One of the things that annoys all of us PWD is when the general populations perpetuates diabetes myths. It has been something that we have been fighting since the day we (or our loved one) was diagnosed with diabetes.
We deal with people telling us to eat cinnamon, run 10 miles a day, stop eating bread, etc and then your diabetes will go away. We deal with people saying that diabetes happens because someone is overweight or ate too much sugar (both of which are untrue for both Type 1 and Type 2 diabetes).
Sometimes it seems like a constant battle.
Celiac has been in my world for only a couple of months. I spend most of my time trying to figure out what I'm doing, if I'm eating the right thing, and what the best gluten-free food are. It didn't really occur to me that I would step into advocacy for celiac by accident. But it happened.
Last weekend I was at Whole Foods (a store, prior to my celiac diagnosis, I had only been in a couple of times). It was crowded and busy, as most places are on Saturday afternoon. There I was, standing in the gluten-free mixes/flours isle trying to decide which of them I was going to try.
An older lady came up to an employee standing nearby to ask where she could find waffle mix. The employee turned around and came near me and grabbed a box of waffle mix and handed it to the lady. She immediately and quite loudly stated, "I don't want this gluten-free stuff. This whole gluten-free thing has gotten out of hand."
I probably would have let it go. I can agree that so many people are going gluten-free for a variety of reason, not all of them medical. But the older lady didn't stop there. She kept on about how everyone has something and everyone wants to have something just to be different and it is ridiculous.
I couldn't stop myself. I said, "Until it happens to you."
She then proceeded to tell me that everyone thinks their kid has autism when they just want an excuse to say something is wrong and that it is the same way for people who don't eat gluten. Then she said, "Unless you have a medical diagnosis, you aren't sick."
I kept my mouth shut. What I really wanted to do was punch her, but I'm a non-confrontational person and I didn't relish the though of getting arrested in the middle of Whole Foods on a Saturday. It would have really thrown a wrench in my plans.
At first, I was mad. Then I was thinking of all the things I should have said to her, but didn't. Then I realized, this is just like the diabetes myths I've been trying to bust for years. Now it's a whole new disease, and new myths.
Strangely enough, I almost envy that hateful old lady from Whole Foods. She has obviously been blessed to never had a major illness strike anyone in her family. It is where her ignorance stems from. And in that case, ignorance is bliss. I truly hope she never has to have a loved one deal with an auto-immune disease.
Showing posts with label diabetes myths. Show all posts
Showing posts with label diabetes myths. Show all posts
Saturday, January 14, 2017
Thursday, February 20, 2014
No More Shame
Miss Manners,
There's too much shame and stigma involved with diabetes. Some of it is external. Some of it is internal. But it is all very real to a person living with diabetes. People place blame on those living with diabetes. It must be your fault that you have diabetes. It must be your fault that your blood sugar is too low. Or too high. It must be because YOU did something wrong.
Being a vital organ is hard work. I wasn't cut out to be a pancreas. But I am. Every single day. But because I'm human, and because there are about ten THOUSAND external and internal things that I have no control over, diabetes can't always be perfect. I can't always have perfect blood sugar levels and sometimes I have to do things like test my blood sugar. In public.
GASP!
Heaven help the people around me that might see me test my blood sugar or give myself a bolus with my insulin pump (or an injection, if my pump happens to fail). I do my best to be discrete when I'm in public, but I don't hide what I'm doing.
I am a person with diabetes. I can test my blood sugar from six to twelve times a day. I can't always get up and escape to a bathroom. Even if I could, public bathrooms are disgusting and gross. In fact, I rarely use public bathrooms, unless I don't have an option. So why on EARTH would I test my blood sugar in one?
I am pretty open about my diabetes. I wouldn't have this blog, and be a member of the Diabetes Online Community (which I'm sure you didn't even know about until your recent response to a reader with diabetes) if I wanted to hide my diabetes. But I still have some shame.
Sometimes I feel like people think that I chose to have diabetes. Trust me, I didn't. Sometimes I see people stare at my insulin pump infusion site when I wear it on my arm. I want them to ask what it is, and not just stare at me like I'm a freak. Sometimes I wonder if they see the small lump under my dress that is my insulin pump or the small bump on my leg through my pants where I wear my constant glucose monitor. I wonder if they think I'm a spy or a secret agent wearing electronic equipment...or if they just think I have strange tumor like things growing on my body.
Diabetes is hard. Not only on your physical body, but on your mental state as well. After 28 years of living with Type 1 diabetes, I should know. I should also be over my self-consciousness and shame. But it still creeps in from time to time. That's why I do my best every single day to take care of myself. To not have shame for something I had no control over. And to help bust the diabetes myths that are out there. I don't want those living with diabetes to feel like they should be ashamed of ANYTHING.
Miss Manners, when you tell a PWD (person with diabetes) that they should check their blood sugar in an airplane bathroom, you're telling them they have something to be ashamed of. And they DON'T. Discreet, yes. Hiding it completely, NO WAY.
I'm tired of people being ashamed of their diabetes. While it isn't something to be proud of (who wants to be proud of having a chronic illness??), it IS something to be proud of living with successfully. I'm a person with diabetes. I'm living successfully with diabetes. No more shame, Miss Manners. The problem isn't with your Gentle Reader. The problem is with you.
Take a little while. Read some blogs. Talk to someone living with diabetes about what it's LIKE to live with a disease that never goes away. Maybe you'll be able to give some better advice to your next Gentle Reader.
Sincerely,
Cara (T1 diabetic for 28 years)
There's too much shame and stigma involved with diabetes. Some of it is external. Some of it is internal. But it is all very real to a person living with diabetes. People place blame on those living with diabetes. It must be your fault that you have diabetes. It must be your fault that your blood sugar is too low. Or too high. It must be because YOU did something wrong.
Being a vital organ is hard work. I wasn't cut out to be a pancreas. But I am. Every single day. But because I'm human, and because there are about ten THOUSAND external and internal things that I have no control over, diabetes can't always be perfect. I can't always have perfect blood sugar levels and sometimes I have to do things like test my blood sugar. In public.
GASP!
Heaven help the people around me that might see me test my blood sugar or give myself a bolus with my insulin pump (or an injection, if my pump happens to fail). I do my best to be discrete when I'm in public, but I don't hide what I'm doing.
I am a person with diabetes. I can test my blood sugar from six to twelve times a day. I can't always get up and escape to a bathroom. Even if I could, public bathrooms are disgusting and gross. In fact, I rarely use public bathrooms, unless I don't have an option. So why on EARTH would I test my blood sugar in one?
I am pretty open about my diabetes. I wouldn't have this blog, and be a member of the Diabetes Online Community (which I'm sure you didn't even know about until your recent response to a reader with diabetes) if I wanted to hide my diabetes. But I still have some shame.
Sometimes I feel like people think that I chose to have diabetes. Trust me, I didn't. Sometimes I see people stare at my insulin pump infusion site when I wear it on my arm. I want them to ask what it is, and not just stare at me like I'm a freak. Sometimes I wonder if they see the small lump under my dress that is my insulin pump or the small bump on my leg through my pants where I wear my constant glucose monitor. I wonder if they think I'm a spy or a secret agent wearing electronic equipment...or if they just think I have strange tumor like things growing on my body.
Diabetes is hard. Not only on your physical body, but on your mental state as well. After 28 years of living with Type 1 diabetes, I should know. I should also be over my self-consciousness and shame. But it still creeps in from time to time. That's why I do my best every single day to take care of myself. To not have shame for something I had no control over. And to help bust the diabetes myths that are out there. I don't want those living with diabetes to feel like they should be ashamed of ANYTHING.
Miss Manners, when you tell a PWD (person with diabetes) that they should check their blood sugar in an airplane bathroom, you're telling them they have something to be ashamed of. And they DON'T. Discreet, yes. Hiding it completely, NO WAY.
I'm tired of people being ashamed of their diabetes. While it isn't something to be proud of (who wants to be proud of having a chronic illness??), it IS something to be proud of living with successfully. I'm a person with diabetes. I'm living successfully with diabetes. No more shame, Miss Manners. The problem isn't with your Gentle Reader. The problem is with you.
Take a little while. Read some blogs. Talk to someone living with diabetes about what it's LIKE to live with a disease that never goes away. Maybe you'll be able to give some better advice to your next Gentle Reader.
Sincerely,
Cara (T1 diabetic for 28 years)
Friday, April 19, 2013
Opinions and Name Changes
Even though I’ve been slightly detached from the diabetes
online community in the past several weeks, I’ve seen some talk about the
petition going around that seeks support to have the names of T1 & T2
diabetes changed. This grabbed my attention almost immediately. I started
searching around on the different posts that people were putting up, and even
received an email from the women behind the movement and I read it as well.
I did some research, though for the most part I’ve been
fairly quiet about it. Others in the D-OC have done a much better job writing
about this and stating their opinions, but I wanted to state my own. It’s
simple. And it’s nothing that hasn’t already been said. But I feel like I
should say it from ME. I want my words on this.
First off, I was diagnosed with diabetes in 1986. I was just
a few months shy of my fifth birthday. It was called “juvenile diabetes.” The
pediatric endocrinologist that I saw told my parents that my pancreas probably
hadn’t worked well from the time I was born, but I hadn’t been big enough for
diabetes to show up yet. He also had me on one injection of NPH insulin per
day. Barely 6 months later I had my tonsils taken out (due to chronic illness).
My hospital records at the time show my a1c was 12.6 and in those records it
stated “diabetes is finally stable enough to perform tonsillectomy.”
Just in reading the above, if you know much about T1
diabetes, you will see about a million things wrong with that. I was sick a LOT
as a child (a result of being a preemie). My guess is that one of my many bouts
with strep throat triggered the deadly attack on my beat cells, resulting in my
diabetes. We all know an a1c of 12.1 is far from stable and that, even in 1986,
one injection of NPH per day wouldn’t cut it.
But it’s what we had. It’s what we understood. Eventually I
went to two shots per day (of a mix of NPH and R). Still not great, but it was
what we had. I rarely went to a pediatric endo. I ended up in a coma when I was
8 because no one ever taught my mother that just because I was sick with a
stomach flu didn’t mean that I didn’t need insulin (in her mind I wasn’t eating…
I didn’t need insulin).
Life was different. I lived for a few years before I
remember being called “insulin dependent” and many, many more years before I was
dubbed “Type 1.” But it’s was what we knew. It was what we had. Until I joined
the D-OC, I’d never heard of an adult being diagnosed with T1 diabetes. I’d
never heard of a child being diagnosed with T2.
Knowledge was different. Education was different. And even
now, I feel like my own education about diabetes is constantly evolving. It was
only a few years ago, I am ashamed to say, that I even mentioned about a name
change. The conversation started somewhere online and I said, “Heck, yeah!” But
I was wrong. I’ll admit when I am.
I am not skinny. If I told a random person I had diabetes,
it would be very easy for them to look at me and say, “If you’d lose weight,
you’d be cured!” In fact, I even had a “health coach” tell me I could come off insulin
if I lost weight….and she had my paperwork in front of her with my T1 diagnosis
on it.
I have friends who are T2 who are not overweight. I have
friends who are overweight that are not T2. I have friends who had diabetes
when they were pregnant. I have friends who once took insulin for T2 and now
take nothing…not even a pill. But the fact is that we ALL have diabetes. We ALL
put up with media, medical, and public misinformation. We have ALL lost friends
to this disease (or know someone who has). We ALL need to take a stand. For
each other.
Of late, I have been very much on my soap box about the way
that T2 patients are treated. By medical professionals, the media….and even
some of us in the D-OC. I would love to have an off line advocacy in my area
that dealt with informing T2s and informing medical professionals about T2.
The truth is…I feel like this name change petition is an
attack against T2 patients. And I don’t like it. People with diabetes live with
a HUGE amount of guilt, no matter what type of diabetes they have or when they
were diagnosed. I think T2 patients often get even more of this guilt piled on
them by the media and even their medical team.
Would I love to have the media, the general public, etc know
that I have diabetes caused by an auto-immune attack on my beta cells when I
was a kid? Sure. But making them understand that isn’t about changing the name
of the disease. It’s about educating people about diabetes and the different
types there are. It’s about educating people that just because someone is
overweight, doesn’t mean they could “eat less/diet/exercise” and make said diabetes
“go away.” It’s about educating them that just because someone is thin or
athletic doesn’t mean that they have “the bad type” of diabetes.
Diabetes is an extremely complex disease with extremely complex
treatments and extremely complex emotional issues that come along with living
with a chronic illness “every day, every hour, every minute.” We do NOT need to
place something else that will ultimately cause more division, more confusion,
and more discord. We should be pulling together as a community and advocating
for more research, better technology, better treatment, and more education for
the general public.
I know I’ve only said what others have said. But that’s just
my opinion and I really felt the need to write about it….and that’s what a blog
is for, right?
Also, on a completely separate note: This is my 500th post. Wow.
Also, on a completely separate note: This is my 500th post. Wow.
Thursday, January 31, 2013
"Do No Harm" Does Harm
Tonight on NBC there is the series premiere of a new show
called “Do No Harm.” I’ve known this show was coming for quite some time. In
fact, I knew about it when they were filming the pilot, mostly due to the fact
that one of my favorite Broadway actors is in the show. Turns out SEVERAL
Broadway actors I like are in the show, and it was directed by a Broadway
director that I also like.
Because of that, I had been waiting on this show to air. Waiting
for news about it. Getting little snippets of what was going on. A week or so
ago, NBC made the premiere episode available online. I watched it last week. Of
course, I watched it on the chance to see some actors I know from the stage,
like Lin Manuel Miranda, Michael Esper, and the star of the show Steven Pasquale.
I won’t spoil the whole show for you. I won’t give away all
the details, but the basic premise of the show is that Dr. Jason Cole is a
brilliant neurosurgeon with a problem. He has Dissociative Identity Disorder…
also known as a split personality. His alter ego, Ian Price, is not a nice
person. He’s aggressive, a playboy, and an all-around NOT good guy. Ian shows
up at 8:25 every night and goes away at 8:25 every morning. So basically, for
12 hours a day, Dr. Jason Cole can’t be around anyone he knows or cares about,
as Ian will hurt them.
There is an outstanding cast of actors in the show. It has
an interesting plot line. It COULD be the kind of show I would like to watch.
BUT (there’s always a but) there was some terribly incorrect information regarding
diabetes throughout the entire show. And the saddest part of the entire thing
is that some of the information regarding diabetes will probably continue to be
a part of the show for as long as it lasts.
“Why?” you ask? Most medical shows will touch on diabetes
for an episode or two here and there, but it never lingers very long. In “Do No
Harm” Dr. Cole says he has diabetes. As he is a brilliant neurosurgeon, he has
to test his blood sugar levels before he performs surgery. The machine they use
is interesting. It’s not an actually BLOOD sugar machine. It’s some sort of
device that he places his finger in and it uses infrared light to test his
glucose levels.
Honestly, it looked like a pretty awesome machine, except
that it was HUGE (think a rolling blood pressure machine from a hospital). And
I’m pretty sure it doesn’t exist. I did some research on the internet after I saw
this. From everything I can find, this technology doesn’t exist yet. There areseveral companies working on the technology that would allow us to check ourglucose levels with infrared technology, but so far nothing has been approved,
and from what I can find, it doesn’t even really exist more than what
scientists seem to be TRYING to develop. Basically, nothing headed our way
anytime soon.
So, what I wanna know is how to get one… cause if it’s on
TV, it must exist, right? You see where I’m going with this? Um, I don’t want
people telling me I don’t have to poke my fingers all the time cause I can get
this cool machine that tests my glucose with infrared technology. I don’t want
to have to take the time to explain that it’s Hollywood making something else
up.
That was alarm bell number one in my head. But, you know, it’s
not THAT big of a deal….but then Dr. Jason Cole has a conversation with the
director of his hospital, Dr. Vanessa Young (a lovely and talented Phylicia
Rashad).
Dr. Young offers Dr. Cole tickets to a Phillies game because
it’s his birthday. He tries to turn them down and she says “Just because your
diabetes keeps you from working at night doesn’t mean it keeps you from going
to a game.” And there’s alarm bell number two in my head. What do you MEAN that
diabetes keeps you from working at night?!? I know several people who live with
diabetes (T1 & T2) who work the night shift. And why wouldn’t a DOCTOR (and
probably a pretty extensively trained doctor, if she’s running a major hospital
like in the show) call bullsh** on that? A doctor that knows anything would
know that isn’t true.
And that led into alarm bell number three….how does someone
who is unable to work for at least 12 hours a day able to make it through
medical school? I know people who have gone through med school. There are many,
many long shifts. Many times they end up sleeping at the hospital and definitely
working night shifts during their residency and/or fellowship. So how did Dr.
Cole make it through medical school to become this stellar neurosurgeon??
Obviously, he is using diabetes as a reason to be able to be
home and away from everyone when his alter ego takes over, but what diabetes?
It’s kind of a flimsy excuse, especially if you are in the medical profession.
And this makes it obvious that the character doesn’t actually HAVE diabetes.
The show continues on and there is an incident in which Dr.
Cole can’t remove himself far enough away from people to keep his alter ego
from taking over. Dr. Cole reschedules a brain surgery for nighttime. At first
I couldn’t figure out WHY. Alter ego Ian Price has no medical training. And Ian
pretends to be Dr. Cole… so this untrained person is going to operate on a
human? Turns out there is a reason that Dr. Cole did this. And this is where
alarm bells four, five, six, etcetera went off in my head.
Ian Price, pretending to be Dr. Jason Cole, enters the
surgery room and they demand that he checks his glucose levels (on that
awesome, non-existent machine) before he operates on the patient. When the
results come they are 315. Here is the basic of what happens in the operating
room at that point:
Ian Price asks what’s going on. A nurse says, “You’re
hypoglycemic (the closed captioning read “hyperglycemic”, but if you listen to
it several times like I did, it SAYS hypoglycemic). You’re going into diabetic
shock!” Another nurse/doctor says “Give him 20 units of regular insulin.”
I’m going to stop right there and point out the things wrong
with JUST that part. First off, a blood sugar level of 315 isn’t going to send
someone into diabetic shock. Possible ketones maybe. Thirst, headache, at
worst, blurry vision. But I’ve never known anyone to enter into diabetic shock
(I’m assuming they mean full diabetic ketoacidosis with unconsciousness) from a
315.
Secondly, 20 units of regular insulin for almost anyone with
diabetes could be lethal. It’s way, way, way too much insulin for a 315. I
assume there are cases of super insulin resistance that would call from
something like that, but in general, 20 units of regular insulin is crazy.
Also, regular insulin is kind of outdated. I know some people who use it still,
but in general, it is so slow working that insulin like Levimir, Humalog, and
Novolog are used. They work faster.
Onto the rest of the scene (which was only about 30 seconds
to a minute long). The doctors and nurses in the operating room restrain Mr.
Ian Price (who fights them the whole time) and the jab him with some epi pen
looking thing while he thrashes around. He immediately goes into convulsions. A
nurse says, “He’s tachycardiac-Adverse reaction from the insulin.” Some else
yells “Call anesthesia stat! And get me a stretcher.” Mr. Ian Price passes out.
Okay, all the things wrong with that part…. Oh my. Well,
first off, the epi-pen looking thing. I suppose it might have been an insulin
pen of some sort. Perhaps. But really it just look like they jabbed him with
this thing in the arm. Insulin doesn’t need to be administered like that at
all. And a true diabetic would have administered the insulin themselves.
Then there is the immediate onset of convulsions. Insulin
does NOT work that quickly. There is NO insulin out there that works that
quickly. It doesn’t exist. In fact, when you look at active insulin times, the
quickest I could find was Aphidra, which according to WebMD has an active
insulin time of 1 ½ to 2 hours. This means that while it might start working
right away, there’s nothing that would drop the blood glucose levels so quickly
as to put someone into immediate convulsions, even if their blood sugar was
completely normal and they were given 20 units of insulin. Also a note: Regular
insulin has an active insulin time of 5 to 8 hours. http://diabetes.webmd.com/guide/diabetes-types-insulin
Then there is the next part. About the tachycardia. I
actually did not know what that word meant. I had to look it up. The American
Heart Association says that tachycardia is a heart rate of more than 100 beats per minute in an adult. I didn’t know that insulin (or a low blood sugar) could cause a rapid
heart rate. But apparently it can. I googled that one too, just to be sure.
Again, I just can’t imagine blood sugar dropping so rapidly that it would cause
immediate convulsions and rapid heart rates. I suppose that this could be
considered an “adverse reaction to the insulin” but I just call it a low blood
sugar.
And what was that about calling anesthesia? Why? Were they going to knock out the man
already passed out on the floor? I mean really? What was the point of that? Why
did no one suggest glucagon (or the more medically potent D50, also known as dextrose).
This would have brought around a person having a low in just a few minutes.
At this point, I’m laughing hysterically at the computer
screen as I watch the show. I wanted to tell them how crazy they were being.
But it just got worse and worse.
Dr. Jason Cole wakes up the next day in a hospital room and
Dr. Marcado, a friend who is helping him try to keep Ian from coming out every
night, is in the room with him asking him what went happened. Dr. Cole states
that he moved up the surgery on purpose because he knew that Ian would fail the
glucose test.
When Dr. Marcado asks how he knew he’d fail he says “Come
on, Ruben, personality affects body chemistry. Aggression triggers adrenaline”
and Dr. Marcado follows up with “Which looks like high blood sugar.” Dr. Cole
finishes up with “He’d be given insulin, which he didn’t need.” And Dr. Marcado
chimes in, “It would knock him out.”
Okay, I’m not a medical professional. I could be wrong. But
again, I googled it. Everything I found in regards to adrenaline and high blood
glucose levels was directly related to people who already have diabetes. I KNOW
adrenaline causes my liver to kick out sugars, raising my blood sugar levels.
But someone without diabetes (which we know Dr. Jason Cole to be) should be
covered by their own, working pancreas, right?
And what was that about personality affecting body
chemistry? Huh? How would it affect his body chemistry? It’s just so completely
out there that I was appalled. By the end of the show I was laughing, but I was
also saddened.
![]() |
| taken from the Do No Harm facebook page |
I’ve been told that any medical show is supposed to have a
medical technical advisor. I googled. I checked IMDB. I googled again. I couldn’t
find anywhere that there was a medical technical advisor listed. It confused
me. Maybe because it was a pilot episode they didn’t have one? I wanted to know
who told them this information was correct.
The only thing I could find was the name of the writer of
the episode and the producers of the show. It was written by David Schulner,
directed by Michael Mayer (a Broadway person that I LOVE), and produced by Rachel
Kaplan, Michael Mayer, David Schulner, and Peter Traugott.
I really do want to like this show, but they can’t ditch the
diabetes storyline at this point. It’s too engrained in who Dr. Jason Cole/Ian
Price is as a character. But it’s also a lousy cover for his Dissasociative
Identity Disorder and perpetuates the myths about diabetes.
You can find “Do No Harm” on facebook, twitter, and about a
million other social networking sites. Do something. Watch the first episode.
Then SAY something. Blog about it. Post on facebook about it. Tweet them about
it. I tried to find twitter accounts on
the producers and writer but was unable to.
Personally, I just hope this blog post gets out there.
Because “Do No Harm” could actually cause a lot of harm by misleading and
perpetuating untruths about diabetes. I plan on asking them on twitter & facebook who their medical advisor was. I hope I get an answer. If they don't have one, they should hire me. At least for the diabetes related stuff. I'd tell them to scrap the entire storyline involving diabetes. But then they'd probably try to write about a medical cure.
Wednesday, November 9, 2011
Diabetes Awareness - Myth #2
Diabetes isn't Deadly
As usual, I'm behind on my blogging. I tend to take things going on in our community and think about them, read what others are saying and then think some more before I write. One of the biggest myths that I know of about diabetes is that diabetes isn't deadly. If you ask your average person on the street, they'd tell you that as long as you take your medicine and eat well you'll be fine (that's if they don't just tell you to lose weight and quit eating sugar).
The truth of living with Type 1 diabetes is that without insulin I will die. Anyone living with T1 will die if they do not take insulin. But did you know that even though you take insulin, you can still die as a direct result of diabetes? I'm not talking about long term complications that end up in eventual death. I'm talking about at any moment, at any time.
I wrote a little bit about it when there was a young girl who died in her sleep from undetected low blood sugars. It has become one of my most popular posts ever, but the truth of it is in the post. Basically, no matter how much we do right, sometimes it's not enough. The insulin we take to stay alive can also take our lives.
If it were as easy as a set amount, or a set insulin to carb rations I think none of us would worry. But so many other things factor in. Stress, exercise, lack of exercise, change in routine, illness, hormones, and even changes in weather/seasons can all have an effect on blood sugar. And most of the time these variables are unpredictable at best. Then add in "hidden" carbs, the effect of fat on digestion, the occasional "bad" batch of insulin....well, you might be starting to get the picture.
Diabetes is with me every minute of every hour of every day. It's with me always. And in that, I don't get the chance to say "time out" when things in my life are getting crazy. I live by myself. This is something that most 30 year old women would think nothing about. I can take care of myself....right?
But the truth is that with tight blood sugar control (i.e. as close to non-diabetes levels as possible), you deal with more low blood sugar levels.
So the fact remains that I could die in my sleep. It is possible. It's a scary thought. I don't fear being dead. My faith in Jesus tells me that being dead isn't the end. But the thought of dying does scare me. I don't want to leave before I've finished whatever I'm supposed to do in my life. I have goals to accomplish and things to do that make the thought of diabetes stopping that a terrifying thing.
This past week JDRF took out an ad in The New York Times calling the FDA to action in regards to approving something called a Low Glucose Suspend function on insulin pumps. An insulin pump is kind of like an IV. Even if my blood sugar is low, it continues to give insulin (which in turn, continues to lower the blood sugar levels). With a low glucose suspend, the insulin pump would automatically (without my help) turn itself off. This could save lives, but the FDA has yet to approve it, even though it is now widely available in Europe. Below is the ad:
1 in 20 people. There has been argument over how accurate that number is. But all I have to say is this: Piper could die in her sleep from a low blood sugar. She's a child. So could I. I'm an adult. Any person who takes insulin for their diabetes, regardless of age, race, gender, religion....any of us could die. The fact that there is a possibility of death (regardless of the statistics) is too much. I DO NOT WANT TO DIE IN MY SLEEP. Not from a disease that I work so hard to live successfully with. Not a disease that's been with me longer than I can remember.
The fact that there is a child in that ad draws attention. I understand why JDRF uses children. It's a great marketing tool. It's extremely effective in touching people's hearts. The thought that a child could die NEEDLESSLY will bring action about. However when I look at that JDRF ad, I see this:
And the faces of all of friends who are daily living with diabetes. The myth is that diabetes isn't deadly. The truth is that DIABETES KILLS.
The truth of living with Type 1 diabetes is that without insulin I will die. Anyone living with T1 will die if they do not take insulin. But did you know that even though you take insulin, you can still die as a direct result of diabetes? I'm not talking about long term complications that end up in eventual death. I'm talking about at any moment, at any time.
I wrote a little bit about it when there was a young girl who died in her sleep from undetected low blood sugars. It has become one of my most popular posts ever, but the truth of it is in the post. Basically, no matter how much we do right, sometimes it's not enough. The insulin we take to stay alive can also take our lives.
If it were as easy as a set amount, or a set insulin to carb rations I think none of us would worry. But so many other things factor in. Stress, exercise, lack of exercise, change in routine, illness, hormones, and even changes in weather/seasons can all have an effect on blood sugar. And most of the time these variables are unpredictable at best. Then add in "hidden" carbs, the effect of fat on digestion, the occasional "bad" batch of insulin....well, you might be starting to get the picture.
Diabetes is with me every minute of every hour of every day. It's with me always. And in that, I don't get the chance to say "time out" when things in my life are getting crazy. I live by myself. This is something that most 30 year old women would think nothing about. I can take care of myself....right?
But the truth is that with tight blood sugar control (i.e. as close to non-diabetes levels as possible), you deal with more low blood sugar levels.
So the fact remains that I could die in my sleep. It is possible. It's a scary thought. I don't fear being dead. My faith in Jesus tells me that being dead isn't the end. But the thought of dying does scare me. I don't want to leave before I've finished whatever I'm supposed to do in my life. I have goals to accomplish and things to do that make the thought of diabetes stopping that a terrifying thing.
This past week JDRF took out an ad in The New York Times calling the FDA to action in regards to approving something called a Low Glucose Suspend function on insulin pumps. An insulin pump is kind of like an IV. Even if my blood sugar is low, it continues to give insulin (which in turn, continues to lower the blood sugar levels). With a low glucose suspend, the insulin pump would automatically (without my help) turn itself off. This could save lives, but the FDA has yet to approve it, even though it is now widely available in Europe. Below is the ad:
1 in 20 people. There has been argument over how accurate that number is. But all I have to say is this: Piper could die in her sleep from a low blood sugar. She's a child. So could I. I'm an adult. Any person who takes insulin for their diabetes, regardless of age, race, gender, religion....any of us could die. The fact that there is a possibility of death (regardless of the statistics) is too much. I DO NOT WANT TO DIE IN MY SLEEP. Not from a disease that I work so hard to live successfully with. Not a disease that's been with me longer than I can remember.
The fact that there is a child in that ad draws attention. I understand why JDRF uses children. It's a great marketing tool. It's extremely effective in touching people's hearts. The thought that a child could die NEEDLESSLY will bring action about. However when I look at that JDRF ad, I see this:
And the faces of all of friends who are daily living with diabetes. The myth is that diabetes isn't deadly. The truth is that DIABETES KILLS.
Wednesday, November 2, 2011
Diabetes Awareness - Myth #1
People with Diabetes Can't Eat Sugar
I have had diabetes since 1986. I was 4 years old. Things were so different at that time when it came to diabetes care. I believe that this time period (and the many years before it) were the reason that many people believe that people with diabetes can't have food or drink that contain refined sugar. At that time, the understanding of how foods effect blood sugar were very different than what they are now.
Here's where the myth busting comes in:
I CAN EAT SUGAR
Yup. You read that right. I have Type 1 diabetes. I take insulin to stay alive. And I CAN have sugar.
A healthy person eats all types of food. The foods that cause blood sugar to rise are foods that contain carbohydrates. There are other things that can cause blood sugar to rise, but I'm only addressing on myth at a time.
If you look on a food label, there are things broken down. Fat, Calories, Sodium, Carbohydrates. At a very basic level, foods that have carbohydrates are things like grains, fruits, and sugars. When a healthy person eats something with carbohydrates, their body produces insulin to turn the carbohydrates into energy for the body.
A person with diabetes either doesn't produce insulin, or the insulin is not used properly by the body. Because of this, people with diabetes have to take insulin (for those living with Type 1 or Type 2) or pills (for those living with Type 2) to help their body turn the carbohydrates into energy.
It is true that a person living with diabetes may chose to refrain from some types of carbohydrates in order to control their blood sugar levels easier, but overall, a person with diabetes can eat any type of carbohydrate as long as there is insulin (or other medication) to cover the body's need to turn the carb into energy.
A fact that many people that do not live with, or care for someone who lives with diabetes is that a regular sized snickers bar has 35 grams of carbs. There is right around that same amount of carbohydrates in two slices of regular loaf bread. Obviously, for anyone with or without diabetes, the bread is probably a healthier choice. But the fact remains, that I would give the same amount of insulin for either of these items.
I won't get into all the boring details, but some carbohydrates do digest and effect the blood sugar differently. And it's different for every person. I typically avoid pizza and cereal because I have a harder time covering these types of carbs with insulin. I have a friend who chooses to avoid pasta. I try to cut down on my rice intake.
Each person living with diabetes should eat in a healthy manner...as should the person who does not have diabetes. Sure, you shouldn't eat sweets all the time. No matter who you are. But don't look at a person living with diabetes and tell them that they shouldn't eat that cupcake. If treating yourself to a cupcake every once in a while is okay, let the person living with diabetes decide if it is a good time for them to treat themselves.
We'll make a deal with you: You don't tell us what to eat, and we won't tell you what to eat.
And now you know the truth: People living with diabetes CAN eat sweets!
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