Tuesday, December 8, 2015

On Food

Living with diabetes means living with food demons. Whether we like it or not, we are always going to be faced with internal dilemmas of "should I? Shouldn't I? Is it worth it?"

More often than not, my personal philosophy in life is I am a person first, my diabetes comes second. I strongly believe in peoples' choices in their diet should be what they feel comfortable and happy with-not just what nutritionists and others say.

There's nothing worse than food police, truly...except people who loudly police themselves. Dismissive comments about someone who eats high carb, low carb, carb free etc. are the equivalent of bottom feeders in my life. I genuinely do not care what you eat, or how you eat it if it is not giving you any personal difficulties.

Diabetes is setting us up for a life with struggles with food, and there are a lot of people out there making sure that we are totally, and royally confused as to what we should be eating.

I am always welcoming to people who do different experiments and report back. I find Adam at Diatribe  has been level headed when taking on the massive task of switching up his diet, and reporting back. He has been very clear that what works for him doesn't necessarily work for everyone. He has made clear statements that you shouldn't take his word for gospel.

I am thankful for that.

I think we need to take a step back and understand that an individual will know more about his or her own body and how it uses the fuel we feed it than anyone else. Once we open up about this without fear of repercussion to our medical team, we are closer to being on the right track.

So basically everyone just give a big group hug and bring whatever snack you feel like having.

Wednesday, December 2, 2015

December, December

November has come and gone, taking the waves of world diabetes month posts and comments with it.

Yet somehow, I still have diabetes. Funny thing, that.

I have been feeling a little bit like a negative nancy towards diabetes lately, and I think it's battling off a round of burn out. I am trying to stay engaged.

The ignorant comments just don't stop. I feel like they never will. Maybe it's the long dark evenings, short daylight and limited number of sunny days that are influencing how I feel towards my work and advocacy lately.

It's still burning in my brain that as our society moves ahead, we (and I mean..I use the royal we here..) are lacking empathy. People just do not stop to think about what they post on the Internet, or what they say may actually negatively effect someone else. We are quickly losing sight that we should be helping other people feel good instead of revelling in the fact that we feel better than others.

I posted about my strongly worded opinion in response to an article that was at the surface helping people, but when you read between the lines it was shaming people. It seems to be so...accepted to imply that another person doesn't know enough about their bodies or their chronic illness that they need a stranger's advice. The writer of the article I criticised did email me after my letter was run as an opinion column in the newspaper. I will hand it to her, she handled the heat I gave her with great poise. She was very friendly in her clarifications to me, and we have agreed to disagree....I guess. I did send her research from diatribe and the DAWN2 study about the stigmatisation people living with diabetes feel because of articles like hers. I do hope that maybe my strongly worded letter helps her think about her posts. However, I doubt they will change a lot. This particular writer and lots like her make a lot of money of the stigmatization of diabetes-whether they see it like that or not.

I make it my personal goal to try and educate people when they are spreading misconceptions and medical mis-informations about obesity and diabetes. Probably because these things really do hit home for me. Maybe it's a selfish thing that I focus my advocacy efforts like that.

Anyway, I have been feeling a little hopeless towards people caring about the people with diabetes instead of the disease itself. Maybe it's because I work in fundraising and dollars are hard to come by, maybe it's because I hate the winter and I have literally nothing else to complain about?


Saturday, November 14, 2015

World Diabetes Day

Today is World Diabetes Day. It is Dr. Fredrick Banting's Birthday, this day is a day recognized by the World Health Organization internationally as a day to raise awareness about the disease that is now reaching global epidemic levels.
Every day people are being diagnosed with one of the many different types of diabetes. It knows no age bounds, or body weight restrictions, diabetes doesn't discriminate on wealthy or poor or race or creed. Diabetes is a HUGE drain on our healthcare system, we absolutely MUST do more to stop it. You and your loved ones are not "Safe" from diabetes.
It's why I continue to work at the most challenging job I have ever had. JDRF is funding cutting-edge research that is vetted by many people much smarter than I. I work tirelessly with amazing volunteers and people living with diabetes to fund this research.
It's not just important to me. It's important to you. If you know anyone who has diabetes (which you absolutely do, and definitely more than me) this research is benefiting you and your future.
I don't want any more phone calls hearing about toddlers, or teenagers or adults being diagnosed with diabetes. I don't want to hear about people losing their job because of discrimination.
Frankly, I don't want my job to exist.
So today we celebrate our triumphs, but I put my head down and keep thinking of ways to make people truly care with their words and their wallets to end this epidemic.
And if you got this far, thanks for reading. I promise that's it for awhile on diabetes-for you.

Thursday, November 5, 2015

Diabetes is a Lazy Pancreas' Disease

A patient advocate's job is never done, I guess. The other day this terrible article by a "certified wellness coach" appeared in my community newspaper. I won't get in to details, you can read that here. I will state that I was pretty horrified by the misrepresentation in it. She is very obviously not a medical professional, yet..she is giving medical advice.

Anyway, here is my response to the editor:


November is Diabetes Awareness month. I usually scan health and wellness sections of publications for articles raising awareness and spreading information about life with diabetes.


I was shocked when reading Michelle Maclean's article that was run recently about battling high blood sugar. There is a plethora of misinformation that can be damaging to advocacy efforts and to people living with the disease. 

In her article Michelle made a claim that 50% of adults are living with diabetes or pre-diabetes. In fact that number is much, much lower. In 2010 Statistics Canada reported that 7.6% of the population was living with diabetes- this includes the MANY types: Type one, Type two, LADA, MODY, Gestational etc.While this number is expected to rise to the 10-12% area, it is certainly not 50%. 

There is a stat that 50% of Canadians are obese, however it is absolutely vital that we point out that obesity is not the only cause of any type of diabetes. Obesity is a known trigger for Type Two diabetes, especially in those who have mid-section obesity-but not all those who are obese get diabetes.

I understand Ms. Maclean's theory; eating less carbohydrates should lead to less insulin usage. However that is a very basic understanding of how your body excretes and uses insulin and is providing mis-information to the public. There are many people who eat the low-carb high fat diet who still require insulin, or medication for their diabetes.

Eating a balanced diet with lots of fiber, protein, healthy fats, vegetables etc is what is commonly recommended by medical professionals. To see someone claiming to be a nutrition counsellor recommending to skip breakfast in favour of a black coffee with fat added is shocking. The body's response to a healthy breakfast (as in put down the refined carbs, and pick up some eggs and veggies) is to ensure the metabolism stabilizes for the start of the day. You feel more full, you consume less refined carbohydrates throughout the day, you're better hydrated.. the list goes on. 

Let's be very clear: for a person living with diabetes or pre-diabetes, skipping breakfast in favour of black coffee with fat is dangerous. The hormonal spikes in the morning (other than insulin) need fuel for the day that can not be found in a cup of coffee.

Perhaps the most alarming and discerning bit of Ms. Maclean's article is that all of the diabetes and high blood glucose levels are reversible. This is simply, medically untrue. Diabetes is not reversible. If you have diabetes, it is a lifelong, chronic illness no matter how you treat it. It is a permanent hormonal imbalance. No amount of "intermittent fasting" or black coffee will fix this. The only way to control diabetes is with an excellent medical care team you can work with. Eat a balanced diet using foods that are as close to the original state as possible, move your body the way you enjoy the most. If you need insulin or other medications, do not feel guilty- you are taking care of your body. 

Diabetes and high glucose are very serious. To see a newspaper printing misinformation with no scientific back up is setting us back as a community. We are trying to cure the disease through funding the top research in the world. When this sort of information gets printed, people see the disease as the patient's fault and easily fixable.

Diabetes is not a lazy person's disease. It's a lazy pancreas' disease.
Diabetes is not "reversible"
And black coffee with butter does not a breakfast make-for anyone.

Sincerely,

Alanna Swartz
Living with Type One Diabetes for 25 years
Patient Advocate

Friday, October 30, 2015

From The Grave: On Empathy 1

How apropos for me to rise from the blogging grave to post on Halloween weekend. For the record, I have 17 started, but not completed blog posts in my profile right now.  To the people who have emailed, tweeted and Facebook messaged me asking if I am ok, if I will continue to write etc: THANK YOU! I know we don't blog, post etc. for the notoriety (at least the people who are good at what they do certainly don't) so it really means a lot to me that people have taken notice of my absence in the diabetes online community space.

As I get older, and hopefully wiser, I think the most incredible and resilient people in my life are those who hold the capacity to have boundless empathy. This is a quality in a person that I find incredibly attractive and endearing. If someone shows they have a capacity to lend empathy in extremely difficult conversations and situations, I find myself wanting to know that person more.

In a world that we can carefully craft our social bubbles, and lessen our risk of being exposed to negative thoughts and feelings, I think that when we step outside our curated circles the blows hit harder.
Empathy is the experience of understanding another person's condition from their perspective. You place yourself in their shoes and feel what they are feeling. Empathy is known to increase prosocial (helping) behaviors.
A few years ago, as I started my journey of actually being happy with who I am and the body I am in, I began to realize that there are people who lack the skill to see past their own experiences and empathize with others. I began to realize that there were people who had an expanded capacity for empathy.

This isn't a hard skill we are taught on a daily basis. I think it's one we observe and slowly incorporate in to our lives.

How does this fall in to life with diabetes?

Well, it IS life with diabetes. If you're a parent of a child with diabetes you are constantly trying to take a walk in those children's shoes and remove the "burden" of diabetes from them. When we are living with a chronic illness we are constantly told "Well it could be worse." We are berated daily with companies that lack the basic human skill of empathy to realize that while other illnesses are indeed worse, this one still sucks.

How can we become more resilient towards the lack of empathy shown by the media, by our healthcare teams, by our own families and friends?

Empathize.

Walk in their shoes.

If someone tells you "at least it's not cancer" try and understand where this came from. Try and see how another person's reality has shaped their thought process. We expect everyone to be able to empathize with us, living this life day in and day out-but really how can we break the invisible "but you don't know it" barrier down?

We don't expect to know what someone is feeling like, or the basic nuanced inappropriate comments towards people with cancer, or asthma or any other of the myraid of illnesses.

Share your experiences, but be conscious of the fact that if someone on the other side of the conversation says that something is offensive to them and their experiences-thank them for sharing that and be mindful of how you speak and react in the future.

We can all learn to have a better capacity of empathy. It will help us.


Wednesday, July 22, 2015

#Masterlab: Emily Coles & How a WWII Bomber Analogy Changed My View on Advocacy

This is my final post about Masterlab. I will also summarize my experience at Friends For Life in a future post.

The presentation that stood out the most to me, that literally brought a room full of bright, energetic and passionate advocates to their feet in thunderous, well deserved applause was Emily Coles.

Emily works for the Diabetes Hands Foundation. She does a lot for the communities online and off, I knew Emily from her intelligent and witty interviews with diabetes superheroes.

When she introduced herself, she indicated that she hasn't been presenting for long. She was presenting on creating a powerful message for a powerful audience.

And did. she. ever. We were a powerful audience, and her message knocked us over.

She started her story about war planes returning for repair. When a plane returned during WWII for repair there was diligent care taken to see where the bullet holes were. (the planes that were returning did not have a lot of holes in the locations outlined in light circles below, this image is not the one that Emily showed, but it is one I found quickly on Google and belongs to www.fastcodedesign.com)





Emily asked:
When the decision to reinforce the planes was made, where do you think the reinforcement was made?

People from the crowd stated obvious things (to us) the cockpit, the engines, the wings.....

And she said:
"It was the part of the planes that were untouched by bullets, because the ones that were getting hit there weren't returning."

And a light shined over the crowd. A moment of ahhhhhh hhhaaaa.

She went on to explain that if our legislators, health care providers, and government gave us fair and equal access to tools that we need to succeed in living a full, healthy life we could change the world. We can not change the world with poorly managed self care in diabetes It causes many, many complications- but perhaps the most dire is that a person may not be able to complete their personal mission while dealing with everything else. She explained that we can not do an effective job either personally or professionally if we are just trying desperately to survive and keep our head above water.

And right now, there are many, many people who could be doing so much good for the world (not just in the diabetes space) that simply are not well enough, or not stable enough financially to be able to do it because they are fighting with every fibre of their being just. to. stay. alive.

Emily, thank you. Thank you for your message, and your delivery and your ability to bring an entire room of powerful advocates to their feet. Your ability to capture us an twist our thoughts was incredible.

On top of all of that, I had the pleasure of working on the diabetes hands foundation booth with Emily. And then we got to chatting and got our eyes mostly tested together, and we had a few meals and drinks together. She got me on the dance floor at the Tandem diabetes night, and she talked about dancing like I had never heard anyone talk about dancing. FYI y'all: Emily can move. She can dance like nobody I have ever seen before.

So thank you, Emily. Your presentation and friendship really stood out to me. You effectively changed my mind on how I will advocate in the future, and that's saying something. I'm stubborn.

Tuesday, July 21, 2015

#Masterlab: Part two

Part two of my ongoing series about my Masterlab and Friends For Life experience.

While I already blogged about an grand overview of the theme of Masterlab  I think it's important to thank a few people who gave information that I may have already had in my bank, but really needed to share.

When you are living with diabetes, it's amazing how little thought we tend to put in to crafting our message and selling our message. This is a major part of advocacy that seasoned advocates forget to teach to newer, or fresher advocates. I knew the baseline of a lot of what was taught, my graduate studies were in public relations and eventually health care communications- but even with all of my schooling and my professional experience I still learned so much.

Stacey Simms (@staceysimms, Maria Tsaplina (@TheBetesOrg), Amy O'Connor (@Lillypad), thank you for your thoughtful, and dedicated time teaching us on how to craft our story.

-Treat media professionals as humans. Keep in touch, tweet with them, email them to check in, say hi in the supermarket.
-Make sure your story is not only relevant, but interesting to the media and the general public.
-Practice what you need to say. Draft up questions, and answers and practice. In the mirror, the shower- wherever  you can.
-Know your story. This sounds like it is a really basic note, but when I say know your story...I mean really, truly understand what your story is, why you are saying it and maybe more importantly: know your audience. Understand what their interest may be in your story, why should they care, and what is your call to action for them. If you know all of these, your relationship  with your media professional will be that much better.
-Promote the media, and they will promote you.
-Be passionate, emotional and respectful-of everyone around you....but most importantly be interesting.

I want to say: I found the entirety of Masterlab incredibly informative, helpful and motivating. I really did, but nothing prepared me for how I would feel after hearing Emily Coles (Emily doesn't have twitter, but she can be found over at tudiabetes.org)

More on Emily tomorrow.


Thursday, July 16, 2015

#Masterlab: The first post.

My recap will be in many parts parts.

To get this out of the way, my travel, lodging and conference fees were paid for by the Diabetes Hands Foundation scholarship. While they paid my way to attend Masterlab and Friends For Life, my experiences and my opinions are my very own. They in no way influence what I write here. I will also say  (and they didn't ask me to do this AT ALL) that they are an organization VERY worthy of your donation dollars. If you can spare some money, please throw it their way.

So before Friends For Life officially launched, I attended a two day intensive conference on Advocacy in the diabetes world. This was my second year attending Masterlab, so while I had somewhat of a baseline for my expectations, I had no clue it would be this mind altering this time around. I will break it down session by session.

Throwing my notes together is very interesting. I like handwriting things, so I have a journal around half full of my experiences. Never underestimate the power of free form note taking and trying to piece it together later.

First speaker: Tom Boyer- Director of Government Affairs at Novo Nordisk.

Tom was an excellent speaker. He is one of us PWDs (a person living with diabetes), and when you are presenting on a subject as he did, having that street cred really helps. He has been advocating for many years on behalf of PWDs everywhere.

He presented on rallying the troupes. How we need to work together as a whole group of people with diabetes to create effective change.

He pointed out that a lot of people living with T1D tend to become obessively defensive when someone mentions weight, sugar, lifestyle causing diabetes. A lot of people will throw their hands up and say "NO way! NOT MY DIABETES." But as research becomes more clear, and people start to humanize others behind all types of diabetes we are starting to slowly see the bubble that diabetes is diabetes is diabetes. It all sucks, no matter how your body decided that insulin production is not its priority. The ONLY way we will make change is if we come together.

He described it perfectly: when the three stooges first met, they were in-fighting. They were fighting with each other, there were injuries and nobody was getting anywhere. Then, they decided to work together and fight as one unit and they startedto make progress. Essentially when they worked together they were All For One And One For All.

We as a community need to stop putting our walls up. Nobody, not you, not me, not the president of the USA can advocate for change in diabetes care and treatment until we educate effectively. Defending your "type" and throwing the other under the bus is unacceptable behaviour, and is counter productive to creating positive change and a world without the financial, physical and emotional burden of diabetes.

I am calling on all of my readers, old and new to commit to never trying to defend your type, and only defending the human beings who are living with mal-functioning pancreases so we can really get to work.





Tuesday, July 14, 2015

Not a Recap

I am back from Masterlab and Friends For Life.

It was an incredible experience, again. I don't have the time to write today, as I am back in my office playing catch up.

But....I don't think I want to recap yet. I don't want to write in anything that will make me leak information before I truly savour and decide my feelings on various topics and presentations.

I just wanted to first thank The Diabetes Hands Foundation. Melissa, Mike, Emily, Corinna, and the entire board of directors: Thank you. Thank you for seeing value in me attending the conferences. I am a sponge to information provided by DHF and the presenters throughout the entire conference. I have ideas, big ones. I hope to continue to gain momentum and the guts to push myself further. It truly makes a world of difference for the spirit and for professional goals when you feel valued and I was reminded of that last week. So thank you, I know there are lots of applicants who deserved to be there and I was honoured to represent DHF. Truly.


Friday, June 5, 2015

"I need help"

As an adult living with T1D, I play it pretty cool about my ups and downs with this disease. I am active, I don't let my lows or highs affect my daily life as best I can. I am a shoulder for a lot of parents of children with T1D, and you will be hard pressed to find anyone who is a bigger promoter of diabetes just being a unique way to live by comparison to people with functioning bodies :)

So you'll understand why this post has taken me almost two full weeks to write.

I don't like fear. I don't think we should fear T1D or its complications, at least not actively. I think being aware and prepared is far more important than sheltering our selves and our loved ones from our reality.

A few weeks ago, one week in to my experience with Victoza I had gone to fundraiser dinner with some friends. We ate and had a few drinks (sugary margaritas). While I don't do this often, in the past I had aggressively bolused for the food and drinks and carried on. I did something similar this time, lowering my dose a little and carried on.

An hour after my meal I was at home and my Dexcom gave me the dreaded buzz. I checked my sugar, saw it was riding on the lower side and had a juice box. At this point I was INCREDIBLY full (see note about Victoza delaying stomach emptying) but I fit the juice box in. 30 mins later my sugar was slanted down again, so I was down another juice box, a few tabs and a reduced basal rate.

I wanted to really be aggressive with my low treatment, already that day I had run on the treadmill (3 juice boxes), mowed the lawn (3 more juice boxes), and now I had topped two more in my stomach. I was pretty queasy and sucking on the glucose tabs was the only thing giving me comfort at this point.

For safety's sake I told my fiancé that I was running low all day, but I should be ok. He nodded and we both went to bed. Around 45 mins in to trying to fall asleep with the fullest belly, my Dexcom alerted me again to a low. This time it was getting serious, I did a finger poke and it flashed back to me 2.8 (50 in US terms).

I turned my basal off for an hour and guzzled another two juice boxes and two more tabs. At this point I had to lay very still because the nausea from victoza and SO much juice all day was almost unbearable. All I could think of was how badly I wanted to sleep, and wake up the next day.

I had never been scared during a low. Ever. Not once have I ever looked around and thought that I may need to call an ambulance, or get help.

The feeling of being totally helpless in a fight against your own body is surreal. I had lots of things going through my head at this point. I got up and went to the kitchen where my laptop was propped up. I had an open jar of glucose tabs next to me that I was casually eating.

A few more finger pokes over 35 mins.

3.8 (68), 4.0 (72), 5.1(92) , 3.2 (58), 2.7 (48)

And so it began in my head:
"When do I use glucagon?"
"Should I call an ambulance?"
"My fiancé is asleep and has to be up in 4 hours for work, I don't want to bother him."
"Why me? Why in this moment....me?"
"I need a cure."

and finally.....

"I need help."

I walked slowly and confidently to the bedroom. As if I was being watched by the police and they were giving me a DUI test. I thought, maybe if I can trick my body in to thinking it is balanced and ok, that maybe it will just recover from a low blood sugar without further assistance.

I sat on the edge of the bed, gently touched his warm shoulder, he rolled over towards me and was quickly jarred awake. I said:

"I am still low, two hours in. I think I need glucagon. Do you remember how to do it?"

He sat straight up and looked around and felt my forehead

"You don't feel hot"

I knew he was still half asleep, and worried.

"I am going to the kitchen"

Slowly again I did my DUI walk down the never-ending hallway.

I sat at the kitchen table and he came out and stood next to me with his hands on my shoulder, he had his eyes closed and I had the glucagon on the table next to me.

I messaged my friend, and amazing blogger Kelly Kunik from Diabetesaliciousness

She talked me through thinking of glucagon. I was still hovering in the 3's and through some mutual googling we decided that 7 units of glucagon would be a good starting mini-dose for me.

I didn't want to use the entire dose, it can cause extremely negative side effects like vomiting and lots of other unpleasantness. Once I did the injection, I gave the Mr. the ok to go back to bed, and he went and laid awake.

I stayed up on Facebook chat for another 40 minutes with Kelly. We talked about everything, and every so often she would remind me to do a finger poke an compare it with my CGM.

Finally, I was headed up, and staying. I bid her good night and crawled in bed with a man who didn't know what to do. He didn't know how to react, I just told him I was ok, and showed him my CGM graph showing 7.9 (142) and double up arrows. He held me pretty close that night, for the whole night.

I woke up in range, but a look at my graph showed me I topped out at 15.4 (277).

There's no solid information about the mixing of alcohol and Victoza, it's kind of but not super prominently said to have mild side effects.

I should have known. I should have guessed that I have been uber sensitive to the drug, the effects would be heightened.

I hope to never fear diabetes again. But since then I have been riding a little bit higher, I have been more aggressive with my low treatments, I lowered my basals and I haven't touched alcohol.

You live you learn. Sometimes you fear. We all need support sometimes, even the ones who pretend we don't *cough*

I will never let fear win.

Wednesday, May 27, 2015

Victoza Diaries

Have you read the book Rum Diary? It's  a story about Hunter S Thompson's life as a journalist after the Eisenhower era- and his move to Puerto Rico and yes, it was very rum (and other, much more intense narcotic) soaked. 

This is my Victoza Diary. 

On May 15 I met with a brand new (I mean newly minted, AND new to me) endocrinologist. He was young, well-read, knew about blogging and we clicked. Really well. In fact, at one point he said 

"you're the expert in your diabetes, I am here to guide you to be the best expert you can be."

You probably need to read that again, go ahead, I'll wait.

So yes, we are on the same page to say the least. He was happy with my vitals, my numbers, my A1c etc...until he saw how much insulin I use vs. my weight. He looked at me and said "we can do better. There are things out there to help you feel better, would you like to discuss them?"

I mean...seriously, this guy must listen to patient feedback about how to talk about difficult subjects. We chatted about what I do for my exercise, and weight and eating. 

He told me he thought  that Victoza might be a good option for me to help me lower my insulin usage which may or may not result in weight loss. I told him I was willing to try, especially because I hate using so much insulin! It's expensive, and refilling my cartridge every day is annoying.

So he wrote the script and mentioned "some people experience some mild stomach nausea for a few days while they adjust, push through it-and lower your basals by 20% before starting"

Well.

Yes.

Mild is not how I would have put it, but ok Dr. NewEndo.

I started my dose at the recommended 0.6mg injection. On the first day I barely ate. I drank a lot of juice boxes and reduced my basal A LOT. The second day I was planning on going on a big (13km) hike with a friend. I reduced my basal by 80% total, packed gummy candy and a  good bunch of snacks and decided I wasn't going to let diabetes stop me. 

And I did it.

Around 7km in to a 13km AMAZING hike

So I ate a lot of ginger capsules- which do wonders. Every km or so I would have a bit of a snack: protein bar, fruit salad etc and I used regular Powerade and took small sips of it all day. I didn't go low until around km 12 and even then it wasn't "Serious" just was hovering around the 4.5 range-more of a risk to go low. 

The hike itself was amazing. It was a small island in the middle of our harbour that we had to take a small fishing boat to. It was used as forts during the wars to protect us so there were lots of ruins to explore. So great, my friend Megan was an ideal hiking partner and I would do it again in a heartbeat. 

On day 3 things weren't improving in my stomach, and I decided that I would cut back around half of what I was taking for Victoza and slowly work up to 1.8 normal dose. (This is probably where I should say I am not a doctor, I don't condone adjusting your medications without the advice of a doctor and who knows what I did to myself by doing this! Basically don't do what I did.) It worked for me though. Day 4 was much better on the lower dose.

Here's some of the hard numbers for those interested:
Average Total Daily Dose in April: 143u
Average Total Daily Dose over the past 9 days (since Victoza start): 88u

Carb ratio before Victoza: 1:6
Carb ratio after start: 1:20

Pre-bolus time required before Victoza: 1hr
Pre-bolus time now: 15 min

Insulin sensitivity before: 1u brought me down 2 (32 mg/dcl) points.
Insulin sensitivity now: 1u brings me down 5 (90 mg/dcl)

Weight change: over all 2.7lb down

I should note a few things:
-I have been intensely exercising every day because cardio some how fixed the extreme nausea.
-I have been extra thirsty had some dry mouth so my water intake has been 3-5x the normal amount.

I have not even reached the amount of my regular dose yet. I am somewhere around 0.9 now, and working up a little bit every day.

My daily caloric intake has been difficult to achieve because Victoza totally zaps your desire to eat. Especially while adjusting. It apparently can delay stomach emptying so it makes you feel full longer, which is all nice until you realize that you need to eat like 35more grams of protein to get to where you should be nutritionally. Weight loss is not as important to me as being extremely fit and healthy

So, my diary states it hasn't been all easy. It's been a feat for me to keep down some meals and very much mind over matter for a lot of daily tasks. But the results are worth it in my opinion. Less medication means so much to me, the closer I can become to being a normie the better for me. 

There are some pretty big adjustments on Victoza, it's not all glory. It's not a miracle drug and takes a lot of work, math and adjusting. I am still and will be adjusting for weeks. I think my story is somewhat exemplary from what I am reading. I am understanding that I am not the normal reaction to the drug. It is a new medication and can be costly if you don't have coverage, it's an injection if that sort of thing bothers you...

If you're interested and you think you are battling some insulin resistance I urge you to research and discuss with your doctor.

Tuesday, May 19, 2015

FDA Seeks Patient Input

Steve over at happy-medium.net posted about a new FDA draft.

The FDA is seeking patient input on collecting and submitting patient information, so FDA can consider the benefit-risk thinking of patients using medical devices like insulin pumps and CGMs.

The goal of the draft is to bring patient perspectives in to how it considers patient preferences when reviewing the devices we use on a daily basis to control o ur diseases (this of course will stretch past diabetes, as many others live with chronic illnesses managed by devices)

While I am not American, I urge you all to make a comment on the open draft here

Our group has millions of members in it, we can really make some noise if we all do our part in ensuring our preferences, desires and needs are being recognized by national regulating agencies.

Hey Health Canada: Can you hear us? We would love to help you, help us too.

Sunday, May 17, 2015

DBlog Week: Sometimes you have to kiss a lot of frogs to find a prince


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is.....well I fell off the rail so I am just writing.

I was doing so well.

Wake up, hulk smash breakfast, Slam coffee. Write. Tap tap tap.

Pour heart out on screen. Want to skip posting because what if?

Then Friday happened.

I wanted nothing more than to help Katy over at Big Foot Child Have Diabetes have the most wonderful birthday. Because her blog has brought me joy and laughter and furious nodding of  "me too, me too" and awe and admiration for years. Because last year at the Friends for Life Conference in Orlando I had a full conversation and a meal with Katy, I found her incredibly insightful, charming, hilarious and downright wonderful to be around and I HAD NO CLUE she was the same person who wrote a blog that I follow so closely. She never once mentioned that she writes the funniest diabetes blog in the blogosphere. Geesh.

Funny story, so I was sitting in my cab leaving the conference, heading to the airport last year with Karen (who happened to start this whole blog week thing, so you should know who she is. she is awesome.) And I said to her: "That lady in the sundress with the handsome children, well behaved standing and waiting for a cab, she is really lovely. Do you know her?" And Karen said "Oh that's Katy from Bigfoot Child Have Diabetes." So that's how I found out....driving past Katy waiting by the curb with her adorable family.

ANYWAY, I wanted to give a little something back to Katy on her birthday. She has a perverse love for knowing what people eat (so do I, we have a lot in common actually). But man oh man what a day Friday was.

I was going to meet my brand new endo, so I already had nerves.

I woke up, nice and in range. I ate a piece of peanut butter and banana toast and it all went to hell. I was on day 3 of my infusion site, so it was iffy anyway. But nothing was bringing my sugar down that day. I was high all. day. long. Until that night when I was low.

I didn't eat anything proper all day and I failed. So Katy, here's my promise to you....one day soon I will document everything just for you!


My new endo is amazing. He is young, fresh, and full of empathy. We had a great chat, was surprised that I was a little upset that my A1C was up .4% because it's still really great. But we talked long and hard. I told him about my blog, my advocacy, my job. I told him I am looking for someone who will bend rules a bit to help me fit into the role my diabetes has created. He said he is aggressive with treatments and will stop at nothing to make sure his patients feel like they are getting the best.

He said at one point "Well you're the expert, I am here to help you continue to be the best expert you can be." I choked up. No medical professional, especially not diabetes specialist has ever said that to me. They have never recognized that while our bodies have given up on insulin production we all remain very unique well-oiled machines.

He didn't even care when I said "I don't count carbs, I bolus based on foods, my feelings, my day and sometimes even where the moon is in the sky. So sorry, I don't have a carb ratio." He said....."that makes sense." Which proves, to me that he gets it. He understands that diabetes is more than what is in the books they read in university.

So to have a specialist that will guide me in being the expert...I consider myself lucky.

He is my 4th endocrinologist in 9 years and I guess it's true.

Sometimes you have to kiss a lot of frogs to find a prince.

In this case I did not kiss any of my doctors, but I want to kiss this man's feet for committing to help me.

Thursday, May 14, 2015

DBlog Week: Day 4- Changes


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is CHANGES.

Ok. First thing is first. Thank you all who read, commented and shared my post yesterday. It was very difficult to write, and knowing that I have a lot of people in my corner really does mean a lot to me. I also want to make a note that I don't think being thin or average or athletic or....being in a body is easier for anyone internally. Body image issues are one of the biggest challenges for almost every single person I know. It's not a unique to me problem so mad respect for everyone who loves themselves or is trying to!

Next.. changes.



All I can think of when someone says changes is Tupac. I digress (but man, that song is GOOD)

There are two major changes I have noticed since my diagnosis 25 years ago. I mean I guess the medications have changed (no longer using regular and NPH for the most part) meters have changed (no peeing on a strip to check sugar) pumps, pens, etc etc etc. There have been a lot of monumental changes in diabetes since diagnosis but I think there are two that truly stick out for me. 

1) Continuous Glucose Monitoring: Having the ability to see what my blood sugar is, how certain foods, activities, insulin, hormones etc can affect my blood sugar over all has definitely, without question extended the length of my life. Knowing and being able to react proactively to the roller coaster of diabetes has helped my body be the best for me. Being able to set insulin dosages based on trends in my blood sugars has absolutely given me a quality of life that I did not have before and for this I am forever grateful. I always think about the people who research and develop these amazing tools. If they aren't living with diabetes, are they  genuinely doing it to make other people's lives better? I wonder if they know the impact their knowledge, curiosity and enthusiasm for their science has on the day-today lives of millions of people around the world.

2)The diabetes online community: There have always and will always be support groups for people living with chronic illness. The power of "me too" should be counted as medicine for some people. I know that there are days where I can browse through one of the hundreds of blog posts, Facebook groups, diabetes hashtags on twitter, instagram, tumblrs and I will always be met by an influx of people who are also in my boat. It sucks when you think about it, but at the same time it is comforting. Anywhere, at any time, you can log on the Internet and hear "me too." It makes me feel less alone in this fucked up world of blood sugars, medications, complications etc etc etc. I think this has been a big change for me, I am more comfortable fighting for what I think is right. I know that I am not alone in my thoughts and feelings on generally any subject in regards to diabetes. I know, always that there is someone on the other end of my laptop or phone that knows exactly how I feel at any given time-and to me that is life altering. 


Plus, I can't even tell you how many amazing friends I have met through the doc. 





Wednesday, May 13, 2015

DBlog Week Day 3- Clean It Out


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is CLEANING IT OUT.

I have been thinking about this topic for awhile. Wondering, thinking and musing if I was truly brave enough to ever actually post it. Sometimes I love airing out my deep, dark secrets and then hoping nobody will ever bring it up to me in person. 

A silent acknowledgement that they have read what is plastered on the back of brain, and a swift move along. Understanding that our deepest inner thoughts are what shape us to be the people we are.

So here we are. I stare blankly at the screen. Am I ready for this? Is this how I want to verbalize some of my thoughts on this topic?

If you have ever met me in person, you know that I am fat. I have spent my entire teen and adult life battling weight gain. I have been through specialists, therapists and tests. Because, well...and this is where this may sound weird...it doesn't make sense that I am fat (and I think that this comes off wrong, I don't think it HAS to make sense that you're fat or not to be able to accept that being fat is OK and acceptable and perfectly fine.) It's not in my immediate family. I exercise...often. Usually intensely. I run, I lift weights, I am active, very active. I eat extremely well (except for when I don't I guess.) I manage my blood sugar tightly. I do what I am told by doctors.

I have tried prescription weight loss pills. The "sure fire" way that 99.9% of my endocrinologists patients lose weight! I followed the directions very specifically and was followed by a nutritionist intensely. I didn't lost a pound or an inch. I went through years of psycho therapy with the top therapist in the country who specializes in diabetes, chronic illness and behaviour management. He released me as a patient because I wasn't lying. I was trying. 

One day, my doctor did a test for Cushings syndrome. If you're not familiar with cushings you can see the info here. My doctor sent me for many tests, including an MRI and they weren't conclusive OR inconclusive. My blood tests showed moderately high levels of ACTH and my pituitary had a non-cancerous fleck smaller than is possible to diagnose. It eventually went away after close monitoring, my cortisol levels remain high no matter what so the endocrinologist calls it borderline. She also explains that my body releases cortisol which helps the body hold on to fat cells (in layman terms.)

So I am in a rock and a hard place I guess? My exercise is vital to my blood sugar stabilization, mental health and overall well being and it causes cortisol production. See the problem?

So in the past year I have decided to give up the ghost of weight loss. I don't think I will ever lose weight. I am not and have not given up the idea that I will continue to be the best and healthiest I can be. This does not give me free reign on junk food and lack of exercise. This is simply me taking pressure off myself to fit a certain mold of what a healthy, beautiful body looks like.

I'm going to let you in on a secret: it can be absolutely torturous being fat in today's society. There are days that I wish I was given any other body. Dealt any other hand of cards. I will see women at the gym who can run without ankle pain and contort their bodies in Yoga poses that I could only dream of doing due to the size of my body. I often go in to clothing stores and thumb through some of the beautiful fabrics, cuts and styles knowing that I am getting side eyed because the clothes in those stores will never fit me. It's not self-deprecation, it's a cathartic release in ways for me. It's like letting go of what won't be.


A lot of people say that my feeling of being judged based on the look of my body, rather than what it can do, is in my head. I often hear that. Maybe it's partially true. But have you ever read any article about Tess Holliday? She is a size 22 model (same size as me, though our bodies are composed slightly differently), and the words that are thrown at her are flames licking a candle. Sometimes they make her thick outer wax melt down and break her down. I have seen her respond sometimes and I feel for her. She is an absolutely beautiful woman, the first woman who is plus sized (and by that I mean not size 14) who is a professional model with an international agency and people write comments-THOUSANDS of comments about how they feel physically sick looking at her.

These are real people making these comments. I am not a model, nor do I pose like one. Are these people ringing me through at the grocery store? Do they see me fill up my car and need to feel pity and disgust at my body?

When I am out with my fiancé are people wondering what the hell is going on there? He is 6'5", masculine and lean...and incredibly good looking.

These are things that sometimes flutter in my brain. I try really hard not to read the comments, or articles on the Internet about weight because now that I feel mentally healthy enough to accept that my large body can be extremely healthy if I put the effort in, I don't want to waive on that. 

But when every second post on my Facebook feed is about weight loss, Beachbody, shakes, low fat, high fat, low carb, high carb. Every single person talks about food and weight and bodies and fitness like it's some sort of life achievement to be strict and  in control of all of these things. If being in control of your body is something that gives you actual, genuine joy: congratulations-keep it to yourself.

Tell me about the joy you get from cooking a meal and eating it-no matter what it is. I want to hear it.
Tell me about the joy you get from hiking in the woods, or running a marathon. I want to hear it.
Tell me about the joy you get from reading about different trends in the fitness industry. I want to hear it.

Do not tell me how to do any of that. I have my body acceptance dangling by a string and when you share these things with me thinking they may help me lose weight no matter WHAT your intentions, you are effectively cutting my string (and being a dick.)

I don't need to be told I am beautiful. I truly don't. At least not by you. If my fiance is reading this: you don't get a pass you still need to tell me I am beautiful everyday for the rest of our lives ;)

There. I cleaned it out. My body image is surprisingly well for someone who the media, and assholes on the internet says should hate everything about themselves.

Edit:

I decided I am not done. 

When you live as a fat person with a chronic illness like diabetes, you are often seen as a pity. What a shame. Poor girl was dealt a hard life.

My life is wonderful. I am thankful that I have you, reading and commenting.

This community has built me up to believe in the good in people, so keep doing your thing.

Unless your thing is constantly talking about weight loss. Because then all I hear is "I never want to look like Alanna."

Tuesday, May 12, 2015

DBlog Week Day 2: Keep It To Yourself


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. This weeks prompt is KEEP IT TO YOURSELF.

This prompt is supposed to be what we keep to ourselves when we are blogging and sharing our lives with diabetes. There's not a lot diabetes-related that I keep to myself. I try and be as open and transparent as I can.  That is the best way for us to foster the community of "me too."

Sometimes I think about keeping my scares with complications to myself. But then I remember that complications are nothing to be ashamed of, despite what we are told by our healthcare providers, media and sometimes other diabetics.

Sometimes I think about keeping my opinions on caring for a child with diabetes to myself, but then I remember that the parents that read it may be struggling to truly know what their child is feeling or thinking, so I tell them. I let them know that I was there.

So what DO I keep to myself?

Usually I keep my mundane day-to-day life to myself. I tend to keep my work in diabetes separate from this blog as much as possible, and my family stays off my blog for the most part.

So I guess I don't keep A LOT to myself. Except that my blog has been majorly lacking in posts lately.

Did you know you can find me on twitter @lifeont1? Come say hi. I'm a lot more chatty there :)

Monday, May 11, 2015

Diabetes Blog Week 2015: Day 1- I CAN.


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. This weeks prompt is I CAN.


Man oh man.

The words I can mean something different to everyone, every day, every hour, sometimes every minute.

To some people I CAN can mean they can run a marathon, climb a mountain or swim across the English channel.

To others I CAN can mean they can open their eyes and face the first few hours of the day before going back to bed.

I, personally, can be anywhere in between the two. Thankfully I am mentally and physically well enough that I don't often find myself needing to be in bed during the day, and thankfully I don't feel the need to run marathons or climb mountains (there seems to be a lot of logistics there that I simply care not to deal with.)

I think the importance of the words I CAN will mean something different to everyone, especially when you are living with a chronic illness like diabetes. The best thing to do is embrace it and understand we all have varying levels of I CAN and they are all equally valid.

Here are a few I CANs that I will try today.
-I CAN ignore rude comments from strangers about diabetes
-I CAN compliment a friend or family member today
-I CAN pick up the phone to call a loved one just because
-I CAN win this damn fitbit challenge
-I CAN lay on my deck with a big glass of wine and not feel guilty
-I CAN be a good, empathetic person


Thursday, April 30, 2015

The Face of Hope



This is my face approximately 20 seconds before bursting in to tears.

Relief.
Happiness. Determination. Hope.
Fear.
Thankfulness.

I stood with Derek Rapp from JDRFI and chatted.He pulled this small band-aid like piece from  his pocket and offered me to hold it.

It was surreal. This device would fix me. It could fix me. IT WILL FIX ME.




It's so small, I fingered its rounded edges as he talked to me about how important caring is, about diabetes, and about my job. I held on to it, and imagined walking around without a pump, or a bag or glucose tabs.

I imagined putting my running shoes on just because the mood hit me, not because of a roller coaster of diabetes.

Everything came crashing in and my eyes welled up. We snapped the photo and I cried.

Everything came out and Derek wrapped me in a hug and just said "thank you for caring."

When I fundraise now, I am selling hope. More aptly: I am selling the idea of hope.

This is a better future. You may not have diabetes or have loved ones with diabetes. But wouldn't you feel better if we created a world where the burden of a lifelong chronic illness was less?

This was my first moment in my history with diabetes work that I truly felt an end may be in sight. It was a very raw and overwhelming feeling.

I can't do it without you.

Donate, donate, donate.


We can't create this world free of the burden of diabetes without our community.

Please, take a moment and reflect on what this would mean to you, your friends, your loved ones.

It's one less scary thing to face in the future for you.

It's one more thing for me to live for.

If you can not donate, join me. Join my walk team, make your own team, contact your JDRF chapter.

It took a village to get here. It will take many more to keep going.

Thursday, April 16, 2015

#dayofdiabetes Recap

Hi all!

Yesterday I took part in an awesome advocacy movement called #dayofdiabetes. It gives people a glimpse in to what daily life with diabetes can be like. It's also interesting following everybody else's days to see how dramatically different we can all be in our personal care and treatment.

You can check  out my storyfied page right here.

Let me know your thoughts in the comments below.

Thanks for following!