Over the weekend I got a message on facebook from a friend of mine. One that isn't linked to my "diabetes world." We've known each other for a few years now, and met through mutual friends. He's an awesomely fun person to hang out with, and a person I don't get to see in person near often enough.
This message, however, wasn't a happy message. He sent me a message because his young niece had just been diagnosed with T1 diabetes. She was very sick and in ICU. And he was worried.
As almost all of us know, until T1 enters your life, you have very little need to know anything about it. All my friend knew was that I had diabetes and he had questions.
I did what I could to answer questions. The most heartbreaking and basic questions.
"Will she have to take shots?" "Will she ALWAYS have to take shots?" "What does this mean?" "How will she deal with this in school?"
I answered them the best I could and as his family lives sort of close to me, I told him to pass along my contact information to them in case they needed to talk or had questions. I told him to let me know if HE had questions.
This disease isn't fun. I "meet" people all the time who have fallen into this wild world of diabetes. But it's very, very rare that someone I already know (or know of) gets diagnosed. And for some reason this weekend, it hit me hard.
This disease doesn't pick favorites. It is as likely to happen to someone I know as it is to someone I don't. When it hits this close to home, it hurts my heart a little more.
Do I think this little girl will be okay? Sure. Diabetes isn't a death sentence like it used to be. Do I think she'll live a normal life? Yeah...as normal as our d life gets. It's our normal. But my heart cracks just a little more knowing that another family is going to have to learn to count carbs, bolus, give injections, test at midnight, learn what an A1c is, go for yearly eye exams, learn about basal testing, know what terms like "CGMS" and "D-OC" and "endo" mean.
I'm not sure that this family will ever contact me. If they don't, I hope they do find the D-OC. It's something I wish had been around when I was diagnosed, and I'm very glad is around now. If there's a silver lining to a T1 diagnosis, it has to be the D-OC.
Monday, October 7, 2013
Wednesday, August 7, 2013
Sort of Wordless Wednesday
Tuesday, July 30, 2013
Cereal: The Devil's Food
“Hi. My name is Cara and I’m a cereal addict.”
I feel like I should be in some sort of a recovery program.
Ever since I started monitoring my blood sugar super closely and got on an
insulin pump, it became apparent that cereal was a TERRIBLE thing for me.
Non-sugar cereals make my blood sugar crazy. The less sugar and more whole
grains, the less crazy. But still crazy.
Sugar cereals make me so crazy that it’s scary. My blood
sugars will rise quickly, sometimes as much at 150 points in half an hour, and
stay up for HOURS, no matter how much insulin I take.
Because of the major issues I have with controlling my blood
sugars when I eat cereal, I tend to stay away from it. I will indulge
occasionally, but I just don’t do it because of all the horribleness that comes
along with it. It’s just not worth it. Most of the time.
Sometimes I’ll get a box of rice crispies or cheerios and
eat them. I LOVE them. I have to limit myself, but I do it. Recently I bought a
box of rice crispies. When they were gone, I bought another box. When those
were gone, I bought some corn flakes. (Are you seeing a pattern here yet?)
And then, on Friday, it happened: I found the small boxes
($1) of Cap N’ Crunch cereal on sale at the store. I refuse to buy a big box,
but a small box… okay. I bought five boxes.
Saturday morning I had a bowl (translate: two large bowls)
and bloused (I did a S.W.A.G. bolus; don’t know what that is? Click here where you can download a PDF of awesome d terms.), and
went about my day. I knew I was going to spike. But I had plans to clean my
house and figured it would help. But within a couple of hours I felt like crap. My CGMS said I was above 400 (it doesn’t give specific readings above 400, just
an “above 400”). I checked and got this:
After having a mini-melt down, and suddenly understanding
why I felt like throwing up (naseuea comes with high blood sugars sometimes), I
gave an injection correction (I feel like that sounds lie something from School
House Rocks!) and waited. Over the day I waited and bloused and waited and bloused.
And tested and tested and tested. At one point I was somewhere between small
and moderate ketones, but it didn’t last long (thankfully).
And it was nearly 12 hours later before I came down. And
crashed at somewhere around 50. The blood sugar roller coaster is no fun, but
in my earlier mentioned melt-down, I also did this:
Yes, you see that right. That’s a garbage bag. With every
box of cereal in my house in it. In full disclosure, I still have the bag, but
only cause I’ve not been to take off my trash yet. Oh, and pay no attention to
my bare feet in the picture. :)
Honestly, I have a feeling I went from being sort of on the “no
cereal” bandwagon, to falling off completely. And in order to get back on, I’m
giving up cereal, cold-turkey. My problem is that I LOVE cereal. I can’t stop
with one bowl. And I want to eat it ALL the time.
So much like a person addicted, I’m quitting. Cold-turkey. I
won’t lie, I kind of want to go get that cereal bag. But I’m not going to do
it. Until I can break myself of this horrible cereal eating habit, and learn to
eat small amounts only occasionally, I’m done with the evil thing.
I think that a lot of times, we people with diabetes like to
indulge. And it’s OKAY. It’s not that I can’t have cereal. It’s that I don’t
particularly want to deal with the fall-out that comes with it. And I
understand that I don’t have enough self-control to make myself stop with one
SMALL bowl of cereal. But sometimes, even though we know better, we do it
anyway. Perhaps it’s diabetes burn-out, in a way. Perhaps it’s just a “normalcy”
thing that we want. I don’t know.
But for now, I’m on the “no cereal” band wagon again. My
name is Cara and I’m a cereal addict. It’s been four days since my last bowl.
*I did NOT write this to make light of those suffering from
actual addiction issues. As a person who knows and loves several different
people who are recovering (or still) addicts, I encourage anyone dealing with
these issues to seek help.*
Saturday, July 27, 2013
Strip Safely
Test strip accuracy is important to me because as a person with diabetes, I test my blood sugar. As a type 1 diabetic, I test my blood sugar sometimes as many as 12-15 times a day. True, with my constant glucose monitor (itself with accuracy issues) I sometimes test less. But no decision I make during the day (or night) is made without regards to what my blood sugar is.
The recommended range for blood sugar for a person with diabetes is 80-120. Some people say 70-130. Either way, these are ranges we should be shooting for our blood sugars to be a majority of the time. Anytime you deal with insulin (and food/stress/illness/other medications/the weather/the house that venus is currently in) blood sugar levels of a T1 diabetic is going to be outside of those ranges at times. But most of us strive to keep as tight of control as possible for our health.
Blood sugar levels that are out of control can cause major problems. In the immediate it can cause death, and in the long term it can cause complications which lead to death. And most of us don’t have a death wish. We want to live a healthy and as long as possible.
I’ve had T1 diabetes since February 5, 1986. It was a few months before my 5th birthday. I was practically a baby. And I was struck with this disease because my body decided to attack the insulin producing cells in my pancreas. Because of that my parents had to give me insulin injections, monitor what I ate, and test my blood sugar many times a day.
As time progressed I grew up. I learned to drive. I moved away to college. I’ve gotten a job. I’ve purchased a house. I’ve traveled the country with friends (and even sometimes alone). These are all things that a person without diabetes could do and no one would think twice about it. People living with diabetes do these things regularly and while some people may think nothing about it, our friends and family know the truth. Living alone, traveling, driving a vehicle, getting married, having children, and many other activities that are “normal” for most, take way more energy thought and planning for those of us living with diabetes.
Where is all of this going? Nearly every decision I make involves a number. My blood sugar number. Insulin keeps me alive. But it has the ability to kill me as well. Too much, or too little, insulin can lead to serious sickness and even death. This means I have to know how much insulin to take. How much insulin I take is determined by a lot of scientific math….and my blood sugar number.
Let’s just say my blood sugar is 120. This is good…right? It could be. But it could also depend on if I have “insulin on board” (this is insulin still working actively in my system), if I’ve just eaten, if I just completed exercise, if I’m getting ready to do exercise…among other things.
That’s a lot of variables, isn’t it? Think that’s bad enough? Try this:
Back to the beginning. My blood sugar reading says I’m 120. I’m getting ready to go on a road trip. It’s going to be several hours of driving for me. I am going to eat, right now. Forty-five grams of carbs. This means I’m going to give (hypothetically) 6.4 units of insulin for the food. And according to my goal blood sugar of 100, it also means an extra 0.5 units for the 20 points my blood sugar is over 100. So… 6.9 units of insulin, food, and driving.
Hypothetically this would work perfectly. But what if my meter reading was wrong. What if my blood sugar was actually 80, instead of 120? With the food and the insulin I took, a low blood sugar might not happen right away, but when my insulin peaks and my food is gone, that extra 0.5 units of insulin I took for that 20 points I was over 100….could drop me as much at 30-50 points. Which means an 80 could eventually be a 30 or a 20.
If I wasn’t passed out with a blood sugar of 20 or 30, I could be. If I didn’t catch the low blood sugar, it could be disastrous. To me, to other drivers, to people in the vehicle with me.
And 80 instead of a 120? That’s a 40 point variance. It could be enough to kill someone. Yet current FDA guidelines have a 20% ± variance. That means my 100 could be 120 or 80. And even worse than that? The FDA enforces these guidelines before the strips can hit the market…but they do NO enforcement after they are being manufactured. Which means even though a company may be able to meet the guidelines the FDA requires (even though they aren’t really strict enough) before they hit the market, they don’t have to meet them after they being manufacturing. There’s no monitoring to ensure that they are sticking to the guidelines at all.
This is a serious problem. I believe that there are lives that are hanging in the balance. I believe there are people who could very well die from this. If a medication was hitting the market and causing a huge risk of death to the people taking it, the FDA would step in and put a stop to it. Lawyers would have infomercials on at midnight telling you to call them if you took it so that they could help you sue the company.
Why isn’t anything like this happening with diabetes testing strips? What is it that keeps the FDA from monitoring the post production requirements of meter strips? What is it that keeps the FDA from making the guidelines even tighter for strip accuracy? Why isn’t anything being done?
I’m not sure what the reasoning is. It seems quite ludicrous to me. But it’s happening. And we need to do something about it. If we stand up and say something. If we show examples of the danger and the immediate risk. If we raise our voices, perhaps someone will listen.
My fellow D-OC members are raising their voices. They’re writing letters on their blogs and to their elected officials and to the FDA. They’re putting things out there. And now it’s my turn. This is my first letter, to anyone who might stumble across it. I’m setting myself a personal goal to send emails to all of my elected officials and to the FDA with my concerns for test strip safety.
I don’t want to go to sleep one night, thinking my blood sugar is fine, and not wake up the next morning. I don’t want to do that to my friends or my family. I don’t want to break their hearts in that way. I don’t want the hearts of other friends, family, and loved ones to break if they lose someone to diabetes if there’s any way it could have been avoided. I’m standing up and raising my voice for myself and for others living with diabetes. We DESERVE accuracy. There are enough variances in diabetes without worrying if our test strips are giving us accurate results as well.
For more information on Strip Safely, an inititive to improve strip safety and accuracy, go to their website. They also help tell you how YOU can make your voice heard. This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/.
The recommended range for blood sugar for a person with diabetes is 80-120. Some people say 70-130. Either way, these are ranges we should be shooting for our blood sugars to be a majority of the time. Anytime you deal with insulin (and food/stress/illness/other medications/the weather/the house that venus is currently in) blood sugar levels of a T1 diabetic is going to be outside of those ranges at times. But most of us strive to keep as tight of control as possible for our health.
Blood sugar levels that are out of control can cause major problems. In the immediate it can cause death, and in the long term it can cause complications which lead to death. And most of us don’t have a death wish. We want to live a healthy and as long as possible.
I’ve had T1 diabetes since February 5, 1986. It was a few months before my 5th birthday. I was practically a baby. And I was struck with this disease because my body decided to attack the insulin producing cells in my pancreas. Because of that my parents had to give me insulin injections, monitor what I ate, and test my blood sugar many times a day.
As time progressed I grew up. I learned to drive. I moved away to college. I’ve gotten a job. I’ve purchased a house. I’ve traveled the country with friends (and even sometimes alone). These are all things that a person without diabetes could do and no one would think twice about it. People living with diabetes do these things regularly and while some people may think nothing about it, our friends and family know the truth. Living alone, traveling, driving a vehicle, getting married, having children, and many other activities that are “normal” for most, take way more energy thought and planning for those of us living with diabetes.
Where is all of this going? Nearly every decision I make involves a number. My blood sugar number. Insulin keeps me alive. But it has the ability to kill me as well. Too much, or too little, insulin can lead to serious sickness and even death. This means I have to know how much insulin to take. How much insulin I take is determined by a lot of scientific math….and my blood sugar number.
Let’s just say my blood sugar is 120. This is good…right? It could be. But it could also depend on if I have “insulin on board” (this is insulin still working actively in my system), if I’ve just eaten, if I just completed exercise, if I’m getting ready to do exercise…among other things.
That’s a lot of variables, isn’t it? Think that’s bad enough? Try this:
Back to the beginning. My blood sugar reading says I’m 120. I’m getting ready to go on a road trip. It’s going to be several hours of driving for me. I am going to eat, right now. Forty-five grams of carbs. This means I’m going to give (hypothetically) 6.4 units of insulin for the food. And according to my goal blood sugar of 100, it also means an extra 0.5 units for the 20 points my blood sugar is over 100. So… 6.9 units of insulin, food, and driving.
Hypothetically this would work perfectly. But what if my meter reading was wrong. What if my blood sugar was actually 80, instead of 120? With the food and the insulin I took, a low blood sugar might not happen right away, but when my insulin peaks and my food is gone, that extra 0.5 units of insulin I took for that 20 points I was over 100….could drop me as much at 30-50 points. Which means an 80 could eventually be a 30 or a 20.
If I wasn’t passed out with a blood sugar of 20 or 30, I could be. If I didn’t catch the low blood sugar, it could be disastrous. To me, to other drivers, to people in the vehicle with me.
And 80 instead of a 120? That’s a 40 point variance. It could be enough to kill someone. Yet current FDA guidelines have a 20% ± variance. That means my 100 could be 120 or 80. And even worse than that? The FDA enforces these guidelines before the strips can hit the market…but they do NO enforcement after they are being manufactured. Which means even though a company may be able to meet the guidelines the FDA requires (even though they aren’t really strict enough) before they hit the market, they don’t have to meet them after they being manufacturing. There’s no monitoring to ensure that they are sticking to the guidelines at all.
This is a serious problem. I believe that there are lives that are hanging in the balance. I believe there are people who could very well die from this. If a medication was hitting the market and causing a huge risk of death to the people taking it, the FDA would step in and put a stop to it. Lawyers would have infomercials on at midnight telling you to call them if you took it so that they could help you sue the company.
Why isn’t anything like this happening with diabetes testing strips? What is it that keeps the FDA from monitoring the post production requirements of meter strips? What is it that keeps the FDA from making the guidelines even tighter for strip accuracy? Why isn’t anything being done?
I’m not sure what the reasoning is. It seems quite ludicrous to me. But it’s happening. And we need to do something about it. If we stand up and say something. If we show examples of the danger and the immediate risk. If we raise our voices, perhaps someone will listen.
My fellow D-OC members are raising their voices. They’re writing letters on their blogs and to their elected officials and to the FDA. They’re putting things out there. And now it’s my turn. This is my first letter, to anyone who might stumble across it. I’m setting myself a personal goal to send emails to all of my elected officials and to the FDA with my concerns for test strip safety.
I don’t want to go to sleep one night, thinking my blood sugar is fine, and not wake up the next morning. I don’t want to do that to my friends or my family. I don’t want to break their hearts in that way. I don’t want the hearts of other friends, family, and loved ones to break if they lose someone to diabetes if there’s any way it could have been avoided. I’m standing up and raising my voice for myself and for others living with diabetes. We DESERVE accuracy. There are enough variances in diabetes without worrying if our test strips are giving us accurate results as well.
For more information on Strip Safely, an inititive to improve strip safety and accuracy, go to their website. They also help tell you how YOU can make your voice heard. This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/.
Wednesday, June 26, 2013
Technology is Scary: A Skeptic Changes Her Mind
I was diagnosed with diabetes in 1986, a few months before
my fifth birthday. I have very, very few memories of my life before diabetes.
It’s just always BEEN. Diabetes has been a part of me so much, that I’m not
entirely sure who’d I’d be without it. I’m throwing a wild guess out there that
I’d have more money, less stress and get more sleep, among other things. But,
it’s nothing that I can’t deal with.
When I was first diagnosed with diabetes, I was on ONE
injection per day of the (now) antiquated NPH insulin. My doctors thought that
a 12.3 a1c was “in control” enough to take my tonsils out 8 months after I was
diagnosed. Life was different. Diabetes care was different.
Sometime after that (I’m not sure on how long, and my mother
is a little foggy on the details) I went to two injections per day of NPH and
Regular insulin. I stayed on that regimen, along with a strict eating schedule and
fights with my mother when I was (as kids often are) NOT hungry and didn’t want
to eat what was on my plate.
When I was in high school was the first time that I really
heard of an insulin pump. They were just really starting to get “popular.” I
didn’t know much about them. Other than that I did NOT want a needle in me all
the time (I’m not sure if that was the case at the time, or if that’s just what
I thought because I was uninformed) and I didn’t like the ideas of being
attached to something all the time.
For years I resisted an insulin pump. During those years I
also dealt with losing insurance, getting it back, losing it again, and getting
it back again, so my diabetes care was spotty and I didn’t see and
endocrinologist regularly. But I did meet a lady that I went to college with
who also had diabetes. We had many classes together because we had the same
major and ended up graduating within a semester of each other. She was a “non-traditional”
student, meaning that she was older, married, had kids and did not live
anywhere near campus.
But despite those differences we became friends. I got along
with her better than I did many of my peers because I was also working my way
through school (though it was only me I had to worry about) and had a semi more
grown up view of life than many of the people my age. I say semi because I was
still very much a college student. LOL.
One thing that this lady had was an insulin pump. I’d never
really seen one before. She told me how much she loved her insulin pump. She
showed me how hers worked. She was the first person that I ever knew that made
me think “I might actually like to have an insulin pump.” That was the first
time I didn’t think an insulin pump was scary.
During this time, insurance coverage for me was sketchy, so
it would be several more years before I decided to take the plunge and join the
world of the insulin pumpers. But I did it, not because I heard about this cool
new technology. I did it because I saw someone LIVING with this cool new
technology.
Over the past year or so, people have been talking about the
bionic pancreas thing. I say “thing” because I don’t totally understand how it
works, but I get the basics. When I first heard about it, I thought “That’s a
cool idea, but I don’t trust it. I don’t want a machine making all my decisions
for me.” But being a part of the Diabetes Online Community has put me in the
position to know and to “know” people who are at the front lines of this new
technology. There are people who are part of clinical trials. And what I’m
hearing back makes me think, “I might actually like this.”
Of course, there are a ton of things that have to happen to
make this machine something that I can get. And afford. More testing, more
trials, more trials, more testing. And then the FDA. And we all know how long
it can be for the FDA to get anything done. By the time they do, there may be
some other top notch technology waiting in the wings. I don’t know.
But after reading more and more about people that I “know”
and that I know, who have been a part of these trials, I have to thank them.
Thanks for being that person that opens my mind to new technology. New
technology that I’ll hopefully be able to get at some point. Technology that
might have as big of an impact on my life as switching from multiple daily
injections to an insulin pump.
If I can’t have a cure, steps forward in technology are
nice. Huge steps forward in technology are life changing. And thanks for those who are sharing your experience so people like me (the skepctics) can have a more positive outlook on what's coming (we hope).
Monday, June 3, 2013
Sometimes It's Who You Know
Every so often I go get fast food for breakfast. I know, I
know. It’s not healthy. It’s not good for me. It’s not always good on my blood sugars.
BUT, I do it. And I’m guessing that you probably do as well. I live in the same
town I grew up in. I left for a while and ended up back here for a job and
haven’t been able to escape since (those of you that know me, know what I mean
by that!).
There are some good things to living in a small town. One of
them is having everyone know you. This is also a bad thing at times. But the
occasion that I’m writing about today is a GOOD thing. I was headed through
drive-thru at a local restaurant. I happened to have worked at the
summer after I graduated high school. Up until a few weeks ago, it was the only
place in town that had Diet Dr. Pepper. I LOVE Diet Dr. Pepper. More
imporatanly, I love anything diet on tap (?) that’s not Diet Coke. Please forgive me you Coke lovers. But I love finding
Diet Dr. Pepper. I order, every time, very clearly “A medium Diet Dr.
Pepper, please.”
On this particular morning, I pulled around to the drive
thru window and I knew the lady who waited on me. She’s the manager of this
particular restaurant. She’s also the person who hired me when I worked there.
And most importantly, she used to baby-sit me when I was little. Not too long
after I was diagnosed with diabetes. She was in high school, I was in very
early elementary school and she lived right down the road from my house. She
would take the bus home and then walk down the street to my house and watch me
until my mom or dad got home. Or she would
come during the summer and stay with
me when my parents both worked.
It wasn’t an all the time thing, but it was enough that I remember
her very well from that time and I’ve always had a place in my heart for her,
especially after she hired me when I was young and dumb. J The great thing about
having her around that particular morning was that she started to hand me my
drink out the window (she hadn’t taken my order) and before she even let go of
it she said, “this is supposed to be diet, right?” “Yeah,” I said.
She looked over her shoulder and said to the other woman
working, “This is supposed to be diet. Is it?” Of course, it wasn’t. And then
the best thing ever happened. She said, “She’s got diabetes. This would mess
her up for the rest of the day.” And then she got me a new, DIET drink.
Now the truth is, I would have checked the drink before I
pulled away from the window. I would
have caught the mistake. But I didn’t HAVE
to. She did it for me. And cared enough to make sure it was right. So even
though I may complain about my small town sometimes (okay, a LOT of times), it
isn’t all bad. There are times it comes in down right handy when people know
everything about you.
Even though I’m sure she’ll never read this, I thought I’d
share this totally wonderful experience with you. Because I hope that there’s
someone out there looking out for you as well.
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.
Saturday, April 13, 2013
Six Years...and a Day.
I missed it again. I seem to miss it every year. Yesterday my blog turned six years old. I have a hard time wrapping my head around that. Six years is a long time to keep something up. I'll admit, my blog and I have had our ups and downs. In fact, the past month or so, we've barely communicated. But I always know that my blog is there when I need it. Something to pour out my frustrations and my triumphs. Something to share a fun story with.
And in return, it gets to you. I've accomplished so much and met so many people since I started blogging. I've done things I never would have done, if it weren't for that day that I sat down and created the blog that essentially changed my life.
Diabetes isn't the best part of my life. But it also isn't the worst. And diabetes brought me to blogging, which brought me to some of the best friends I have. All of which I wouldn't know otherwise.
I love that I've made so many friends, been so many places, shared so many stories, and had so many experiences because I started blogging.
And be assured, just because I've not been writing much doesn't mean I'm abandoning my blog. Just taking some time to focus on other things in my life.
Tonight I think I'll have some ice cream to celebrate six years and one day of blogging.
Happy blogaversary to me!
And in return, it gets to you. I've accomplished so much and met so many people since I started blogging. I've done things I never would have done, if it weren't for that day that I sat down and created the blog that essentially changed my life.
Diabetes isn't the best part of my life. But it also isn't the worst. And diabetes brought me to blogging, which brought me to some of the best friends I have. All of which I wouldn't know otherwise.
I love that I've made so many friends, been so many places, shared so many stories, and had so many experiences because I started blogging.
And be assured, just because I've not been writing much doesn't mean I'm abandoning my blog. Just taking some time to focus on other things in my life.
Tonight I think I'll have some ice cream to celebrate six years and one day of blogging.
Happy blogaversary to me!
Tuesday, March 5, 2013
Announcements
It's all over the internet today. All over twitter and facebook. Probably all over media outlets (I wouldn't know as I rarely watch television or pay attention to much news). The announcement that was hinted at yesterday, and release today from the Diabetes Research Institute.
I won't lie. I had a hard time yesterday, after reading what was being hinted at. That four letter word that many of us don't even like to whisper. Because so many of us were told "5 to 10 years." and for many of us, it's been decades more than this.
The first thing I did this morning when my alarm clock went off was pick up my smart phone and opened facebook. I knew the "announcement" would be there. I knew that it would already be spreading like wildfire. And it was there. And I watched it. And the ENTIRE time I watched it, I felt robbed. I felt disappointment (and relief, but I'll talk about that feeling later, in another post).
Ninety percent of what was in that video announcement from the Diabetes Research Institute was information I'd heard before. The ten percent that wasn't something I'd read or heard before was simply an expounding on information that I already KNEW was being worked toward.
And nothing in it was actual proof that there had been any major breakthrough. Just information that they are working toward something that they feel is a good step forward. And then they asked for money.
It went from emotional robbery to a whole different kind of robbery.
I understand that the Diabetes Research Institute needs funding. I get that. I'm proud to say that I support several different fund raising programs that DRI gets money from and I've even donated money directly to DRI in the past. I am GLAD to help raise money to find a cure. And to advance technology and treatment in the mean time.
A fundraising announcement to help fund a different (or in this case, more advanced) line of research is NOT a major announcement. It's not a breakthrough. There's no need for an embargo until a specific date or time.There just isn't.
I want to have hope that a cure will happen. But after 27 years of living with diabetes, I really don't know that it will happen in my life. I hope it does. But I am not sure that it will. And I've accepted my reality. It's all I've ever known.
And while I'm terribly proud that they are continuing to research and making positive steps forward, I just felt like this morning's "announcement" might has well have been them telling me that mice have been cured. It's something I already knew.
Monday, February 11, 2013
Meet Penelope
A few weeks ago I custom ordered a pump skin for my pump. I did this with my last pump as well. My love of theatre seems to be pretty well known throughout the D-OC, but in case you didn't know I have another blog where I focus almost completely on theatre and other related things.
This pump skin is basically the American Idiot (musical!!) poster. I wanted to bring my love of theatre (and my current favorite show) to my diabetes life. I feel they mix more often than not, and I figured if I'm gonna wear a device twenty-four hours a day to keep me alive, I might as well make it look like something I love.
When she got her skin, she gave me her name. It's kind of silly, but on the first national tour of American Idiot, there was a piece of the scenery that the cast named Penelope. I don't know why they picked that name. I don't know where it came from. But Penelope was an awesome set piece AND she made things fun... and occasionally cause some physical pain. Sound like an insulin pump? It did to me.
So....meet Penelope, my insulin pump.
Friday, February 8, 2013
Scar Tissue Issue
I love that the title of this post rhymes. It kind of makes me laugh. And this little problem is one that I NEED to laugh at. Otherwise it makes me want to bawl my eyes out.
Let me start at the beginning… Several months ago I started having infusion sets give me “NO DELIVERY” alarms quite a bit. Always within the first 12 hours of a new infusion site; mostly within the first few hours of a new infusion site. “NO DELIEVERY” began to haunt me in my dreams.
I’ve been pumping for nearly 7 years and up until a few months ago, I could count on one hand the number of times I got a “NO DELIVERY” alarm. I was pulling out sites left and right. About 90% of the time, the cannula didn’t look kinked, or bent. Basically, nothing looked like it was wrong. It’s frustrating because not only to I have to start all over; it’s wasting a perfectly good infusion set. I hate it. I may have insurance, but it’s still money out of my pocket and I HATE wasting money. When a sensor goes back, I can fake it for a day or so and let it have time to acclimate. You don’t have that luxury with an infusion set. Insulin = life.
In the past month it went from having “NO DELIVERY” alarms more than I’d like to having 3 or 4 in a row before I could get a site that worked. I was BEYOND frustrated. I called MiniMed to ask their advice and to let them know that I thought it was scar tissue. I had been given a box of 6 mm cannula Mio infusion sites and they seemed to not give me any trouble at all.
The MiniMed people were great, as always. They replaced my sets and agreed that it was a very good possibility that the 9 mm cannula Quick Sets were hitting scar tissue and getting blocked or bent because of the scar tissue. They replaced 4 of my sets with 6 mm Quick Sets to see if those would work and told me that they’d be glad to replace the ones I have if the 6 mm ones worked.
I got then in the mail last week and AGAIN, I went through 2 of the 6 mm Quick Sets before I finally gave up and put a Mio in my lower back. It’s been my stomach that has been causing me the problems. The other sites I use (arms, lower back) haven’t been giving me trouble. I’ve just come to the conclusion that A) for whatever reason, the Mios work better on me right now and B) that my stomach may be too riddled with scar tissue to have infusions sites anymore.
So, here are my questions: Does anyone know what the difference is in the Mio and the Quick Sets? If the cannulas are the same length, why does it seem like only the Quick Sets give me trouble? And do you have suggestions on other sites for me to put in infusion sets? Something I can reach myself, since I have no one to help me with them.
My worst fear being forced to take a “pump vacation” due to something like scar tissue. I don’t want to have to do it. In fact, right now I refuse to do it. I just don’t know exactly what to do. Part of me thought that a different infusion set might be better. If not the Mio, then something else. Part of me wants to FORCE the sites I have to work (though I know that’s not going to happen). And a part of me wants to deny that anything is wrong in the first place.
Why doesn’t diabetes play fair?
Let me start at the beginning… Several months ago I started having infusion sets give me “NO DELIVERY” alarms quite a bit. Always within the first 12 hours of a new infusion site; mostly within the first few hours of a new infusion site. “NO DELIEVERY” began to haunt me in my dreams.
I’ve been pumping for nearly 7 years and up until a few months ago, I could count on one hand the number of times I got a “NO DELIVERY” alarm. I was pulling out sites left and right. About 90% of the time, the cannula didn’t look kinked, or bent. Basically, nothing looked like it was wrong. It’s frustrating because not only to I have to start all over; it’s wasting a perfectly good infusion set. I hate it. I may have insurance, but it’s still money out of my pocket and I HATE wasting money. When a sensor goes back, I can fake it for a day or so and let it have time to acclimate. You don’t have that luxury with an infusion set. Insulin = life.
In the past month it went from having “NO DELIVERY” alarms more than I’d like to having 3 or 4 in a row before I could get a site that worked. I was BEYOND frustrated. I called MiniMed to ask their advice and to let them know that I thought it was scar tissue. I had been given a box of 6 mm cannula Mio infusion sites and they seemed to not give me any trouble at all.
The MiniMed people were great, as always. They replaced my sets and agreed that it was a very good possibility that the 9 mm cannula Quick Sets were hitting scar tissue and getting blocked or bent because of the scar tissue. They replaced 4 of my sets with 6 mm Quick Sets to see if those would work and told me that they’d be glad to replace the ones I have if the 6 mm ones worked.
I got then in the mail last week and AGAIN, I went through 2 of the 6 mm Quick Sets before I finally gave up and put a Mio in my lower back. It’s been my stomach that has been causing me the problems. The other sites I use (arms, lower back) haven’t been giving me trouble. I’ve just come to the conclusion that A) for whatever reason, the Mios work better on me right now and B) that my stomach may be too riddled with scar tissue to have infusions sites anymore.
So, here are my questions: Does anyone know what the difference is in the Mio and the Quick Sets? If the cannulas are the same length, why does it seem like only the Quick Sets give me trouble? And do you have suggestions on other sites for me to put in infusion sets? Something I can reach myself, since I have no one to help me with them.
My worst fear being forced to take a “pump vacation” due to something like scar tissue. I don’t want to have to do it. In fact, right now I refuse to do it. I just don’t know exactly what to do. Part of me thought that a different infusion set might be better. If not the Mio, then something else. Part of me wants to FORCE the sites I have to work (though I know that’s not going to happen). And a part of me wants to deny that anything is wrong in the first place.
Why doesn’t diabetes play fair?
Tuesday, February 5, 2013
Twenty-Seven
Twenty-seven. Twenty-seven. Twenty-seven. I’ve been mulling this word (these words?) over for a while now. I’ve used them for a while. But today is the official day. Twenty-seven years ago today I was rushed to the hospital in a nearby town and admitted to the hospital, where I would stay for nearly a week, so that my parents could learn how to take care of their diabetic child and so I could learn to not need two nurses to hold me down while they injected me with life-saving insulin.
It was 1986. Home testing was relatively new. Synthetic insulin was relatively new. We didn’t know how to count carbs, only servings. Blood sugar testing took 90 seconds. I was the only kid in my school (and I’m pretty sure my town) that had Type 1 diabetes. I was only four years old.
I remember so little from life before diabetes entered. I do remember eating ice cream (vanilla fudge swirl) with my dad after dinner. I’d sit in his lap while he sat in his chair and we watched Hee-Haw or some other television show.
I do remember some major things from my diagnosis. Being held down so they could give me a shot. Crying for more orange juice, cause that’s the only thing sweet they’d let me have. The nurse with MAJOR bright eye shadow and buttons all over her nurses jacket. The things a child would remember.
Because I remember so little of life before diabetes came, I have no idea exactly how it changed my life. Sure, there’s the obvious stuff, like insulin, doctor’s visits, the need for insurance, my unparalleled ability to guess carbs correctly… But I don’t know really what it did to ME. My personality, my life choices, who I am as a person.
So I just want to take a minute to be thankful for the things that I think and the things that I KNOW diabetes has provided me with. I believe diabetes has provided me with a better awareness of my health. Thank goodness for that! I believe that diabetes provided me with maturity beyond my years, even as a child, because of so many responsibilities that diabetes brings into your life. In a way, I think that could have kept me out of some of the trouble I may have gotten into otherwise.
And diabetes brought me you. The people I found online who shared my disease, and turned into my friends off-line with whom I’ve shared both joys and sorrows, laughter and tears, fun and friendship, hobbies and common interests. I never would have found you otherwise. So there is a bright side to all of this. Really, today is a day to be thankful. Thankful for my health. Thankful I’m free of major complications. Thankful for my friends. Thankful for technology. Thankful that I’m alive.
So, here’s to 27. While I hope there’s a cure, in the event that there isn’t one coming soon, here’s to a healthy future.
It was 1986. Home testing was relatively new. Synthetic insulin was relatively new. We didn’t know how to count carbs, only servings. Blood sugar testing took 90 seconds. I was the only kid in my school (and I’m pretty sure my town) that had Type 1 diabetes. I was only four years old.
I remember so little from life before diabetes entered. I do remember eating ice cream (vanilla fudge swirl) with my dad after dinner. I’d sit in his lap while he sat in his chair and we watched Hee-Haw or some other television show.
I do remember some major things from my diagnosis. Being held down so they could give me a shot. Crying for more orange juice, cause that’s the only thing sweet they’d let me have. The nurse with MAJOR bright eye shadow and buttons all over her nurses jacket. The things a child would remember.
Because I remember so little of life before diabetes came, I have no idea exactly how it changed my life. Sure, there’s the obvious stuff, like insulin, doctor’s visits, the need for insurance, my unparalleled ability to guess carbs correctly… But I don’t know really what it did to ME. My personality, my life choices, who I am as a person.
So I just want to take a minute to be thankful for the things that I think and the things that I KNOW diabetes has provided me with. I believe diabetes has provided me with a better awareness of my health. Thank goodness for that! I believe that diabetes provided me with maturity beyond my years, even as a child, because of so many responsibilities that diabetes brings into your life. In a way, I think that could have kept me out of some of the trouble I may have gotten into otherwise.
And diabetes brought me you. The people I found online who shared my disease, and turned into my friends off-line with whom I’ve shared both joys and sorrows, laughter and tears, fun and friendship, hobbies and common interests. I never would have found you otherwise. So there is a bright side to all of this. Really, today is a day to be thankful. Thankful for my health. Thankful I’m free of major complications. Thankful for my friends. Thankful for technology. Thankful that I’m alive.
So, here’s to 27. While I hope there’s a cure, in the event that there isn’t one coming soon, here’s to a healthy future.
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.
Friday, January 25, 2013
"Non-Preferred"
So several months ago MiniMed made the announcement that they had teamed with Bayer to produce their new Link meter. Prior to that, they were teamed with Life Scan/One Touch. I’ve only been insulin pumping for six years, but during that time I’ve always had a link meter. Prior to the Life Scan/One Touch partnership, there was a BD link meter.
I like the convenience of a Link meter for my pump. It may not save me much time, but it does save me some time. It remotely sends my blood sugars to my insulin pump, saving me from having to punch the number in myself. Another great thing is that when I download my pump data, the blood sugars are downloaded as well, meaning I don’t need to worry about downloading a meter as well.
This week, MiniMed sent me my Bayer Contour Next Link. I’ve been reluctant about it just because I LIKE my One Touch. In fact, I used a One Touch for years before I starting pumping and was really glad when MiniMed switched from BD to One Touch. The thought of changing meters again made me kind of twitchy.
But, as with any new meter, curiosity got to me. I opened it up and decided I’d at least try it. I linked it to my pump (you can have more than one meter linked to your pump, which I didn’t know). And I used it. And I liked it. A lot. It surprised me how much. I like a lot of different meters, but having this one made me want to keep using it. I thought about switching after my next refill of test strips, so I stopped by my pharmacy and had them run my insurance to see if I could get the strips. Turns out Bayer strips are “non-preferred” and that makes them not covered. Accu-Chek and One Touch are (which I already knew).
Honestly, I don’t mind staying with One Touch, but what about people who didn’t have that option. They are just getting their insulin pumps and are automatically given the Bayer meter. They would have to give up that convenience option because of stupid insurance.
There is supposedly a program that Bayer has that offers a discount on strips if you have insurance (not Medicaid or Medicare). You only pay $15 per month for strips. I thought about doing this as well. I could use the new meter and it would actually be cheaper than my current co-pays because they are more (way more) than the $15 per month. BUT then I read the small print. The program is only through December 2013 (and there is the even smaller print that says Bayer can cancel the program at any time).
Would I get used to a new meter? Learn to love it? Be happy about it and then be forced to go back to One Touch because the Bayer strips still aren’t covered by my insurance?? Or is this some type of bridge program til they can get more insurance companies to cover it? I don’t know.
I know I have one friend that was forced to change to the Bayer strips cause insurance quit covering they One Touch. I know another than had no problems with her insurance ever covering the Bayer strips. I have good insurance. Really good insurance. So I don’t particularly want to rock the boat. I just wish that they looked at glucose strips as glucose strips. They all pretty much cost the same, so why do they care?!
Has anyone else had trouble getting these Bayer Contour strips covered? Does anyone know what the deal is with the strip program? Is it going to continue? What’s the purpose of it? I mean, if more insurance companies aren’t picking them up at the end of the year, they will lose customers. We don’t have money to pay for strips out of pocket if we don’t have to.
Anyway, another choice in the life of a person with diabetes. Which meter? Sigh. This is life. Sadly, I can’t go with the “fun” meter just because it’s fun. I’ve got to go with what the insurance will pay for.
My One Touch Ultra Link |
This week, MiniMed sent me my Bayer Contour Next Link. I’ve been reluctant about it just because I LIKE my One Touch. In fact, I used a One Touch for years before I starting pumping and was really glad when MiniMed switched from BD to One Touch. The thought of changing meters again made me kind of twitchy.
But, as with any new meter, curiosity got to me. I opened it up and decided I’d at least try it. I linked it to my pump (you can have more than one meter linked to your pump, which I didn’t know). And I used it. And I liked it. A lot. It surprised me how much. I like a lot of different meters, but having this one made me want to keep using it. I thought about switching after my next refill of test strips, so I stopped by my pharmacy and had them run my insurance to see if I could get the strips. Turns out Bayer strips are “non-preferred” and that makes them not covered. Accu-Chek and One Touch are (which I already knew).
My Bayer Contour Next Link |
There is supposedly a program that Bayer has that offers a discount on strips if you have insurance (not Medicaid or Medicare). You only pay $15 per month for strips. I thought about doing this as well. I could use the new meter and it would actually be cheaper than my current co-pays because they are more (way more) than the $15 per month. BUT then I read the small print. The program is only through December 2013 (and there is the even smaller print that says Bayer can cancel the program at any time).
Would I get used to a new meter? Learn to love it? Be happy about it and then be forced to go back to One Touch because the Bayer strips still aren’t covered by my insurance?? Or is this some type of bridge program til they can get more insurance companies to cover it? I don’t know.
I know I have one friend that was forced to change to the Bayer strips cause insurance quit covering they One Touch. I know another than had no problems with her insurance ever covering the Bayer strips. I have good insurance. Really good insurance. So I don’t particularly want to rock the boat. I just wish that they looked at glucose strips as glucose strips. They all pretty much cost the same, so why do they care?!
Has anyone else had trouble getting these Bayer Contour strips covered? Does anyone know what the deal is with the strip program? Is it going to continue? What’s the purpose of it? I mean, if more insurance companies aren’t picking them up at the end of the year, they will lose customers. We don’t have money to pay for strips out of pocket if we don’t have to.
Anyway, another choice in the life of a person with diabetes. Which meter? Sigh. This is life. Sadly, I can’t go with the “fun” meter just because it’s fun. I’ve got to go with what the insurance will pay for.
Wednesday, January 23, 2013
Fourth Times a Charm?
I swear, sometimes diabetes just likes to raise a fuss. It does it in whatever way it can and causes as much trouble as possible in as short a span of time as possible. A couple of days ago my blood sugars starting running on the high side. I wasn't sure why. It happens sometimes. But I dealt with it. I thought.
I was at work and I ended up bolusing ALL DAY LONG. It felt crazy. I figured I was 3 days into my infusion set, so my site was probably going bad. I didn't change it at work cause I only had and hour left. I decided to wait until I got home.
When I got home I grabbed my dinner and heated it up. As it was heating, I did a site change. New insulin, new site, ready to go. I bolused and started to eat. Not 30 seconds in, I get a "No Delivery" alarm. GAHH!
Okay, I hate "No Delivery" alarms. They are annoying. I don't know why I get them and nine times out of ten, my cannula isn't bent. But it still ends up requiring me to replace a set. I took out my new set and cleaned with alcohol and popped in a new set.
Problem? Um.... I didn't wait for the alcohol to dry. Guess what... sticky doesn't stick when it's still wet from alcohol. And you know what that means? Another infusion site.
At this point it was infusion set number THREE for me.
I finally bolused and ate dinner.
And waited. My blood sugar wasn't coming down. It was going up, up, up! I tried bolusing again. And by the time it was time for me to go to bed, it was obvious that my blood sugar wasn't coming down. I took a chance on the fact that I had ANOTHER bad site and ripped out my third site and put in a fourth.
I bolused again and set my phone alarm to wake me up at 2 a.m. for a middle of the night test.
I was 170 at that point. I bolused again and when I woke up I was in the 140s.
I figured I had taken care of the problem. But I ended up running my insulin pump on 120% basal for most of the morning.
It's almost like my body revolted on me after the initial high. After lunch, everything went back to normal and I've been doing well since then.
What's annoying is that it took FOUR new infusion sites and a day and a half of insane bolusing to get my blood sugars back to where they should be.
So.... maybe fourth times a charm?
I was at work and I ended up bolusing ALL DAY LONG. It felt crazy. I figured I was 3 days into my infusion set, so my site was probably going bad. I didn't change it at work cause I only had and hour left. I decided to wait until I got home.
When I got home I grabbed my dinner and heated it up. As it was heating, I did a site change. New insulin, new site, ready to go. I bolused and started to eat. Not 30 seconds in, I get a "No Delivery" alarm. GAHH!
Okay, I hate "No Delivery" alarms. They are annoying. I don't know why I get them and nine times out of ten, my cannula isn't bent. But it still ends up requiring me to replace a set. I took out my new set and cleaned with alcohol and popped in a new set.
Problem? Um.... I didn't wait for the alcohol to dry. Guess what... sticky doesn't stick when it's still wet from alcohol. And you know what that means? Another infusion site.
At this point it was infusion set number THREE for me.
I finally bolused and ate dinner.
And waited. My blood sugar wasn't coming down. It was going up, up, up! I tried bolusing again. And by the time it was time for me to go to bed, it was obvious that my blood sugar wasn't coming down. I took a chance on the fact that I had ANOTHER bad site and ripped out my third site and put in a fourth.
I bolused again and set my phone alarm to wake me up at 2 a.m. for a middle of the night test.
I was 170 at that point. I bolused again and when I woke up I was in the 140s.
I figured I had taken care of the problem. But I ended up running my insulin pump on 120% basal for most of the morning.
It's almost like my body revolted on me after the initial high. After lunch, everything went back to normal and I've been doing well since then.
What's annoying is that it took FOUR new infusion sites and a day and a half of insane bolusing to get my blood sugars back to where they should be.
So.... maybe fourth times a charm?
Wednesday, January 16, 2013
JDRF South Region T1D Symposium - 2013
Over the weekend I attended the JDRF South Region Symposium in Nashville. I was so blessed to get to go and I have so many things to share. This was the first Symposium of it's kind that I've been to. And the first that Nashville and the South Region of JDRF has done. I'd personally like to see it become a regular thing. Let me tell you why....
When they announced this Symposium back in September, I knew right away that I had to go. Why? Well, one of the guest speakers was the D-OC's own Kerri Sparling. I wasn't about to let Kerri come to Tennessee and NOT go see her. Plus, I kind of wanted to see her around a bunch of people with Southern accents. ;)
I signed up to go with a dear friend of mine. She's not a blogger...or a tweeter, but she's on facebook and TuDiabetes and she occasionally guest blogs for me. Sherry is one of the kindest souls I know and I knew we would have so much fun.
When the weekend arrived, I was buzzing with excitement. I knew some other people I'd met before were coming. I also knew there were a few people that I'd never met IRL before that were going to be there. AND I knew there were new people to meet.
There were vendors set up when we were registering and getting settled in on Saturday morning. One of the good things about that was that I got to hold and play with the new t:slim insulin pump. I thought it was pretty awesome looking, and fun to play with. It also appeared to be more sturdy than I first imagined...though I guess the true trial would be how long it lasted (I'm tough on pumps).
Before we could even sit down to have lunch, I ran into some old Nashville area diabetes friends that I hadn't seen in a while. And I got to meet some bloggers and tweeters that I hadn't had the chance to meet yet, including Julie, Andrea, Holly of Arnold and Me & Aaron Jaffe (who I didn't know had a blog called Rep the Betes, until this weekend; shame on me!).
Seeing Victoria again was SO much fun. And I got to meet some awesome new friends like Stephanie, Madison, and Jordan (who had two blogs like I do! You can find her d blog HERE).
Honestly, the friend connections are always my favorite part of things like this, but there was also a host of fantastic information. Listening to Tom Brobson, National Director, Research Investment Opportunities for JDRF, shared his experience with the artificial pancrease trial, and shared some of the focus of JDRF.
One of my favorite quotes of the weekend (that Tom Brobson shared) was "Less Until None" in reference to JDRF working toward diabetes having less burden, being less invasive, having less complexity, and having less danger in our lives until there is no diabetes left. I like the sound of that. While I don't know that I expect a cure any time soon, the "less" stuff has a nice ring to it.
I attended both of Kerri's breakout sessions, and was thoroughly glad I did. The first was on Pregnancy & Parenting. While I'm not a parent, not pregnant, and not planning to be, I do think that pregnancy and parenthood are in my future somewhere. I wanted to know what she did and is doing to have a healthy pregnancy, and being healthy for her daughter. Kerri had an endo there also answering questions (turns out it was MY endo!!!), so there was medical advice, as well as Kerri's personal experience.
Kerri's other session was on T1 Diabetes in the "real" world. There was a whole room full of young people, older people, parents of children with d, people who'd been recently diagnosed. It was great to see everyone coming together and sharing stories. And just for reference, Kerri's talks sound exactly how she writes her blog posts. :)
Another session that I attended was on diabetes complications. It was a little depressing, but I liked some of the information I gained. I had mixed feelings about it, honestly. It wasn't what I was expecting, so I was a little disappointed. But at the same time, I found it very informing and I learned a lot, so I can't be TOO disappointed.
Overall, I thought the weekend was a rousing success and I really hope that JDRF continues to do things like this. While I understand that they like as much money as possible to go into funding research, there is a huge mental aspect to diabetes and this is one way to help. It goes right along with that "Less burden" part of the JDRF "Less Until More." Because things like this make diabetes less of a burden in my life.
When they announced this Symposium back in September, I knew right away that I had to go. Why? Well, one of the guest speakers was the D-OC's own Kerri Sparling. I wasn't about to let Kerri come to Tennessee and NOT go see her. Plus, I kind of wanted to see her around a bunch of people with Southern accents. ;)
I signed up to go with a dear friend of mine. She's not a blogger...or a tweeter, but she's on facebook and TuDiabetes and she occasionally guest blogs for me. Sherry is one of the kindest souls I know and I knew we would have so much fun.
When the weekend arrived, I was buzzing with excitement. I knew some other people I'd met before were coming. I also knew there were a few people that I'd never met IRL before that were going to be there. AND I knew there were new people to meet.
There were vendors set up when we were registering and getting settled in on Saturday morning. One of the good things about that was that I got to hold and play with the new t:slim insulin pump. I thought it was pretty awesome looking, and fun to play with. It also appeared to be more sturdy than I first imagined...though I guess the true trial would be how long it lasted (I'm tough on pumps).
Before we could even sit down to have lunch, I ran into some old Nashville area diabetes friends that I hadn't seen in a while. And I got to meet some bloggers and tweeters that I hadn't had the chance to meet yet, including Julie, Andrea, Holly of Arnold and Me & Aaron Jaffe (who I didn't know had a blog called Rep the Betes, until this weekend; shame on me!).
Seeing Victoria again was SO much fun. And I got to meet some awesome new friends like Stephanie, Madison, and Jordan (who had two blogs like I do! You can find her d blog HERE).
Honestly, the friend connections are always my favorite part of things like this, but there was also a host of fantastic information. Listening to Tom Brobson, National Director, Research Investment Opportunities for JDRF, shared his experience with the artificial pancrease trial, and shared some of the focus of JDRF.
One of my favorite quotes of the weekend (that Tom Brobson shared) was "Less Until None" in reference to JDRF working toward diabetes having less burden, being less invasive, having less complexity, and having less danger in our lives until there is no diabetes left. I like the sound of that. While I don't know that I expect a cure any time soon, the "less" stuff has a nice ring to it.
I attended both of Kerri's breakout sessions, and was thoroughly glad I did. The first was on Pregnancy & Parenting. While I'm not a parent, not pregnant, and not planning to be, I do think that pregnancy and parenthood are in my future somewhere. I wanted to know what she did and is doing to have a healthy pregnancy, and being healthy for her daughter. Kerri had an endo there also answering questions (turns out it was MY endo!!!), so there was medical advice, as well as Kerri's personal experience.
Kerri's other session was on T1 Diabetes in the "real" world. There was a whole room full of young people, older people, parents of children with d, people who'd been recently diagnosed. It was great to see everyone coming together and sharing stories. And just for reference, Kerri's talks sound exactly how she writes her blog posts. :)
Another session that I attended was on diabetes complications. It was a little depressing, but I liked some of the information I gained. I had mixed feelings about it, honestly. It wasn't what I was expecting, so I was a little disappointed. But at the same time, I found it very informing and I learned a lot, so I can't be TOO disappointed.
Saturday, January 5, 2013
New Year with Diabetes
New Year with Diabetes : Striving for _______ in 2013.
This is the topic for this month's #DSMA Blog Carnival. When I saw the topic I spent some time thinking about what I want to do this year in regards to diabetes. My first thoughts were about specifically health related things. Perhaps trying to lower my A1c? Exercising more (or at all)? Eating healthier? Avoiding things I know make my blood sugar spike? There are so many things I could strive for, but in truth most of these things are things I work toward at some point in every year.
Then I started thinking about the advocacy part of diabetes. Truth be known, my blogging has decreased, my active online presence has drifted from nearly non-existent to semi-active. I want to change these things. So I have a few major goals for 2013. I won't call them "resolutions" because I never seem to keep those. Instead, they'll just stay goals. I'll work toward them steadily and if I reach them in 2013, that will be amazing. If not, I'll keep at it until I get there.
First off, I'd like to get back into active tweeting on my diabetes twitter account. I feel like I've slacked, and I miss my friends.
Secondly, I want to make a goal to blog at least once a week for this blog. That means 52 blog posts in 2013. I want to make this happen.
Next, I want to make it a goal to read (and comment) on more blogs. I have slacked on my reading of blogs, and I want that back. It's how I keep in touch with what's happening in the D-OC and I need to get back to that.
And finally, I want to become more active locally in diabetes advocacy. There is so little that goes on in my area, and I feel a need to get people together. Living in a rural area makes it hard to find people who are willing to get together, but I think it's possible. And I want to make this happen.
So these are my goals for 2013. I hope to reach them soon, and feel more than free to slap me around if I look like I'm not doing them. I give you permission. :)
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