Monday, April 7, 2014

Undo Diabetes

Last week I went to Chatham to speak at a Medtronic/Bayer event. I was pretty excited as I was getting the opportunity to speak to some kids with type one diabetes and hang out with them.  Since I was diagnosed at age eighteen, I never experienced life as a child with type one diabetes. Of course I can imagine what it is like, applying the struggles that I have with type one and placing them in settings such as elementary school or birthday parties. But truly, hanging out with children with diabetes reminds me that what I am going through is a fight that is being fought by people less than half my age.

Photo taken from I Challenge Diabetes FB Page 
I spent about an hour with the children in the gymnasium of the YMCA.  We chatted beforehand about diabetes related issues, but it was done in a manner that made it seem less about what is right and what is wrong with diabetes, and more so, how to do you make diabetes yours... or at least that is how I perceived it.  This conversation was lead by Chris Jarvis. I noticed that the children were timid at first, but looking around seeing other type ones amongst them, seem to relax them a bit.  There was a wide range of ages, and that in itself was interesting to see knowing that we were all battling with type one diabetes, but were in totally different stages of our lives.

One of the questions was, "Which finger do you hate poking the most!" Some said thumbs, while other said pinkies, but when it came down to a little six year old girl, her answer was simple, she shrugged her shoulders and said, "I don't like poking any!" That's when it hit me.  Diabetes SUCKS!  I know diabetes sucks because I hate pricking my finger, and giving myself insulin and feeling responsible for everything I do and eat because when I check my blood sugar my meter screams back at me, "YOU DID SOMETHING WRONG!"  But, for this kind of torment to happen to someone so young, that at only six years old she knows that it sucks and knows that she hates having to do it. Why?

It is so frustrating that I cannot undo diabetes from any child; however, it inspires me to do all that I can to at least make it easier, to be there for them to talk to, to help them get through it.  I know that I need to make this happen and I will do everything I can to make sure I am there for those that need someone.

Kayla

27 comments:

  1. just an FYI you have to state it in your blog if you have any kind of financial relationship with medtronic - ex. if they payed you for that event. check out some other blog's for an example. i think Scott Johnson's has a good example of how to write one.

    it is actually a serious thing and could lead to issues if you don't disclose

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    1. I will look into this via professionals or those that have gone through the process, since I am not sure of your background anonymous.

      Kayla

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    2. By that logic your opinion is worth very little cause you couldn’t even get into university out of HS. And I heard you also did a victory lap of HS. So basically we can conclude that your marks sucked and your marks at western probably suck too. I am sure your Fanshawe marks were good, but that kind of goes hand in hand with my point.



      and BTW your BA or honors BA ain't gonna be worth the paper it's written on

      your self esteem is so low you can't even post links to the Kilimanjaro videos cause you need a pound of makeup to feel good about yourself

      and your level of diabetes knowledge is abysmal ...... you have LADA. if you ever get the low levels of endogenous insulin like a typical type 1 diabetes will eat you alive .

      Have fun with no drug coverage when you are out of school ....

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    3. Hi Anoynonmous,

      It would be super helpful if you told me your name, then I would be able to know what your credentials are and then I could make some horrible assumptions about your knowledge like you did to mine.

      I am not too sure why you're concerned about my schooling. I am not writing about what I learned in school, I am writing about what I am learning as a type 1 diabetic.. which I am, so I am not sure why you're diagnosing me with something else...

      I don't have low self esteem; however, if I did you sure would be adding to it wouldn't you? If you want a link to the Kilimanjaro video, I am sure you've already found it... and clearly you don't know me well because I don't EVER wear a pound of make up.

      And thank you for your encouragement for my drug coverage after school... I am sure I will be O.K.

      Now, I get this this is the internet, but please, if you're just going to be negative about my blog, it begs the question why you keep going on it.

      Delete
  2. Hey Kayla!

    Beatifully written blog, very eye opening for someone with an education in the medical field. Sometimes we forget that behind the disease, there is a child, new mother, 20-something or even a person in their golden years. We forget that what seems to us "non-diabetics" a routine everyday, meanial task is actually the most unpleasent part of someone's day with type-1. Thank you, for the insight from a human perspective.

    Side note;

    Anonymous, the malicious comments you have aren't worth the time it took you to write them. I've known Kayla since she was in highschool. None of what you think you know is actually true. I'm quite sorry that you have nothing better to do with your time than to attack someone online, especially someone who is helping to raise diabetes awareness. Here's a tip, how about you go out and make something of yourself, that way you won't feel the need to be so bitter toward those who truly have done something with their lives.

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  3. Anonymous:

    You know what's really abysmal? Your logic, reasoning, and command of the English language.

    The amount of mad in your post, however, is absolutely hilarious. Please be more upset with your life - thanks!

    P.S. Coming from someone who has been in school for way too long, I can guarantee you that grades are far from being a reflection of one's intelligence. I've known absolute idiots who were at the top of the class, and geniuses who were failing or almost failing. Glad to know you put so much self-worth on arbitrary numbers, though. I guess if you don't have anything else to be proud of...

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  4. LADA is a form of type 1 !

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    1. Latent Autoimmune Diabetes of Adults (LADA) is a slow developing form of autoimmune diabetes found in people over 35 years old which is often misdiagnosed as Type 2.

      The reason for this misdiagnosis is that by age 35 many people in the general population are slightly overweight or may have developed some insulin resistance or other signs of the metabolic syndrome which doctors associate with Type 2 diabetes.

      In addition, evidence is emerging that suggests that LADA, though it is an autoimmune disease, is not quite the same as Type 1 diabetes




      If you insist on being a cyber bully at least get facts straight.

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    2. please quote academic journal articles # 1 . please take into account that K's family doctor was at a loss when she was dx'd # 2 she did not have ketones or DKA # 3 she will never discuss any of the standard tests anyone dx'd 15 has under these circumstances ex . c peptide, antibody levels. I use academic journal articles for my info not general info from google

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    3. Tuomi, T., Santoro, N., Caprio, S., Cai, M., Weng, J., & Groop, L. (2014). The many faces of diabetes: A disease with increasing heterogeneity. The Lancet, 383(9922), 1084-1094. doi:http://dx.doi.org.libaccess.lib.mcmaster.ca/10.1016/S0140-6736(13)62219-9

      this is a good read . type 1 and type 2 are not binary concepts. someone who does not present in DKA at 19 is going to have a totally different disease trajectory than someone who presents in DKA at 11 . kayla avoids the subject like the plague because she knows she is essentially honeymooning.

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  5. maybe you don't have to be so snarkie when someone tells you something factual in a nice way. you can see a disclaimer on many blogs .

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  6. As for command of the English language K is the one who used the word “jet leg” in a blog title (and multiple times in the text of the entry ) and “per say” several times in her blog .

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  7. Hey Kayla! Feel free to get in touch if you want info on the guidelines and recommendations that are out there re: blogging and sponsorship. :) Basically - unless Medtronic paid you for this post specifically or your online content in general, what you have disclosed here is totally fine.

    (It's quite interesting the disclosure requests tied to this posts, especially coming from anonymous users who don't feel confident enough to disclose their own names. If looking for information about post sponsorship, it's actually quite a common question - nothing to be ashamed of asking.)



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    1. funny how scott johnson discloses all financial relationships although he states specifically no blog posts are paid insertions ?

      to count kayla has a financial relationship with sanofi aventis and medtronic (that we know of )

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    2. Just reading through these. This random anon user seem very upset about this issue. Scott chooses to talk about that info, other people choose not to. No one way is right or wrong. (I'm not sure where anon's misguided info about the blogging industry is coming from?)

      Why do you care who has paid anyone for anything in the past? It doesn't pertain to these blog posts. It seems that someone is being quite nosey.

      Obviously this anonymous user is feeling a lot of anxiety, stress, and anger over this and is lashing out in verbally abusive ways (hence, all of the time that is being devoted to these comments). Perhaps time for a little bit of help, anon?

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    3. american bloggers who disclose do so out of legal obligation. the rules are less clear in canada

      i am sure you can check with bloggers who have disclosures themselves and they will clarify. they are doing it to comply with rules. it does not matter if you are paid to blog about X or Y. what matters is if you had a financial exchange with X or Y and some point in time.

      http://www.cbc.ca/news/technology/blogger-payola-getting-a-pass-in-canada-1.788416

      Delete
    4. Exactly. "U.S. authorities are using the threat of big fines to force bloggers to disclose their relationships with the companies they write about."

      Of course you are expected disclose that you are being paid to write about a company or a product if you are being paid to write about a company or a product. But, here, no one is being paid to write about a company or a product. I think you are confused.

      Delete
  8. Not everyone 's ambition is to start social media sites to run their very own diabusiness.

    Some ppl in this category actually pull in big money (and i won't name names out of respect for those ppl.) the differences is that with those ppl its not all smoke and mirrors about what went down at their diagnosis ex. Did they have ketones etc etc etc . You can't get a single straightforward fact out of kayla which is what bothers me. It can't be accidental . How can you constantly avoid the topic of did you have ketones at dx. I mean its such a simple question .

    I have respect for LADAs, I have respect for childhood onset type 1s, I have respect for MODYs. I have respect for type 2's etc etc. However, I have a lot of doubts about people who never give you a straight answer.

    Kayla's disingenuous . That's the bottom line

    Like how your pump suddenly emerged from your bra for the paid medtronic presentation

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    1. Curious Anonymous, why you're so interested in my diagnosis and my life?

      Can you please let us know who you are, so we can at least have a civil conversation?

      Kayla

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  9. Anonymous as much as you like to gloat constantly about your "knowledge" (which I beleive to be copy and paste from a quick google search) of diabetes and apparently everything to do with Kayla, if it bothers you what she writes all the time stop reading. She is clearly writing well enough to keep you intrigued till the next blog for you to try and tear apart with your amazing literary skills and expansive knowledge to do with everything about the ABC's of diabetes along with Kayla's cup size. You try and take a stand on treating Kayla as though she takes advantage of her diagnosis, probably out of jealousy of a person who doesn't sit in the shadows being negative and would rather make light of a big complication of her life. I'm sure your stand would be the same with a cancer patient who makes a blog, who doesn't have all the answers, just life experience's who tells the general public what they have learned so others can relate. I personally know nothing about the science of diabetes but I do have friends and family with it. So as an ignorant person who reads her blogs they're education enough for me to help understand what those people are going through. So as someone who is great at 'analyzing journals' and staying in someone's shadows, the least you could do is have a proper analysis of her reasoning behindher blogs. Which is really a venting tool for herself. Enjoy trolling and staying negative to other peoples ambitions in the mean time.

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  10. can't Vince put you on his insurance . i know he's someone's baby daddy. but still that could work

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  11. 10 hours later no straight answer about ketones at dx. seemingly such a simple question. I think there is more to this story than meets the eye. very fishy .....

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  12. Being a juvenile onset, (I don't like saying type 1) for almost 50 years, I have NEVER been in DKA, even at diagnosis. I checked my sugar and ketones via urine daily. When they spilled, it meant I was sick and should see my doctor, which wasn't too often and I was never hospitalized.

    I don't count carbohydrates. I don't use a pump. I don't do anything Kayla does. I read her blog because she's different from me and I like hearing how people do things.

    I don't agree with everything she says, and there have been times I've said so. One time she said she was an expert on diabetes. I told her that she can't be an expert on diabetes because nobody can be. You can only be an expert on you and your diabetes. Each diabetic is different and unique.

    And not every diabetic thinks the disease is a horrible thing. There are some of us, who are not baby diabetics (I look at anyone who has been a diabetic for less than 15 years a baby diabetic) don't think being a diabetic is really all that bad. We've had it most of our life and it is just a part of who we are. We don't recall life without the needle. We have always had to test our sugar levels, either via urine or blood. We don't dwell on being a diabetic because it is who we are.

    Anonymous if you're a diabetic and have a blog, post a link to your blog so we all can read about you and your life with being a diabetic. If you want to disagree with Kayla, that is fine, but you should do in a kinder manner. So please anonymous don't be so snarly with your comments.

    Kayla, children with diabetes can do anything non-diabetic children can. I know I did, and this was back in the 1960's. I spent the night at friends homes. I went on school trips, not over night ones because the school did not trust my class. I went to birthday parties, swimming lessons, was in band and choir. I was not treated any differently than anyone else just because I was a diabetic. If I went to a birthday party, I just had more insulin in the morning. At that time, I had only one injection of NPH u40, then u80 beef insulin a day. Treating a diabetic child like they are fragile isn't what they need. They need to be treated just like everyone else.

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  13. ANON You are very cowardly to voice your issues hiding behind a screen Kayla's posts help so many people, and if you've got nothing better to do than troll her, I pity you...

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  14. Assume for a second Kayla doesn't know whether she had keytones when she got diagnosed... Who cares? Does that make her any less of a diabetic? I'm a type 1 diabetic and I don't remember whether I had keytones at the time... It was all a blur. All I remember is being told that I'm diabetic. The concept of keytones weren't explained to me

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  15. When I was diagnosed with diabetes my first fasting BG came back at 288. I did not have ketones. I had recently turned 17. They did antibody testing. I tested positive for all 3 of the antibodies. That's how they confirmed type 1.

    A lot of people are not in DKA when they are diagnosed, but it is unusual not to have ketones. In any cases where you don't have ketones they have to do antibody testing.

    For anyone curious you can confirm this with your specialist.

    I don't really see how this topic got started in the first place, but I personally think it is worthwhile being aware of all your test results at the time of diagnosis.


    Sorry don't have any account to log in with. Marina

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  16. Your cleavage looks weird , like your left boob is flopping to the left, an your right boob is flopping to the right. Google image cleavage its not supposed to look like that. its supposed to be a line like your butt crack not a gaping crevice of an inch.

    1st you don't need cleavage showing all the time that's the main issue, but the whole irony is your cleavage leads one to believe your boobs are saggy at less than 25 .

    that's just my opinion I could be wrong. Maybe you just need a better bra.

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