Monday, July 28, 2014

I give you a gif story

Today I bring to you a series of photos that describe how I felt at 5am this morning when I rolled over and tore out a 2 day old infusion site that had been working so perfectly my blood sugars ranged from 4-6 for 48 hours straight.











And then You lay there for 20 minutes contemplating if that 1 hour of basal insulin is REALLY important enough to get you out of bed to put a new infusion set on. Because who really thinks the dawn phenomenon is breakable anyway?



And then you put a new site on, and hope for the best...by the best I mean to sleep another hour to prevent a massive mood swing later in the day.




AHHHHH LIFE. THANK YOU STARBUCKS FOR BEING RIGHT BELOW MY OFFICE.




None of these photos belong to me. They belong to the Internet, and the original artists who have been ripped off so many times now I can not source them.

Tuesday, July 22, 2014

My Friends For Life Experience

Sometimes I think I kind of sound like a broken record in my advocacy efforts. I am a passionate advocate for fair, judgement-free treatment and understanding of diabetes. Sometimes this can lead to difficult conversations with people who are either not willing or not able to understand life with diabetes for various reasons.

Part of why I write, tweet, Facebook and blog about diabetes life isn't just for me. I do it because a lot of people don't have the same passions I do. And that's ok. I am a strong believe in the saying "it takes a village."It takes a village of people with varying skills, knowledge levels and passions to move anything forward, including advocacy, health care, products....anything.

Sometimes though, I am stuck standing there scratching my head because I don't know what to say, do or think next...and that's kind of how I have felt since returning from Friends For Life a few weeks ago.I have all of this new and important information, connections and conversations that happened and I am trying to put them in order....which is a bigger struggle than I thought.

 So, on with it. That's what today's blog is about. I already addressed Masterlab, and my personal struggles with being diagnosed with my first ever diabetes complication . Now Ill address the other two days of intense conferencing.

Thursday, July 3 started out with Moira McCarthy, of www.despitediabetes.com giving an opening keynote on everyday superheroes. A lot of times we are spoken to about the wonderful things all of these super humans like Ryan Reed, Charlie Kimball, Sebastien Sasseville, Miss Idaho, Kris Freeman etc etc etc, are doing with diabetes. We can sometimes get lost in the fact that everyday living, living a normal life in a positive and healthy way is pretty awesome when you have Type One. As much as I respect the superhumans mentioned above, it was refreshing to hear from someone who is living  normal life, as a normal parent with a normal child, who has a normal job for a change. Moira has a great positive energy. Cutting ahead, we enjoyed a few cocktail on Saturday night together one on one and she gave me some great tips and advice on some things that I struggle with when speaking to parents of children with T1.

After her keynote, I had the pleasure of seeing Gary Scheiner of Integrateddiabetes.com speak. So, fun fact: two years ago I read his book Think Like a Pancreas and it totally changed how I treated my diabetes and insulin. So much so in fact it lowered my A1C from 8.8 to 6.1 over a two year period. He spoke about Strike the Spike and how important pre-bolusing is. He got in to the science of how our body uses certain types of foods and how we can trick our body in to reacting to our insulin. It was informative. Even better was being able to meet him, tell him his book changed, and probably extended my life by many years. I choked up when we had our one-on-one chat. As you may learn from people like Bill over at Glu: opening up and choking up at Friends For Life is common and to an extent, encouraged.

After his session I quickly dashed to catch Dr. Alessio Fasano to chat with him about his work with gluten intolerance, and autoimmunity and the gut. If you haven't seen or heard about his work: keep a close eye on him. He is going to have a major break through, I just know it. I don't say that often, I am reserved with my use of the "c" word and breakthroughs....but this guy. He is approaching autoimmunity with a different mindset than other researchers I have met or read about. I would also like to note that he is HILARIOUS, approachable, funny and gave me a big hug when I told him I want him to take all of my blood if it means feeling better now and in the future. (For the record his team did take a lot of blood from me, and I am waiting anxiously for the results. I have been having GI problems, I am left wondering if it is hereditary IBS or Celiac...his tests will let me know)

Later that afternoon I attended another session by Gary Scheiner, and one on complications.....I will say that it was an overwhelming day of sessions. Very overwhelming. That night we had our banquet and I had my first 4th of July experience and I was a little culture shocked, but I loved every minute of it.

The 4th of July was much like the 3rd.

My major-breakthrough sessions that I experienced at FFL happened one after another. The first was Self Care and Stress Management for Adults with Type 1 put on by Dr. Bob Bulgarelli. He opened with a lot of science and facts that I couldn't wrap my head around. Then a person in the audience asked a question that turned the entire session on its head. I won't say who or what was asked, since it was a room of confidentiality (meaning it was a safe space and nothing left the room), but it rocked. Dr. Bob taught us a way to let go of points in our past that have affected how we deal with stress today in negative ways. There were lots of tears, sniffles and sighs during his guidance. We all closed our eyes, got on an elevator and visited hard points in our lives. It sounds crazy and fluffy but in the moment it was exactly what everyone needed. He then taught us the basics of meditation. I had a very intense experience, not something I am used to. I wasn't expecting it. In fact I was skeptical of the meditation...and then I experienced it and what started out as a bit of embarrassment on my part for  how I reacted to the feeling of meditation actually turned out to be how you are supposed to react.

The second session that day for me was about incorporating your friends, family and spouses in to your day-to-day diabetes care so  they can feel included, but also to feel less burdened yourself. It was an interesting session to take in. I do want to include T in my care more. I know he is learning a lot. But I walk the line of not wanting to seem like a burden on him. He signed up to be with me, not to live with diabetes himself...and I don't ever want him to experience that. It was great to experience to hear from all of the other people''s experiences. Special props to Jess' (from MeandD) husband who gave us the other side...

As a side: I have always wanted T to try an infusion set, and use my old pump for a day or two. He has no interest in it, and flat out refused, and that always kind of hurt me. But Kerri mentioned that her husband just doesn't want to feel sorry for her if the insertion hurts. Which makes sense. So I am practising letting that go.



All of this has lead to something big that I will be doing locally. I will tell more about that once it is set in stone. It's exciting though :)








Monday, July 14, 2014

The concept of a Chosen Family

Awhile ago I posted the following photo on my Instagram feed


And it said "the best chosen family." As the caption. And it's true. I stand by that.

But then I noticed an aunt, then an uncle favourited the photo and I sat back and thought....I hope they don't think I am replacing my blood family with my chosen family.

Because I'm not. There are people who probably should, but I am not one of them. I never was and I never will be.

But it got me thinking about how important my two families are to me just in different ways. They fill gaps in my life that I truly believe are unique when you're living with a chronic illness.

My family, my blood family, my mother, father, brother, grandmother and most my aunts, uncles and cousins are wonderful. They know my history, they raised me and taught me what am advocate is. They taught me how to do daily things like money management, living on my own, how to drive a car, how to be tolerant and patient. They taught me love, and critical thinking and...so much. I can't list everything I learned from my blood family.

But the diabetes community, my chosen family, taught me self acceptance, awareness and understanding in a way that my blood family simply could not. 

When you live with a chronic illness I truly believe that a vital part to your treatment plan needs to include support from a community. 

And that's what a chosen family is. It's a group of people who are there for you no matter what happens, who are there and they say "I get it, I understand, me too"

But they don't have to. That's the differnce and that's why they're chosen.

Thursday, July 10, 2014

Friends For Life: #Masterlab



Last week at the Friends For Life conference I attended #Masterlab which was put on by the folks over at Diabetes Hands Foundation. I was a little nervous, it felt like a first date in a few ways. I was meeting so many people that day that really helped shape who I am as a diabetes advocate, blogger and member of the onnline community.

Let me say this first: I was greeted by Mike Lawson, who scooped me up  in the friendliest, warmest hug before even signing me in. It put me at ease and did you ever get a Mike hug? If not, you're missing out.

There was a big discussion to start things off about the state of federal regulations and diabetes and how it affects us. It was hard to wrap my head around since I was trying so hard to Canadianize it in real-time. I have never heard of Health Canada having an open discussion with a patient community and I think that it is time to change that. I will be doing some research into the Canadian equivilant of open dockets. I can only hope we have someone as open to hearing from patients as Stayce Beck from the FDA is.

We also had the pleasure of hearing from Mike Mangianello from HCM strategists. Mike was an advocacy pioneer in the 80s and 90s during the HIV/AIDS crisis in the US. He gave us a little fire under our feet to mobilize ourselves. I believe that he was quoted by almost everyone in the room saying "The diabetes community is a sleeping beast that needs to be awoken. And he is right! We are one of the MOST common chronic illnesses in North America. People are scared to speak up because of the shame we feel and it is time to stop it. He was extremely inspirational and smart.

We finished the day off with hearing from people in our very own community talking about several very successful advocacy campaigns such as Bennet from Stripsafely and Kerri spoke about the Spare a Rose campaign.

Keep an eye out at diabeteshandsfoundation.com/masterlab and you will soon be able to see a video of the whole event.

Wednesday, July 9, 2014

Friends For Life: Eyes.

I am still unsure of what I want to write here.

I attended the Friends For Life conference last week. It was incredible.

The feeling of being surrounded by green bracelets, and people who can say "I get it" is un-topable. I had a lot of people question why I came all the way from Canada, and I never had an answer for them. I usually explained that it was important to me.

I have a lot to unwrap about the conference and I intend to do so, but I  just want to get something off my chest that weighed me down a bit.

I had my eyes checked.

I always get my eyes checked, I go see a specialist every year to get my eyes checked. So I wasn't worried. In fact they pulled me in, in the hallway after I registered because there was nobody in their seat. I wasn't afraid and I let them know that it was truly unnecessary because I was Canadian and I had coverage and I wanted someone without as much privilege as me to have a seat. But they told me to have a seat and look at the dots and coloured crosses.

I did so.

And they printed out my results, and she looked at the results quizzically with a slight "hm" under her breath. The doctor looked over with her and said some things I don't understand and then he said "You need to go to the dark room just over the stairs so they can look a little closer. It might be totally normal, but it's good to check."

I further pushed back, explaining that I have my very own doctor, the one who smiles big every time I have a check up and says "No diabetes eyes for you!", in three months. It's fine. I am fine. I don't NEED to see a doctor. They insisted.

I was worried. It was a 45 minute wait to see Dr. Ben. I paced in the hallway picking at my new green bracelet. I read everything about the studies they were doing. I closed my eyelids one at a time and made sure there were no spots or blurry visions.

I was fine.

Except I wasn't. I went through around 10 more tests and squints and "yes I wear glasseses" before I spoke to Dr. Ben and what he saw. He saw two bleeds in my left eye. He explained they were very tiny, but they were close to the macula so it was important to follow up. He said they will probably fix themselves if I keep my blood sugar in range (ha!) and exercise like I have been. He told me to make sure I mention all of this to my doctor at home because he may not see them due to the special equipment he had.

I thanked him with a very shaky hand shake and didn't know where to go. I just kind of stood in the hallway leaning against the wall wondering what to do. I closed my eyes tight trying to feel or see anything different but it was just normal. My blood sugar was normal, my A1c is below-normal, my exercise is great, my blood pressure is fine, my diet is good...what can I do? Just wait.

I didn't do anything wrong but the overwhelming blanket of guilt just started to smother me, so I started to walk-quickly. I wanted to breathe some fresh air before I lost it in front of all of these strangers scurrying by me. I went outside and gathered myself before I met my friend and headed to Universal Orlando-where we had a good time.

For the record I now have a new appointment  next month with my specialist.

Unfortunately this weighed on me like a big secret. I didn't want to bring anyone down, especially myself. But now I regret not leaning on some of the people who would have understood the most.

I promise my other FFL posts will be more positive and informative, but I needed to unload that.