advocacy / friends / guest posts / health + fitness / health advocacy

low monologuing – jamie’s story on type 1 diabetes

• by kerri

A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

advocacy / asthma / being a student / health + fitness / health advocacy / kinesiology / life

going and growing.

• by kerri

I have about a million and one thoughts flowing around in my brain, so bear with me!

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What I lack in size, I hope I make up for in passion.

Maybe that kid was right–maybe I’m “too tiny to be twenty”. Sometimes I don’t feel twenty–I convince the kids of it daily, but sometimes I have a hard time convincing myself that I could possibly have a quarter of my life behind me already. Sometimes I think I should have more figured out. And sometimes I just feel small, whether that’s in a good way or a not so good way.

I just hope that I’m already making an impact for somebody out there that helps them grow.

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I taught a grade eleven biology class about asthma today. It went well, but as always I forgot to say a few things I intended to. I’ve done this presentation several times and I tend to change it up at least a little every time based on what I’m feeling in regard to asthma and life. Today, to increase tangibility for NON-asthmatics I had a good section on exercise management beyond asthma and exercise. However, sometimes high schoolers are like talking to brick walls–I don’t blame em, I was (and am) totally not a speaking in class person. Overall, I hope the three students with asthma are maybe thinking a little differently about health management and asthma, and the 25 others are a little more aware of what people with asthma deal with. That said, it was their last day of classes before winter break, so some sluggishness was expected! As always, I’m hoping to keep improving this lecture and my OWN knowledge of asthma, physical activity and how it affects the adolescents I’m speaking to.

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Speaking of holidays . . . Whoa, nutrition out the window. I have not been doing great in that regard since exams started up, but I have totally fallen off the track! Because at first it becomes “I’ll get back on track after exams” and turns to “Well, its the holidays! I can get back on after!”

Wrong mindset, brain. I had declared on Sunday after not only McDonalds but also Pancake House that I would reclaim some ground on nutrition over the week. That turned into pizza yesterday with Evan while Christmas shopping and pizza today with Dean; tacked on to all the chocolatey goodness that has been served up at work by my coworkers and our families AND the lovely chocolate “hedgehogs” that I received as a gift after teaching grade eleven biology this morning AND the bits of lovely deliciousness my mom keeps baking.
It also morphed into basically no exercise since Sunday. Granted, Sunday included both hockey AND the gym, freaking fabulous; and I suppose that hitting up three malls yesterday in five hours may count for a little . . . but I don’t think so!

To once again quote Jay in his seemingly infinite and entertaining wisdom, “Why are the holidays any different? Because the table’s longer and there are more people at it?”. Yeah, true story.

Not to mention that this has been going on since Sunday. And you know when “the holidays” start? Saturday. At the earliest. That is a week of pre-holiday slackery. Even if the holidays should be no different, which I fully agree with, starting the nutritional/fitness downslide when I was working at getting back on track is no bueno.

Tomorrow: I own you for fueling better. That is my choice, regardless of what deliciousness people give me.
Saturday, I own you for a pre-Christmas dinner workout.
Sunday is fair game for whatever happens and not to think too hard about it.
Monday, boxing day shopping is a sporting event; resume regular programming, and rock this.

I got this.

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Returning to old schools makes me very aware of the impending future. Today, I headed over to my old high school after work (right next door), an hour before I needed to be there to speak. I dropped my stuff off in the very dark room and made my way through the halls looking for familiar faces and to repeatedly answer the same questions for teachers, people who have played huge roles in helping me to learn and grow into who I am . . . “What are you doing now?” and “What are you planning to do?”

Two and a half years ago I was sitting in those desks. University seemed so far off, the career part of the future even farther. Two and a half years ago I thought I knew who I was; in reality I was as confused as ever. Two and a half years ago I was one of those students contemplating the big world outside those walls.

It makes me see what I’ve gained. But it also makes me wonder what I will have gained in two and a half years from now. I left high school and thought I had a plan. Then my plan changed. My plan still changes minute to minute; other than “probably still in school” I have no idea where I’ll be in two and a half years from now . . . Less idea than I thought I had two and a half years ago.

That scariness is part of the journey. I’d be lying if I said I didn’t thrive on it; I’d be lying if I said it wasn’t scary. But every single day I get closer to that answer. Every single day I know more. Every single day, things happen in a way that affect how I see the world and how I make choices. Every single day, I change as the world changes.

Every single day brings me closer to that answer.

And I wouldn’t trade this crazy journey for anything.

There are even more GOOD THINGS to come.

guest posts / health advocacy

guest post! | “but you don’t look sick!” – living with multiple sclerosis

• by Awesome Guest Blogger

This week is Invisible Illness Awareness Week!  I’ve been blessed by many of my amazing friends who want to share their stories to help us all gain a bigger perspective on what it really means to live with a variety of invisible illnesses.

My friend Meggs has Multiple Sclerosis, and does her best to keep active and take an active role in managing her disease.  She also lives as a person with MS and without insurance.  She shares her story of some of her experiences navigating the world of invisible illness in the last year.

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meggs headshot

Since I was diagnosed with Multiple Sclerosis in early 2011, I’ve come across more than a few people who are (unintentionally) ignorant of what it’s like to live with a disease that has symptoms nobody else can see. I think one way to let you in on what it’s like to have this “invisible” disease is to share some of the most frustrating things people have said to me since I was diagnosed and the things I wanted to say in response but didn’t:

  • What they said: “You don’t look sick. Are you sure you have MS?” What I wanted to say but didn’t: “I can’t see your brain. Are you sure you have one? Yes, I’m sick. Yes I have MS. I’m sorry if my face isn’t falling off as an outside indicator that there’s something wrong with me. I shouldn’t have to look sick for you to understand that I have lesions on my brain. Ugh!” I may not look sick, but I feel like a big ol’ pile of poo sometimes. MS is a disease that has so many symptoms it’d take me an entire day to explain to someone how it affects my day-to-day life and why they can’t see my symptoms. I walk around about 30-40% of the time with a super annoying and sometimes painful tingling sensation in the entire – yes ENTIRE – left side of my body. Not to mention the shooting pains, vision issues, dizziness, and muscle fatigue.

  • What they said: “I know [so and so] has MS, and she balances a career and a family and an active social life quite well. When are you going to go back to work and why don’t you go out with your friends more often like [so and so]?” What I wanted to say but didn’t: “[So and so] has medical coverage and a treatment strategy that she has worked out with her neurologist. [So and so] has the benefit of accessible health care and medication at her disposal. Were I able to afford the fees to procure a neurologist in order to gain access to meds and treatment plans that would allow me to go back to work I would be working instead of spending countless hours trying to find resources to get back on my feet. As of this moment without meds to manage my symptoms I’m kinda out of luck. And I don’t go out with my friends more often because I’m tired. Fatigue is a vampire. And not the sexy ‘True Blood’ kind. The ugly ‘Nosferatu’ kind. Furthermore, I am NOT [so and so]. Thank you; please drive through.”

  • What they said: “Oh my GOD! That’s horrible! Are you gonna die from it?” What I wanted to say but didn’t: “Oh my GOD! I know! I sure hope not!” If I had a nickel for every friend or acquaintance that has told me some horror story about a person dying or having their livelihood stolen from them because of MS… well, I’d probably have a dollar or so. The fact is I don’t know which type of MS I have or what my general prognosis is because I don’t have access to health care that will help me figure that out. I found out about my disease thanks to the compassion and ingenuity of a few really awesome people who work with homeless and indigent programs in my community. I would prefer not to be bombarded with sympathy and remarks like this because all they do is make me want to punch people walls.

All in all I try to have a sense of humor about things and laugh it off when I’m able. I guess it’s one way of coping with the fear and the anger I’ve felt since I was diagnosed. The truth is most of my friends and family will never understand how it feels to live with Multiple Sclerosis… and I’m thankful for that. Hopefully one of these days I’ll be able to find some affordable health care and a treatment plan that’ll work for me. Until that day comes, I have hope and a positive attitude and a great online community to reach out to when I need advice about how to deal with the things I’ve got to face in the days ahead. Thankfully, I also have a mental filter that keeps my mouth shut when other people who don’t even really know what MS is find it necessary to step in and fix me with their advice and their lectures about how I should be handling the disease. Otherwise I might have not only Multiple Sclerosis, but also the need to stretch a thick piece of silver duct tape across my lips everywhere I went. Now that would be something to explain!

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Megan is also a survivor of childhood sexual abuse and sexual assault as an adult. She has been diagnosed with Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Mild Obsessive Compulsive Disorder, and depression. She blogs about her healing journey at I Tell My Truth.

Thanks for sharing your story, Meggs!