Sunday, June 30, 2013

When are we just human?

The entire struggle at the very core of type one diabetes is trying to maintain a consistent blood sugar level. Nice, even, straight lines, not too high, not too low...all while doing the part of one of the key organs in your body for hormone production. Nice, eh?

Well I strive for this, like anyone with T1. But what we do doesn't always work. For example: last night before bed I had a corn popped cake (think rice cake with a bit of flavour) which is 4g of carb. I had it with some artichoke and asiago which is no carbs but a bit of fat so I upped my bolus a tiny bit. It was a relatively low-carb, low fat snack and I was full. Now, I did something I don't normally do and I ate a snack when my sugar was 9.0 mmol/l (162mg/dcl). Normally, if I can time and hunger-wise I try not to eat until I am >7.0 mmol/l (126 mg/dcl). For me, that is the magic number where I don't need to correct, and my insulin to carb ratio should work relatively well if I give my bolus a slight (15-20 min) advance on eating. It has been working well for me 80% of the time (and with type one diabetes that's a good percentage).

So, yes, last night. I had a snack when I was 162. I knew I shouldn't but I was hungry to the point that my stomach was churning. I gulped a glass of water hoping to satiate myself enough to fall asleep but it just wasn't happening. So what do I do? find the lowest carb to satisfaction snack I could and enjoy it. I bolused and corrected for it. Here's what happened over night:



I didn't fail. It's much higher than I personally prefer to be for such a long period of time but it wasn't a failure by any means. I didn't go out of range....so why was I so disappointed in this this morning? Well, for one, because my meter is telling me my bg is 8.4 (152) and I am hungry! I know that if I eat now before my breakfast pre-bolus kicks in, and kicks in well I will sky rocket and hover in the 13 (234)-18 (324) range all morning, no matter what I do. But I am hungry.

At what point do we as people living with type one say shag it and treat ourselves like we are human beings, rather than a science experiment? When do we weigh the consequences of indulging our human instinct vs. what we know would be best for our body?

These are thoughts that have been running in my head a lot lately. The guilt of treating my body like it is human, rather than many robot parts, has been rearing its ugly head on me. leaving me with that one question: when am I just human?



Friday, June 28, 2013

JDRF AGM: Research & JDRF Canada Update

I already wrote about my opinions on seeing John Lipp speak about the importance of volunteers. I did promise to write about the research updates I got to soak up, as well as a blurb on the update of JDRF Canada. I understand this is a bit "after the fact" but I have been super busy trying to make my house look like a home :)

So, without further adieu!

Dr. Paul Fernyhough: Professor Pharmacology and Therapeutics, University of Manitoba

Image from the St. Bonifice Medical website
 Dr. Fernyhough spends his days looking at and understanding the progress of neuropathy. A lot of people with diabetes tend to not want to hear about the devastating outcomes of the disease, so this type of research update may not twinkle everyone's star like it did mine.

Firstly, Dr. Fernyhough is incredibly engaging, witty, and did not speak to the crowd like we were a bunch of idiots would could never understand his work. For that, I thank him.

Secondly: I thank him for dedicating his life on how to actually reverse, not just treat the symptoms of, diabetic peripheral neuropathy.

With the money JDRF Canada has granted him....he is very, very close to getting there.

The notes I have on this talk are pretty sparse because I was thoroughly engrossed in his slides. Like I said: he is very engaging. However, I can briefly go over what I learned because that has stuck with me.  50% of all people living with all types of diabetes have moderate to severe diagnosed neuropathy at some point in their lives. That is a staggering number. He mentioned when he was researching this, he found this to be incredibly high versus the number of PWDs who maintain "good to excellent" control of blood sugars, Throughout his research he has discovered that all patients with diabetes have a change in nerve fibres, and it is totally individually dependent on how far those changes progress and if they show symptoms.

I was awestruck. Yet another highly regarded and incredibly intelligent person telling me that if, I happen to end up dealing with neuropathy it isn't my fault. Paging all doctors and caregivers: give this a guy a call.

So, what's this guy going to do about it? Well he and his team have discovered that a gastric ulcer med called perenzipene corrects myopia. Not only that it reverses the loss of neurons, and heightens the sensitivity and feeling in nerve endings. Incredible. This drug which was used for something totally unrelated to nerve damage can make nerves re-grow. He said in his studies it has been used topically (on mice, oh....to be minnie) and the neuropathy had been 100% reversed within two months.

So yeah, mice...again. Why should we care. They have cured diabetes in mice. However, we should care because of two things: 1) the product is already available for prescription and 2) it is used topically. These are two HUGE hurdles that researchers can come across when trying to get things passed in Health Canada (the Canadian equivalent of the FDA for my American readers.) So it's non-invasive and people are using it right now. It's all about marketing his research properly through his company he has formed and gaining interest from the pharma companies. It's not often I truly feel hopeful after a research update (which you are about to find out as I move on with my intake updates) but this guy really has me hoping.

Dr. Bruce Perkins: Associate Professor and Endocrinologist at the University of Toronto. A Diabetes Clinician Scientist.

Image from www.diabetes.ca


Ok. So I admit I was totally excited to hear Dr. Perkins speak. He directed the formation of the insulin pump program at the UHN, he is a T1 PWD himself, he is part of the artificial pancreas project! I was hoping to hear about the AP and all of its glory from him.

Admittedly I was a little disappointed. He spoke about his other major research which is a predictive marker and tool to screen and measure neuropathy. After hearing the previous research update, I definitely didn't want to hear about  further screening, because I was feeling so hopeful about it being a complication of the past!

Either way, Dr Perkins updated the group on something called a corneal scan. This scan shows nerve damage on the cornea which can predict neuropathy progression throughout the body. This may, in the future, prevent people from feeling the pain of neuropathy. (side note: dear blogger: neuropathy is not homeopathy, stop trying to spell check that!) This development of his is a painless eye scan much like we already get at the ophthalmologist, and he is working on getting them in clinics nation-wide.

Dr. Perkins also is heading a really interesting study on longevity in diabetes. He is funded by JDRF for studying and learning things about people who have lived 50+ years with diabetes. You can see his brand spankin new website at: www.diabeteslongevity.ca

He spoke very briefly about his work on the AP project and that made me sad. I am more hopeful that the AP will be available to me than actually ever being cured so I just will leave it at that.

Dr Susan Kirsch- Pediatric Endocrinologist

Dr. Kirsh updated the audience about the importance of bg testing, CGM use and how the Minimed pump is a step towards the AP. She updated things that I really, really already knew so, admittedly, I tuned out a little bit. Not because what she was saying isn't important, but because she was discussing things that I live every day. I am grateful someone like Dr. Kirsh could pass on this important information to those in the audience who do not live with diabetes every day. She did discuss the barriers in CGM usage....and as she discussed that my Dexcom alarmed for me to treat a low. I snuck out of the room and face dived into a bowl of fruit.



Andrew McKee, CEO-JDRF Canada Update

Image from www.stemcellnetwork.ca

Andrew's update was long and very interesting. As someone who puts all of my donated volunteer hours into JDRF Canada it was great to hear about the state of the foundation. There were a lot of financials discussed and that's all really important to me, but not necessarily important to my readers.

Here's what I think is important to pass on: the reasons why those numbers are so important. He talked about what JDRF funds and why the foundation funds the projects it does. These are the reasons why I switched my volunteering from the Canadian Diabetes Association to JDRF.


The JDRF has primary research goals: Cure, Treat, Prevent (in that order) Type One Diabetes.

Cure: The JDRF funded projects that are currently working on a cure for type one diabetes are focused on immune therapies and beta cell therapies.

Treat: The JDRF funded projects that are currently working on better treatments are complication therapies (like the first update) and glucose control therapies (such as the AP)

Prevent: The JDRF is funded projects that are currently looking into preventing type one diabetes are vaccine therapies and further researching the effect gut flora has on triggering the auto immune response in T1D.

So what I took away from Mr. McKee was something I never knew before. There is something during the research process called The Valley of Death. It's the stage between the initial projects and when the pharmaceutical companies pick up funding the projects. I learned that in  this valley a lot of really important research gets lost. JDRF funds promising projects to trudge through this period in the development and research. Once a project can get past this stage, the pharmaceutical companies usually pick up and fund the final laps before it goes through approval stages in Health Canada.

So there you have it. My second of three posts about the AGM. I am still trying to get a quick interview with someone truly inspirational I saw speak. Stay tuned!




Saturday, June 22, 2013

JDRF Canada AGM: John Lipp

As someone who volunteers it's always a pleasure getting recognized for the long hours, countless phone calls, emails etc that I send out. This year after being the communications chair on our walk committee, the local office asked me to attend the JDRF AGM to experience research updates and more.





It was a whirlwind trip to Toronto, and I wish the sessions could have been extended over three days so I could let it set in. However, I did take some great notes.I will break this down into sessions to give a few things that really stood out for me.

Session One: John L Lipp- National Director, Volunteer Engagement- JDRF

"If you want to make long-term changes, you have to include the whole community"
John is an excellent speaker. He has clever antidotes, engages the audience and makes the room feel much smaller than it actually is. As a volunteer, this session wasn't entirely focused on me as it was primarily about how to obtain and (more importantly) maintain volunteers. It was great to hear him give the employees of JDRF the tip of his talk (for me): Volunteers can mentor staff members. Meaning, the staff know JDRF inside and out, but volunteers know something else inside and out. Combining those skills will make for a very, very powerful team. The Halifax office employees have no problem with this. When I gave PR advice over the past year, they listened and took it to heart. When I explained some of the confusing parts of the national branding strategy, they were grateful. They are a great group of women to work with.

He went on to explain that volunteers, to be successful, have to care about the organization. It is up to the staff to ensure that each volunteer cares. He gave examples of doing this, but I think the most important point he made was to make sure that the volunteers skills are being used appropriately, and check in with the volunteer regularly.

What he spoke of, and what I found most important in my own personal repertoire of skills: how to run a committee. He talked about effective leadership without making your committee members feel like they need to be led. He talked about how to run meetings and the kind of language to use when addressing committee members.

What I took as most important to Mr. Lipp was that volunteers are just as important as paid staff members to JDRF, and it's vitally important to recognize this. It was a fabulous session to take in.

I will post about the two research updates tomorrow :)





Wednesday, June 19, 2013

House Purchase: Major Renos done!

Well folks, before you read this, go to this post. As you read that post make sure you imagine smelling old socks, unshowered humans, dirty laundry and crusty boogers and poop.

Ok, so we are moved in! We now live in our house and we LOVE it. We really do. Now begins the process of making this our space and truly getting comfortable in it. So here, as promised, are the photos.

Also: I have tried coding this to make the photos side-by side, but am failing miserably at coding. I REALLY want to have it that way but I just don't have the patience right now. Sigh.
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Kitchen After (Still moving, I am not always this messy)

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Here are some misc. photos of people who helped us over the past two weeks. It was a VERY ambitious undertaking to do all of that in two weeks. Between ripping up carpets, priming, laying new floor, painting and CLEANING (it took well over 40 (wo)man-hours to clean the house alone.) We COULD NOT have done it without the support of some of our friends and family. We are REALLY lucky to have people in our lives who will donate so much time. From the guys who helped Todd lay the floors, to my parents, his parents, my aunt and uncle, my cousin, Todd's co-workers....It's been a CRAZY hard two weeks. We have had 14 16-hour days in a row, and somewhere in there I went toe the JDRF Canada AGM (that post is coming.)

I got really emotional about all of this today, I had a moment where I just had to cry because my body and brain didn't know what else to do. Overwhelmed and happy to be a homeowner with Todd! And then there's being overwhelmed at the outpouring of help and love from everyone.


T and D start ripping the baseboards off.

First coat done

L-R: Claude (T's dad), Tom (my uncle) and my dad tore out and built us a whole new front step in 1.5 days!


T's parents have some lunch. Starbucks and Sushi! mmmm



I have had quite a few compliments on the colour pallet I chose. I will start by saying that we chose to go with Benjamin Moore Paint. It's more expensive, but IT IS SO WORTH THE EXTRA MONEY. We only had ONE coat of primer throughout the house! ONE! Even on the red and orange rooms! Here are the colours I used from Benjamin Moore:

Main colour for most of the house: Coventry Grey. A cool, true grey.


Office (was the red room) Ylang Ylang. Nice creamy and sunshiney yellow



Kitchen and basement accent wall: Anchor Grey. Deep, dark almost Navy-charcoal. LOVE this colour so much I got it for my shutters outside too.


Master and spare bedrooms: Nimbus Grey. A beautiful cool grey with a hint of blue.



Bathrooms and laundry room: Jamaican Aqua

Trim, baseboards, anything light: Distant Grey. A cooled-down version of an almost pure white.










Okkkkaay. So that's it for now! I will update again once I tackle my yard and get all of our artwork up and new furniture in.

I feel great and OVERJOYED about all of this. What an AWESOME experience (minus the cleaning of dried boogers and poop off the walls)