Friday, April 28, 2017

Supporting Advocates

After leaving HealtheVoices last weekend, I am left thinking about all of the people that put in so much work and effort into advocacy and support.  Running a Facebook group, blog, support group, and other diabetes-endeavorers, myself, I know that this work is hard and it's never ending and after spending time with people who put in the time day in and day out, I have come to realize how much passion and motivation comes from truly believing in the power of your own voice.

There are people living with very serious chronic illnesses that involve lots of pain, appointments, ups and downs, yet they still have time to go out there and get things done for their community - to give back and to spread the word and their voice.  I met so many people that are not only strong advocates in their relative communities, but also raising families and holding 9-5 jobs.

I wanted to take the time to say how powerful it is to share each others efforts, work, and voice. To help elevate those that are putting in so much time simply because they believe in the power of their voice and that there is a way to help one another through text, photos and a conversation. I am so honoured to know so many great advocates not only in the diabetes sphere, but beyond.

There is so much power in sharing one another work!  I wanted to highlight a couple people who are doing amazing work in their communities and I hope to share more as I go along!

Anna Norton: https://diabetessisters.org/  (Type 1 Diabetes)

Barby Ingle: http://barbyingle.com/ (Chronic Pain)

Emily Robinson: https://youareinthisworld.com/ (Mental Health)

Jim Snedden:  https://awildandflakyguy.com/ (Psoriasis)


Kayla



Thursday, April 27, 2017

Common Question: Does diabetes run in your family?

Continuing on with the common questions in relation to my diabetes.  I feel as though this question comes from a place where people are trying to figure out the cause of diabetes, so in this common question post, I'll cover that as well!

Common Question: Does diabetes run in your family?


As of right now they do not know what causes type 1 diabetes. While type 2 diabetes can be pinpointed in some instances, type 1 diabetes is still somewhat up in there. I will disclose that I am not a science nor medical person so I will not go into details about that. However, for my case, I do have type 1 diabetes in my family (on my father's side).  I do not know what caused my diagnosis to appear when I was 18 but, I do know that I did not eat too much sugar nor was I overweigh like most media suggests must be the cause of diabetes. 

For me, living with type 1 diabetes comes with this question a lot. People are interested in knowing how does someone that was healthy for eighteen years of their life develop something as serious as type 1 diabetes.  I think it creates that unknown worry of "could that happen to me?" and while no one is exempt from type 1 diabetes, it is important to know the signs and symptoms and if there is a history of any health conditions in your family.

There are people living with type 1 diabetes that have no one in the family living with the condition, so it is important to note that while I did have family members living with type 1, that is not always the case! 

I'll take the time to list the signs and symptoms because I think they're incredibly important to note: 


  • Unusual thirst.
  • Frequent urination.
  • Weight change (gain or loss)
  • Extreme fatigue or lack of energy.
  • Blurred vision.
  • Frequent or recurring infections.
  • Cuts and bruises that are slow to heal.
  • Tingling or numbness in the hands or feet.
(Source: diabetes.ca)  


Kayla

Wednesday, April 26, 2017

Common Question: Do I have to stop eating sugar now?


This next common question is probably one of the most frequent questions that I get.  If someone happens to catch me indulging in Easter Candy, or a slice of cake at a birthday party, I am bound to get some kind of question, remark and advice from someone who just isn't sure if I was supposed to quit sugar or not. 


Common Question: Do I have to stop eating sugar now?


The most simplest answer is....no.  When I was first diagnosed I didn't even think twice about this because my grandparents had type 2 diabetes and I knew that my grandma also liked to indulge in chocolate... I vividly remember her two favourite hiding spots for junk food, her front closet in her house and under her bed in her R.V.  I didn't doubt that I wouldn't be able to enjoy some sweets but I did realize soon after that I would pay the consequence of eating too many sweets. 

If you have type 1 diabetes you likely have the tools to prepare for eating sweets.  Sometimes it isn't easy trying to give insulin for candy, chocolate or baked goods, but it is possible to still eat sugar as someone living with diabetes. I get a lot of questions or 'advice' about what I can and cannot eat.  There isn't anything I cannot eat (although there are things I do not want to eat!) and life continues after diagnosis, you just have to be more aware and sometimes being aware makes you think twice about your choices! *cue the calories that are now listed in restaurants*

Kayla 

Tuesday, April 25, 2017

Common Question: Can Diabetes Be Reversed or Cured?

For the next week or so I plan to go over some of the most common asked questions about living with type 1 diabetes.  If you have a common question, please let me know in the comments below and I'd be happy to try and answer or point you in the right direction! Please note that all answers are based on my own experience and opinion and I am in no way a medical professional!

Common Question: Can Diabetes Be Reversed or Cured?


If you live with diabetes of any kind, you likely have been offered some kind of 'cure' or advice on reversing your diabetes.  This may be in the form of a 'book you should read' or a 'spice you should eat' or it could be as out there as visiting some doctor in the hillside of Scotland for a cure.  Regardless what these people are offering, please know that as of right now there is NO CURE for diabetes. There is no Harry Potter Wand Pointing Spell, magic unicorn pixie dust on your oatmeal, or big green vegetable out there to cure your diabetes nor reverse the diagnosis.  

I get so many spam comments (on this very blog) in my inbox, along the side of of my personal Facebook, insisting that there is a cure out there.  I get people in person telling me about their friend of a friend of a friend of a friend of a friend of a friend who was cured of diabetes. I get people throwing the pyramid scheme shakes towards my way promising of diabetes reversal and all that is great.

Ahh, and what a life it would be to be cured or reversed (or flipped, turned, set on a different life path diabetes free...) but that isn't happening. It isn't happening today, and likely won't happen for awhile.  I combat this 'cure spam' by recognizing that it is false information.  I decide if I want to cast my energy on education or not and I move on.  I know what makes my diabetes better for myself, not cured, but better and I will stick with that. 




Kayla 



Monday, April 24, 2017

#HealtheVoices17

Since being diagnosed with diabetes I have been to A LOT of conferences.   A LOT.  Since the conferences I go to have so much meaning to me, each time I leave a conference, whether it is a day or a week, I am left with simple reminders and a clear focus.   I must admit, this last conference that I went to has got to be on the top of the list of being THE BEST conference I have been to. 


I attended a conference called HealtheVoices in Chicago (for anyone wanting to learn more, check out the #healthevoices17 to see what we got up to!)  What separated this conference from the rest?  I can't quite decide.

Was it learning that others living with different conditions such as HIV, Psoriasis, Mental Health + Chronic Pain have all kinds of amazing and tight communities like the type 1 diabetes community does? 

Was it hearing the stories that literally brought me to tears knowing that we are all facing battles and some how still find a way to give ourselves to one another relentlessly and unselfishly?

Or was it connecting with others that I know I would have never encountered had I not been diagnosed with a chronic condition?

I don't know.

What I do know is that I am leaving this conference with so much empathy, pride and hope that although sometimes we as online advocates have no idea if we have an impact or not, is anyone reading this? We still take time out of our busy lives to tell our stories, their stories and the stories that would otherwise not be told.  We continue to fight despite not feeling great, not feeling present and not feeling strong. We continue on. 







Disclaimer: Janssen paid for my transportation + accommodations. All thoughts + opinions are my own! 

 




Thursday, April 6, 2017

You Have Type 1 Diabetes

Recently someone I know from high school was diagnosed with type 1 diabetes. It brought back that feeling of when I was first diagnosed in 2009, just after high school.  I have since connected with her trying to give some insight of what I've learned in the past eight years, and bring myself back to that moment when I first heard those words, "you have type 1 diabetes." 

When I was diagnosed I connected with someone else who had diabetes within the first few weeks.  This to me was key, because when you are first diagnosed you have no idea what you're getting into and it is hard to imagine how living with diabetes is at all manageable.  Now, not everyone will get that experience of one-on-one meetings with another type 1 right off the bat, but I do hope that eventually a connection is made in their local community.   Just in case, I have created a short list of things I think are important to note and remember when first being diagnosed with diabetes.

1. Insulin will not make everything perfect, but you will feel a lot better.   I think I was under the impression that as soon as I took my 'medicine' that everything would be good and I would just feeling perfect and go about my normal routine.  Insulin is amazing, obviously, but diabetes is like a puzzle and it requires a lot of figuring out, ratios, timing, brain power and a magic wand.   It can be really disappointing when you first go on insulin and you are still dealing with the stubborn highs of diabetes. I can remember bawling my eyes out thinking I was doing something wrong because I was taking my medicine but nothing was immediately happening.

2. Your story is my story. There is power in sharing your story with others and if you do not know anyone in your community, check with your local hospital or go online! There are so many resources online of people to chat with or blogs to read.   I can remember when I was meeting another type 1 for the first time, and she told me about her symptoms pre diabetes, I felt like she was telling my story and in that I felt comfort. I wasn't struggling alone, and someone knew exactly how I felt.

3. You can cry, but be sure to end with a positive note. I have cried a lot about my diabetes.  When I was first diagnosed I would break down about the unknown future, would my hands become gapping holes after all these pokes? Would I be able to have a baby? Would I live as long as my friends? All of these questions flooded my mind and I would literally break down. I think this is just us being humans, we deal with things differently, and there is nothing wrong with crying. But, be sure to remind yourself of how far you've come, and prove to yourself what you can STILL do!  I often would cry and find myself in a deep dark hole of 'why me!' and as time has gone by, I have realized the answer to, why me?

4. All this structure will eventually become your routine. No one is a perfect diabetic, and if someone claims to be, here is your gold star.  When I was first diagnosed I did everything to the book. I counted individual french fries, I changed my lancet every single time, and I never once left the house without my bag of supplies. All of this, which every doctor, dietician and nurse would praise, eventually adapts to how you decide to live your life with diabetes.  You become an expert of carb counting via eye-balling and you 'joke' about only changing your lancet every few months... Diabetes is 24/7 and you have a million other things going on, at first it seems impossible to fit it all in and to follow the guidelines and rule book, but you'll adapt and find ways that make sense for you.



Kayla

Thursday, March 30, 2017

Functioning Human with a Plastic Pancreas

CGM is such a wonderful invention, I truly believe that my next a1c will be so much better than my last and I honestly believe that over all I am working on being healthy, restoring the feeling of having steady blood sugars and just feeling like I have some sort of grasp.  But, I am both emotionally and physically exhausted and even putting my thoughts together on this cold rainy Thursday is a task.

I was up likely every hour listening to pump alarms, finding a comfortable position to sleep after getting up to treat a low and moving Cola from beside my head to my feet every hour or so.   Poor M, spent a good chunk of time listening to my frustrated grunts as my alarms went off and wrappers unfolded and I feel guilty about disrupting his sleep.  

Between mental breakdowns this morning, chasing a high from a yogurt and bran muffin I ate that I didn't want to eat and sipping my cold coffee between working and trying to grasp energy from upbeat songs on youtube. I am trying. I am trying so hard to be a functioning human with a plastic pancreas.

I want to be healthy. I want to see straight lines and I want to have the best a1c yet, but that comes with a lot of focus, energy and time. It comes with being proactive in a world where we are busy and don't always know when we will eat next or what is for dinner.  It comes with patience that it is going to be okay and it comes with strength that I sometimes just can't muster up.

Kayla