Desperately Seeking Diabetes Nanny.
Wonderful opportunity for the right individual.
Duties include, but are not limited to:
- Cajoling me to check my blood sugars, even though I wear a CGM and am sometimes lulled into a sense of false security
- Showing me that sometimes, a CGM can be wrong but that it’s OK
- Forcing me to sit and calculate how many carbohydrates will going into my mouth, factoring in the fat and protein content with that wild card of how much insulin I currently have on board and how much exercise I might be doing in the near future (or how much I did in the distant past) and if it’s that time of the month or if I’m not feeling well or… at least telling me that it’s OK that the amount of insulin I take is based on too many factors to nail it every time
- Waking me up when that alarm goes off, signifying a low blood glucose level in the middle of the night, because I might be sleeping peacefully and soundly (Because who needs an uninterrupted night’s sleep? Not this woman.) and stuffing me with glucose when I tell you that I’m perfectly fine
But wait… there’s more!
- Ensuring that I have, in my possession, before I leave the house: my meter, my strips, emergency glucose that doesn’t taste yucky (Glucolift, FTW), back-up insulin to inject if my pump fails, an extra pump cartridge, an extra infusion set, a snack in case I get caught somewhere and can’t get something to eat
- Willing to navigate the labyrinth called the U.S. Healthcare system with its endless medical necessity letters and insurance claims that get kicked back and the multiple phone calls required to get a straight answer about what is covered and what isn’t covered
- Patting my hand (or covering my mouth) when someone makes an ignorant comment about diabetes and I have to give the elevator speech about what diabetes is and isn’t, how we get it and how we don’t, and that sugar isn’t our enemy (our pancreases are)
- Pushing me to stand up and take a stand when I see injustice in the world: lack of access to the drugs, devices, and services that can keep people with diabetes healthy - and alive
Let’s not forget this part of the job!
- Holding me tightly when I am drenched in sweat, shaking, and unable to wait that proposed 15 minutes before ingesting another 15 or 30 grams of carbohydrates after a gut-wrenching low blood sugar - or when I am lethargic, thirsty, and bitchy after a high blood sugar that came out of nowhere
- Reminding me that complications can happen to everyone with diabetes, no matter how tightly or loosely controlled their management has been and that it doesn’t make me - or anyone else with diabetes - a “bad” person
- Lifting my head to look to the horizon for small, but important, advances in diabetes research to inspire me to keep going
- Consoling me when I learn of a life lost to diabetes
- Understanding that I will never be cured, even if a “cure” is found tomorrow, as the damage done to my body will stay long after diabetes is gone
- Keeping me sane when diabetes slows me down
Important aspects of being a diabetes nanny you should know about:
This is a 24/7/365 position.
There are no vacation days, sick leave, retirement plan.
You’ll get on-the-job training, as the manuals don’t seem to cover the day-to-day living with diabetes.
This job has been held by parents, friends, coworkers, spouses, and sometimes, strangers, but they can’t really explain what they did or how they did it. You’ve got to experience it for yourself.
You may not be angry at me (or the world) for having diabetes, although you can be angry with me.
Did I mention that this is an unpaid position and no opportunity to advance?
Whiners and martyrs need not apply.
Applications being accepted now.
“A house divided cannot stand.”
I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.
It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.
Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.
Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.
The Divided House
I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.
Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.
But this community, this house I love, is a house divided.
Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:
“I’m sick of the public thinking I’m Type 2.”
“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”
“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”
“My son did nothing to deserve getting Type 1.”
“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”
“I’m not like them.”
But you are. We all live in this house.
The Numbers Don’t Lie, But They Are A Little Fuzzy
Here are the latest numbers, taken from JDRF’s General Facts page and the National Diabetes Statistics Report 2014 from the CDC. (It’s pretty. With graphics. And it’s a PDF so you can print it out and put in on a bulletin board. Or maybe that’s just me.)
Who Lives In Our House
29.1 million people have diabetes in the United States.
21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.
3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)
The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)
The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?
Our House is Getting Crowded
Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.
Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.
Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?
- Is the exterior a hodgepodge of different colors, because we couldn’t decide?
- Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
- Do we have an inviting path to greet everyone who knocks?
- Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?
I do not want a diabetes house divided.
I want a diabetes home.
Home, Sweet Home
- Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
- Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help - or hurt - people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
- Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
- Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…
Help build our community.
Help build our home.
Help make a home for everyone impacted with diabetes and let the world know that we are united.
This morning, The Kid donned her furry Halloween costume and, with the promise of candy, traipsed behind a kind lady to a room filled with older ladies and gentlemen. We were part of a toddler parade at the local Memory Care & Alzheimer’s facility and I watched as the faces of these individuals lit up when small fairies, Spidermen, Supermen, ladybugs, Dorothy clutching a stuffed Toto, and my daughter, cavorted around.
They were all in varying stages of the disease that robs them of the thing I hold most dearly: their memories.
Some clapped and joyfully engaged with the children, asking them about their costumes. Others sat quietly, staring without emotion at the hullabaloo. One man didn’t speak at all, but when The Kid batted an orange balloon at him, he smiled and tossed it back to her. She fell down, giggling, in front of him and he reached down to grab her foot and shake it playfully. She grinned at him, he grinned back, and then she took off to look at the fish tank.
When I glanced back thirty seconds later, he was gone; physically still there, but lost in himself. I saw his spark ignite and extinguish in the space of a few minutes. My heart didn’t so much as break as melted.
One of my great uncles (my grandfather was one of thirteen, so there were a lot of great aunts and uncles growing up), Bill, drifted off into the horizon with Alzheimer’s when I was young, but I was shielded to the devastation that it wreaks on a family. It’s one of my greatest fears to be diagnosed with it (along with having a fatal myocardial infarction at a young age) and here I was, face-to-face with those who live with it - and in it.
Scientists are linking diabetes to Alzheimer’s disease these days. You can read about the link here , or here, or get your scholarly info here.
In a nutshell, the people who are a lot smarter than most of the world say that blood vessels in the brain are damaged by high blood sugars and that inflammation also plays a part in the aging of brain cells. The damage can be done years before the first signs of Alzheimer’s disease show up, so all anyone can say is the same as we always hear: keep your glucose levels within range, eat healthy, and get regular exercise.
I can’t forget the happy look on that man’s face - and then the absence of any emotion - and I sit here now, wondering if diabetes will take away yet something else from me in the years ahead.
If you wonder why I advocate and raise my voice for diabetes awareness and healthy living, this is one reason. One reason of many.
Dr. Suess is big in our house right now. The tuck-in process includes “Brush Teeth!”, “Binkie!” (the same purple fleecy blanket every.night.since.November that I have to wash in between naptime and bedtime), and “Book!”. John reads a random selection chosen from our ever expanding library for the wee one, but I get a secret delight when a Dr. Suess book shows up in his hands, especially Dr. Seuss’s ABC’s.
The brilliant Ted Geisel says that D is:
David Donald Doo dreamed a dozen doughnuts and a duck-dog, too.
And it’s also that vitamin that is getting a lot of play with the research world and with a lot of us, too.
Up until last March, Vitamin D was just the “sunshine vitamin” and an additive to my milk. No idea what role it played in my body and I assumed that I was getting enough of it. Au contraire, mon frère.
Last January, in an off-hand remark to my endo, I said I was experiencing horrible pains in my joints. “My family’s arthritis gene is kicking in.” I also admitted that I was exhausted and wasn’t sleeping well, but simply assumed that it was just a consequence of having an infant in the house. He tapped his pen on my chart and asked: “Are you getting charlie horses?”
I gaped at him. “How did you know?”
He scribbled on a lab sheet. “You’re probably Vitamin D deficient. We’ll check your levels and get you back to normal.”
I didn’t go out in the sun very much, wasn’t eating a lot of fish and eggs or drinking fortified milk (I’ll admit, I was living on Diet Coke and whatever I could gobble during the day. Eating healthy was for the baby, not for me.) All of these things, plus the fact that I am diabetic, put me at risk for Vitamin D deficiency.
When the lab results came back, his nurse informed me that I was suffering from “severe Vitamin D deficiency” (like, almost into rickets territory) and that I needed to go pick up a prescription stat. 50,000 IU every day for two weeks, then every two week, then one a month. Mega dosing.
Sure enough, once I was back to normal levels, the joint pain went away, I began to sleep better, and no more charlie horses. Unbeknownst to me, another symptom of Vitamin D deficiency is poor concentration. It explained why I couldn’t keep a thought in my head, blaming it on “mommy brain”.
A Vitamin D level is now permanently added to my lab test list. I won’t let it get back into the danger zone. Why? This article: Low Vitamin D Levels May Raise Death Risk in Type 1 Diabetes.
Recently, low levels of vitamin D also have been linked to a higher risk for heart disease and death. Some studies are also looking at possible links between vitamin D and diabetes complications such as kidney and eye disease.
And the kicker:
Patients with type 1 diabetes and very low levels of vitamin D may be more likely to die than those who get enough vitamin D. However, the reasons for this are unclear.
What’s another pill? Nothing in the grand scheme of things…
But it’s not just taking Vitamin D after diagnosis that helps in the long run. According to this article (and a few others), taking Vitamin D can lower the risk of developing Type 1 diabetes. 4000 IU each day for an adult and this study gives a recommendation of up to 1000 IU daily for infants and children. For anyone (diabetic or not) planning a pregnancy or currently pregnant, this very scholarly article plainly states:
Vitamin D deficiency in pregnancy probably increases the incidence of autoimmune diseases, such as Type 1 diabetes, in genetically predisposed individuals.
So, my question is this:
Why does this vitamin play a crucial role in the health maintenance of Type 1 diabetics and in the possible prevention of autoimmune disorders? What makes it so special? Anyone know? I dream about finding the answers…
And so does David Donald Doo.
Relationships are hard.
Duh, says everyone.
Millions Billions A gazillion dollars have been spent by humankind over thousands of years to find out what makes us click - or not. Poems, books, movies, therapy sessions, divorce courts, and Facebook are mostly about relationships. If someone actually figured out the magic formula, the world wouldn’t know what to do with it. We’ve been conditioned that conflict is good - in moderation.
Diabetes is hard.
Duh, says… most of us. Some medical professionals and people not familiar with the disease have this idea that managing diabetes is a couple of shots and watch what you eat and why aren’t your blood sugars perfect? You must be cheating. Managing diabetes is complex, convoluted, and confusing (Look! Alliteration!), even with better technology and better drugs and the ability to share and learn from each other. You know the old adage: “Insanity is doing the same thing over and over again, expecting different results.”? When it comes to diabetes, the adage becomes: “Insanity is doing the same thing over and over again, expecting the same results.”
Relationships and diabetes together are…say it with me…hard.
I didn’t need a study to tell me that, but here it is, straight from the annals of Diabetes Care, published for their March edition: Personal and Relationship Challenges of Adults With Type 1 Diabetes . The researchers did a small study, using focus groups split into two categories: the Type 1s and their partners, asking pertinent questions about their relationships. Know what they’ve discovered?
Four main domains were identified: 1) impact of diabetes on the relationship, including level of partner involvement, emotional impact of diabetes on the relationship, and concerns about child-rearing; 2) understanding the impact of hypoglycemia; 3) stress of potential complications; and 4) benefits of technology. Themes suggest that, although partner involvement varies (very little to significant), there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress. Partner support is highly valued, and technology has a positive influence.
Again, I say: Duh.
I love the little quip about “…there exists significant anxiety about hypoglycemia and future complications and sources of conflict that may increase relationship stress.” I know this. I live this.
I see the worry lines in John’s forehead when he watches me struggle to come up from a low. Every day, we engage in some discussion about blood sugars or what I’ve eaten or some aspect of diabetes. He has been incredibly brave when I’ve been a coward, helping me choose the decisions that are best for our family. It is tiring to me, so I can only imagine how tiring it is to the people around me. Or if I didn’t have a supportive husband but a Diabetes Police new recruit. But you know what’s worse?
I once had a relationship with someone who just didn’t care at all. Despite being a medical professional, he chose to act as if it was just my disease alone to handle. No encouragement for the good days and no comfort for the bad days. Begrudgingly helping when I was sick or needing assistance when I was in severe hypoglycemia. I’m surprised the relationship lasted as long as it did.
So, we already knew what researchers have told us in this article. What do we do about it?
- Talk about your feelings and fears, if not with your spouse, then with someone who can give constructive steps to deal with the issues in your relationship (and your relationship with diabetes). Not talking about it won’t help either of you feel any better. And you want to feel better, right?
- Friends for Life, the annual conference in Orlando that used to be just for Type 1 kids and their families is now offering an Adult Type 1 track with some interesting classes. Dr. Bill Polonsky will lead a Couples Discussion Group, while Jill Weissberg-Benchell & Kerri Sparling offers up a Dating and Diabetes seminar and Diana Naranjo will facilitate a Significant Others Discussion Group. Come hang out with the rest of us and get some insight as to how other couples handle diabetes and relationships.
- Read more about the impact diabetes plays in relationships at dlife.com - lots of great articles from people you already know.
- Personal experience: The worst time to talk about diabetes is when a Type 1 is having a low. When John asks: “Why do you think you’re low?”, it results in me giggling, telling him that I’m not wearing socks, or growling angrily. Sometimes all three at once. Talking about diabetes after the diabetic has come up from a low and when the effects of adrenalin and cortisol coursing through the system can result in a coherent, cogent conversation (Look! Alliteration again!) and probably not a discussion about socks.
I’m married to my diabetes. No option for divorce or at this point, even a trial separation. My husband still married me, knowing this. I love him all the more for that. Even on the tough days.
If you take nothing else away from this, remember:
Relationships are hard.
Diabetes is hard.
I say duh a lot.
Got suggestions on dealing with diabetes + a significant other? Resources to add? Bring it on!