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 :)








33 comments:

  1. Check. And also, it was so great to finally meet you in person at FFL!

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    1. Back at you! Can't wait to have more time to chat with you one on one.

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  2. I definitely agree that sometimes it makes it more relateable when hearing about normal people living with diabetes. The superheros are awesome and are an inspiration, but it's difficult to connect with them when you're just a normal person. That's why I read D blogs, I like hearing about normal people going through normal issues just like me. :)

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    1. Thanks :) and yes, I like the super humans, but I like the regular ones too, it's nice when they get a little light.

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  3. Check! And you got to go to all of the cool sessions I wanted to be at during FFL. I am session-ing vicariously through you!

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    1. They were really really interesting. I will definitely be back next year in some scope.

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  4. Check.

    When the trainer came over to put my daughter's first CGM sensor on, she was terrified. I took one for the team and had the trainer put one on me first. I haven't worn her pump yet, though.

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    1. Wearing a pump and CGM seem so effortless to me now, I just wanted him to know what it was like. But when Kerri mentioned that they don't want to know so they don't feel pity I totally got it. I won't ask him again (though he occasionally gets me to prick his finger :))

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  5. Love ya, sista!!!
    Also: CHECK!

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    1. Love ya too! It was so so awesome to hang out with you :)

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  6. Great recap and I also think Dr. Fasano is hilarious:) He held a bubble gun in Isabella's face until she let them do the blood draw...I thought it was funny, her - not so much :)

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  7. Great recap . . . . . except for leaving us with a cliff-hanger!! ;)

    #dblogcheck

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    1. I will definitely be speaking about my cliff hanger asap! I have a few things to iron out. Thinking about coming to Nova Scotia say....in October?

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  8. I attended FFL in 2012 and 2013 -- loved both experiences and can't wait to return. Dr. Fasano is a HOOT!!!!!

    #dblogcheck
    www.CandyHeartsBlog.org

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    1. I loved the conference and loved meeting Dr. Fasano!

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  9. Thanks for the recap! I'm hoping I can go next year, it sounds like a great conference!

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    1. Its truly a wonderful conference!

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  10. I wasn't able to go this year (or probably next year) so it's always great to hear write-ups from those who can go! Thanks for sharing your intimate experiences!

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  11. Great post! I hope to go to FFL someday and love hearing others' experiences there. I could definitely use a session on stress but also the idea of sharing a bit more with close family members. Maybe that could be a #DSMAchat topic someday!! How do you let loved ones help?

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    1. That's a great idea for a #DSMA chat I will certainly pass it on to Cherise.

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  12. Thanks for sharing your experience and I hope we get to meet one day IRL :) #dblogcheck

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  13. Thank you so much for this great recap, and for sharing your perspectives on those various sessions. I'm on the same page sometimes, when it comes to being left scratching my head and not knowing what to say. Think it goes with the territory. Of course, we can't always be in "advocacy" mode and sometimes I just leave things unsaid. Depends on the moment and situation, mostly. Anyhow, thanks for this. Looking forward to hearing more about your local efforts!

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    1. Thanks Mike! I can't wait to share my idea :)

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  14. Best of luck with the local effort - I can't wait to hear more. #check

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  15. Great review of all the sessions you attended! It is such an emotionally draining and empowering place!

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  16. Check! This makes me really want to go to FFL, and pick up a copy of Think Like a Pancreas.

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  17. So sorry I wasn't able to check in before now. I always appreciate everything you write. It was great meeting you in person... hopefully, we'll catch up again soon.

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