Wego Health’s Challenge of the day is to come up with working titles for books based on health condiditions.
So here they are…
My five working titles
1. Got Milk? Go Away: Managing Food Allergies in School
2. Not Your Grandma’s Diabetes
3. “Should She Be Eating That?” and Other Stupid Things People Say About Kids With Type 1 Diabetes
4. Apologies To My Math Teachers: I Do Use Algebra in Real Life
Confessions of A Carb Counting/Insulin Giving/Blood Sugar Checking Swagging Mom
5. It’s Just A Number
The Highs and Lows of Type 1 Diabetes
If the genie in a bottle was giving out worry-free day passes, what day would I chose? wow……let me think on that….WOW….one day, huh?….WOW
Only one day? Prom, graduation, college, starting career, marriage, birth of my grandchild…..only one day? Can’t do it…maybe I’m selfish, but I want all those days to be worry-free like they are for parents who don’t have kids with chronic health issues like food allergies or Type 1 diabetes.
But I’d settle for 4 years worry-free for each of my two wonderful children. The four years of college….let them go to the school of their dreams, no matter how far from home that may be. And let them be safe from harm.
If I could have the ear of the engineering/marketing people at a major diabetes medical equipment manufacturer, I would let them know what a dream gizmo for the management of diabetes would look like to me.
First, I am tired of “one offs”–some great ideas but they work independently…not integrating or coordinating with any other products on the market. For example, iBGStar meter…love that you can turn your iPhone into a meter….but why limited to iPhone users only….some of us can’t afford such pricey phones. Why not create a meter that can be used with any smartphone? And the iBGStar doesn’t talk to any pump.
T1’s and their caregivers need less “stuff” to lug around…
Medtronic users: pump with tubes (pump is also the device to bolus/set basals etc), cgm w/transmitter, meter that links to pump, lancing device, strips, lancets
Other tube pumps (Animas, T-slim): pump with tubes, remote to bolus/set basals (which is also the meter for Animas Ping), lancing device, strips, lancets, additional meter for T Slim (no linking meter) These pumps currently do not have cgms that are integrated, so cgm with transmitter will also need an additional receiver to carry with you.
Omnipod: pod pump, pdm which is meter + remote for pump operation, lancing device, strips, lancets –no current integrated cgm so cgm with transmitter will also need an additional receiver to carry with you.
For those who don’t pump: insulin vial and syringe or flexpen, bg meter, lancing device, strips, lancets and maybe a cgm system
So here it is, what I want –The Dream Diabetes Managment Machine
A waterproof tubeless pump
that has accurate cgm and pump contained in the one pod
and insulin and glucagon (oh, Artificial Pancreas we long for your approval)
with the ability to operate pump from any smartphone
and use any smartphone as a bg meter–with test strips of choice
and allows multiple users to be notified by alarm when bg goes high or low (controls to be set by owner)
That sounds about right!
But what I really want is a CURE!
Starting with the most important–
1. Insulin (I know, obviously…but sadly too true!)
2. Continuous Glucose Sensor (okay I’ll throw the insulin pump in with this as they are integrated) and the mySentry (Medtronic’s remote monitor for caregivers)
3. Internet–for connecting to the DOC, looking up carb count/food allergens
4. Juicy Juice–those little boxes come in mighty handy treating nighttime lows
5. calculator–when I am trying to calculate a correction for a high in the middle of the night
6. Bayer ContourNext Link meter….takes much less blood than the OneTouch Ultra Link used + it lights up so I can use it at night without a flashlight!
7. The Bayer Contour 2 “pricker” aka lancing device….this has been KC’s pricker of choice…we covet them!
8. storage/organizers: everything has a place and everything in it’s place where D-supplies are concerned
9. KC’s Spi-belt that she wears for PE and sports…keeps that pump out of the way and safe.
10. String cheese–KC’s fave “free”snack.
“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan
Today’s challenge is whether we believe that the quote from Mulan above, is true or false. My initial reaction was to consider my son and daughter, both of whom face adversity because of their food allergy and Type 1 diabetes, respectively. But I also began to wonder which flowers bloom the best under adverse conditions. So I did a quick google search and came up with the Crown of Thorns…..and I thought….wow, here it is a Sunday morning and the symbolism of “crown of thorns’ is even more impactful for its association with Jesus Christ. And I just finished watching a Rick Steves’ program about Edinburgh that described the St. Giles Cathedral with its ornate spire designed to look like the crown of thorns. Another example of Baader-Meinhof Phenomenon, which occurs when a person, after having learned some (usually obscure) fact, word, phrase, or other item for the first time, encounters that item again, perhaps several times, shortly after having learned it. I was just telling another T1 parent about this phenomenon the other day, as an explanation for why we seem to learn of so many other Type 1 diabetics after our own child’s diagnosis. And I just remembered that my son watched Mulan in 2 classes this week–weird, huh?
So here I am in this surreal loop this morning….and am reminded of when I taught a class on archetypes and symbolism to high school students. They fought against the concept of symbolism: “Mrs. C, can’t a tree just be a tree? How do you know it means anything else?” And my response would be that if the tree were merely mentioned in passing, then yes, it was just a tree. But if the writer drew your attention to that tree over and over again, then the tree was symbolic and therefore, had greater meaning. Today, the “crown of thorns” appears to have meaning for me.
And yes, I truly believe that survival against adversity makes one more beautiful…makes the victories that much sweeter….
Have a blessed Sunday!
One of the biggest issues caregivers face is burnout: a state of exhaustion which can be mental or physical. Many of us are in the throes of burnout and don’t even think about it. We are so used to the exhaustion that we take it for the “new normal.” Helpguide.org reports that you may be on the road to burnout if:
“Every day is a bad day.
Caring about your work or home life seems like a total waste of energy.
You’re exhausted all the time.
The majority of your day is spent on tasks you find either mind-numbingly dull or overwhelming.
You feel like nothing you do makes a difference or is appreciated. The negative effects of burnout spill over into every area of life – including your home and social life. Burnout can also cause long-term changes to your body that make you vulnerable to illnesses like colds and flu.”
Parents of children with Type 1 diabetes are extremely susceptible to burnout due to sleep deprivation and constant worry. While T1 is a disease that can be successfully managed, parents of CWD feel great pressure to keep their kids safe, to get achieve good blood glucose numbers, to have tight control over the disease. And we parents often put our own needs on the back burner. Our relationships with our spouses/partners can suffer and also our relationships with our other children. But what are we to do? The reality is that Type 1 is a 24/7 disesase and depending on the age of the child with T1, the parent’s job is also 24/7.
According to Helpguide.org, we need to remember the 3R’s:
I admit that I am exhausted most days. I try to go back to bed after my T1 goes to school so I can get at least a couple hours more sleep…but that disrupts my day and prevents me from accomplishing as much as I would like. But I think a rested mom is better than a spic and span house. I try to schedule one big chore per day to spread out the tasks–but life often gets in the way. I also try to do things I enjoy–crafts, reading etc. when I can.
My husband and I try to carve out small units of time together. It may be a simple as driving together to get gas and leaving our son to watch over his T1 sister or we just sit on the porch, drink in hand, and talk for 15 minutes.
My non-D son and I are trying to play Scrabble together a few times a week so that he get positive attention from me. One thing we have always done occurs when one child is out with friends–we take the other child out for time alone with both parents.
And my greatest anti-burnout tool has been the DOC. Some days, I probably spend too much time interacting on-line with other D-mamas, but it is cheaper than therapy! I do not know what I would do without the friendships and connections I have made in the DOC.