Tag Archives: diabetes advocacy

Why Do We Demand People Understand Diabetes?

Photo Credit: Ana Morales

Photo Credit: moreartplease.com

“Why are you eating that?”

“Why do you have to check your blood sugar in public?”

“Why are you so picky about your food?”

“How come your blood sugar is so often high or low?”

We hear these things sometimes, right?

Even though it can be tiring, over time I’ve learned to welcome any question on the above list and others like it. I appreciate the opportunity to answer these questions and the curiosity behind them. I will quickly admit that in some cases, people aren’t being curious but instead using a question as a way to provoke–in those cases I respond appropriately.

However, curious individuals asking me a genuine question do not cause me to be offended. How can I be offended by someone’s ignorance when I am just as ignorant on other subjects?

I think we should consider NOT demanding people learn what to ask us so that we can have open conversations and get real communication flowing.

Have you felt unsure about asking someone a question for fear of offending them? Isn’t it unfortunate? And doesn’t it lead to you to most likely stay ignorant? Has anyone ever asked you a bold, ignorant question, leading you to an opportunity to clear it up and feel truly heard?

When someone asks you a question, which below example would be the most productive response?

a) “I demand you inform yourself on the right questions to ask me.”

b) “When you ask me about this, please only do so if you genuinely want to know and intend on hearing my answer.”

The answer is B, right?

I’m a wife to my husband of 8 years. I kindly express the ways in which he can support me and share feedback about how something he does or says makes me feel. I don’t demand he do anything because I don’t want to insinuate that if he had the choice, he wouldn’t do it. If that were the case I wouldn’t have married him in the first place.

In other words, If we communicate in the same way we’d like others to communicate with us, I think we will all be better off.

So go ahead, ask me why I’m eating that. I may smile and say, “why are you eating that?” which may lead you to either feel what I’m feeling or you may say “because I love eating this” and then I’ll say “same here”.

The above example leads me to another point. I think we should encourage each other to actually say what we mean. Perhaps what you really want to know is, “why are you eating that cookie, I thought people with diabetes needed to stay away from sugar?” Now that is a question I can answer well for you because I understand exactly what you want to know and why!

“People with diabetes can eat sugar and for different reasons some eat more and some less than others. I am eating a cookie because I want to and am able to cover that cookie with fast-acting insulin. If you want to know why another person with diabetes is eating a cookie you’d have to ask them.”

I could also say, “I’m sorry, it is none of your business.” And you know what, that would be ok, too. I’m very much a proponent for your freedom and mine. You can ask a question and I don’t have to answer and vice versa.

But I am much more likely to answer with the former. I’m enthusiastic about helping others understand diabetes better. I think it helps society’s general understanding of diabetes. Just like I think encouraging questions instead of limiting them with rules and shaming helps society’s understanding of diabetes.

When people say something like, “At least you don’t have cancer” and it gets you upset, resist the temptation to be passive aggressive and just tell them the truth: “That is upsetting because it feels like you are minimizing my situation.” A compassionate and worthy individual would want to hear you out on this and would probably apologize for inadvertently belittling your illness by comparing it to another.

I totally understand the inclination to educate people on what is important to us. However, do you realize how hypocritical it is to tell people they must “get diabetes right”?  Does this mean we should spend all our free time educating ourselves on what is important to everybody else? I have had diabetes for over two decades, write and talk about it for a living, and even I can’t get diabetes right all of the time!

What if we all just drop demands and talk kindly and openly with each other as we go along?

You don’t have to agree with me, of course, but those are my reasons for suggesting we not demand people understand diabetes before they, um…understand diabetes.

Sunday Diabetes Blog Week 2015 Check this Blogger Out

Click for the Continuing Connections – Sunday 5/17 Link List.
The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends.

 

 

I discovered a blogger that has a sense of humor, a heavy technical slant, has had type 1 since age 4 so I think about 44 years now.  He writes in German and English and shared really interesting posts this week.  I think I’ll be reading more.  Check out Thomas here at: http://thomas-diabetes-blog.com/blog/

Thursday 2015 Diabetes Blog Week Magic Changes

Click for the Changes – Thursday 5/14 Link List.
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

 

Since blurting out “cure!” would make this post too short, I will say that I want management tools, devices, and medications to become accessible to everyone who needs them.  I’m tired of using insulin past it’s date, using expired strips for the past two years, and not affording a CGM.  More than that, I would love for anyone to have all they need to attempt to manage their diabetes well.  Imagine, having all those things still doesn’t guarantee managing diabetes well-that’s how tricky it is. But at least being able to not stress about acquiring tools (including basic ones like um, insulin) would be nice.  So we need better tools and we need better access to those tools.  (I wrote this post a few days ago, since then a similarly themed article popped up that I’d like to refer you to since it’s more articulate than my post: https://myglu.org/articles/a-view-from-the-other-side-of-the-tracks).

I could go the route of saying we mostly need people’s perceptions to change since that may lead us to the mass funding we need for a cure.  So there is that notable thing.

To be honest, I could go on all day about changes I’d like to see.  So I’ll stop there.  :)

I’m Baaaack!

After this post, I’m going to jump back in like a year didn’t just go by without me blogging.  But first, I want to say Hi! and I missed you.  Those who emailed out of concern-thank you.  That meant so much.  The blog looks very different because a hacker broke my old blog theme.  But there is less pink so that may be a relief.

Lately, I’ve been spending my days reading a ton, unschooling (yes, unschooling) my twin 5 year olds, travelling the country talking to people with diabetes through the A1C Champions program, doing freelance writing, and oh yes, managing my diabetes.  In the past year I also have spent much of that time without a computer so I missed a lot.  I’m chest deep in uncharted territory and also struggling with the same ole same ole that is diabetes.  In the time we haven’t seen each other, I had a dog for about 7 months.  A rough collie named Bruce.  I don’t want to go into why I don’t have him anymore (nothing dramatic) but will say that knowing him and experiencing so much of each day alongside him has been life changing.  Who knew?  If you’re a dog person, you’re probably saying “Duh!” “Dogs are amazing!”  I get it now.  I do.  And although he is many miles away, he is still with me each day.

So.  Let’s talk diabetes.  I could use some help getting caught up with big causes that need support.  Shoot me a comment with initiatives you think are worthwhile for people with diabetes?

As for me, my diabetes is pretty good.  I’ve slacked off in some ways and tightened my discipline in other ways.  I hope those of you who used to come here are doing well, I truly do.  I am still a health coach and do it mostly for people with diabetes.  I do this over the phone or even over email for those who want a discount (email is a savings).  Interested in some kind of health/nutrition/exercise/diabetes related guidance and coaching?  Email me at Sysymorales@gmail.com.  My coaching style is to meet you directly where you are in your journey.  It’s about helping you, specifically, to go where you want to go.  It’s not about trying to push you towards a goal that doesn’t feel true to where you are now.  Baby steps.  Knowledge is power.  Compassion and self-love for ourselves and others.  That’s my jam.

Posting schedule will average one per week.  See you, soon.

Sysy

Traveling with Diabetes

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I’ve travelled several times each month this year and it’s given me some lessons:

I’ve learned that I get motion sickness on planes and cannot travel without taking Dramamine.  I tried to forego it once and that one time we just so happened to have a bumpy ride.  It is not fun to worry about dropping blood sugars while throwing up and being jostled about in the tiny plane lavatory. 

Taking all the airport stairs and skipping the moving sidewalks (is that what they’re called?) is a good way to combat all the sitting involved in travel.

Staff on planes are always happy.  I still haven’t met one that isn’t, which is freaky, but if I’m feeling low, so far they are quick to grab juice if I need it and want to conserve my glucose tablet stash for later.

The food situation when in an airport is mighty tricky.  Temptation abounds and yet the easiest way I’ve found to travel is to keep it real low carb because if things get hectic, and lately in airports, they always seem to, low carb often saves me amidst skipped blood sugar checks.

Given how close one’s next seat neighbor is in coach, I find it remarkable how injecting insulin in front of that neighbor has never been an awkward experience.  In fact, it’s a great conversation starter and I’ve literally written down each starting line for your own amusement:

“Wow, those needles are tiny, I’m so glad for you.”

“So you have diabetes, huh?”

“OMG, do you need sugar?”

“Ok, what do I do if you pass out on this flight?”

“Wow, in and out, just like that, eh?  It takes me longer to sneeze.”

“How long have you had it?”

And my personal favorite:  “Does it hurt? I’m sorry, of course it hurts, what was I thinking? That was such a stupid thing to say, I’m so sorry, I didn’t mean to say that, I just figured that it hurts but maybe it doesn’t or maybe you’re used to it, is that it, are you used to it? Wait…I take that back, I get migraines and I seriously doubt I’ll ever get used to them.  Just forget I said that, ok?”  5 seconds later:  “So, where ya headed?”

Smile

How the DOC Helped Me Check Again

Part of a diabetes art showing by Ana Morales

 

There have been times when I’ve slacked when it comes to how often I check my blood sugars.  Sometimes I get down to 4 times a day and I know that isn’t personally enough-not for my aggressive control of blood sugars.  But, I rarely keep that up for long because being connected to the DOC, or Diabetes Online Community, means constant reminders of how important checking blood sugars is along with encouragement and people to really relate to.

In January I ran out of test strips because I had given half of my last shipment to my brother, who was just recently diagnosed with type 1 and then I ran out of money.  I had to put money into paying rent and bills and focused on just getting by while not feeling pity for myself but instead, feeling happy and grateful that I normally am able to afford all that I need for my diabetes.

I made a comment on Facebook about having run out of strips and was shocked by how many fellow people with diabetes suddenly told me they would send me some extras they had.  Several people knew I didn’t have a certain kind of meter and ended up sending me strips and the meter that corresponded.

It has been so heartwarming.  Strips are a precious commodity for us people with diabetes-and they cost a lot  So to me these acts of kindness are HUGE!

I was getting by decently by eating low carb, skipping meals, and trying to constantly guess my blood sugars.  Thanks to certain members of the DOC, I was able to stop the stressful madness and check again.

I can’t thank you enough,.  Thank you, thank you, thank you.

I accepted the help on the condition that if these people ever needed anything they’d let me know.  I hope they know I mean that ;)

Just another reason why being part of the DOC is awesome.

The Polls in VA Weren’t So Bad

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I went to vote yesterday afternoon after my husband got home.  I was expecting to be in and out like last time around but was pleasantly surprised to see loads of people in front of me leaving me almost outside the entrance to the building.

I knew my blood sugar was around 70-80 and felt confident going in that I’d be fine to go vote and then get something to eat.  But of course when I saw all those people, I gulped thinking, “Can I make it?”  I searched my purse but didn’t have anything thanks to two little munchkins who think glucose tablets are candy.

I thought, “Well, I’m not low yet, I should be fine.”  After an hour and 15 minutes I realized I was too low to think straight and I did the irresponsible thing and argued with myself about whether it was worse to pass out in front of so many people and miss my chance to vote or walk out of the line I stood in for a long time and appear to be giving up on my voting to everyone around me.  I don’t normally care what people think but this election has me emotional and my low had me irrational so those were my thoughts.

Finally, I turned to the two ladies behind me whom I was chit-chatting with and casually mentioned, as if it were amusing, that my blood sugar was low and I wasn’t sure I’d make it to the voting booth still standing.  They looked at me and one said, “Oh, you have hypoglycemia, too?  I get low, too”.  I clarified, “I have type 1 diabetes but yes I get low and eventually go unconscious if I don’t get sugar in me.  The women looked at me with concern and one went over to the volunteer desk where people signed in and asked for some sugar and explained it was for a diabetic who needed it.

The lady at the desk looked at her huge container of juice and said, “That’s mine, we don’t have anything else.”  Another lady said, “Sorry, I don’t have anything.”  And they both went back to business.  I started feeling panicky, reluctant to make a scene and start asking people if they had Halloween candy in their purses.  I live in Virginia in a town that is divided 50/50 in this election and you could seriously feel the tension in the air.  It made me feel the opposite of warm and fuzzy and I didn’t want to ask anything of anyone.

But, I was starting to get really foggy.  All I could think was, “Sysy, you idiot, get sugar!  It’s important!” But what is it about when we’re low?  Suddenly important things become the things we hesitate about the most.

The line moved along and we ended up near the entrance to the church’s kitchen.  The three women behind me gently pushed me in there and helped me get some juice and a man ran over to me and gave me the chocolate chip cookie that he had just retrieved from his car.  I wasn’t even aware others knew about my situation.

Eyes were on me and people encouraged me to “drink and eat!” so that they wouldn’t see me hit the floor.  My blood sugar must have been really low at this point because everything was numb, especially my tongue.

After a few minutes I felt better and nervously laughed and said, “And they say people don’t help each other out anymore…”

Random comments from all around like “That’s right”, “We don’t have to agree to be united”, “People are people”, and “We’re just glad you’re ok” echoed around me and suddenly, the room didn’t feel like such a divided place.

A woman across the line said to me, “We don’t need to agree on what President to have to support each other.”

And I hate to admit it because of my cheese intolerance but that felt real warm and fuzzy.

National Diabetes Awareness Month 2012

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It’s National Diabetes Awareness Month.  And what are we going to do about it?  There are so many ways to pitch in and I’ll be trying to pass the word as I hear about it.  But first, I want to appeal to those out there possibly asking themselves the question, “What’s the use?”

First off, I understand.  I mean, as a society we’re also trying to cure a bunch of other devastating diseases so sometimes it feels overwhelming trying to fight for one’s own plight.  Even though I’m doing ok with my diabetes as of 11am this morning (it’s always subject to change, I’m aware of that), others have had loved ones die, depression, financial difficulties and other huge challenges to handle alongside their diabetes.  So I want to advocate not just for myself as a person with diabetes, but for all those who are struggling immensely and paying high interests for it.  Not to mention all their loved ones.

Secondly, diabetes researchers have given us very compelling statements about how close to a cure we are.  They say the main factor between us and our cure is in our wallets.  Now if you’re like me, your wallet is more decorative these days than anything else but just knowing that possibility is a strong push for me to think “Ok, how can I advocate for diabetes and get more money to the researchers?”

The clock is ticking for all of us and will soon be ticking for many more who will be diagnosed this month.

So again, It’s National Diabetes Awareness Month and what are we going to do about it?  Just pick one way in which you personally can help.  No matter how small, your help is a big deal.

In fact, start by doing the Big Blue Test.  And stay tuned for more info.

XOXO

Sysy

Travel and Diabetes Ramblings with a Stranger

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One of my favorite places in the world is the airport.  I knew early on the significance of such a place having moved from another continent to this one as a young child.  The airport is like a revolving door of possibilities and opportunities literally flying in and out all day in the most organized fashion we can manage.  Each trip to and from an airport includes new sights and faces.  Each trip holds a little mystery and anticipation.  In an airport we’re forced to be patient.  We’re forced to have faith in others, namely the pilot of the plane.  We’re forced to sit still and be one with our thoughts and observations.

It’s so healthy.

It’s true that frequent travelers tend to dash about, mindlessly hooked to their device of choice, but I think even they must feel much of the same.

The other day as I checked my blood sugar on the plane I noticed how uncomfortable it made the older man next to me.  So I started talking.  I explained what I was doing and why.  I shared the results, “141, I’ll take it!”  The man looked out the window and let out a deep breathe.  He said, “So many people have diabetes.  It’s going to ruin our country.”

“If we let it”, I said.

“Well, I’m glad you seem to be taking care of yourself but what about everyone else?  Why can’t people just eat better and exercise?”

I went into clarifying some myths and misconceptions about diabetes while the man listened intently.  Then I said, “I wish we could bring everyone out on a trip somewhere and educate them all about diabetes and health here in the airport.”

The man laughed out loud and furrowed his brow at me.  “Oh?  Why at an airport?”

“I don’t know, just seems like a good place for all sorts of educational metaphors to really click.”

“Oh? Tell me more.” he said.

“Ok…well, just as with travelling, living life with diabetes is full of possibilities and opportunities.  In fact, every morning we get to face a new day with blood sugars that haven’t happened yet and strive to make the best of them.  Each day we have the power to choose what we are going to do with our health, you know, what we’ll eat, whether we’ll exercise or not, and how we’ll approach challenges.  We can get organized with our lifestyle habits and diabetes management routine for better, more consistent results.  We can choose to take inspiration and support from everything around us, from the people we encounter to the day’s weather.  We can learn to accept the risks of living with diabetes and not let them slow us down just as we choose to get on a plane so we can go somewhere even if we’re scared to do so.  We can learn to handle anticipation so we can move past unsightly blood sugar results.  We can learn how being patient doesn’t mean we have to wait forever and that eventually, we’ll get where we’re going.  We can learn how to trust others and ourselves to do the best we all can.  I just feel like the airport is a peaceful and safe place for learning, I don’t know.”

The man stared blankly at me for a moment and then scratched his head.  Then he laughed again and said, “And on the plane, we go over how to bring up diabetes with strangers by testing blood sugar in front of them.  Then they can ask questions, be educated, and hopefully feel compassion and understanding and spread that around.”

“See?  It would totally work!”

In between chuckles the man said, “It did, today.”

On the Radio

I’ll be on DSMA (Diabetes Social Media Advocacy) Live! tonight as a guest.  I’m so excited to talk to some DOC friends and actually hear their voices :)  Here are the details:

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Here’s the link:  http://dsmalive.com/2012/10/03/dsma-live-with-sysy-morales-on-1042012/

 

XOXO,

Sysy

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