I’ve never heard anyone describe injecting insulin as graceful or gentle.
The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.
If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.
Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.
Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.
Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.
Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.
The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.
You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand. But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.
No one said it would be easy. I knew it would be hard.
But no one told me when I was diagnosed that diabetes hurts.
“Your A1C is 7.5. Your fasting blood glucose level is 143.
You have Type 2 diabetes.
Here’s a prescription for a blood glucose meter and test strips. You don’t need insulin or medications right now. Let’s see how that goes. Check your blood glucose level with the meter and I’ll see you for a follow-up.
Oh, wait. You have Oregon Health Plan. Hmm… Yeah, go ahead and use the meter and the 50 strips that you are permitted to have, but after you’ve used up those 50 strips, you’re on your own. You want to continue to check your blood glucose level? Buy your own strips.”
This is not fiction. This is what Oregon thinks is completely appropriate for those who must use the state health care plan, which is funded by Medicaid. The rationale behind the Oregon’s Health Evidence Review Commission (HERC) recommendation, handed down yesterday in a public meeting:
- People with T2 diabetes who aren’t on insulin or oral meds don’t need to check
- It’ll save a bunch of money because these people don’t test anyway
- Randomized clinical trials prove that daily blood glucose testing doesn’t make a difference in A1C levels
- Hey, Kaiser Permanente is doing it and no one has died.
The Facts About This Recommendation
Here’s the report from the Bend Bulletin. Please raise your tray table and extinguish all smoking materials before you read it.
If you’re curious as to what the public had to say (and what HERC pretty much ignored and said wasn’t important), you can sift through pages and pages here. (p. 46 - 75). The responses from HERC would be comical, if they weren’t real.
The response to a Registered Nurse and Diabetes Educator from Eugene, OR who shared her thoughts about the impact that self blood glucose monitoring has on her patients:
Thank you for your comment. HTAS appreciates the perspective you bring to diabetes education, but finds the lack of effect of SBMG on patient outcomes more compelling.
Their responses to the American Diabetes Association, Endocrinologists, Nurse Practitioners, and patients were all dismissive and condescending. The HERC relied on very little data from randomized clinical trials that did not take into account the educational component needed to incorporate SBMG (self blood glucose monitoring) into a T2’s daily life. (Want to know which trials? Delve deep into the link above (before p. 46’s public comments) and ta-da.)
Meet Oregon’s Diabetes Death Squad
This group of people is the Oregon Diabetes Death Squad, who made a recommendation that people with Type 2 diabetes on Oregon’s Health Plan (OHP) don’t need to know what their blood sugars are on a daily basis. Because, you know, their own doctors can’t be trusted to know better.
Would you like to know what qualifications HERC has to make this important, life-changing decision (and in my mind, one that will cost them significantly more in the long run in emergency room and complication treatments…)? They must all work with people with diabetes on a daily basis, right?
Here’s the bios from the Health Evidence Review Commission Members page:
- Gerald Ahmann, MD, - recently retired hematologist/oncologist.
- Wiley Chan, MD, - internal medicine physician and Director of Guidelines and Evidence-based Medicine for Kaiser Permanente Northwest.
- Alissa Craft, DO, MBA, - pediatrician specializing in neonatal and perinatal medicine and Medical Director for Samaritan Health Plans.
- Irene Croswell, RPh, - retail pharmacist.
- Lisa Dodson, MD, - family physician.
- Leda Garside, RN, BSN, MBA, - Clinical Nurse Manager.
- Mark Gibson - Former fire fighter and current Director of the OHSU Center for Evidence-based Policy.
- Vern Saboe, DC, - chiropractic physician.
- Som Saha, MD, MPH, - general internist at the Portland VA Medical Center.
- James Tyack, DMD, MAGD, - dentist.
- Beth Kaplan Westbrook, PsyD, - clinical psychologist.
- Susan Williams, MD, - orthopedic surgeon.
For those of you keeping score, we have a psychologist, a former firefighter, a dentist, two chiropractors, and a pharmacist on HERC. How likely are those individuals to deal with people with diabetes on a daily basis? Unless they have a personal connection, they do not treat Type 2s as a member of a health care team.
Of the remaining members of the HERC, I wouldn’t bet the farm on extensive daily interaction with people with diabetes unless there is a personal connection. (Please note: I don’t have a farm, but if I did, I would raise naughas. For their hide, of course.)
Stopping The Future Carnage
I truly hope that this recommendation is not implemented. Is there anything we, as a community - or as humans - can do?
- You can continue to sign the petition that was created to tell Oregon that it’s not right to restrict or deny people blood glucose test strips.
- You can look at your own state to see what the current number of test strips offered under the Medicaid program. Is there something brewing to restrict the number? Let me know in the comments.
- You can tweet the governor of Oregon to let him know that HERC should not decide to deny blood glucose testing to Type 2s after initial diagnosis.
Why is this important? Why should you care?
Your state might be next.
Your insurance company might be next.
Your Type 1 diabetes might be next.
Your health might be next, even if you don’t have diabetes.
We are all on the firing line.
A blood sugar or blood glucose level is the number that often gets spouted off by a person with diabetes (or a family member or a medical professional), telling the world how much sugar is rolling around in their body. (It doesn’t really roll so much as swim. Backstroke or doggy paddle? Have no idea.)
For those of you whose beta cells didn’t take early retirement, your blood sugar levels consistently stay between 70 and 130 mg/dl. Doesn’t matter how much you eat, don’t eat, run a marathon, or watch TV all day. Your body does what it’s supposed to do - regulate your blood sugar levels so your body and your brain have the right balance of glucose in your system so you live.
Not quite so easy for those with diabetes. We have to do
a little a lot a huge stupidly gargantuan amounts of work to keep our blood glucose levels within a range that is doable.
Let me start off my explanation of blood sugar levels by channeling one of my favorite people, Bennett Dunlap:
“Your Diabetes May Vary.”
Every person with diabetes has their own version of what their optimum blood glucose level range is - and that’s between the PWD (person with diabetes) and their medical team. The various experts have interesting ideas on what should be the right range:
The American Diabetes Association says:
- Prepranidal (which is a fancy word for before eating a meal) blood glucose: 70-130 mg/dl
- 1 to 2 hours postprandial (again, fancy word for after beginning a meal) blood glucose: less than 180 mg/dl
- A1C: Less than 7%
Joslin Diabetes Clinic gets a little more detailed:
- Fasting blood glucose: less than 100 mg/dl
- Preprandial blood glucose: less than 110 mg/dl
- 2 hours postprandial blood glucose: less than 140 mg/dl
- Bedtime blood glucose: less than 120 mg/dl
- A1C: Less than 6%
* Note that Joslin says at the bottom of the page that this comes from information obtained from Joslin Diabetes Center’s Guidelines for Pharmacological Management of Type 2 Diabetes.
But wait… it gets more confusing. If you read their Clinical Guidelines for Adults with Diabetes (updated 2/2013), it says this:
- Fasting blood glucose: 70 to 130 mg/dl
- 2 hours postprandial blood glucose: less than or equal to 180 mg/dl
- Bedtime blood glucose: 90 to 150 mg/dl
Then there is the Pre-Existing Diabetes with Pregnancy Clinical Guidelines (updated 6/2011):
- Fasting and premeal glucose: 60 - 99 mg/dl
- 1 hour postprandial blood glucose: 100 - 129 mg/dl
These ranges also change for older individuals with Type 1 diabetes, young children with Type 1 diabetes, PWDs who have complications, etc.
The end goal for a person with diabetes is to die happily at a ripe old age with as few complications as possible. Sort of the opposite of: “The person who dies with the most toys, wins.” Having a target blood glucose range is a start, but there’s so much more than just checking blood glucose levels - once you have the number, you need to know what to do with it. I’ll be sharing my thoughts on that in the next few days…