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.

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Retina eye exam. I kind of love it?

 

When I leave a doctor’s office, I want to feel as though I’ve walked away with a big overflowing gift basket.

Inside would be all kinds of treats that would sustain me until my next visit.

I definitely felt that way after my last optometrist appointment.

Here’s what I got (lifts red blue checkered cloth):

A relaxed, uplifting atmosphere: When the overall vibe of a doctor’s office is friendly, I believe it makes the world of difference to everyone involved. From a patient perspective, the more comfortable I am, the more likely I will open up and be receptive to what is said.

New information: I left armed with a greater understanding of how diabetes effects blood vessels in the eye. Like every yearly visit, I got my retina assessment done (cost not covered by the Ontario government) where they took a picture of my whole eye, all the way to the back.

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My doctor went through it all, the different parts of the eye, what he looks for when he examines. Although truth be told I don’t retain much of what he says, my mind grasps onto a few points. Bit by bit my diabetes information jar is filling.

Feeling empowered: I felt like I had control over my eye health. Healthy blood glucose levels= healthy eyes. I can’t control everything, but the things that I can, I will.

I find going to the eye doctor fun. It’s like a game. Slide A or slide B? Follow my finger, look into the light. Focus on the little farm-house picture inside this machine.

Is there any medical appointment that you enjoy going to?

 

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Going online: best & worst idea for someone newly diagnosed with diabetes (or anything for that matter)

When WebMD first came out, I was one of many who turned to the website when I felt the slightest symptom.
A cough: Was it a sign of the common cold, a debilitating throat infection or a warning of some pretty serious disease? Take your pick. Want to scare yourself silly? Start browsing.

We all know how the internet works. It’s a free-for-all for anyone with an idea and a connection. And although we know we should screen what we absorb online, sometimes proper judgement gets thrown to the wayside. This could happen when, let’s say, you are diagnosed with a disease you know nothing about and are told you will have to rely on insulin to survive.

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It makes sense really, a wealth of information right at your fingertips, a range of opinions and seemingly good answers to questions that would take hours to answer in a doctor’s office.

But there’s a great danger out there if you are in an emotionally vulnerable state of mind.

I didn’t realize it myself until now. What I read and who I communicated with (willingly or not) has definitely shaped how I view diabetes.
I was so overwhelmed with it all, and I found reaching out to people on Twitter made me feel less alone. On the flip side, sometimes my feed would seem like a storm of people complaining. I thought of myself 5 years later, a decade…would I be just as angry and resentful of my condition?

I sometimes got private messages from people who told me my doctors were wrong, that what I was doing wasn’t the “right way”. But when I felt so incredibly sad and frustrated, here were a bunch of strangers who understood what I was going through.

Today I’m much more selective of how I screen diabetes information. I look at how I conduct myself online much like how I should in all other aspects of life. I must be careful and selective of who I trust, be surrounded by those who will uplift and inspire me, and spend my time wisely. 

The online world has changed how we communicate but online or not, some things remain the same. There will be positives and negatives (opinions, people), those to be trusted and others with false claims. Do your research and do things that make you feel comfortable.

Tips to tackle the online world with a health challenge: 
  • Filter, filter, filter. Many social media outlets (Twitter, Facebook) allow you to make lists so you can choose what you want to see. I have my lists filtered so if I don’t want to come online and read about diabetes-related news/info that day, I don’t have to come across it.
  • Ask yourself who is the creator and what is the motive? A good exercise is to repeat the information given and ask yourself if you would trust it if a stranger said it to you on the street.
  • Verify reputation. Has this person been mentioned on other sites? Are they featured in reputable publications? Do a quick search and find out more. There are a lot of people who claim to be experts who have little to no educational background on the subject.
  • Don’t be afraid to ask. Not sure where to turn to for information online? Ask the experts. E-mail an organization and ask who or what sites they’d recommend for topic x. Find well established and respected online sources and see who they mention in links and go from there. Call for help on Twitter. Word of mouth can often lead you to the best resources.
  • Give an attitude check. Yes, the internet is a place where people like to pour out complaints. I think people are more likely to complain online than in real life about certain issues, but the internet is also home to tons of inspirational stories. There are tons of sites dedicated to people who may have similar health challenges who are defying the odds and living each day to the fullest. What kind of outlook do you want to have on life? That’s what you should be searching and bookmarking.

Safe surfing,

J

The dreaded “before” photo & taking on the Inches Challenge

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I’m a big fan of my gym. Here’s why:

  • Trainers are friendly and so helpful. Every time I go in, I call on one of them to see if I’m doing an exercise correctly. I always have a good experience and walk away feeling empowered and not intimidated in the slightest (the latter being a big deal for me).
  • They provide lots of fundraising initiatives. For Christmas, one of the trainers dead lifted the total weight of how much food was donated. For Movember, donators could purchase from an exercise “menu”, appetizers being $2, a main course $5. I bought a few appetizers and purchased squats. At the end the trainers had to do all the exercises that were purchased from the Movember menu. I won a poster and free passes to the gym 😀
  • New programming. Last month I took part in two olympic lifting sessions (power clean and dead lift, which I’ll blog about later) and had a blast doing it. And now, I am taking on the Inches Challenge.

So the photo above explains it all. On Thursday I had my measurements taken and sat down to talk about my goals. You can decide your end date to the challenge. I have decided it will be a year from now.

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For the most part, I want more definition. I want to build muscle and decrease my body fat percentage. 2013 was definitely a year to push myself when it came to fitness and this year, I want to continue to grow and dedicate myself to my health.

Taking a “before” photo was nerve-wracking. It took 10 seconds at the most, but standing there, in form fitting gym clothes to bare every curve in front of a lens that I wasn’t shooting was no easy task. I wouldn’t have dared to enter something like this 5 years ago.

I’ve never been a person that was proud of my body. I struggled long and hard and resounded a while back that it just wasn’t in the cards for me to be really fit. Being diagnosed, and all that has come with it, has really changed my perspective on things.

We hold so much power in our thoughts. We are much stronger than we believe. I’m thankful to be part of a fitness facility that helps build my self esteem and provides me with a comforting environment where I can say, “Yes, sign me up! I can do this.”

Find a place, whether it’s outside alone on a trail or a group class with an energetic instructor, that makes you feel comfortable. An environment that makes you feel strong, that encourages you to step outside of your comfort zone.

It makes all the difference. And with that, you will be another step closer to conquering your fears and reaching your goals.

Body Fat 33% & going down,

J

2013 Year in review fitness goals. Did I meet them? Plus my promise for 2014.

I had three fitness goals for 2013: complete two mini triathlons and my first half-marathon.

It was pretty ugly at times, and there were moments where I wanted to throw in the towel (and toss my meter into the lake and never look back), but I pushed through and got it done.

Being able to do these events during my first year and some after diagnosis mean more to me than my university degree or any promotion I’ve gotten too.

 

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Why? Because the past few years have been the toughest of my life thus far.

I found out about multiple health challenges and with that came the stress, the worry and the realization of how precious life is. It also meant coming to terms with how I lived my life up to this point. It was and is really, really tough.

It was a smack in the face about every aspect of my life.

A quarter life crisis on steroids.

After all the hospital visits and endless doctors appointments, it seemed as though the universe was saying that my body was simply faulty.

As things got worse, I started to look at training differently. A gym session wasn’t just a time to get sweaty and have fun, it was a part of my day where I felt in control and in charge. Getting stronger and faster showed me how powerful I was. And instead of my body being ugly and riddled with defects, I saw how beautiful I could make it. I could turn myself into a well oiled machine and the things I did this year, blew me away.

I completed all my goals by the fall, so I decided to tackle Runner’s World magazine’s Run Streak Challenge. Run 1 mile every day from Thanksgiving to New Years. I haven’t missed a day, and this morning, I silenced my doubts about hitting my 9 minute/mile goal with this:

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So 2014, I will start with the Inches Challenge at my gym. It’s time to devote myself even more. I’m ready.

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And with Nike’s #WeRun2014 challenge. 100 miles in the first month of the year.

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The distance seems scary, but so are a lot of other things. I can do it. And YOU can do whatever you set your mind to. If there’s anything I learned this year, it’s that fear can rob you of your dreams and the life you want to live. So proclaim your fitness goals for next year.

2014: 

  • #WeRun2014
  • Complete my gym’s inches challenge
  • Complete the Ottawa half-marathon
  • Complete 150km MS Bike ride (my first long distance ride)
  • Get over fear of lake swimming (so I can do more triathlons)
  • Volunteer more at events/programs that promote physical activity

I’ll be here, writing next year around this time, about how I accomplished the above. And you will too with your goals.

In the spirit of hashtags…

#letsdothis

J

 

 

 

Toronto ice storm diabetes photo art

Taken this morning around my neighbourhood.

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This post was inspired by fellow type 1 diabetic Scully. Her December 12 of 12-tiny things photo entry featured one unit of insulin as the focus, and it was amazing to see visually just how tiny a drop of insulin is.

Hope everyone is staying safe. Happy holidays,

Jessie

The needle you don’t inject yourself. Flu shot anyone?

Another needle for you. Another for me.

Before my vacation I had a meeting with my diabetes team at the hospital. My nurse Sue said I HAD to get the flu shot.

“How about I get it after my trip? Last time I got the flu shot years ago I got very sick.”

I ended up getting it yesterday at my local Shoppers Drug Mart, almost a week since I returned back from my vacay. It took less than 10 minutes, quick and easy. I didn’t know this but now every Shoppers Drug Mart in Ontario offers the flu shot.

After my jab, I Instagramed this photo:

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Thank you to everyone who responded to my photo on IG! It was interesting, as I’m a newbie type one diabetic, to hear the wide range of comments about the flu shot. Some of you said you wouldn’t go without it and others made it clear you would never take it again.

A few months ago I came down with the flu and it was terrible. It was three weeks before I got back to my old self. The nasty bug also threw my half-marathon training out of whack. This was my first big sickness since getting diagnosed and the awful feeling was one I never wanted to experience again. That, coupled with my nurse’s advice, is why I decided to get the shot this year.

Does your diabetes team advocate for the flu shot? Do you take it? I’d like to hear your thoughts.

Sore arms (from today’s workout, not the shot),

Jessica

Skin conditions & diabetes. Did you notice any changes in your skin after diagnosis?

ImageThis was my wrist a few days ago.  

I like to play a little game with myself when I’m in uncomfortable situations. There’s no real system to it. I barter in my own head about situations I’d rather not be in.

Example. 

I would eat 15 anchovies if it would get me to the front of this line.  

I’m so hungry I would pay $100 for an apple. 

Yesterday I found myself saying, “I will do ANYTHING to make this itching stop!”

About a month ago I started to get red bumps on the inside of my wrists. The strange thing about it is that after being itchy for 15-30 minutes, it would go away. The skin irritation would come and go but a few days ago, it began to spread all over my body. 

I went to see my GP and he said that it’s most likely not an allergic reaction to say, my MedicAlert bracelet or the material of my clothing or the bumps would be there all the time. I did some blood tests and am now awaiting the results. 

My doctor says with certainty that it’s hives and that it might be a side effect of some oral medication I’m taking. We won’t know until the blood results come in. 

In the meantime, I want to take a fork and go to town on my skin. He suggested taking allergy medication and I think tonight I’m going to take it because I’m getting very very uncomfortable. When the hives flare up, it’s really bad news bears. 

Have you noticed any changes in your skin after your diabetes diagnosis? 

Trying not to scratch,

Jessica

Recap: WDD & my first overseas trip with type 1 diabetes

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The night before my trip I was very nervous about flying. I didn’t want any complications going through customs and the thought of potentially ruining my vacation with delays just lingered around me.

This was my first vacation with type 1 diabetes and drumroll….I couldn’t have asked for a better one.

Airport security: I took everything out of my backpack and had all my goodies in clear bags. I had my letter in tow and as suspected, my basket of needles was halted, reversed and brought through the conveyer belt. I carried a juice box with me and the security guard said, “You’re diabetic?”

“Yes, here’s my letter.”

She didn’t look at my medical note. She took my juice box, scanned it on that fancy machine which has a name I’m not sure of, and off I went. I was thrilled. I hugged my friend and said, “I did it!”. It was a huge sigh of relief.

I knew I was spending World Diabetes Day away from home. I didn’t know how to celebrate, all I knew is that I wanted to be peaceful and happy, and to reflect on this past year with lots of pride of what I accomplished.

Right before my trip I got this wonderful surprise from insulindependence. I had a big smile on my face when I read the handwritten note from Desirae.

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My new t-shirt went right into my suitcase, as did my Connected in Motion race shirt.

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On WDD I donned both tops, wore my pin and celebrated with quiet thoughts about what transpired over the past year.

It has been definitely a rough and often dark time since I was diagnosed. However during WDD and for the rest of my trip, I felt rejuvenated and inspired. I’ve got big goals for my fitness and health this coming year.

I’m going to dedicate more time to weight training, train hard for my second half-marathon and try to find more ways to help other type 1 diabetics here and around the world.

As for my blood sugar levels on my trip, I had one low. That’s it. I floated around my 4-8 range as usual and felt great! I took next to no insulin because of all of the activity. I checked less (I’m usually pricking 15+ times a day), and it was wonderful! I think because of the setting I was able to relax about my diabetes more.

So after a week of relaxation, swimming with sharks and eating amazing tropical fruits, I’m back ready to push it at the gym. I’m ready to crush my health goals!

Suntanned and happy,

Jessica 🙂

I’m a newly diagnosed type 1 diabetic who loves to exercise. Welcome to my unpredictable world.

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When I found out I was diagnosed with type 1 diabetes, the first thing I said to myself was, “I’m not going to give up my exercise regime!”

It was a shock to find out after 29 beautiful years together, my pancreas function wanted out.

First off, way to be a quitter. I’ve invested a lot in keeping you and the rest of my body healthy. What gives? Maybe I took you for granted. I took a lot of things for granted actually. I just assumed you and the rest of my body would just “work”. But I guess not. And secondly, stop coming back for short bits of time and then leaving again. Either you are in or out. I don’t like this wishy-washy fling we’re having. I don’t know why it’s called honeymooning. This is no honeymoon.

Okay, back to exercising and being a newly diagnosed type 1 diabetic.

The biggest problem I face with any type of training is going low (the technical term is hypoglycemia). It has been a very long process and I am by no means at a point where I’ve found the answer on how to work out without going low. I do accept that no matter how much I prepare or try to prevent lows, they will inevitably happen.

In the year and some since I’ve been diagnosed I have been to hospital once over  hypogylcemia  involving exercise. I swam, biked and run much earlier in the day in training for my first triathlon and although I ate when I should have, I still crashed, and crashed bad. I was completely out of it and my run buddies drove me to the hospital. I didn’t know where I was, and apparently was saying on the ride there, “We are going to do swim drills now right?” I eventually came to, and was released the same night.

If you’re competitive and have a type A personality like myself, this whole process may drive you mad.

It’s important to remember the following:

  • This learning curve will teach you the great life lesson of patience
  • It will also teach you about acceptance and lastly…
  • Unless your livelihood depends on being an athlete, you’re going to need to calm down about PB’s

That is, just for the time being. This is absolutely NOT to say that you shouldn’t have goals for fitness. I have lots of them. And a quick Google search will prove that there are plenty of accomplished athletes who have type 1 diabetes.

It’s just that because you are newly diagnosed, your body is needing to adjust to everything. And it’s a process, a long one, and one that will try your patience and may have you in tears at times. But things will get better, I promise. It’s important to stay positive.

The basics to avoiding lows for me have been (after much trial and error)

  • Eating a substantial amount of carbs before working out (what is substantial, now enters the fun part, will again, be a game of trial and error)
  • Hydrating properly (I found I need to keep hydrated throughout, whereas before I could pound out 15km without a sip of water)
  • Taking in a steady stream of carbs via eLoad Endurance Formula in my hydration pack

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I usually mix the formula and water in a water bottle, then pour it into my hydration pack. eLoad Endurance Formula is light in taste so it’s not super sweet and doesn’t overwhelm the senses. 

  • Testing often (for me it’s every 1/2 hour)
  • Eating immediately after a run to replenish
  • Documenting what works and what doesn’t

What works for one diabetic may not work for you. I always like to try different things because you never know what might end up being something that gives you exactly what you need. And also, what works ONE DAY may not work the next. And that can be extremely annoying. If your pancreas is honeymooning that will cause a whole other host of fun surprises in terms of how much insulin you need/carbs to intake before/during/after exercise. What has worked for me is throwing my hands in the air and surrendering to the fact that things are probably not going to go my way.

It took a lot of work from my nurses, dietitians, endocrinologist and GP to help decipher the world of diabetes and exercise, but let me tell you, it’s all worth the blood, sweat and tears (literally!). I completely two triathlons and my first half marathon recently. It can all be done, I assure you.

I realize now there are many frustrations that I just had to accept:

  • Carrying all your supplies including your meter, lancet device, test strips, glucose tabs, food
  • Constantly calculating what you should eat, how many carbohydrates are in your fuel foods
  • Stopping for hypoglycemia or when you are feeling ill
  • Having your friends and family worry about you when you train
  • Listening to people tell you “take it easy”

Those were the major annoyances that I have (for the most part) come to accept. It’s completely normal to be annoyed by the way. I thought my feelings of being fed up was a sign of weakness but it is absolutely not. This disease is exhausting.

If you are afraid of exercising because of lows, remember this: consistent exercise is prescribed a lot to manage stress and to alleviate a host of illnesses. It makes you feel good. It helps you become strong. Always talk to you doctor before starting any kind of new routine. But remember, the benefits of working out, in my opinion, heavily outweigh staying stagnant.

Keep moving,

Jessica