Diabetes is not a contest.
There are no grand prize winners, no consolation prizes, and no picking what’s behind Door Number 2. You can dress up in a silly costume, but a game show host will not be selecting you to jump up from your seat in the studio audience.
And yet, I see that some people with diabetes trying to make it seem that way on social media.
I belong to a number of groups on Facebook that focus on diabetes. Some groups provide wonderful articles from reputable sources while others, promoted as a place of support, are crammed full with pronouncements and requests for advice.
“What’s the highest your blood sugars have ever been?”
“What’s your lowest recorded blood sugar?”
“How much insulin do you take each day?”
These are questions that pop up frequently on my newsfeed and the answers are almost boastful.
“I take 150 units of Novolog every day…”
I’m curious as to why these people ask (and answer) these questions. Is it because they feel the need to compare themselves to others with diabetes? Are they better than others? Worse off?
Diabetes is not a contest.
Yes, sometimes we play the “Guess my blood sugar!” game with a friend or family member. (John always wins that one in our house; I think he cheats.)
We take bets daily on which dosage will be the right amount to keep blood sugars within range. Sometimes we take a chance with our blood glucose meters. I’ve played chicken a few times with my diabetes management, and I’ve always come out the loser. Some are diligent and still come out losers. But it’s not a contest, right?
We may try to game our disease, but there are too many slots on the roulette wheel to say for sure where that ball will land… and you know that the house always wins in the end.
And in the end, the quality of life for all of us is compromised because of a disease that doesn’t let us win, but we do get to have the play at home version as a lovely parting gift.
Diabetes is not a contest.
There are no right answers. No buzzer at the end of the round with commercials from our sponsors.
Every individual with diabetes is different and while some may be coherent (barely) at 35 mg/dl, others may have long lapsed into unconsciousness. Those wandering upright with highs over 500 mg/dl are not to be scorned or lauded; they need help to bring their blood sugars back into range. It doesn’t matter if you take one unit or 1,000 units of insulin per day - whatever you need to keep you safe and alive is what you need.
I have never hid my A1C struggles. My current is 6.7%, up from a low of 6.3% last year. I don’t get a medal for that, just as I don’t get a medal for the A1Cs in the teens during my high school years. My A1C is a signpost and I have a choice to make every day on how I handle my blood sugars and my diabetes.
Some people with diabetes share their A1Cs in an effort to show others that they’ve been working diligently at making positive changes in their lives. These PWD talk about those positive changes, giving their take on their own struggles. I love reading these posts, because this is the reality of diabetes.
Those who, and I’m judging a little bit here, boast about how they’ve never had an A1C over 6.0% because they take care of themselves… well, I can do without the gloating. (And they seem to never give the “how” of how they keep it at 6.0%, more of a “I just follow the rules…”.)
Diabetes is not a contest.
It’s not a reason to get incensed when an unsuspecting stranger makes a comment that blatantly shows they do not understand the nuances of the disease and its many iterations. I see these posts far too often:
“How dare they tell me that I can’t eat [insert food here]! They don’t get it at all!”
“That mother has NO idea how difficult it is to parent a child with diabetes!”
“I hate that the public thinks we all have Type 2 diabetes! I want to change the name so that they will know it’s different!”
Well, this is, as a former supervisor would say to me, “an opportunity to excel”. Turn the rage into a teaching moment. Rather than getting all indignant and stirring up others who feel like we’re misunderstood, take a moment and breathe, then say:
“Diabetes is a complex disease. There are different types and different ways to treat the disease. If you have a moment, I’d love to tell you a little bit about it, so that you can help others learn.”
And you can change the name of a disease all you want… it will still be the same disease with the same misperceptions. You’ll just spend more time hollering into the blackness about how the name is different.
Diabetes is not a contest.
It doesn’t matter in the end what diabetes you have. There are preconceptions and misconceptions about both types from the general public and even from within the diabetes community. Have you seen these quotes before?
“That person asked me if I have the bad kind of diabetes!”
“She told me that my diabetes must be severe if I have to take shots!”
“Type 1 diabetes is far more difficult to manage than Type 2!”
“Type 2 is an obese disease. Type 1 isn’t.”
Long term, we all are hunched over from the weight of complications that pick at every part of our bodies. Our pancreases don’t work properly. All diabetes is bad. All diabetes is severe. All diabetes is difficult to manage. And guess what… both types of diabetes can be “obese” diseases.
I am living proof that you can be fat with Type 1 diabetes. I know many people who are thin as rails with Type 2.
Why are we trying to prove to ourselves and others that one type of diabetes deserves more pity or money or time or effort or public awareness?
Diabetes is not a contest.
It’s a disease.
No one wins.
Whatcha doing on Tuesday, May 20th?
If you answered: “Joining you at the virtual 2nd annual Diabetes Hope Conference,” I’d be thrilled. (Of course, if you had said: “Giving you millions of dollars,” I would have also been thrilled. I’m easy to please.)
The Diabetes Hope Conference began last year as a way for the diabetes community to talk about the stuff we like to keep hidden in the closet: fears about complications and how those complications aren’t brought up because of those fears. Individuals with diabetes shouldn’t have to suffer in silence or think that no one else is going through complications, burnout, or frustration with this disease. The Diabetes Hope Conference had over 250 participants last year, so the founders of this conference is on to something… and that’s where we come in.
I’m personally inviting you to join me on Tuesday, May 20th from 12 - 3pm EDT for three panels of great individuals (and one modest individual, so she won’t say she’s great…that would be me…) to talk about the questions you want answered, how to talk with your medical team, and how to share your story with diabetes.
What’s on tap?
From 12 - 1pm EDT, it’s The Doctor Will See You Now, a Q & A session with Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association. Karen Graffeo and this chick, Christel Marchand Aprigliano (ohwaithat’sme!) will be moderating, fielding questions, and perhaps even asking our own questions (I’ve promised to be wicked nice.) to Dr. Anderson.
From 1 - 2pm EDT, The Value of Blogging in Chronic Illness with Mike Lawson and Kerri Sparling will talk about blogging and mental health with Pamela Katz Ressler, co-author of the study, Communicating the Experience of Chronic Pain and Illness through Blogging.
From 2 - 3pm EDT, Dr. Jen Nash and George Simmons will converse about doctor/patient relationships and how we can keep it healthy for both in Who’s in Charge? Who Says What? And Why? This is not a reenactment of Abbot and Costello’s Who’s on First skit, but with George, I’m sure there will be plenty of laughs.
What do you need to do?
1) Register for the Diabetes Hope Conference. It’s free, it’s virtual (you can watch it in your jammies and bunny slippers or the outfit of your choice - we don’t judge!), and we want you there.
2) Ask a question in advance for Dr. John Anderson, so that Karen and I don’t end up talking about cats and toddlers and our latest hairstyles. Obviously, it should be diabetes related, but other than that stipulation, it’s fair game! Got a burning questions about the burning in your feet? Ask it. Want to understand the reasons behind why you feel horrible after a low blood sugar? Ask it.
O.K., three things:
3) Join us on May 20th. You can also ask questions via Twitter using the hashtag: #dhopeconf if you’re feeling twittery.
As it says on the Diabetes Hope Conference website:
While there is no known cure for diabetes, that doesn’t mean the diagnosis is hopeless.
Come learn just how much hope there is. (If nothing else, you can watch me make funny faces live on a computer.)
FYI: None of the panelists receive any compensation for participating. Nada. And that’s cool by me. Cool by you? Cool.
I have a penchant for trigger finger. It’s a common complication for Type 1s and it hurts like hell if you use your fingers for, well, anything. The sheath that holds the tendons of the finger can get “gummed up” and stop the pulley like movement that allows your finger to move. It’ll catch. It’ll lock up. It will hurt. And I had it in both index fingers.
This wasn’t my first time at the rodeo. I knew that my only option when the pain got to be too much was surgery. (For people who don’t have diabetes, steroid injections often help. Every orthopedic specialist I’ve even seen has said… “Nope. Surgery.” You can argue, but after doing the research, I was right there with them.) I made a phone call to speak to a surgeon when I could no longer change The Kid’s diaper and hold her for very long without searing pain.
Perhaps my first mistake was wanting to get them both done in one fell swoop. (I had my thumbs done separately. Apparently I like my trigger digits in pairs.) The surgeon (who is Dr. Gupta’s personal orthopedic surgeon, if I can name drop) was efficient and the surgery itself was uneventful.
The healing was not.
My right hand was super. Very little pain after surgery. Healed nicely. My left hand was not. (Yes, my right hand didn’t know what my left hand was doing. Ha-ha.) It wasn’t healing well and I knew that within a few days that this was not normal. It was inflamed, red, and painful. A week after the surgery, I called the office and told the secretary that the incision was infected. She argued with me. (Yes, the secretary.) There wasn’t any one to write a prescription for antibiotics because it was the day before a long weekend and all the physicians had left. Please call back Monday.
Perhaps my second mistake was not telling the secretary that I was not going to wait three days. By Monday, I was absolutely positive that it was infected. The doctor called in a prescription. I took it for two days, but began to feel “not right”. Just achy and run down. My insertion site was on my leg and I noticed that it was tender…and red…and warm. I pulled the site and moved it to my belly. I figured the antibiotics that I was taking for my hand would just hit the infection that I had developed in my leg.
Perhaps my third mistake was thinking that I had years of medical school training. I called my endo’s office in the afternoon after watching the redness and the heat spread wider and wider across my leg. They, um…. freaked. I was told to come in immediately so they could examine it. And once I was there, the first C arrived.
Cellulitis is potentially life-threatening. Who knew? It is usually caused by streph or staph getting into your system and wreaking havoc on the largest organ in your body: your skin. My recent surgery was probably the culprit, along with that whole “weakened immune system because of diabetes” thing. My endo took one look at my leg and said: “You need IV antibiotics. Now. Go to the ER and they’ll check you in. You’ve got to be admitted through the ER. It’ll be faster.”
He obviously didn’t get the memo. I spent almost 7 hours in the waiting area, which was overflowing onto metal chairs set up in the hallway. The Kid hung out with me until John could get there (I think he broke a land speed record.), but I didn’t want her to be around the hacking and the contagious. They didn’t admit me, but kept me in an “observation unit” with a bed and hooked me up to a powerful antibiotic, Vancomycin, that was supposed to stop the infection from spreading. Fourteen hours later and bags of fluids and more Vancomycin, they sent me home with another antibiotic, Clindamycin, to take on top of the antibiotics that I was already taking.
Sometimes, the cure helps to bring something else. The combination of antibiotics I was given, plus the stay in the observation unit at the hospital, made me a breeding ground for a c. Difficile infection. Clostridium difficile is just plain nasty. We thought I had “caught a bug” from the hospital and yep, I did. I’ll spare you the gruesome details, but suffice it to say that I couldn’t leave the house or be more than 10 steps from the bathroom. I felt horrible. I was horrible. My blood sugars were kept within normal range with only minor adjustments in my basal rate, after talking with an endo on call. Then again, I wasn’t eating much because of the nausea accompanying the intestinal discomfort. It was actually easier to keep my diabetes on track when I was sick. Go figure.
After days of feeling crappy (and this is a pun, if you understand what the c. Difficile infection does to your body), I went to my primary care’s office. My fourth mistake (but at this point, who is keeping score anymore) was not questioning the lab tech who called me about one of the tests. “I’m missing a sample,” she said. “I’ll talk to the physician’s office, ” was my reply, and did exactly that. No one knew a thing was missing, so I dismissed it. Fifth mistake.
The PA (my physician was on vacation, story of my life) said it was probably a gastrointestinal (highlight the intestinal part) virus and if I wasn’t better in a week, to let her know. A week went by. I am not better. I am worse. John is taking off work because I am too weak to take care of my daughter and we are worried about me. I called the office and requested to see a gastro specialist.
The gastro guy listened to my symptoms and looked at my labs for two minutes before saying: “You’ve got a c. Difficile infection that’s been untreated for too long. We’ll test you for it, but in the meantime…” and scribbled more prescriptions for me on his pad. “I’m concerned that your colon could be permanently damaged, so you’ll need a…”
We have a history of colon cancer in my family, so I knew what the deal would be and joked that it would be ease to prepare for the colonoscopy because there wasn’t anything left in my colon. I had one, found that fortunately there was no permanent damage (and no sign of colon cancer), and within a week of the antibiotic regimen, I was feeling better.
So, the morals of this story? Don’t let anything go on too long if you don’t think it’s right. Trust your gut (when it’s working). Don’t think you’re a doctor unless you are. Don’t ever delay getting help for an infection if you have diabetes. And never, ever take your health for granted. We lost a summer of fun and playing with our growing girl because I didn’t think.
The tale of the three Cs. Thus ends the lesson.
I knew the day would come when my existing medication regimen wouldn’t be enough for my diabetes. The reality check came when I got the results from my calcium score
and admitted that if I was a betting woman (which I’m not, for I’d be broke by now), my cardiologist would suggest putting me on a statin.
I would have won that one. I’m joining the millions of individuals who, along with a low-dose aspirin, are part of the Crestor wave that’s sweeping the nation. 10mg for now and we’ll see what my liver is doing in about 5 weeks. The side effects that everyone has talked to me about (muscle pain and weakness) didn’t happen, so I’m thankful that I seem to be tolerating it. My cholesterol, while not being fabulous, wasn’t in the danger zone. (I love bacon and cream in my coffee. I avoid fried foods and red meat.) Will Crestor make a huge difference in my life? Much like everything else we do these days for diabetes, the only way we’ll know for sure is the absence of anything happening.
“If it’s successful, nothing happens. Keep waiting.”
The kind doctor also broached the subject of lisinopril as a protectant for my kidneys. I’ve been down that road before. In fact, I was one of the first subjects in the Captopril clinical trial that proved that ACE inhibitors can help people with diabetes protect their kidneys. My blood pressure has always been a little on the low side. Even the smallest dose of an ACE inhibitor sends me into dizzy world with an occasional “I’m going down, please clear a section of floor” moment. Until they can make an ACE inhibitor that allows me to keep upright, it’s not happening. (Don’t get me wrong. I’m very happy with having a low blood pressure, because I have friends who take ACE inhibitors because their blood pressure is high.)
I’m beginning to wonder what’s next on the list of diabetes complications that I should be tackling. I’m not being pessimistic or negative. After thirty years (almost 31!) of not always stellar control of diabetes, the reality is that I’ve been lucky. One incident of CSME (clinically significant macular edema), trigger fingers, frozen shoulders, slight gastric delay and really? I’m just as healthy as the next person.
But we can never let our guard down, can we? Diabetes doesn’t always follow the “If it’s successful, nothing happens.” philosophy. Kidney issues develop without symptoms. Retinopathy in early stages have no symptoms. Neuropathy happens slowly (until I am told it bears down like a freight train…). Nothing happens for a long time, then it’s there.
I want to know what I can do (and what I can’t, like taking an ACE inhibitor) to mitigate the risks of complications. I want to know what the latest research has proven and what clinical trials I can participate in to help myself and others.
So, in my case, if I’m successful, nothing happens. But I’m not waiting.
To: The Ghosts of Diabetes Past
It has come to management’s attention that you have been wandering the halls of her head in the dark of night, whispering and moaning to each other.
Cut it out.
Stop shaking those invisible chains and shackles that no one actually sees or hears, except those who may also have your brethren in their heads. You are becoming redundant in your complaints and excuses.
It’s not like she doesn’t already know each and every one of you by name: High Blood Sugar, Apathy, Just A Little Bite, One More Glass, I’ll Check Later, Got Too Much Else Going On, Complications, and her personal favorite, They’ll Be A Cure In Five Years.
Management hears you all loud and clear. Yes, she is choosing to ignore you now. You’ll still get your year end bonus and style points as you have for the last thirty years. It’s only fair, right? Except, you’ve never really been fair to her.
You are hereby put on notice that a re-org will be occurring in the new year.
The ghosts of diabetes present and future will be joining you. Please welcome Advocacy, Awareness, and Awesome Advancements. (She calls them the A-team, because they are bringing their A game to her head.) These are the new breed of ghosts. (Apathy? Yes, I know you are also an “A”, but due to your past performance reviews, you’ll need to sit this year out.) These new ghosts won’t tire, won’t give up, and make the right kind of noise in her head.
This are the ghosts who will have free reign. She recognizes that you’re not going anywhere. Some of you she invited in, unwittingly. Some of you were thrust upon her like unwanted holiday guests who don’t help with the dishes and sit outside, chain smoking and complaining. She’d ask you politely to leave, but she know you won’t listen.
Management requests that if you won’t leave, that you be silent most of the time. She’ll be busy collaborating with the new players in the team and your jingle-jangle of chains will just be a distraction.
Also, please take out the trash. (Hint: They’ll Be A Cure in Five Years is starting to smell “not so fresh”.)
Wishing you all the best (but not really),