Wednesday, August 29, 2012

Rollercoaster ride. I don't like rollercoasters.

I am very frustrated with my D and I can't even figure it out. I know it's pretty normal to go through phases like this, but I was intending to get my hba1c done this week and I have completely scrapped that idea since the past five days have absolutely NO reflection on how hard I have been working or how tight my control has been since I started my new pump.

I have been in tears twice now since Friday just because I feel so helpless under this weight of pressure I have on myself to prevent my toes from falling off, my kidneys from failing, my eyes from going, my heart from stopping.

I have been having a massive week of self-pity and self-loathing and it has dissuaded me from even reaching out. I feel almost embarrassed that after 23 years I am still spiking between 13-19 (234-332) for days on end when I am pummelling insulin, changing infusion sets, increasing basals, checking 10 times a day, changing tubing, changing insulin, carb counting to the extreme, logging foods, exercising...I am EXHAUSTED with all this effort and no return lately.

I haven't even taken part in the DOC chats or communications on twitter. I have only seen a few blood sugars under 9 in four days and it's unexplainable. The only possibly explanation is it has something to do with hormones and I may even out in a week. Just look at these charts (even though I am embarrassed!)



5 day average at 9.2 (165 mg/dcl). Sigh.

Those orange dots make me so anxious and sad.


 It's so important for people to realize that this is only me being hard on myself. Honestly if I saw these numbers for someone else I wouldn't judge or guess their ability to control their own diabetes. Everyone has different targets, ranges, abilities, wishes etc with their diabetes.

I just need to kick my D in the ass and tell it to work with me, not against me.

Friday, August 24, 2012

Gluten free test

I had always hoped I would never have to do this.

After a week of stomach distress I was advised by a medical professional to give eating gluten free a try for a few weeks to see if that settled things down. If it did I should book in with a gastro specialist and have a colonoscopy and do the full screening for celiac.

I don't want to. I want just a little part of my life to be easy, I battle a hard battle every day with diabetes. Cooking and enjoying what I cook has been such an easy release for me. I don't want to be part of those households that has separate everything for food. Food to me is so important, it brings family and friends together and helps create an atmosphere at parties.

I guess this will be an interesting few weeks.

Please help me with a grocery list. I am having a lot of trouble facing this! What are your favourite gluten free foods?

Wednesday, August 22, 2012

Jack Layton's Words and Diabetes

Today is the year anniversary of Jack Layton's death. While I may not fully support all NDP initiatives in Canada, I lean somewhere between red and orange.

However, Nobody can deny that Jack Layton was an inspirational, powerful and charismatic leader. The day he died I was still reeling from my father's cancer diagnosis several months previous and it hit  home. I remember sobbing uncontrollably at my desk until I read this letter:




So, I leave you with his final paragraph to really sink in:

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world."

I feel that Jack's words resonate with me every day now. I often reflect back to this letter. I have it saved in my email for when I am feeling down and remember that he was facing his death. He obviously knew he was in his final hours and yet still he encouraged others to be positive and not feel despair. I think that as diabetics living in a world where people are shamed for being fat, having different bodies, and are blamed for their diabetes we need to keep his words in our minds.



The world needs more leaders like Jack.

Jack in April 2011. Image courtesy of rabble.ca

Tuesday, August 21, 2012

The first #CANDOC Chat!

Last night I moderated the first #candoc chat on tweetchat.com. I was totally 100% excited to connect with people living with diabetes, either themselves or family members, across the country. I had chosen to start our first chat with taking ownership of diabetes and how to discuss it with others.

This is a very important part of living with diabetes in my opinion and it generated some great discussion. We had some great content on discussions about the current state of Canadian Political involvement (provincial and national) in diabetes care, how to self-identify etc. There was lots of input from people living with Type 1, Type 1.5, Type 2 and care givers (d-parents)!

My favourite moment of the chat was when people started answering the fourth question about pride in themselves and the diabetes that affects them. It was absolutely wonderful to sit back and see people shed a positive light on such a difficult disease to live with.

I think the DOC has a good thing going and the cauldron is bubbling waiting to explode with something awesome. I am so happy to be a part of it.

Next week BestiesBetes will guide @theCANDOC on a discussion about fitness and diabetes. I can't wait!

And the following week a super d-parent herself, Sara (@NitaCure4T1D) will be moderating a discussion on school and being a caretaker.

A special thanks/shout out to: Cherise at Diabetes Social Media Advocacy for sharing her ideas for a weekly chat. I have been following her chat as much as I can but it's a little late.

For your information there are also chats being held in Australia and Great Britain, so with all of us stirring up support and empowerment, the DOC is open 24/7!

Congrats and thanks to everyone who participated. I hope that one day our diabetes online community can have a conference in person to hold such important discussions face-to-face.

Did you participate or read through the chat? Favourite moment or improvement note?

Friday, August 17, 2012

These Risings and Fallings Mean More Than Moods

The title of my blog today comes from a song written by an old (T1) friend who wrote about the roller coaster days of diabetes, and I couldn't think of anything better to title my post today. All about mental health and diabetes.

For a long time I was often told that I was depressed, sad or sometimes said mean things. Often I was told this by family and health care professionals. I was told this not because they were trying to hurt me, but because they saw the roller coaster I was on as just that. I may have seemed depressed, sad or mean but it wasn't me, it was the D. Let me just say, as someone who tries VERY hard to be a nice and tolerant to everyone I meet, it's disheartening to hear this.

After reaching out to the DOC (diabetes online community) and carefully monitoring my everything during the roller coaster ride, I have come to the conclusion that diabetes is a whole mind AND body disease. It affects our blood sugar, kidneys heart, eyes yadda yadda...we are always told how detrimental having out of control blood sugars can be on our body, but why have endocrinologists never addressed that sometimes, you will feel blue for no reason? Why weren't we told that we would be often be told my friends, family members even doctors that we were blaming the disease when it wasn't that at all? I have never felt anger about beign diabetic, I don't remember what it's like to NOT be diabetic.

We are often having fingers pointing at us saying we could lose toes, kidney function, eye sight for being the way we are, but no body puts a hand on our shoulder and says "don't listen to your body right now, it's reacting to your roller coaster, you're not a shit head"

So the more I followed my patterns the more I started to understand that diabetes is intertwined with mental illness so tightly I don't even wish to separate the fact and say I am "depressed" because the depressed I feel does not last weeks or months, it lasts maybe a day and now I know why. People who suffer from depression and other like-mental illnesses deserve more recognition for their struggles and people who live with diabetes deserve more shoulder patting than finger pointing.

This all came to me the other day pretty suddenly, actually. On Wednesday night I woke up at 1 am to a blood sugar of 1.9 mmol/L or 34 mg/dcl. A relatively severe low to say the least. I laid in bed sucking on a juice box just wishing for everything to just leave me alone. I was willing myself to treat the low rather than ignore it. Trying to convince myself that getting up and eating a half cup of peanut butter was a bad idea because of the enormous amount of calories and I just laid there.

I laid there feeling awful, I felt physically horrible because of my low, but I felt mentally awful for failing, yet again, at something I should be masterful of! It's been almost a quarter century with this disease! How can I possibly be this low for no reason! As I was mentally beating myself up, I checked my blood sugar again 15 mins later and I was comfortably at 5.9/106. I lowered my basal for three hours by 20% and fell back asleep.

Fast forward to 6:30 am. I wake and I am 3.4/61. I was so frustrated. And sad. And confused. I just ate my breakfast and went about my business as normal...forgetting to bolus for the food I ate in addition to the juice I drank. I am sure you can see where I am going to end up here...

At 10am I check and I am now 16.4/295. I am parched, my heart is racing, my eyes feel heavy and I need insulin. I do a correction and I feel sad. I feel a heavy weight over my body like a fog that I can't get out of. I correct and slump into my work for the day.

I tried everything to pick me up that day and nothing did. Not a bike ride, or my favourite show, or walking my dog...just nothing. The only thing that made me feel better was sleeping. It's exhausting fighting a battle like that day, jumping  through hoops just trying to feel healthy and normal. And I really do believe that if our hormones are so messed up that they aren't doing their job for one thing, then it's fully possible and even probably that our ability to cope and process adrenaline, serotonin and all of the other feel good hormones is completely messed up too.

I know I am not alone. But it's important that to be aware of the risks and complications of diabetes, and those include days where we aren't ourselves emotionally, mentally AND physically. I am so very lucky to have a partner in life that helps me through these tough days, he totally understands and reminds me of the hard things I deal with on top of every day life. He reminds me that tomorrow is another day, and for that I will be forever thankful.

Tuesday, August 14, 2012

On Diabetes Camp

Today is a hard day. I say this because I have been mulling over if I should post about this today or just keep it to myself, but I decided that this is the ideal place to air it out.

Snack time


Today is the day that the diabetes camp I went to growing up and worked at through my adult life starts for a week. I imagine that right now there are many homesick little T1 kids getting consoled by the entirely T1 staff. I am sad only because I am not there.

Theme meal :)


There's something called camp magic, that you can not put into words, pictures, song or anything. It's simply a feeling of home that isn't home. Everyone talks about diabetes camps being a pwd's home away from home, the place where they feel like they aren't being judged for taking needles or sitting out of an activity due to blood sugar...but it's more.

Hearing stories at game time


It gets to be part of your soul. Diabetes camp binds itself to your being as a child and as you grow it remains a constant that will be there even in your darkest hour. The friendships I have made as a child and adult at camp have surpassed anything I have experienced outside of that environment. It was the one place, for the few weeks that I felt I could truly be myself. My comfort zone got expanded at camp exponentially with every new experience.


A quick bolus before swimming


I gave my first shot at camp. I had my first kiss at camp. I learned the effects of child abuse for the first time at camp. I witnessed my first seizure at camp. I sprained my ankle for the first time at camp. I met my first university roommate at camp. I got stung by a bee for the first time at camp. I learned so many skills outside of diabetes care, I can not begin to list them, but my major skill that I will never forget is to love my fellow humans, for every one is fighting a hard battle every day. It's something that sticks with me, and I try to be kind to everyone....or at least give them a chance.

This camper was terrified of the water, but overcame his fear at camp :)


A few years ago I took a job that somewhat prevented me from continuing my life at camp due to allotted vacation time. I was heartbroken. Trying to explain this hurt and ache to people who have never been to a camp and felt that soul quenching magic can not be done. I get teary and nostalgic every year when camp time rolls around. I go through old photos and try and find old friends on Facebook and Google. Every year I try to find a way to fill this void, but memories are all I have. I feel like I have so much more to give to camp, the children that go and my friends who are working so hard to create that magic for others. I don't know how to do this without being physically there. I will continue to live on my memories for now, but I need to figure out how to keep my magic alive.


Pure love.

Friday, August 10, 2012

It's all about acceptance, and comfort.

I have had a few moments this week that have blown my mind. And they have all been diabetes related.

This blog has been the beginning of a major step in my self-care, as I described in my first post, so I will start by saying that.

I have a T1D friend who is in the process of switching from MDI to a pump. She has been apprehensive about it, understandably, for various reasons. It's a visual constant reminder of your diabetes, it opens you to the possibility of more severe highs, but most importantly to her: it changes the way you manage your disease completely. When you have been living with T1 diabetes for 25ish years like myself and her, making such a drastic change can be terrifying. I mean she has gotten this far and is relatively unscathed, but as she noted in our conversation about pumps: she feels like she is managing a different disease than me or our dfriends who are also pumping.

As members of the DOC (diabetes online community) know, feeling a social disconnect from others who have diabetes can create a major barrier that nobody, no endocrinologist, no psychologist and certainly no family or loved one can reconnect for you. She mentioned that she had been reading my blog (hey, girl!) and that I had noticeably taken a new vigor towards diabetes awareness and advocacy.

It's 100% true, and I told her that my new pump (I made a switch to Animas from Medtronic) as well as my desire to just be healthy made me search out the community I felt I was lacking in a major way the past few years.

See, when I was only dxd for 3 months, my parents shipped me off to diabetes camp. At the age of  7 and taking only 2 units of N and 1 unit of R insulin, in 1989 I was scared, but also amazed that there were so many other kids like me! And I fell in love. I fell in love with the bonds I created at summer camp, the friends I made (including the lady I am referencing now) and the feeling of acceptance and understanding. When you are low and cranky, people try to understand but they just don't. They can only nod and say "I hear you" when you bitch about going through 4 infusion sets in one day for no reason. They can only provide a shoulder to sob into when you come out of your endocrinologist appointment, feeling like a failure to yourself. What diabetes camp provided me will never be matched again in my life in terms of value of self acceptance.

The past four years I have not been connected to diabetes camp, due to "real life" getting in the way. And I have been missing that sense of connection and acceptance in a big way.

So this morning, being a Friday, I went to Starbucks to get my treat: venti iced coffee with sugar free hazelnut. As I ordered, I had the following conversation with a man behind me....around my age (28ish):

Man: I have a weird question, and please feel free not to answer.
Me: Ok, shoot
Man: Do you feel your insulin pump?

At this point I was kind of shocked because I always wear my pump in my bra and I wasn't wearing a low cut shirt....and then I realized that my infusion set was displayed vibrantly (I am wearing a pink one) on my upper left arm. the irony of this situation has not passed...

Me: Actually, I forgot I was wearing my site on my arm and was confused as to how you noticed, so no I don't usually feel it.

As we got to talking he told me he had been using needles and mixing insulin since he was 5, he said it has been well over 22 years for him doing this and his doctor had suggested a pump just last week! I was absolutely shocked that someone was still using needles and mixing NPH etc. And I explained to him the benefits that I see, the convenience, the ability to control the diabetes. I asked him about ever going to camp, and he said that he grew up out of province where there was never a big push for it. At that point I had referred him to the endocrinology clinic perhaps giving him a little more perspective (and certainly more professional advice) on the newer technologies and treatments available. The comment that he said that truly stuck out for me was that he wasn't sure about the pump being comfortable.

I took it as face value, being physically uncomfortable. But maybe he meant it will take him out of his comfort zone. I guess I will never know.

What I do know is that I have to remember that this disease is so personal and everyone treats it completely different, and sometimes I have to have a slice of humble pie to be reminded of that.



Wednesday, August 8, 2012

iBGStar: a non-biased review

I have been without a computer the past few days at home which is why I am drafting this up on my lunch break at work and will post it later.

I am absolutely loving the iBGStar system. The ease of use, to the graphing has made me want to check my blood, and more importantly strive even harder to keep my sugars in target. I thought that I would really miss the remote function for my Ping, but the convenience and the cool factor of the iBGStar makes up for the convenience of digging the pump from my bra.

Thanks iBGStar/Sanofi Aventis for listening to what your consumers want! Now, if you could only make it able to check for blood ketones, we would be golden :)

A few photos as of this morning. I am not doing too bad, but I want to be doing better.**




Photo of the iBGStar courtesy of newswire.ca


Most of my dots are in range :)

Clearly need to re-work my supper time CHO ratio.

55 tests in 5.5 days of owning this!

Not bad post-breakfast :)
**please note this about my diabetes, and my personal goals. Your diabetes may be different, and that is just fine. I have set personal goals which does not reflect my opinion on anyone ele's goals or targets, and certainly is not to be taken as medical advice. Diabetes is a very personal disease and you and your medical team should decide your target range.

*** this is a 100% non-biased review. I was not paid by Sanofi Adventis, nor was I given the product for free. I paid for it out of pocket.

Saturday, August 4, 2012

New toys!

I have been thinking about switching up my tester lately. I love the ease that the One Touch Ping gives me of being able to bolus directly from my meter, but it's bulky, and the graphs and pattern awareness tools are just majorly lacking in clarity.

Finding my patterns is something that I am really focusing on so I decided to research which tools I could use to do this. I narrowed it down to the new Verio IQ and the iBGstar. For now I went with the iBGstar if only for the gadgety aspect of having it all on my iPhone. I have my phone on me at all times and it provided a really clear way of seeing my charts.

Now my pharmacy provides the meter free with a pack of strips, so maybe next month I will try the VerioIQ and decide between the three options and the pros/cons.

Anyone have any other suggestions? Preferences?

My AM bg. It looks so pretty!