My Diabetes is Out of Control: Part 1 – Take Control of Your Ship!

Tags

blogger, control, diabetes, diabetes educator, diabetic online community, dietitian, DOC, doctor, forum, health care team, insulin

I’ve seen a number of posts on forums lately from people who have recognized their diabetes is not in the best control, but they don’t know what to do about it. They are following their health care team’s (HCT) orders, but it’s not working.

Of course without exception whenever such people try to shift blame back on their HCT: what you are telling me to do isn’t working; those HCT members almost always shift blame back to the patient: you aren’t doing it right.

How many of us have experienced this? How many of us have ranted about it? How many blog about it?

Links:
Diabetes Daily
The Bad Diabetic

Let’s make one thing perfectly clear. Manageing diabetes is a personal effort. I, the diabetic, am in charge of my own care. I make my own decisions. I stear the ship.

This idea may seem self-evident, but it’s suprising how many of us defer our responsibility, and it’s even more surprising how so many in our HCT refuse to acknowledge it.

I’ve talked with many diabetics who have never even considered making their own decisions: Linda (the Diabetic Educator or DE) says I have to do it this way. I could never do what you’re talking about. The lady was obese, uncontrolled, and slowly sliding downhill. She might be dead now, or worse. It’s been a couple of years. And there are things worse than death. I have no desire to lose my legs, my eyesight, and be hooked to a kidney machine three days a week. The bottom line is this woman would not take control of her own condition. Everything she did had to be vetted by Linda. Linda deals with 5,000 diabetics. She has no time to provide day-to-day or hour-by-hour care for diabetics. The best she can do is train them and ship them out into their own hells. Should she do differently? Definately. Part of the problem is our HCT does not want us to assume control. It’s too dangerous. Everything major should be approved. Don’t make medication changes. Don’t make dietary changes. And whatever you do, don’t ask other diabetics. Stay away from those dangerous bloggers!

The reality: I make 6 to 10 life and death decisions every day. This is not exaggeration. This morning my BGs were 8.4 mmol/l, rather high. I changed my pump set then bolused 3u. My new set might not have worked at all. Maybe it might send my BGs high and blur my vision while I’m driving to work. I could maybe feel my sugars rising and hurry in so I could correct again, but I’d be putting my life and my wife’s life in danger. Then my meter might have been wrong. It happens. Those 3u might send me hypo on the way to work. I am insensitive to them after my long years of battle, so I’d very likely drift off into shock while driving at speed. Doesn’t that sound like fun? I repeat this several times a day, day after day, year after year. I sometimes think it’s a wonder I’ve only been 911’d nine times.

My HCT cannot be with me when I make my daily life and death decisions, and since I’m the one in danger of dying, I’m the one that needs to take control. And if they don’t like it, tough.

That doesn’t mean I’m flying solo. Taking control of the wheel doesn’t mean I’m firing my HCT. No, a good manager surrounds themself with good people. I want to make the very best decisions I can, so I want the very best information and advice I can find. My HCT sits at my board table and is a key member of my team, but it’s my team.

I include many people at my table. I have bloggers, I have publications, I have scientific studies, I have various forums I visit, I have personal friends with diabetes, and I have my family. The Diabetic Online Community (DOC) is the deputy chairman of my board. The DOC is largely ignored by my HCT — they don’t talk at all — but I listen to them both.

The DOC has a huge strength that my HCT doesn’t have: it’s always at the table. I hold board meetings every day, sometimes several times. MY HCT chair is almost always empty. When I count up the annual attendance, I might come up with three or four meetings they attend each year. But we have decisions to make today. I have a decion to make right now. My two-hour follow-up reads 9.2, higher than this morning. I’ve only eaten a coffee with heavy cream and coconut oil. My body feels even higher. I look around and there is nobody at the table but you and me. I can call the DOC in, and I’ll get different opinions. But I don’t really need their help for this problem  I need immediate oeprational action. I could call my HCT, but they’d question my sanity: this is a day-to-day operational problem. Board memebrs don’t make day-to-day decisons. We’ll discuss the trends during the annual meeting. You’re right, I’ll say to them, what was I thinking?

I need a decion made right now. Waiting an hour for a half dozen opinions will only make things worse. In this situation, I need to take action, and I need to take it right now. I’m assuming my set failed around 5am; though there’s no immediate cut-off. I’ve experienced this before, and I know I need extra insulin. I just bolused four more units. I have sugar tablets at the ready, and I’ll test again in two hours.

Let’s get back to our HCT.

They don’t actually tell me that I’m in control of daily operations. They might assume it, but they don’t like to say it. They are like that retired owner of the business who can’t stay away from his office and can’t resist telling the son what he needs to do to grow the shop. He can’t say “Son, the ball’s in your hands now. Run hard!” He can’t let go. My HCT can’t let go. They can’t be with me, but hey can’t let go: You need to do this, that, and the other things. I’ll make a note and we’ll discuss it next year.

Some of the decisions I make are not so cut and dry. I set my own insulin dosages. I set my basal rates and bolus rates. I decide what diet to follow. My diet looks nothing like my HCT’s plan, and they give me a hard time about it, but they don’t have many patients running a 5.6 A1C with almost no hypos either.

Can you feel the distance between diabetic and doctor? Have you experienced it? Can you see the need to have someone in charge, someone to make those day-to-day and hour-to-hour life and death decisions? Is there anybody better positioned to do this job than you?

Of course you are afraid. You know what a bad decision means. It means at best criticism from your board of directors: you screwed up badly, John. What the hell were you thinking? The company was lucky to survive that one. Yeah, well, how much do you have invested in this company Bob?

Fear is not productive. You will not attain good control if you do not assume control. You cannot make those operational decions that need to be made if you are too afraid to make them. Failure is imminent. 90% of diabetics fail to achieve the desired level of control. I say 90% of diabetics fail to take control of their disease.

Stand up and take control of your diabetes. Take control of your life!

*Part 2 will cover basal insulin
*Part 3 will cover testing
*Part 4 will cover lifestyle changes

Doctor John!

Tags

A1C, diabetes, DOC, Literary, prose, PWD, retinopathy, Writing

I’ve written a lot about diabetes. Most of the time I respond to forum posts. A forum post can serve many purposes. The member can be looking for help and advice, they might be ranting about a problem, or they may be giving advice. I think that probably covers the gammut: input, processing, and output to the old-school IT folks.

My responses usually involve a certain amount of information. I have experienced a lot with my disease — I am a type 1 diabetic in my 37th year of battle — and I think I have a fairly comprehensive view of management techniques. We commonly say “Knowledge is Power!” and I follow through with trying to provide knowledge to the ignorant. Being ignorant and being diabetic is not a good combination. This is not a disease you want to have if you are stupid. Too much can and will go wrong. I am also not afraid to try new things. I consider myself a willing lab rat, and I consider all possible advice.

When I reply to threads, I usually pick one of four formats:
– this is what I did and why
– this is what I think the issues really are and these are your choices
– that’s wrong and this is right (Ye olde debate)
– good luck with that!

One thing I try never to do is tell someone what they should do. I don’t know them, and I am not qualified to make such statements. In fact, anybody who says “you should … ” get’s a big red X put beside their name in my book regardless of subject. Life is not that simple, diabetes is not that simple, and writing is not that simple. Yes I’m writing about writing.

Here’s a post I wrote this morning.

Keep in mind your objectives. The needs of a child are different than the needs of an adult on a ketogenic diet. For a child running high blood sugars, accuracy and ability to get quick samples is important. You are making immediate decisions which impact your child’s life. When I show ketones, and I almost always do, I merely want to know what color purple it is. I know it won’t be dark since DKA doesn’t happen on a ketogenic diet, but too light means I’m cheating too many carbs. I just now tested between 40 and 80 (4 and 8) and last evening I was 40 (4). My BGs this morning were a bit high at 142 (7.9), but I had a late snack while watching hockey last night, and I bolus conservatively before bed.

Here I was informing someone about ketone testing. I did this because most diabetics and health care professionals have limited understanding of ketones. They typically see ketones as bad, and in my opinion, that’s a wrong approach. I didn’t tell this person that. I didn’t delve into all my opinions about doctors and diabetic educators and the evils they bring. I simple told it how it is. I left it open for those interested to research. “Ketogenic diet, what the hell is that? I’ll Google it.” I’m not writing a book here; I’m triggering peoples’ brains. I want them to think!

Later I responded to a dad questioning if it was okay to feel apathetic about his child’s high blood sugars.

I tell diabetics “great things are accomplished in small steps.” Of course the number is important and we don’t want them, but flushing out the reasons is not easy, and applying practical solutions is often harder. It took me over 30 years to figure it out and I still struggle daily

• – current 5.6 A1C, very very few hypos, and no signs of retinopathy
  
• – dx 1975
  – 911’d nine times 1995-2006
  – prolif retinopathy 1994
  – 4000 laser zaps 1994 – 2000
  – vitrectomy 2006

Keep the head up and feet moving forward.

This thread informs, but it’s primarily motivational. I start out telling them there is hope and that losing battles are expected in this war. I let them know it’s alright to feel defeated but victory is still possible, if not probable. I often “show” them my situation and my turnaround. I want them to visualize what I’ve been through and what I’ve accomplished. A diabetic reading those points will see fabulous facts in the first line. They should say “great!” Then the following five points will tell them I’ve been through a war. It should tell them that turnarounds are possible, that we do it every day. If your not a diabetic, you really can’t relate to what four thousand blasts of laser are like. These are not simply bright lights but are little bolts of flame burning the back of my eye. My retinas look worse than any burned and mangled body. If you don’t believe me, Google panretinal photocoagulation someday when you’re pretty sure you won’t throw up. If you can still stand after that, then try Googling Vitreous Hemorrhage  or Vitrecomy and watch the Youtubes.

I then end it with another motivating line. It’s nothing particularly moving; it’s just a  simple message of hope.

Writing like this is different from writing creatively, but I still try to use literary techniques such as showing vs. telling and using active verbs and sentences. For fun, I wondered if I could write a fictional piece about a diabetic child at school with high blood sugars. It rambles a bit, but enjoy anyway 🙂

Billy attempted to walk home from school instead of taking his usual bus. He knew exercise would lower his blood sugars, and it semed like the cure for the 450 his meter showed him. But brains soaked in high levels of blood sugar don’t function well. Before he knew it, he was looking for a bathroom to relieve himself in, but of course there aren’t any public restrooms in West Allis neighbourhoods. He settled on a row of big bushes running between two houses. He remembered thinking he was doing the bushes a service by watering them, and when the branches hit his face, he knew he should swipe them away, but his hands wouldn’t move. He couldn’t feel his hands or his legs or the large roots as his head hit them. Those bushes might have been his last resting place if old Marge hadn’t come home early from work. She opened the door of her big Mercury Marquis and saw the little body laying in her hedge. “Oh My” she thought, and immediately reached in to see if it was alive. Her cell phone was new to her, but she knew enough to dial the simple numbers – 9 1 1 .

Billy spent the night in the hospital and the next morning his parents grilled him about his day then drilled him on making good decisions. Billy looked at them with big eyes that knew his parents’ words did not match his day. That’s when doctor John entered the room. He slid in silently while Billy’s parents prattled on. The doctor stood and listened. Billy knew he was sneaking, that he was on his side, and he knew not to let on after doctor John winked at him. He knew he had a new friend, someone to tell these big mouths to shut up!