I learned about me Over the past 14 years

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.

In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…

1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.

Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.

Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.

2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.

After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.

Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.

I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.

3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.

I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.

4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.

Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.

And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.

cat

 

 

An Organization that Changed my support network FOREVER

As Diabetes Awareness Month rolls on, the prompt for yesterday was “organization”.  I can’t say that I have ever been “organized” when it comes to diabetes.  There are diabetes totes, diabetes organizers, and diabetes drawers but organized they are not! Lucky for me, the first thing I thought of when I read “organization” was the groups that have had an impact on my life.  The biggest of course being this organization….

cwd

 

 

 

 

 

Today’s prompt is “support”…once again the same image prevails. I do not ever dare to think of where I would be without the amazing support and friendships that I have made thanks to the original Children with Diabetes parents email list.  One email asking for help brought me friendships and support beyond my wildest dreams…

Alex and Liam at beach Kim and SharonLiam and Jesse

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Scott and Stacey

Social Media and the Monster Under the Bed…What a great watch!

I just watched the Friends for Life Video of the seminar on Social Media and The Monster Under the Bed.  I had wanted to catch it live when it first happened but of course I forgot that it was ongoing.  I was really excited when I saw someone had posted a link that would allow you to watch it again…and then I lost that link.  Needless to say, when I saw it posted on a friend’s Facebook page I pressed play instantly!

I was happy, but not surprised to see Jill Weissberg-Benchell note immediately the importance of the Diabetes Online Community.  (I have been privileged to spend time with Jill at CWD conferences here in Canada). She noted the value of a group of people (real or online) who “get it”!! She further told her audience that 97% of posts onilne are accurate so those who are afraid of the “bad stuff” that they may find in social media circles are really only afraid of 3% of what’s out there.  That is pretty impressive statistics.

The panel further noted that the DOC (Diabetes Online Community) is not about medical advice, its about support! Its about someone to talk to a 2am when you are awake and dealing with a low. Its about someone who knows how to keep an infusion set in place when swimming.  Its about the little things that you don’t always think of asking your diabetes team.  Its about instant access to information and help.

The experts were asked about how to involved lurkers in the online community and again great advice was given–the fact that they are reading means that they are learning and engaged. I have seen this often in groups that I have been a part of.  A small number of people seem to do all of the posting or answering but every once in a while, you will see a person pop up and say “I don’t post often, but thank you so much for all that I have learned from you! Just hearing others going through the same as me means so much!” Get the message out there and people will listen.

But then came the question of how do you establish what a reputable blog or website is? There is the HON code which requires that health related sites meet specific criteria and registered sites are monitored regularly (sites like www.childrenwithdiabetes.com and www.diabetesadvocacy.com are recognized). They also suggest that you consider sites that have been around for a lot of years (just so you know, www.diabetesadvocacy.com has been around for about 12 years…wow where did the time go??).  Finally, to look at sites or blogs that are recommended by friends or other reputable sites.  To involve your health care provider, you can even give this list to them so that they can share with others.

All in all, Korey Hood summed up the role of the DOC best when he said that the online community is like your basal insulin. It is a constant presence that is there for you at all times.  “In real life” interactions are big boluses of insulin. They are amazing surges that help us to keep going until we meet again.

I am so glad that I had the opportunity to view this video and would encourage others to do so as well. There are many great exchanges including a debate on parent blogging when panelists actually disagree (see the post at Our Diabetic Life for more details).  This video shows that the DOC is here to stay so adjustments and acceptances need to be made.

from www.diabetesmine.com
from www.diabetesmine.com