The Concept of Time: Reflections after this Month’s JDRF #t1d Support Group

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What happens in Vegas, stays in Vegas.

Ah that old mantra meant for bachelor/bachelorette parties that leave little, if any, scandalous photo evidence.

That motto serves as the unspoken pact between the group. Everyone knows that anything that happens during Vegas time is off limits.

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Same goes in our JDRF #t1d adult support group. Logic would tell you it’s hard to trust a bunch of people who for some, are often strangers, but there’s something about these people that make me feel safe.

There are times where I ask myself, “Why am I here? It’s out of the way and really, I think I’m managing okay.” Sometimes I even proclaim, “Nah, I don’t need to come back”. But EVERY. SINGLE. TIME…I end up returning.

 

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The benefits can’t be explained well, because I can’t even describe the feeling I get. It’s just comfy. And nice. And I can say whatever without explaining. And I can be totally distant and quiet, loud and angry and it doesn’t matter. There’s really no judgement.

I’m sad to hear that these types of group don’t exist everywhere. How can we change that? What is the best way to make sure that everyone is able to be part of something like this?

Let the month of diabetes awareness begin!

If ever there is a time to get out there and connect with fellow t1d’s, it’s this month. There are loads of events happening in Toronto (and across Canada of course) and I wanted to share with you some of them so you can book those days off and meet up with your friends who just ‘get it’.

The earliest event is coming up on Wednesday:

I’ve interviewed both Michelle and Sebastian and trust that this talk will leave you feeling so much better about your diabetes management.

Call Calgary home? Why not mix and mingle with Connected in Motion?

Their next event is on Nov. 4th. Click here for more details! 

Sports your thang? Check out this event. Toronto Argos dress in blue too. #twinsies

And on World Diabetes Day, Nov. 14th, the annual Type 1 Update hosted by Animas will take place once again!

I go to this event every year (I went in the spring) and I think this may be the first one I miss which makes me really sad. I’ll be sure to cover the event in whatever way I can though. This 1/2 day has always lifted my spirits and made me feel more confident. I hope you can attend this one! Don’t forget to RSVP to Robin.
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There’s so many more events but here are the highlights. Feel free to comment and share any other events that you know of this going on this month.

And one more thing! What’s an awareness month without some profile pic changes? Check out this awesome campaign #T1DLooksLikeMe and get yours here.

XO

Jess

JDRF Ride for Diabetes Research: How Far Would You Go?

These fundraising events are a great excuse to get off early, push back the paperwork and all the while make your company look good. After all, fundraisers are fundraisers right?

Well no. Actually that’s complete bull. Maybe you don’t know much about type 1 diabetes or maybe you do. If you chose to participate in this year’s JDRF Ride for Diabetes Research in Canada I’m going to have to tell you that what you did in one afternoon created great potential.

It gives people like me hope. I see people who often don’t have any affiliation with the cause, listen with the ears open and understand and hear first hand what it’s like to live with this disease day in and out. You sweated and pedalled with hundreds of others. And in that process of moving each pedal forward, it has brought hope to so many like me.

After so many years, my doctor confirmed to me recently that I do, indeed have Type 1 diabetes (not any other kind, there are many!). And when I saw all the action that took place at the Metro Convention Centre, I got damn emotional.

It just goes to show that people have good in them. They want to help. Physical activity breeds power and positivity. Thank you to all who participated.

Recently I have been feeling so defeated. So tired. So mentally at the end of my rope. Being able to witness events like these gives me that push to keep going. To not give up. To remember that there are people out there who are willing to give their time (their most precious commodity) to help people they don’t even know.

It means so much to me that you rode your heart out.

XO,
J

Diagnosed with T1D on Christmas Day. Shawn Shepheard shares his story at JDRF conference in Regina

IMG_0613   Imagine being diagnosed with type 1 diabetes on Christmas Day. Can I get a refund on this not-so-sweet gift? That’s what happened to Shawn Shepheard. At that time he was 30 years old, engaged to be married. If you’re looking for inspiration on living well with diabetes, this is it. He recently shared his story and how he turned it all  around at the JDRF conference in Regina. Read the full story by The Star Phoenix here. Xo, J

Free Celiac disease testing in Ontario for people with type 1 diabetes

 

 

 

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Live in Ontario? Live with type 1 diabetes? There’s FREE Celiac disease testing right now. 

A list of participating locations below.

TORONTO and GTA:
The Hospital for Sick Children
Mount Sinai Hospital
Charles H. Best Diabetes Centre
Credit Valley Hospital, Trillium Health Network
Mississauga Hospital, Trillium Health Network
St. Michael’s Hospital
Markham Stouffville Hospital
Mount Sinai Hospital
Women’s College Hospital
Sunnybrook Hospital
The Scarborough Hospital
North York General Hospital

LONDON, ON:
Children’s Hospital, London Health Sciences Centre
St. Joseph’s Health Care London

KINGSTON, ON:
Kingston General Hospital

OTTAWA:
The Ottawa Hospital

WINDSOR, ON:
Windsor Regional Hospital

HAMILTON, ON:
McMaster University Health Sciences Centre

Call (416) 813-7654 ext. 201713 or email cd.diet@sickkids.ca to find out the closest testing facility.

They also started up a Facebook page. Check it out here.

Official website here.

XO,

Jess

Opinion: Being diagnosed with type 1 diabetes as an adult

My diagnosis smoothie is a not-so-healthy mix of guilt, frustration and…wait for it..an additional hit of more guilt.

At the last JDRF adult support group meeting I attended we got into the topic of what it’s like to be diagnosed as an adult. I was pointed out by one of the organization’s reps as someone who was diagnosed much later in life (29).

I was happy to share my thoughts on the issue, but more importantly, incredibly thrilled that someone else in the room was able to chime in with me in feeling the same.

JDRF in the exhibit hall.

JDRF in the exhibit hall.

Guilt: I haven’t lived with type 1 diabetes for very long. I’ve passed my two year mark but that’s it. The majority of t1d’s were diagnosed so much earlier in life. What right do I have to complain when I lived such a huge portion of my life free from the worries this disease brings?

I’m hyper aware of this fact and so when I’m around other type 1’s or even people who are curious about what it’s like to live with t1d, I watch myself carefully. I don’t ever want others to feel like I’m not acknowledging their long struggle with this autoimmune disease.

I’ve been through my fair share of struggle, heartache and pain. This did not happen to me at a time when I was still growing. Why can’t I get this down? Why do I feel so incredibly helpless at times? I have often felt guilty for feeling this way, not for myself, but for the loved ones around me who feel the ripples of t1d.

Frustration: Trying to explain t1d and that I was diagnosed at 29 can be a pain. As an adult, coupled with the misconceptions about the disease, I feel (FEEL, not that it’s in any way reality) like there is a judgement put on me when I proclaim I am diabetic.

“She must not have taken care of herself.”

For me- I equate the above statement with being lazy about my health. I know that’s not the case, but for some reason I cringe to even think that the word ‘lazy’ can be associated with me. I’m a self-confessed workaholic (but I’m getting better). Prior to being diagnosed I was the girl who stayed late at the office and checked her e-mails in the middle of the night. It has been incredibly difficult to own my disease because of my Type A, work-work-work mentality I have carried with me for many years.

A little more guilt: I know there are people in this world praying for food, water, the end to violence. I live in a place where I have access to insulin, doctors and amazing organizations like Connected in Motion. In the grand scheme of things, I know I have it good. I am free to live how I want, pursue my dreams and have the hope of a long life ahead of me. There’s a tinge of guilt for me when t1d gets me down and I complain or make note of my annoyance.

I left that meeting feeling a lot better about being diagnosed much later in life. I always knew it, but this time I felt it- I was not alone in my thoughts and emotions.

Irregardless of what struggle you face (a disease, a troubled relationship, a career dilemma) it always feels good to know you don’t walk the path solo. Others have prevailed and so will you.

CONCEPTT type 1 diabetes pregnancy trial participants get 50/50 chance of free CGM use. Do you qualify?

Type one diabetic? Pregnant? Planning on it?

Qualified trial participants will get a 50 per cent chance of free continuous glucose monitoring (CGM) during pregnancy.

The trial is called CONCEPTT (<–that’s not a typo, there are two T’s).

The goal of this study is to compare the effects of adding CGM to standard therapy versus standard therapy without CGM.

| CONCEPTT trial brochure |

What is the CONCEPTT trial?

  • Study is a randomized, open-label controlled trial funded by JDRF
  • Launched a year ago in Canada, UK, Spain, Italy and the US
  • Qualified participants have a 50/50 chance of receiving a CGM sensor 
  • Those who receive a CGM will use it until 24 weeks after enrollment or if you get pregnant, until completion of your pregnancy
  • You do not have to pay for the sensor & the rest of your care will remain the same
  • You will have the same number of visits to your endocrinologist as usual
  • Blood will be collected and if you are pregnant and deliver, blood from the baby’s umbilical cord will be collected and tested for information about the baby’s insulin levels. This does not hurt the baby.

| CONCEPTT trial brochure |

Participation is 100 per cent voluntary. You may leave at any time without affecting your care.

Do I qualify?

  • Women must either be planning to conceive within six months or be in early pregnancy, up to 13 weeks.
  • They also must be willing to wear the CGM device 24 hours/day. Read more here.

How to find out more

Speak to your own caregiver or contact:

Investigator Dr. Denice Feig at 416-586-8590 or co-ordinator Ms Barbara Cleave at 416-586-8590 ext. 2622

Mount Sinai Hospital

60 Murray St., 5th floor

Toronto, Ontario

Read more:

Optimizing pregnancy outcomes for type 1 diabetes ‘moms-to-be’

I met the co-ordinator of this study, Barbara Cleave at the JDRF Infosium in March. Read my post on the event here

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Smashing meters and eating ice cream: Toronto JDRF adult support group does things Joe Solowiejczyk style

A blood glucose meter that was demolished by a meat mallet.

I’m home from a type 1 diabetes support group meeting where I was encouraged to eat ice cream and destroy a blood glucose meter with a meat mallet.

The idea to do this came from popular diabetes speaker Joe Solowiejczyk. He closed the show at the JDRF infosium in Toronto recently.

Read my post on the event here

During his talk, Joe explained what he calls “diabetes depression days”.

He calls in sick, plops in front of the TV to watch his favourite movies, eats ice cream and spends time sulking about his diabetes.

Our facilitator Ana used Joe’s diabetes depression days as motivation.

Last night, she and outreach manager Sherry greeted us with ice cream! This may be a generalization but I’m pretty sure everyone was happy about it.

 

Ana also encouraged us to roll up our sleeves and break an old meter to bits. She brought rolling pins but in the end, her and another attendee hammered the meter with a meat mallet.

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What’s the craziest thing you’ve done at a type 1 event or meeting?

Although I didn’t take part in the meter hammering, I could see its therapeutic benefits. And the ice cream (for me dairy-free), well… I’m going to advocate for that to be a regular part of future meetings.

Tummy happy, waist elastic on pants (not so much),

Jessie

 

5 lessons I learned from the JDRF infosium in Toronto

photo 5-21. Listen to your body and trust your instincts. 

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Beauty and the Beast actor and guest speaker Austin Basis was extremely active growing up.

He played basketball, baseball and hockey. He wanted to be an MLB player.

Sports taught him to always be prepared and to learn and acknowledge the signs his body gave him.

2. The bionic pancreas is giving people hope.

Dr. Steven Russell had the audience in applause after this slide:

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The closed-loop artificial pancreas blood glucose control system continuously monitors blood glucose levels. Fast-acting insulin and glucagon gets delivered based on a computer algorithm.

So, no more carb counting or guessing what stress and exercise would do to your bg’s. This device does all the work. Russell said the ambitious date of release to the public is 2017. Find out more here.

Click on any photo and browse

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 3. It’s 100 per cent okay to acknowledge how difficult diabetes is. 

Closing speaker Joe Solowiejczyk is a nurse, diabetes educator and family therapist. He’s been living with type 1 diabetes for over 50 years.

I’ve heard Joe speak before and although I’ve heard his sentiments before, it was so nice to hear them again.

Diabetes sucks. It’s like a full-time job. Yes Joe!

My favourite quote of the night by Joe was this, “I am exhausted. I hate having diabetes. I love being alive.”

We are all troopers and need to remember that.

4. People will be ignorant. Rise above it. 

I used to get mad. Very mad. Steaming mad really when I saw a joke about diabetes or when people assumed I didn’t take care of myself or ate too much sugar. The rage I felt was downright scary, and it would quickly spiral into moments of deep sadness and frustration.

Joe made a great point about those who are ignorant towards type 1 diabetes.

Can you say that you have NEVER made a comment that might have shown ignorance about a medical condition?

What do YOU know about other health conditions? Some people are ignorant. Others are just stupid.

Not knowing about type 1 diabetes hurts because it’s personal.

Brush it off. Educate if you want (I try to!). Focus on the positives and spend your time with people who do the same. This has been one of the greatest lessons I’ve learned from t1d.

5. Over-estimate the demand for diet pop. Here’s what was left at the end of the night.

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Connect.

Check out all the tweets from the event via Connected in Motion’s Storify

Austin Basis | Website | Twitter | Facebook |

Joe Solowiejczyk | Website | LinkedIn |

Dr. Russell Stevens | Bionic Pancreas |

JDRF Canada Infosiums

JDRF Canada | Website | Facebook | Twitter |

Canadian competitive speed skater Mallory Zorman starts new blog about type 1 diabetes

The name of her new blog?

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Q&A with Calgary’s Mallory Zorman

 Motto: “Diabetics can reach a high level in sports despite having the disease.”

photo 1-1.PNGWhy blog? “I hope that I am able to reach out and help other diabetics. I hope they can see how I’ve led an active life and know that they can do the same. From the few blogs I’ve recently read (including yours) I’ve learned a lot and been inspired – which is saying something considering I’ve had diabetes for 12 years.” Thanks Mallory for the lovely compliment! 

photo 1What’s the hardest part of diabetes? “There is no break. I work hard at school for 5 days, then it’s the weekend and I can take a break. Diabetes isn’t like that. It’s a 24/7 job and some days I don’t feel like putting in the effort.”

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What has diabetes taught you? “T1d has taught me so much. If I had to choose one thing, I’d probably say that it has taught me so much about my body. I can estimate my blood sugar very accurately based on how I feel. I know what foods make me feel good (brown rice) and which make me feel really bad (cake), even if I do insulin accordingly.”

What have you learned on the ice that you take off the ice? “From the ice, I’ve learned discipline. This has also helped my approach to diabetes. Whether it’s listening to my coach, going to bed early or eating right, this is what is meant by discipline in sport. I’ve made sacrifices in order to become a better skater, but at the end of the day I don’t regret anything.”

Always on the move

Mallory is currently studying biological sciences at University of Calgary.

Recently she retired from competitive skating to focus on medical school. However, the 19-year-old will continue to lace up recreationally and coach.

This summer she is running her first half marathon and continues to enjoy road biking, hiking and inline skating. She’s active in every season and encourages others to do the same.

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Mallory has become involved with her local JDRF chapter and works for Medtronic on occasion attending infosiums and pump sessions.

Click on any of the photos and browse

Mallory Zorman’s Insulin on Ice blog | Facebook | Twitter | Instagram

Find out what she uses for diabetes management here.
Mallory, we look forward to your blogs. Thank you for sharing your story with us, Canada and the world.
J
All photos courtesy of Mallory Zorman