The Type 1 Update at Mount Sinai on World Diabetes Day

How did you spend World Diabetes Day?

I know some of you in Toronto area had your butts glued to the theatre seats at Mount Sinai Hospital, listening to Sebastien Sasseville.

ICYMI: Sebastien ran ACROSS CANADA. He crossed his personal finish line in Vancouver on World Diabetes Day a year ago. Has it really been that long?

He was one of the highlights at this year’s Animas Type 1 Update.

I wasn’t there (announcement-I’m moving! Second obvious announcement- I am up to my eyeballs in things to-do to make this move as smooth as possible).

Luckily, I was able to grab some snapshots of what happened via Twitter and Facebook. This event is one of my favourites and I have been to it EVERY TIME since I’ve been diagnosed. I was bummed I couldn’t attend this year, but happy that I could have a look into the speeches via social media.

Here’s a graphic I made from Seb’s speech. Thank you Sandy for the awesome tweets!

Sebastien Sasseville Quote 2

 

Here are some of the tweets!

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This one from Animas gal Sandy Struss.

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Lorraine is an RDE, CDE. Every time I hear Lorraine speak, I learn something a bit mind-boggling about diabetes. Here’s what I learned earlier last year at the same event:

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Temperature?! Cooking method? I knew diabetes was complex but had no idea these things effect your bg’s.

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Another totally “What the what” situation for me? The CGM which I have named Lumiere (because he lights up at night, my life and satisfies my Beauty and the Beast love awwwww), has been a real eye-opener for me.

There were some foods I thought were working with my body smoothly and others I thought I needed to stay away from. Lumiere let me look into what was happening in between the two hours pre and post meal.

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Now back to #T1Update15. The 3 S’s. L-R: Animas Tough Mudder champion Sandy, Sebastien and Master of Ceremonies Shawn Shepheard. Captain Steven C. Steele was on board too to talk about his piloting career.

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Lastly, a confession.

It’s been very very difficult to keep up my diabetes blog, Instagram, Twitter and Facebook. I do my best, but I have started my own business now which eats up a lot of my time.

I’ve really been consumed with guilt over this, but today I declare after World Diabetes Day that I shouldn’t need to feel so badly.

I am living out my dreams as an entrepreneur and not letting diabetes stop me in any way. Not letting my seizures take away my push for gold. Refusing to let my hearing impairment stop me from enjoying social events.

It may not be displayed on social media but this, I realized, is the best example I can be to others living with type 1 diabetes.

I’m doing what I want, making dreams a reality, being focused on positive friends and family. This month and further on I refuse to put myself down because I am doing everything I ever wanted-with a little insulin on the side.

If you ever need a reminder of how to live well with diabetes, get out there and attend events like this one. Be informed. Be empowered. Most of all, appreciate the time we have on this earth.

Given recent world events I think it’s safe to say we are all being reminded that life is oh-so precious and we need to enjoy all the life that we have.

XO,

Jess

 

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

The things I never thought. My Nike 15k recap, running with type 1 diabetes + other autoimmune fun

 

 

Source Nike Women Toronto Facebook Page

Source Nike Women Toronto Facebook Page

The Nike Toronto 15k took place a few weeks ago and I need to share with you some surprises that happened along the way. This was a great experience from my own personal health perspective in dealing with multiple autoimmune disease fun.

1. At the water stations, they provided Nuun. I have never used this before at a race but realized quickly that I needed it. According to the packet, each Nuun tablet has 13 grams of carbs, but was each tablet used per drink? I have no idea.

Lesson: Check to see what is offered at the race stations and try it out beforehand. My stomach doesn’t welcome everything with open arms so I lucked out that taking it in went smoothly.

Also, check if they water the carb drinks down (common practice). That can also mess up your calculations while you are pounding the pavement. Be assertive. Sometimes companies don’t like to admit how much they water down drinks but usually when you say your medical well being heavily depends on knowing this information (and it does), you can usually get a truthful answer.

2. Since I was on an island (Centre Island), it meant cooler temps with the water surrounding me. Add some nasty rain and chilly wind and it equalled out to be quite the bg dip before the race started. I downed a ton of carbs but nothing seemed to bring my levels up so I started a lot lower than I would have liked.

Lesson: Think of ALL weather factors and basically be a came and pack all your food, super extra food, if possible.

3. Take lows in stride. It’s easy to get frustrated quickly when you look down and see your CGM says….

Lesson: Enjoy the experience and think of it this way: You are running a race. Some people would never get the chance to do this, yet here you are, feeling the buzz of thousands around you getting active and building a sense of community. STOP AND TAKE IT IN.

Nike Women Toronto Facebook Page

Running where the planes take off! How cool is that!? Source: Nike Women Toronto Facebook Page

4. Okay, if I can help it, I rather pee in the bush than wait in line for the few port-a-potty’s that are out there on the course. I did not look as carefully as I had thought and when I crouched down a thorny needle-like plant went right into my inner thigh. Once I was done I quickly pulled up my pants and kept running but it hurt. A lot. Eventually it either fell out or I became numb to the pain. Either way…

Lesson: Pee carefully.

Nike Women Toronto Facebook Page

Nike Women Toronto Facebook Page

Overall, the race went well. I had to take some of my other neuro medication the night before (which makes me feel super lazy and feeling ‘hungover’ the next day) so I was thrilled with my efforts. And once I got into the groove… I took the time to stop and smell the roses.

XO,

Jess

 

Animas Canada has kindly chosen to support me with the Dexcom CGM as I continue to train for triathlons, cycling and running events. I believe in full transparency and appreciate that Animas Canada does not review or approve my blog posts. Please read the full disclosure here

Training this season with Lumiere, my continuous glucose monitor

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WHYYYYYYYYYYY!?!?!?

My mind screams it in anger. On good days, I yell it half-laughing.

It is the question I ask myself when I ate enough carbs to feed a small army before my workout and yet, here I go, tanking into low blood sugar abyss.

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This happens for mostly cycling and running these days. It seems like sometimes no matter what I consume, my body sticks its tongue out at me and says “Oh yeah? Watch this”.

I have purposely set my low alarm alert a bit higher so that I can be notified even earlier to try and adjust and avoid the lows.

Bonus? Drinking Coke. Mmmm I love regular Coke.

Minus? Frustration. The quick reaction to blame myself. I need to catch these sooner and just trust that hey, I’m doing what I can, and that’s all I can ask of myself.

These lows have changed how I train in that I carry more fuel (I am a human camel).

This season I realized how much I miss running with nothing. Just carrying absolutely nothing. No snacks, no belt, fanny pack, hydration pack. NOTHING.

To combat this, I found a loop near my house where I can set supplies down in a safe area and run free! The loops don’t bother me as I zone out when I run so this works for me. As for Lumiere, I do put him inside my running arm band (which I’m fine with). I feel seeing the same thing over and over is worth it to run without carrying as much and feeling that lightness.

I know they have golf carts that follow people around. Wonder if I can get some kind of contraption that does the same? I could carry my water, glucose tabs, bars, tester, CGM, insulin.

Am I dreaming? Maybe. But it’s fun to think about it.

XO,

J

Animas Canada has kindly chosen to support me with the Dexcom CGM as I continue to train for triathlons, cycling and running events. I believe in full transparency and appreciate that Animas Canada does not review or approve my blog posts. Please read the full disclosure here

Letting go of friendships after diabetes diagnosis. Q&A with Psychological Associate Michelle Sorensen

Q&A Michelle Sorensen

How do I mentally let go of some of the friendships that did not survive my diagnoses?  Still mourning, nothing left to say or do….

First of all, when someone is grieving they always have the right to distance themselves from those who cannot support them in the way they need to be supported. 

Sometimes it is not MORE support that is needed, but a DIFFERENT kind of support.  You can be surrounded by people but feel totally unsupported.

If being around someone who cannot support you in the way you need to be supported (with empathy and compassion) is upsetting, create distance when it is possible.  If you feel a little guilty doing so, don’t worry.  It is far better for you and for others if you choose a little guilt over a pile of resentment.

When angry, we do not want to turn against others (aggression) or turn inwards (bottling it all up). Asserting yourself may mean disclosing that you are hurt, disappointed or confused about their reaction. However, do not create expectations that this will change their behaviour. If you assert yourself, do it for you.  Even if the friend cannot respond with anything positive, feel proud of yourself that you were brave enough to be vulnerable and open up.  And then move forward and focus on building other relationships.

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As someone who is a long ways out of young adulthood and firmly entering middle age (!) I would advise to be careful about writing anyone important off completely.  The twenties and even thirties are full of major life changes and growth.  People are not the same (hopefully) at 40 as they are at 20.  I have friends who were amazing when I was diagnosed.  I still remember my friend Deb coming to get me from the hospital and to pick up my mom from the airport.  I remember my friends Diana and Jenn telling me that when they heard I was admitted to hospital and diagnosed, they cried on the phone together. 

I still tear up when I remember the relief of knowing some of my friends understood the severity of my situation.  However, I had friends caught up in their own lives who made insensitive comments, minimized diabetes, or hurt me in some way.  Some of them have had tough life experiences of their own since then or simply matured and now are so supportive.  I am really glad I kept them in my life, but just adjusted expectations or took breaks as needed.

I also know looking back, that being in my twenties made it hard to incorporate chronic disease into my identity because I was still figuring myself out!  When my husband came into my life, he challenged me to be less of a people pleaser and to look out for myself more.  His support and insight really helped me to realize that my expectations of others were largely a reflection of how much I expected out of myself.  Now that I am more compassionate towards myself, the behaviour of others impacts me less.  I always encourage my type 1 patients to “create more space in their lives for diabetes”…. being less stressed and less rushed, juggling fewer balls…  this all helps us to have more patience for diabetes and for other people.  It may be extra important for people with diabetes, but it is actually true for everyone.

Diabetes has given me so many life lessons.  I sometimes joke that I would be quite happy if I was cured now and could hang on to the life lessons and give the diabetes back!  As much as trying to manage the diabetes drives me crazy at times, I seriously doubt I would be a happier person if I had never been diagnosed.  Having a perfect HgA1C does not make people happy if they never worried about it in the first place!  So I will take my imperfect pancreas and make the best of it.

Thank You Michelle Sorensen

This is the third and final installment of my Q&A series with Michelle. Thank you for all of your time Michelle. You have taught me so much and hopefully others reading.

If you missed the first two, here they are!

Mentally overcoming the diabetes stigma. Q&A with Psychological associate Michelle Sorensen

What are the challenges specific to adults diagnoses? Psychological associate Michelle Sorensen answers.

XO,

J

What are the challenges specific to adults diagnoses? Psychological associate Michelle Sorensen answers.

Photo provided by Michelle Sorensen

Photo provided by Michelle Sorensen

After I saw Michelle speak at the Animas Type 1 Update this year, I knew I had to connect with her.

She was able to articulate so much of what I couldn’t say about my emotional journey with type 1 diabetes. One of the best takeaways I had from that event was this short video she shared. If you haven’t watched it yet, please do.

Michelle has been kind enough to answer some of my most burning questions. Here is the first one!

What are the challenges specific to adults diagnosed with T1?

I think there are some very unique challenges.  It seems to me that with adult Type 1’s, there is an increased risk of misdiagnosis. That being said, there is no doubt that T1’s of all ages are at risk of a missed diagnosis.  I meet so many T1’s diagnosed as adults who were clearly more likely to have T1 than T2 based on age and risk factors, but are started on oral medications rather than insulin because they are labelled as T2.  The LADA (latent autoimmune diabetes in adults) cases are even more likely to receive this treatment and are often told their blood sugars are not high enough to be T1.  This is so frustrating because early intervention can really ease the physical and emotional suffering for people diagnosed with T1.

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I think for a few different reasons these traumatic and dangerous diagnosis stories occur more to adult Type 1’s.  For children diagnosed with diabetes, the alarms bells go off and they are usually treated with insulin right away once they are diagnosed.  For those fortunate enough to have a children’s hospital, treatment is especially prompt and appropriate.  Conversely, I have met young adults sent away from a physician with high blood sugars either on oral medication or simply given a referral to a diabetes clinic.  This lack of proper medical attention adds to the confusion, isolation, and psychological trauma.

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So many adult T1’s are starting their diabetes journey with a lot of grief and loss but without the right kind of support. They may be out of the family home but many have not yet established a family of their own. Young adults are trying to establish autonomy and independence and may see asking for family help as weak or childish.

They are expected from the beginning to manage their own diabetes but could often benefit from having supportive family or friends taught alongside them how to check their blood sugar or administer insulin.

Closing speaker Joe Solowiejczyk quoted this prayer during his talk.

Managing one’s diabetes is a huge burden to carry alone. When adults with T1 (who were diagnosed as children) describe their past experience in paediatric care, it is often with longing.  They remember the way staff knew them and their families, the encouragement and the smiles.  Adults could use all of this as well! We like smiles and bright colours and being seen as a whole person!

Look out for more Q&A with her in the future.

Thank you Michelle 🙂

Read more about her here.