In honor of Throwback Thursday, here is a humorous post from May 4th, 2010. Enjoy!
Last
night I wrestled my son to the ground and later heard about the
consequences. You see said child, admitted that no he hadn't been
spending his time mulling over the perfect gifts to purchase for his
devoted mother for either Mother's Day or her birthday. In some
countries I am sure his actions would have constituted a hanging offense
but in our house in meant that I tackled him, interrupted his Wii game,
pinned him down and tickled him. Thankfully I still have a few pounds
and an inch or two on him so I can still win.
The
downside to this fun when you have a child on an insulin pump who wears
sites in his leg is obvious to those of us who live there. After the
screams of "I've gotta pee!!!!", came the grumblings of "You pulled out
my site!". With the cost of pump supplies being covered for us, it felt
good to say "Well, just go and change it." Once upon a time, I would
have cried at the $20+ that I had just wasted even if it was in the name
of fun.
Being
a teen, my son was in no rush to change the site and Mom had visions of
highs for the rest of the evening. The longer he waited, the less
insulin he would get, the higher his bg levels would climb I was sure.
Again, being a teen and being my son, he stated that the site was
salvageable and he had simply taped it in place. I was worried. Was
the site really still in? Yes he assured me as he headed off to the
shower. His grumbling about being bested by his mother had been
replaced by the comment that if Mom could wrestle him then wrestling
with his brother should once again be allowed (It was discontinued after
brother's elbow met son's eye and left a nasty shiner). I attempted to
burst his bubble but he still was quite proud of his logic as he headed
off for his marathon shower.
Once
he undressed he proclaimed "Mom, I look like I have been shot!" What
did that mean? He told me that there was blood all over his leg. I said
that was it, the site was gone! He had to change it. He proceeded to
shower and I never got to really check out the damage. He kindly left
the dead and bloodied site in the shower for me though. Ironically he
was disgusted when he found it on top of an envelope later. I had taken
a picture and left it for him. He told me that the site should be in
the garbage! Um, who left it in the shower to start with? Oy!
The weekly bg reading review that I had dictated in September has
long gone by the wayside. I occasionally ask about readings on the phone
or over text conversations but I try to keep it to a minimal. If my
son gets into real trouble, he calls or texts me with his SOS. Diabetes
care is remaining in the periphery of our relationship as he strives to
make it on his own. We still talk about care and I still like to know
what is going on but I think I truly have turned a corner in my new role
and acceptance of it.
A couple of weeks ago, I suggested that we have a phone conversation
about his readings in the coming days. My son told me that he had an
upcoming appointment with his CDE. I then suggested that we wait until
after the appointment and then we could discuss what was or wasn’t done
and see how we felt about it.
My son thought that was a great idea and we set our new date to
chat. Last week that day arrived. I knew that my son’s readings had
been uploaded by his educator (my son has managed to lose two cables for
his pump and I feel bad contacting our rep for a third one). I went
online to see what the readings looked like.
As I opened the screen I laughed and laughed. There were a lot of
boluses and insulin cartridge fills but I only saw two readings. I
laughed some more! For a change, it was not me who got to look at no
data and try to sort things out. It wasn’t me to go…”What gives?” only
to be told that he had used other meters but didn’t have them with him.
This was not my problem. I laughed some more
.
It felt good to have that burden lifted. Whether there were or were
not readings, I was not the one who would bang their head in frustration
and begin the tedious task of trying to track down information. The
smile remained on my face.
Later that evening I called my son and we discussed his appointment.
It had gone well. He had readings on a different meter and the two of
them had discussed the area my son knew was a problem. My son was
pleased that he wasn’t told what to do but asked his opinion on the
problem. Suggestions were made by both parties and my son left happy.
Mom wasn’t needed. For a change, that felt okay. My son was happy.
He had made his own decisions. He had been able to talk to someone about
his care and share his knowledge. It was a win-win situation as far as I
could tell.
I will still call and talk readings. I will still be here to
troubleshoot and to cheer from the sidelines but my son really is taking
charge. He can do this. I always knew he could but the fact that he is doing it makes me feel a bit better…well for today anyway.
Last week, during blog week, I told you about things that get my dander up
and make me want to scream from the roof tops until they are fixed. One
of those things was access to insulin pumps and supplies. Since the day
that I realized that there were more options available to my son than
the insulin regimen we were currently on, I was adamant that all people
with diabetes should have choice in their treatment options.
People living with diabetes should be able to decide if they want to
use Lantus over NPH. They should be able to choose Apirdra over regular
insulin. They should be able to see if a Continuous Glucose Monitor or
an insulin pump is for them without having to sell their home. That
sounds extreme doesn’t it? Sadly it isn’t. Despite living in Canada
with its socialized medicine, Canadians are still not always able to
access the best treatment options for them. They may not have private
health insurance or their insurance may not cover the devices that they
desire to use. The result is that they go without or go to extreme
measures to get the medical tools that they desire to keep them healthy.
For me, that is not acceptable.
My son began using an insulin pump 11 years ago. I had wanted a pump
for him since the first time I heard of the flexibility that it allowed
but financially it was not an option. His father had medical insurance
but insulin pumps were not covered. What changed 11 years ago? My
family stepped in and said that they would come together to pay for the
pump. They wanted the very best for my son. It is a moment that I will
never forget.
Over time things have changed thankfully. Provinces have begun to
cover insulin pumps–for children. Those over 18 have had to find good
insurance, high paying jobs, go back to injections out of necessity
rather than choice or move to Ontario (the first province to cover all
people with Type 1 diabetes who wished to use insulin pump therapy). In
my own province of Newfoundland and Labrador, changes have been made as
well, the age limit for assistance was moved to 25.
Today my son is 16. He is heading into his final year of high school
and looking at career options. The most important part of his career
choice is to find one that is either very high paying or offers great
benefits. What he enjoys seems to be second on our list. That is
discouraging and gets my dander up.
If a person wishes to use an insulin pump to best control their
diabetes care, then they should have that option. Age, financial
status, or occupation should not dictate what type of therapy they can
receive. With this in mind, advocates in provinces like British Columbia have
created petitions to ask their government to expand coverage and remove
age restrictions. Pensioners are having to go back to injections
because their private health care coverage ends at retirement. Young
adults who are beginning careers and new families are having to rethink
how they will move forward because of cost constraints brought on by
managing their diabetes care
.
This is not right. Age should not dictate whether you get an insulin
pump or not. Insulin pumps provide just as many benefits to adults as
it does to children. Adults with type 1 diabetes who are using insulin
pumps often find shift work much more manageable. They tend to see less
diabetes related down time because they can micro manage their disease
with greater ease. The addition of Continuous Glucose Monitoring
systems to their care can help them to anticipate dangerous highs or
lows that could have otherwise sent them home for the day. Increased
productivity and work time for people with diabetes has a larger impact
on society as well. People living with diabetes who are able to work are
able to contribute to the provincial tax coffers through their
employable earnings. They are less likely to have complications or
dangerous blood glucose swings that could send them to the hospital.
Our young people with diabetes are able to look at jobs in the province
rather than having to move to areas with better pay and better benefits.
The rewards definitely outweigh the costs to the provincial
governments and our health care systems. With this in mind, I have
created a petition
that will ultimately be presented to the government of Newfoundland and
Labrador asking that they expand their insulin pump program.
Please consider signing and sharing this petition.
The more voices we have, the stronger we are. This is a very serious
and real issue. The stories and needs behind the petition are heart
breaking. I have spoken to a government employee who have had to rent
out her homes so that she can have extra money to be able to afford her
diabetes supplies. I have listened to medical personnel who have had to
rely on financial help from a life partner in order to continue
pumping. I have sat down with members of the police services who pay
the equivalent of an extra car payment each month just to keep
themselves pumping and healthy. There are also people who are in
minimum wage jobs who have no choice but return to injections after they
turn 25 because they just can’t afford to pay for their rent and their
insulin pump.
This needs to change. With your help it will. Please support this initiative for all of those who choose to use an insulin pump.
The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.
I had only read the introduction when I wanted to cry. Why is there so
much judgement surrounding diabetes? Why do people living with diabetes
feel that they are either good or bad? Well, as Ginger points out, its
because there is so much good and bad mentioned when talking about the
disease.
Your readings are good or bad. They are not the result of a carb
counting error or a pending illness that you cannot foresee. They are a
good reading or a bad one. The food you eat is either good food or its
bad and a diabetic shouldn’t eat it. Your A1c when you see the doctor
is either good or bad.
The constant judgement does not end there. I was listening to a
conversation a few weeks ago and quietly cringed as I heard someone
mention that a person had diabetes “really bad”. Another person had
mentioned that someone had died because they had the “bad kind of
diabetes”. I wanted to say that there is no good kind! You can only
hope and pray that a person with diabetes has all of the knowledge,
supports and tools that they need to care for themselves in the best
possible way. It wasn’t my place to educate at that time.
The good kind I assume, is the kind that is managed by diet and
exercise but is it really that good? You still have to live with guilt
for each piece of food that enters your mouth. You must be constantly
wondering when that bullet will hit its target and you will get the
dreaded sentence–”You have the bad kind of diabetes”.
What is the “bad kind of diabetes”? Is it when you have to have
needles? Is it when you are on pills? Is it when you are overweight? Is
it when you are two and don’t know why you have to be stabbed and poked
at all of the time? Is it when you have to be hooked up to a machine
24/7? When does it become “bad”?
Personally, it is always bad. In all of those cases, our bodies have
rebelled against us and are not working as they should. We have to
fight and struggle to compensate. Using insulin actually can make it
easier not worse. Modern insulins allow people with diabetes to be able
to match insulin to food amounts in a way that their body, without
insulin, can’t. That’s not such a bad thing. It allows them to have
that piece of chocolate cake without concern of a crazy high a few hours
later.
This distinction between “good and bad” actually has a negative
impact on treatment as well. While insulin injections or insulin pumps
are not an option for a person living with Type 1 diabetes, it is often
seen as a last resort for a person with Type 2 diabetes. Sadly this is
not the case. Studies have shown that giving a person with Type 2
diabetes insulin earlier can actually preserve some of their beta cell
functioning and make their lives a little easier. Unfortunately, that
“good and bad” issue stops that from happening. People fear that they
will be “bad” if they are on insulin. This further translates to the
thought that those who live with Type 1 diabetes and need an external
source of insulin to keep them alive must have it “really bad”.
I thought about other diseases and wondered if any others have it
“bad”. Cancer has stages. Diseases like MS are referred to has having
“full blown MS” versus the early stages. I could not think of any other
disease that allows people to have the “good kind” or the “bad kind”.
Is it the lifestyle component but if it is why do we not hold that same
standard for other “life style” related diseases? Is it because in the
other diseases they understand that lifestyle is only a small component?
People will say that Type 1 diabetes is NOT a lifestyle related disease
but that does not stop the public from blaming the lifestyle of the
mother of a person with diabetes. We are blamed for things like not
breastfeeding long enough and other equally ridiculous notions.
What is the answer? How do we fix this? I don’t think that there is a
quick fix. I think that we continue as we have been. We educate people
who ask us if we have the “bad kind of diabetes”. We work with the
media when they try to get it right. We are kind but firm with those
people who are ignorant of the facts because we may have once been
ignorant as well. Finally, we find a cure so that no one ever again has
to be judged because their body has failed them.
Write a short story personifying a diabetes tool you use on a
daily basis. A meter, syringe, pump, pill, etc. Give it a personality
and a name and let it speak through you. What would it be happy about,
upset about, mad about? (Thank you Heather of Unexpected Blues for this topic.)
Hello, my name is Fred and I am a glucometer. You would think with a
job as important as mine that I would get a lot of respect but I
don’t. I am shoved in dark pockets, thrown around and basically taken
for granted. Its a very rough life.
I am expected to be ready for service at all times of the day. It
doesn’t matter if I worked hard all day, they still expect me to be
bright-eyed and shining at three in the morning. And when I say shining,
I mean that they really want me to light up all nice and bright showing
them glowing pretty numbers. When they are done with me, they just toss
me off to the side again.
My job is tireless. They smear blood all over me. They curse at me
when they don’t like what the reading is. Like that is my fault? How is
it that I control what their blood glucose is going to be? I deserve a lot more respect.
The only time I get respect is when the parents or the doctor take a
look at me. They know how important I am. They look at my display as
if they are reading a holy gospel. They value me and my knowledge. My
owner? Well, he looks at me like I am a rock, a burden that he is forced
to carry around. I am the unwanted younger brother that he has to take everywhere.
Why does he have to think of me that way? It hurts my feelings. I am
just trying to do my job. I am trying to work with him to keep him
healthy. I know that it can be tedious. It’s not picnic for me either. I
mean, I have to be on all of the time! There is no time when I can be
just a little less accurate. I have to bring my A-game every time we
meet. Its exhausting but I don’t get any praise or appreciation.
He just doesn’t get it and some times I get mad as well and when I
do, I get even in my own way. When he just grumpily and shoves a strip
in me and expects me to instantly produce results, I come back and tell
him “Error 4″. Oh does that get his goat! He has to retest and take his
time to treat me a little nicer–getting all of his blood just so on the
test strip so that I will read it for him. After he has done that, I
reward him by saying “HI” but he doesn’t often see the humor in that
one. I don’t understand why. Isn’t it important to be friendly now and
then? Perhaps if he could be a little nicer, we could work together a
bit better and I wouldn’t have to resort to cheap jibes.
Maybe one day he will get it. One day he might understand how
important I am! Oh well, at least he takes me most places. I usually
only hear about the spots that we go to from the inside of a pocket but
at least I get to tag along. It’s not easy being me. I guess it’s not
easy being him either, but I still say, “work with me dude! It will make
things so much easier!” Darn! I shouldn’t have said that so loud, here
comes another check. Back to work!
Yesterday
we opened up about how diabetes can bring us down. Today let’s share
what gets us through a hard day. Or more specifically, a hard diabetes
day. Is there something positive you tell yourself? Are there mantras
that you fall back on to get you through? Is there something specific
you do when your mood needs a boost? Maybe we’ve done that and we can
help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)
Is there a mantra that I fall back on to get me through a hard
diabetes day? Absolutely! It is one that I share with newly diagnosed
adults and parents who are struggling to get through. I remind them to
look at life in four-hour blocks. If you take everything in four-hour
strides and you can ride through anything.
When diabetes seems to be kicking your butt every morning, look at
how things are going between lunch and supper. Are things okay? Give
yourself a mental high-five and celebrate that victory rather than
dwelling on the post-breakfast spike that this threatening to drive you
over the edge.
Do overnights seem overwhelming? Again, break it down. How are
things from snack until 12 or 1am? What is life like in the deepest part
of the night? Are things settled before breakfast or has chaos been
awakened in those four hours? If you break it down into six four-hour
periods, life becomes a bit more manageable and instead of seeing all of
the bad, you can savor some of the good.
Why do I have a four-hour mantra? Because early on I learned that my
son’s Humalog was supposed to last about 4 hours. He was injected at
8am for breakfast, then at noon for lunch, around 5pm for supper and
then again at 9pm for his nighttime snack. I was going crazy trying to
see a perfect 24 hour day. I realized that looking at a complete day was
never going to make me happy. The only way to see success was to look
at small chunks of time. Coincidentally, that was also how we would
make changes to his regimen. Was his breakfast ratio of carbs to
insulin off? How about at bedtime? Life was naturally being broken down
into 4 hour chunks for me so why not work with that?
Now I know some of you will say, but we are using a pump so that
won’t work for me. Yes it will! Chances are high that you are still
doing things like having breakfast, lunch and supper. You are probably
still going to bed at one point as well. All of these events can be
broken down and again my four-hour mantra applied. Was I a successful
pancreas this afternoon? Yes? AWESOME!! Let’s break out the happy
dance!!! Did I have an issue after supper? Okay, let’s look at what can
be done.
Life is less overwhelming in four-hour shots. It can be applied it
outside of diabetes as well. Are you wanting to change your eating
habits? Did you have a great breakfast? Pat yourself on the back. Over
did it at lunch? Do better tomorrow. Can you see how easily this works?
Life can be overwhelming. As we discussed yesterday,
life with diabetes can make it worse. Taking life four hours at a time
has allowed me to focus on what I need to change and to praise myself
when I get it right…and we all need a lot more praise in our lives.
