Thursday, September 22, 2016

Dusty

If you exhale deeply around this blog, dust will fly.

I always see things that I want to write about, but then I sit in front of my screen and it remains blank.

I find myself struggling with getting words on to the page and believing they are worthy of pressing publish.

So here are some snippets of thoughts/responses I have had in no particular order.

Dexcom rash

I have fallen victim to the evil Dexcom rash. Back in July, after I returned from Friends For Life I took a brief break from wearing Dexcom. The first sensor I put on after my trip gave me a slight rash, and I only got around 6 days of wear vs my normal 21-36 days. I pulled it, and put a new one on a new site. That was the one that made me realize I had a big problem. It was only a few days before my leg was swollen and rashed, I took the sensor off and it was awful. The rash lasted days-and I have never been so itchy. I took to the Facebook Dexcom Rash group....and I have found a temporary solution. Here are the steps I take:
-Emulsify some hydrocortisone on the location, let dry.
-Spray steroid nasal spray on the area, let dry.
-Place a DuoDerm Extra Thin hydrocolloid patch in the shape of the sensor (I tried tough pads. Allergic!)
-Place two layers of bioclusive barrier tape over the the hydrocolloid
-Place sensor on top of the bioclusive and shoot right through.

It's a lot of steps and a sensor change is time consuming, the products are extremely expensive...but it's worth it having the access to my trending glucose numbers. I still only get around 7 days out of a sensor, and as my insurance doesn't cover them I am spacing out the use of the sensors as much as I can. This has resulted in some unsavoury blood sugars, highs that I don't catch as quick, and lows that required hundreds of calories, resulting in my gaining a few lbs back after a brief period of loss.

Adult-onset T1D/LADA

I saw this article the other day and I am still trying to wrap my head around why this was/is not bigger news in our world. I was diagnosed at a time where the term juvenile was still used to describe the type of diabetes I had, I spent important years of my career development working for an organization that focuses on children with type one diabetes. If you know me, you know that my life has involved being engaged in my husband's health as well. I wrote this article over at A Sweet Life about his new "pre-diabetes" and/or non-diagnosis. It's been a frustrating time in our healthcare system, trying to be a wife first and a worrier second has been a challenge for me. He recognizes me trying. His doctor is shrugging it off, which means he is shrugging it off.

We have been eating well lately, we haven't been going out for meals and I have been putting a huge effort in to cooking absolutely everything from scratch. Low refined carbs, high in whole grains and stuff that really fuels you. We walk together and exercise together....but that's it. That's literally all that can be done. It's so FRUSTRATING. His blood sugars have been stable, no real spikes....we even had Chinese food a few weeks ago and I made him check his sugar an hour after and he was around his normal waking sugar (which is slightly elevated, but nothing the doctor seems to think is in a danger zone.) I have requested a c-peptide test from his doctor. And so we wait. We wait to see which side of the statistics my husband falls on. And I hate waiting.

Inspiration Lacking

As the summer winds down, and I don't have a whole lot of positive to look forward to (my work contract ends in November which means I will be unemployed again, and that's stressful), I am finding things...lackluster. I don't have a whole lot of inspiration to be creative or spread joy. I am not sad, or unhappy in life in general...but nothing really appeals to me. I feel a bit monotonous. Last year at this time I was planning my wedding, so I was easily distracted at the ennui that often blankets me as the air gets colder and the days get shorter. I would like to plan a vacation, but with an uncertain future of employment, it's hard to do both time and cost-wise.  I wish I had some stability in my professional life, it's really irritating to know that I don't. I worked so hard to get myself through university and get some experience in the "real world", I kind of wish finding a new permanent job would come just a tiny bit easier. I don't think I am entitled to every job out there, but to at least be considered for these ones that I am applying for would be great.

I wish I could find some creative energy, that makes me feel alive. Like when I have a huge burst of ideas to write about and can't type fast enough to get my thoughts out. I just don't have that energy. As of now the energy I have is spent doing boring adult things like exercising, cooking, cleaning and job searching (and of course working at my current contract work....which is extremely intense).

I wish there was a conference that I could afford to go to really soon. I would really benefit from seeing and talking with some of you.


Some Good News

All that being said, I was recently invited to take part in a Patient Orientated Research Network by Diabetes Action Canada. This is very exciting for me as someone who is a strong advocate of patients actually being consulted before organizations and researchers make big claims about life with diabetes. Engaging patients is never, ever a bad idea if you are doing research for bettering the lives of those patients. I don't have all the details yet, but I will of course blog about my experience the best I can. I am excited to actually have my voice heard....hopefully :)

That's about it right now. I don't have a lot of inspiration, or words of wisdom these days. I am relatively hum drum.

EDIT: As I reread this post it came off a whole lot more negative than I intended. I am okay, really. I am not in a bout of depression (THANK GOODNESS), just feeling a little less than motivated by life these days. It happens....I think it's called being an adult ;)


Wednesday, July 13, 2016

Masterlab: Diabetes Hands Foundation

To say life has been a whirlwind of the highest highs and lowest lows (emotionally, not blood sugar...ly) over the past 6 months would be an epic understatement.



When I was offered to travel to the Friends For Life conference this past week and attend Masterlab hosted by the Diabetes Hands Foundation- I was absolutely excited...and incredibly anxious.

On a good day, meeting new people can be hard for me. I struggle with small talk, and sometimes I launch in to a complex topic involving big opinions, when the person simply wanted to know where I was from, and how my day was going. I sometimes find myself editing conversations before they happen. I wasn't always like this, but going through a job loss, and a massive life change like marriage all at the exact same time is hard. Re-finding my meaning, and ensuring I am still who I am after bomb after bomb detonates in my life means my self-esteem and self-awareness are on high alert.  So being in a group of thousands of people who are always ready to greet you with small talk, and big hugs was a challenging thought for me.

Of course, I am never one to back down from a challenge.

Masterlab is a one day workshop for people looking to elevate their advocacy efforts to make the lives of people living with diabetes better. It brings together advocates form all over the world and has them in one room to listen to some great speakers. I did take some great notes on what I learned from some of the speakers.

I will say that I didn't take notes on all of them. I got some great global ideas, but the heavily Americanized presentations were soaked up with moderately less vigor than those that had broader ideas in advocacy and bettering oneself.

If you think that what DHF is doing is remarkable, please support them! You can make a donation HERE

Onward! Here's what I have in my notes and memory:



Roniece Weaver was a fantastic speaker and presenter. She works with primarily low income and at risk communities to better their health, up their health literacy, and help them secure fresh foods in food desert areas in central Florida. She is a certified dietician, an educator and a kick ass inspiration for what a woman can do when she is driven and dedicated. Hebni Nutrition Consultants work tirelessly with the people who need help the most, but most often wouldn't be able to afford proper nutritional counselling or specialists. She has worked with mom and pop shops in at-risk communities to bring in fresh fruits and vegetables giving people (most often minorities) choices in their grocery trips. Then, she goes the next step, and sets up in community centres, or her office to teach these people fast and easy healthy foods that they can create for their family.

Anyone who knows me, knows that I am passionate about people understanding what healthy actually means. I am not someone who would ever judge, shame or blame anyone for their choices, but knowledge is power. Roniece understands that. She put her knowledge and drive to good use.

I think a lot of advocates can learn from her. Not only is she helping people who are living with or at risk of developing diabetes, but she has taught us that we can achieve whatever we are putting our mind to. She explained how to search for grants and government dollars for special programming like her Mobile Food Market.

Her Mobile Food Market is a bus that brings fresh fruit and vegetables to schools and communities and sells it at a discounted rate. This is breaking down barriers for people who may never have seen a fresh tomato in their life. For more information on the Mobile Food Market and what Roniece does read HERE 




George Huntley and John Griffin gave me some great ideas for a future blog post. I won't get in to that now, but I will say their dedication to making the lives better for people with diabetes is incredible. John is a lawyer and George comes from a biotech business background, but they both work tirelessly with the American Diabetes Association ensuring people's rights are protected as they move through their lives with diabetes. 



Ellyn Getz presented on the importance of participating in research and clinical trials in order to advance our lives with diabetes. I found her information useful, even though I was already familiar with a lot of it. I think she gave a fantastic overview of the participatory process for patients, and encouraged everyone to get out and search for some trials if it would be something they would be interested in.


While Jay Keese's presentation was heavily, heavily geared towards Americans, I did get some great snippets from him. He was an excellent presenter with a LOT of fantastic motivating information for us. He works with the Partnership to Fight Chronic Disease, and advocates for better policy and treatments for people at risk of, or living with chronic illnesses. He has a lot of experience shaking things up and his tips were as follows for getting on your legislators good side:
-Register to vote
-Get involved
-Get out to an event hosted by your representative
-Always start small
-Research what your rep is interested in and know your role
-Research and fully understand where and how decisions are made and once again: GET INVOLVED
I agree with a lot of his messaging and would have loved to be able to have him expand with some Canadian content.

 
Hope Warshaw and Kurt Anderson presented on AADE (American Association of Diabetes Educators). I was half tuned in during this presentation as it didn't relate directly to me or my care/advocacy plan. However I found it fantastic that Hope and the rest of the AADE team are working on expanding their members' engagement with the online community. When professionals start to understand how important the online community is to a patient, there is an evolution bubbling underneath. I also noted that Hope and other AADE members pulled aside a Masterlab attendee after the day, to speak to them about their research in the importance of patient communities.
 
I wonder how I can transfer this knowledge to Canada? I feel like a tadpole in the ocean here with very little voice. My writing and advocacy is better recognized in the USA and I feel that is wrong. I am legitimately more effective in the US than here, and I want nothing more than to change that.
 

Dr Mark Heyman was one of my favourite presenters of the day. Over the past year or so I have severely struggled with separating my personal diabetes from my advocacy. I was trying to find a balance in sharing what is necessary and taking care of myself. Mark gave a fantastic presentation on how to practise self-care in the world of chronic illness management. Dr. Heyman lives with T1D and practises what he preaches.

We did some activities with the group, discussing what our biggest barriers to self-care was, was my favourite.

In the room we had people who were living with or caring for all types of diabetes, from all parts of North America, and all different  levels of access and understanding...however we all seemed to have the same barriers to self-care:
-Guilt
-Anxiety
-Logistics/time
-Boundaries
Just looking around at the incredible diversity in the room and being equally connected to those people in our frustrations with being an advocate felt really validating.

After Mark's presentation I felt less guilty about taking a break from my personal blog to focus on my own care and mental health. After Masterlab I had a chance to talk to Mark at the lobby bar, and I can confirm he is a fantastic person to chat with as well. I truly respect him and wish that his services were closer to me. San Francisco is a bit far to travel for a mental health specialist appointment, I am not sure my insurance would cover my travel expenses ;)


So..what did I gain?

Vigor.

I needed a boost, I needed to be reminded that my voice isn't as weak as I had been made to feel in the past year or so. I learned that the work I have done is valid, even though I was told it wasn't. I learned that we have SO FAR to go in Canada. I need to develop closer connections and continue to bring this knowledge home, and spread it.

So in my spare time I am continuing to research and build on my knowledge.

Thank you, Diabetes Hands Foundation. While there were bumps in the event, it was an incredibly valuable and rewarding day on a personal scale. Meeting people face-to-face to discuss our similarities and differences will forever be the most useful part of these events. I love to learn, and facilitating that means so much to me.
 


Monday, July 4, 2016

Friends For Life The Third

I am sitting on my deck right now enjoying an ice cold diet coke in between loads of laundry and other last minute details before I depart for Orlando tomorrow.

The sun is blinding and hot, but the breeze is cooling my skin enough to remind me that this is a fabulous life I have built for myself (and also maybe I am trying to soak up the last bit of cool breeze I will have until Saturday)

I just finished mowing the lawn of the yard that my husband and I have tended to for the past 3 years, and even though it's sweaty hard work...it's worth it. I had this odd feeling, before I went outside though. I am wearing my Dexcom sensor on the back of my arm, and I threw on an old tank top since I knew I was going to get dirty. I worried for a brief moment if my neighbours would see the odd piece of machinery on my arm and question what it was. It's not that I even care when people ask me what these things are, it's just...a feeling that I can't put my finger on.

When I was laid off in February, my life kind of crashed a bit. I felt like the rug was pulled from under my feet and I had to seriously decide on what to focus on. I realized in February I may not be able to make it to my now favourite event of the year, the Friends For Life conference, due to finances and potential new employment.

In steps the Diabetes Hands Foundation. They are graciously sending me to Masterlab to talk about my advocacy, and to learn about others' advocacy. Being in a room surrounded by powerful advocates, each with their own special toolkit, and being understood is key to being able to raise awareness and live healthy.

When I was younger, I was a part of a very close knit diabetes community in camp. It was my one week a year where I was welcome, understood, and everyone else felt the same way I did sometimes. Over the years, I grew up and worked at the camp. Eventually I had to stop working at the camp because real adult life took over, and I drifted from that community. I still have a small group of very close friends who I made at camp...but I no longer feel like I am part of the camp community. For a few years that really hurt, and I couldn't find a replacement. Cue finding the Friends For Life Conference. I have been so lucky to be able to attend the past few years, it is truly an honour to now be working at the conference. I am a firm believer in having a community of people who can say "me too" when you are living with a chronic illness, and when you are at a conference centre where thousands and thousands of people say me too, it's magic.

I am so lucky to found a new community who is accepting, understanding and ready to advocate again.

For me, its a few days escape from worrying about my neighbours eyeing my sensor, or having to halt a hike because of juice box and feeling like a nuisance, it's a few days where there's more people who just know- no questions asked.

It's seeing a dream I had while working for JDRF actually be alive and a well oiled machine. I always wanted this sort of thing to be real, little did I know that it existed on this sort of scale.

So before I board a plane at 4:30 tomorrow morning, I wanted to take a minute here and try and explain the absolutely unexplainable.


Monday, June 13, 2016

On Grief

"In this world nothing can be said to be certain, except death and taxes." Benjamin Franklin 

Over the past 5 months I have had a lot of time to myself, in addition to a lot of time thinking about the big themes in life. I have never thought I would be someone who would have time to ever sit down and challenge how I thought about life, death, and certainly taxes (or other debts.) For me to come out and say the past 5 months were easy, and an enjoyable time off work would be an utter lie. It has been difficult in many ways. 


Grief in Job Loss

When you go through a job loss in a large lay off at the hands of an organization you care deeply for, it's painful. It's a painful loss in my life to feel disconnected from where I thought I was heading, and to feel automatically severed from relationships I was building in hopes to make even bigger changes in the world of chronic illness. I had very good days (my wedding fell right in the middle of this insanity- and that was the best day of my life this far) and I have had very dark days. There was never a rhyme or reason as to when the darkness would hit. Over the past few weeks the dark days are spaced out farther. Dealing with the grief of loss of place, the grief of feeling like a burden on my newly formed family, the curve ball in our future plans has made me realize how connected I am to my need to make change. Every day I sit down and think about what direction I should be taking, and almost every day I come up with a different answer. 

When I hear about all of these people that knew what they wanted to do since they were children, and are doing it or pursuing it....I am envious. I don't have just one thing that drives me in a choice for a career. I know that I want to keep writing, but I can do that without it driving my career. What I know I want out of a career is the ability to continuously learn and keep pushing myself, and the ability to advance so I don't feel stagnant. I think that leaves me pretty open in my life, I hope that the choices I make in the near future are right for me so I don't have to be where I am again. 


Grief in Family Death


Last week, my uncle passed away suddenly from a massive heart attack. He and I weren't extremely close, but I think when it comes to family that isn't necessary to feel the loss. My mother, her siblings, and especially my grandmother are hurting-and it is always so hard to see family in pain. In pain, comes emotions and ways to channel those emotions that you would never choose if your brain was in its normal place receiving its normal messages. 


I learned over the past weekend that my uncle was extremely special to many, many people. He trained and raced horses, he worked with the school board and he touched many lives. He was a friendly guy with a great sense of humour and he was fiercely loyal to his family and friends.


My grandmother remains to be one of the strongest women I know, in these times of grief-of which she has known many- she remains rock solid. Over the weekend, during a wake and a catholic funeral mass, I was shocked at her ability to remain solid for her other children. She has nine children, 8 who are still alive 2 of whom were unable to be at the funeral, but they were all there with her some how. She is clearly a good mother who had tough choices to make as she raised her kids, tended to her home and cared for her (now passed) husband. My mother and her siblings are some of the toughest people I know. Every day I feel lucky to be a part of a family with such a powerful and respected matriarch model. I respect that part of family; we are all very diverse and while we all have very different belief systems, we all tend to get to the same end place-and I respect that.


Grief in The World


In the wake of yet another senseless tragedy in the United States, I feel a deep sense of grief. It may be that I am coming off a weekend spent grieving with my family, or months spent grieving my sense of self. But this mass shooting on Orlando, where a gunman opened fire in a nightclub...aimed at gay people....it just...doesn't make sense to me. I don't understand how one person can have so much hate towards a whole group of people who have absolutely nothing to do with him. This person is the lowest of the low. The scum of the earth are those that hate with no reason, and try and validate that hate with religion or some other higher level of knowledge. Hate is hate and it has no place. None.


Dealing With Grief


Grief is one of those things that we all deal with very differently. I don't think two people grieve the same, and that is fine and welcome. I have learned over the past few months that I use humour to feel light in my darkest of times. I make jokes, I try and find the simple humour in everyday sadness. This doesn't work well or sit well with everyone (I apologize to anyone who heard me refer to the basin of holy water in the catholic church as an undersized hot tub and didn't see the humour in that that I did...), it's how I deal. I don't talk about feeling sad or depressed, not because I am trying to bury my feelings or hide them, but because I deal with these things in my own way and talking about them doesn't help me, it hinders me. I, of course, shed tears at times. Sometimes they are the only thing that works when processing feelings of sadness and grief. Even if it's 25 years after being diagnosed with diabetes, or 2 days after a funeral of a loved one. 

I think Washington Irving spoke so eloquently about crying and grief:


""There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love."


I like to keep this quote in mind any time I feel the need to cry a bit. I like to share this with anyone who may be grieving over anything.


We are often told that the reasons why we are grieving are not as substantial as others. In our world of living with diabetes we are often told "at least it's not cancer", at least it wasn't more people murdered, at least the death was quick and painless. I find these things odd, like we are searching for deeper meaning to what has happened, instead of accepting that bad things have happened, and as humans we need to accept that this is a part of life. We create our circles of friends, we engage our circle of family always with the knowledge that at some point that circle with break and reform with a jagged edge where someone else or something else once was. That is life, it doesn't mean it is easy, in fact the breaking and re-mending of that circle is the hardest part of living. Accepting that, and knowing that every single time that circle breaks is extremely hard no matter what the circumstances, makes the grief process easier. 


You don't need an excuse to grieve loss, no matter what. And there is no right or wrong way to grieve.

In grief there is always power gained, because surpassing immediate grief takes strength that you grow and muster during the process.


Tuesday, May 17, 2016

The Other Half of Diabetes

This is my day 2 post for Diabetes Blog Week. You can see the list of other posts on this topic here.

Today's prompt is:

"We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)"

I think this prompt comes at a pretty interesting time, as I said yesterday I am currently in a funk about diabetes. I am taking care of my physical self the best I can, my blood sugars are pretty under control and I am exercising and eating lots of plants. I feel ever so slightly disconnected with it all. I am doing the motions but feeling like I am floating a bit. Normally I read and read and read about diabetes, research, and everything about the disease, but I find myself distancing from it lately. Maybe because my former job laying me off has left a bad taste in my mouth.

I think the best way to deal with being burnt out on care is two fold: remember the motions and do them, and lean on friends and family. If you are reading this blog, and are aware of DBlogWeek, then you know that you have an entire community standing behind you to support and help you through whatever there is.

Yesterday, when I confessed why I haven't been around much, I had so many people reach out to me privately to just chat it reminded me why I am here. If you need help getting through a rough patch of the annoyingly mundane task of staying alive, just reach out.

Leave a message on a blog of someone you admire, they want to hear you.
Send a tweet.
Join a Facebook discussion.

Be proactive for yourself, being able to speak about your experiences is important in dealing with chronic illness.

It's important to recognize that you probably will burn out eventually, and that's ok too. You don't always have to be "on". I am learning that quickly, when I was able to help others through some dark and stormy times in the past, those same people are able to help me now.

This thing is an ebb and flow. We give when we can, and we take when we need to. It's how our community survives and thrives and grows.

Be a part of it. You will be better for it.

Monday, May 16, 2016

DBlog Week: Day 1: Why Are We Here

This week is DBlog week, a week where bloggers use prompts to write about their experiences for whatever reason.

You can check out the prompts here.

Today's topic: Message Monday: "lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?"


It's odd that this was today's topic. As I was opening my laptop to check out what the prompt was, I thought "I don't know why I am doing this." Honestly.

I don't think I have a particularly interesting voice to add to our community, and lately I haven't felt the drive to write like I used to. This is a very, very saturated blog market, as you will find out while browsing blog week posts. There are a lot of really fantastic voices in it, and I respect and read them all the time. 

This is not to say that I don't think that all of our experiences are interesting and needed, I think they are. I just think that taking the time to blog, for me, has been a trying effort. I have no less than 25 posts started and not finished in my queue because I get part way through and I ask myself "why am I doing this?"

Maybe it's because I am in a professional funk, after being part of a national lay-off in February, and not having a job offer yet, I have spent a lot of time wondering what I want to do with my career. The market is so saturated in my area, it is kind of similar to the diabetes blogosphere. 

That's why I haven't been posting as much. I guess I feel like it's a lot of energy, time and emotion poured in to something that just....is there. 

So I don't have an answer for this first prompt. I am still wondering the same thing.

I do, however, believe I will use my voice as a powerful advocacy tool. I have been speaking to members of government and other advocacy specialists on a few various topics, trying to get things moving.

But it's hard.

I am finding it hard to be motivated to do anything other than find gainful, permanent employment right now. I need a job that will give me some security because the employment insurance program I have been granted has been absolutely piddly and can hardly pay for my extremely expensive burden of student loans debt. It's a deep, dark cloud over my life right now and it's hard to be a light for others when that is my reality.

Wednesday, April 20, 2016

Corn Salad Recipe

Before I even start here, I know that corn isn't low carb, and it probably won't be celebrated as the next best vegetable for people with diabetes. However it has nutrients, it's healthier than many side dishes and gives you much needed colour to your plate.

Mmmm.


Recipe as follows:

-1 bag frozen corn (I use peaches and cream)
-1 tsp (or more or less for your taste) of cayenne powder
-1/4 cup of fresh chopped mint (2 tbs of dry) (you can also use cilantro, but cilantro is terrible)
-1 tsp of thyme
-2 cloves garlic, chopped fine
-1 Medium onion chopped
-Salt to taste
-Grapeseed oil (or another high heat oil)
-Lime wedges for garlic


Directions:
-In a hot pan with a table spoon of grape seed oil, stir fry the chopped onion until translucent (~2 mins)
-Add garlic and stir for 1 min
-If you're using dry herbs, add them after garlic and stir until aromatic
-Add corn, cayenne and salt and stir for 5-7 minutes. You will know it is ready when the corn turns a deep yellow and the onions take on a bit of colour.
-Serve with a wedge of lime for garnish

I make this for potlucks and BBQs often. It's one of our favourite side-dishes. I usually make it super spicy with extra cayenne. 

Here's the approximate nutrition info per serving (~150 grams)

Calories: 127
Carbs: 26g
Fiber: 5g
Fat: 1g
Protein: 3g

Let me know if you try it out!