Does this illustration scare you?
I first encountered this slide during an academic lecture given by Dr. Mikhail Kosiborod, MD when I attended the International Hospital Diabetes Meeting in May. He was sharing data about cardiovascular events and outcomes. (If you’re not an academic, the smart people begin to sound like Charlie Brown’s teachers after a while.) But when this illustration came onto the screen, I frantically scribbled the study’s authors down.
This slide was the first time I saw so plainly what was happening to me when I had a moderate hypoglycemic episode. (Dr. Kosiborod said that a “moderate” hypo was 57 mg/dl or less.) Not just the “I feel like I’m dizzy and not all here and let’s concentrate on something insignificant and is it hot in here?” reaction. This was what was going on inside without me feeling most of it.
Complications are not always from high blood glucose levels
We all know the long-term implications of high blood sugars. It’s that same old “-Opathy” chant that everyone sings loudly: “Retinopathy-neuropathy-nephropathy” with the back-up singers humming: “Don’t forget about stroke and amputation and arteriosclerosis and…big finish, everyone! Gum disease!”
But with lows, it’s a quick ditty: “Unconciousness, seizure, death.” It’s not a chart-topper, but it can be #1 with a bullet if you’re hypoglycemic. When I had those times of “Whoa…let’s stand in the kitchen and daze off into space,” it didn’t feel like I was doing any damage to my body. Sure, I felt like my head had been run over by Gravedigger and I was treading in molasses for several hours after some lows, but I recovered. Or so I thought. Now?
I am setting myself up for long-term complications with repeated moderate low blood sugars. So are you.
Here’s what happens (you can follow along with the slide, but I’ll break it down in terms we all understand):
Every moderate hypoglycemic reaction sends out wonderful proteins to increase inflammation in our body. (I’ll cut to the chase. We don’t want that.) They are:
Vascular endothelial growth factor (VEGF ), is a signal protein that helps to promote the growth of new blood vessels. We need VEGF as we grow in a womb (to create the blood vessels), after exercise or injury, and VEGF can help create new blood vessels when there is an obstruction. But, much like really good food, it’s only good in moderation. Too much of it (“overexpression”) can contribute to asthma, retinal problems, and cancers. The levels go up when we have a moderate hypoglycemic episode.
C-reactive protein (CRP) is a protein released in response to inflammation. Some of our organs, like colons, show a greater risk of cancer when they’re chronically inflamed. This lovely protein also raises our risk for heart disease, high blood pressure, and coronary artery disease.
Interleukin 6 (IL-6) is an interleukin (No, I’m not a medical professional or a biology whiz, so I had to look it up. Fancy word for protein) that does double duty: it promotes inflammation and can help with healing in certain situations. In this case, when we have a low, it’s under the inflammation category. And it gets busy.
“IL-6 stimulates the inflammatory and auto-immune processes in many diseases such as diabetes,atherosclerosis,depression,Alzheimer’s Disease,systemic lupus erythematosus,multiple myeloma,prostate cancer,Behçet’s disease, and rheumatoid arthritis.” - Wikipedia
Vasoconstriction, the narrowing of blood vessels, is not something you want unless you need to stop a massive bleed. But, when you don’t need to stop a hemorrhage, it’s not often something super to have going on. Vasoconstriction raises blood pressure (which is why vasoconstrictor medications are given to people with low blood pressure) and can cause erectile dysfunction. You know what else causes vasoconstriction? Caffeine. Sigh.
Time for a breather. Here’s a picture of a bunny, because this stuff is pretty heavy. Warning, after the bunny, there are no more cute things.
Abnormal Blood Coagulation
If it’s a medical term and it starts with “abnormal”: uh-oh.
Factor VII is another protein in our body that helps the clotting process. Too little Factor VII = hemophilia. Too much Factor VII = clotting when there shouldn’t be. Moderate hypoglycemic episodes increase this protein in the body.
Neutrophils are white blood cells. When inflammation starts, neutrophils head towards the area of inflammation. Because our body is doing the inflammation dance when we’re having a moderate low, neutrophils show up for the party, too.
Platelet Activation - platelets help to staunch bleeding by clumping and clogging a blood vessel. Great for stopping bleeding, of course, but lousy when the result is thrombosis. We increase platelet activation when we’re low.
We release adrenaline, epinephrine and norepinephrine as our blood sugar sinks into the basement. It’s that “fight or flight” feeling; that “out-of-control and my heart is racing” feeling. It’s our body’s adrenal response to get us to do something.
When we have multiple hypos, we can developed a suppressed sympathoadrenal response - and that’s hypoglycemic unawareness. Clinicians talk about raising a target blood glucose level because a person with diabetes has hypo unawareness to retrain the body to have that adrenal response again.
But your nervous system also factors into play here. Your autonomic nervous system. Your heart is part of this system. A moderate hypo causes your heart to beat faster (“Thud-thud-thud”) and can cause long-term issues with the timing of your heart (arrhythmia). We’re making our hearts work harder.
It’s Not Over When You Think It’s Over
Your blood glucose level comes up and the hypo is over. But what happened to your body is not over. Not by a longshot. This is what I learned at the symposia at ADA’s 75th Scientific Sessions on Hypoglycemia.
And it’s this:
Vascular issues can last up to two days and blood coagulation issues for up to a week.
Every moderate hypoglycemic episode builds up inflammation and coagulation responses in my body. One sucky hypo a week was not uncommon for me, even with a Dexcom.
What Am I Doing Now?
I’m doing everything to prevent a moderate or severe low blood sugar. The research I did shows me that I can change the way I react to my lows and help prevent these “issues” from happening.
My CGM is constantly on my body and I’ve set it to alarm at 80mg/dl so that I’m still in my right mind to look at it and take action if I need to do so. Has this helped?
Instead of alarming at 70, when I often tell myself that I’m invincible and that my blood sugar will go back up on its own (I’ve said this to myself a lot…Yes, I know. False.), I’m catching that low. It also has prevented the response of eating everything in the kitchen because I’m in “fight or flight” (or “stuff your face or pass out”) mode. My stress level is lower and I feel more in control.
And that is what this post is about… giving you the info and giving you the opportunity to help yourself, because while you can’t control having diabetes, you can control how you manage it. And hypos are not so innocent.
No, this post is not about Vanilla Ice, but you can thank (or curse) me later for using his famous lyrics throughout.
“To the extreme I rock a mic like a vandal…”
I talked about it before, but on November 3rd, a monumental event occurred. With the strategic urging of the heads of diaTribe, an unprecedented meeting was scheduled between the FDA and people with diabetes. #DOCAsksFDA was streamed live, so that those in the diabetes community could listen to and watch those representing the diabetes community have an interesting discussion about what patients want the FDA to understand.
I wasn’t the only one who wanted online access to this meeting. About midway through the meeting, the FDA servers crashed. (Hmmm…. the #DOC strikes again?) While those in the room continued sharing the dialog via Twitter, it was frustrating to not hear the conversation as it was happening. And there was no one at the FDA recording this separate from Adobe Connect.
Except…. someone was recording. Thank heavens. diaTribe employees in the audience whipped out their iPhones and video recorded the remaining hour and a half and have put it up on YouTube.
The conversations that transpired must be seen to appreciate the raw emotion our patients showed as they answered questions. Take some time. Stop, watch their collaboration, and listen…
“…We are all in this together.” - Rebecca Killion (type 1 diabetes, 17 years)
Of course, if you don’t have time, diaTribe has done their standard (their standard is exemplary) job of picking out the pearls from this and you can read them here.
“Dance, Go rush the speaker that booms…”
By the way, if you haven’t entered the giveaway that diaTribe is having, dance on over and do so.
diaTribe is continuing the “diaTribe Gets Fit Giveaway” - giving away ten grand prizes: a fitness tracker of the winners’ choice between a Fitbit Flex or Jawbone Up (and cool bonus prizes!). They only do one giveaway like this each year, so seriously, go do it. Takes two seconds…
“Anything less than the best is a felony…”
I’m heading out to join other patients for the DiabetesMine Innovation Summit, happening this Friday. If you’re unfamiliar with what this is, I consider it to be the only place where patients, manufacturers, Pharma, investors, inventors, clinicians, and payers can have real conversations about the future of diabetes innovation. I’m so grateful for DiabetesMine for putting this together each year and that I’ll be attending for the second time as a Patient Voices Scholarship winner. (My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine.)
This is, in all truth, my favorite summit I’ve ever attended. I learned so much last year, and more importantly, left inspired to be more involved with the diabetes community.
This year’s topic is Emerging Models for Improving Life with Diabetes: “Against the backdrop of the Affordable Healthcare Act, which programs have the biggest potential, and how can we address challenges to their success?” And boy, do I have a lot to say as a patient- and a lot to learn as a patient.
“Check out the hook while my DJ revolves it…”
For those of you who have made it this far into the post, let me share my latest story about my hook (a.k.a. my right hand with the finger that continues to paint me as a budget Captain Hook…). I had surgery on October 2nd, felt that something just wasn’t right, and then realized as the swelling from the surgery went down (which takes a while) around the incision site, that something else wasn’t right… I saw a black line in my palm.
One of the sutures wasn’t fully removed when the stitches were pulled out by his nurse a few weeks ago.
It explains why the inflammation wasn’t going away and why scar tissue was developing. I ended up having impromptu hand surgery in his office yesterday, where he pulled out almost a half-inch piece of surgical thread. And then, I got two more stitches to close up that incision. (Fortunately, these are superficial and I’ll take them out myself.)
And I confirmed that, yes, indeed, I do have a PIP flexion contracture and NOT diabetic cheiroarthropathy as he had previously diagnosed. In this case, I hate being right. My options are occupational therapy and a splinting regimen, but it will take time and some injections that are considered to be “white hot pain”.
I feel like I didn’t do enough to push the idea of the PIP flexion contracture at my last appointment and it’s set me back, because I could have done more to alleviate the problem and potentially cured it. (That being said, my surgeon did offer physical therapy and I declined, wanting to see if the swelling was causing the pain.) That’s sometimes the problem with being an ePatient; you know what the possible diagnoses could be, but you may still defer to the surgeon and then disregard treatment choices.
The finger will get better. I will be a better patient. Better. Stronger. Faster. Six Million Dollar Diabetic.
“Quick to the point, to the point, no faking…”
Open enrollment for the Healthcare.gov and some state marketplaces is happening right now in the United States and for the first time ever, we’ve decided to enroll through the marketplace.
John and I reviewed the high deductible plan we had this year and truth? It’s cheaper for us to play for a platinum plan with a low deductible than what we paid this year for premiums and out of pocket. I made some cringeworthy choices for my diabetes (eschewing some prescriptions, medical appointments, and supplies until I met a $4,000 deductible because we didn’t have enough money in our HSA account is something I never thought I would do in my life…)
I, for one, am grateful for the ACA. I know that I am paying through the nose to stay healthy. After I wrote the post about the bare minimum a Type 1 adult could pay for basic healthcare, a comment came in that floored me. Here it is:
Hold on. “I can’t afford it”. These statements need to be qualified and quantified. In some cases this might be true. But with Medicaid for low. no income you get help. For those working, maybe choose the cheapest cell phone plan and most basic cable TV and the lowest possible car payment. Forgo vacations and eating out. You know I gave up these “basic Luxuries” and came up with $4,900 in “savings” applied to my care. The article, like many sensationalizes a terrible burden or cost when taking all things into account is sometimes not there. I acknowledge there are many that cut outgoings to the bone, but too many think it is a right to enjoy their luxuries AND have money for health care for T1D or T2D. - Tony
I don’t think Tony gets what I was trying to say. So, here I go… no faking…
- We have the cheapest cell phone plan. We do not have basic cable… or any cable. (We use HD over air.) We don’t have a car payment, as both cars are paid off. (My car is from 2003 and I’ve sunk over $2k to keep it running this year.) We haven’t taken a “vacation” since before our daughter was born (3 1/2 years). Eating out? We’ve cut out eating out long before you suggested it. Special occasions like a birthday gets a nice dinner out. I cut coupons, shop sales, buy clothes at consignment stores.
- Wait. You mean I can’t have a “luxury” and have money for health care? That having this disease and wanting to be healthy shouldn’t be a right? If you have $4,900 to apply to your care, bully for you. For the rest of us, that $1,591 I quoted was for treatments available 30 years ago and did not take into account the thousands that can be accrued if something goes wrong… like trigger finger surgery. Even with insurance, I am now in debt.
- Sensationalize? No. No. No. If anything, I didn’t sensationalize enough.
(If you would like to comment on his post on my blog, feel free. This, however, if all I will say on his post, because my head and heart hurts thinking about how I’d like to respond.)
And now, you’d think I’d send you off by actually showing you “Ice Ice Baby”, right? Wrong. Here’s Adam Scott, explaining what it all means:
Out of all the Schoolhouse Rock videos, this is my favorite. (I’m Just A Bill and Elbow Room are runners up.)
There is something magical about the number three. And that song (and the cover done by Blind Melon, too.)
But today, three is not a magic number. It’s the number of trigger finger releases I am supposed to have in a few weeks.
I say supposed to have, because like any empowered patient, I’m going to to do my research about having three fingers done on one hand when only one is actively triggering (although my pinky and my middle finger - hey!). I’ll ask around, look up information in medical journals and perhaps even get a second opinion by another hand surgeon. Why, you ask?
My Appointment Was Not What I Expected
The appointment itself was interesting, because if I had met the surgeon a few years ago, it would have been a different conversation. Here’s how it went (and my thoughts as it happened).
My appointment was for 12:10pm. Brought into a room by Jason with a M.A. on his name tag.
::What does M.A. stand for in this office? Master of Arts? I don’t think so.::
“So, why are you being seen today?”
::Does ANYONE read the reams of paperwork they make me fill out? Anyone? Bueller?::
I give him the lowdown.
“How do you know that it’s trigger finger?”
::Again, paperwork. Four previous trigger finger release surgeries.::
“You’ll get an x-ray and then the doctor will be in to see you.”
From the time I saw Jason and got two X-rays on my hand, it was another 40 minutes before I saw the doctor. He breezes in with a guy behind him wheeling a cart with a computer on it. His own personal stenographer for electronic health records.
He knows I have trigger finger. There are no questions. I didn’t get an opening statement in.
Because of my friends, Drs. Sean and Tamara Oser, who present an incredible session at Friends for Life, I know this statistic:
In a well-known study of the survey phase, Beckman and Frankel found that physicians prevented patients from completing an opening statement 77% of the time. Those who interrupted their patients did so in a mean time of 18 seconds.
He beat this statistic to death.
“Hi, I’m Dr. X (not his real name, although that would be neat, right?). So, let’s see your hand.”
He examines it. Palpitates the area where it hurts. I wince. He keeps asking me to open and close it, telling me to make a fist.
::I can’t make a fist, dude. My finger won’t do that anymore. If it did, I wouldn’t be here.::
He pokes at it again, while I explain that I’ve had trigger release done before, but not here and not for this finger.
“O.K., so I’m going to give you a cortisone shot.”
::He didn’t even give me options. Ask me if I’ve ever had a cortisone shot in the FOUR other fingers I’ve had trigger finger. Explain that I could choose: physical therapy, cortisone injections, percutaneous release or open surgery release. Four options. I know which one would work for me, for most Type 1 diabetics, but HE DIDN’T GIVE ME OPTIONS.::
“Dr. X, I’m not doing a cortisone shot. It’s been proven and published that it’s not a successful treatment option for individuals like me with Type 1 diabetes. Surgery is almost always done in these cases following a cortisone shot.”
He looks at me, then turns to the steno guy, who is now looking confused.
“I’ve done the research. I am an e-patient.”
He looks at me again. He says:
“I’ve done over 10,000 release surgeries. Most people with diabetes do end up with surgery.”
The steno guy is wide-eyed. Dr. X nods to me, then tells the silent interloper with the computer:
“We’re going to do surgery.”
He turns back to me, starts palpitating my palm again and asks if there is any pain when he presses here or here.
::Yes and yes.::
“You know that you’re already showing signs of triggering in your pinky and it’s only a matter of time before you’ll have to have the pinky and the middle finger done. So, let’s go ahead and do all three while we’re in there doing the ring finger.”
::I am so over this trigger finger thing. Whatever.::
After this brief conversation, he leaves and I schedule surgery, but not before he popped his head in and told me that I would probably want to schedule it at one surgery center over the other he uses, because the anesthesia company he uses does not accept insurance at the one closest to my house.
::In my next life, I’m coming back as an anesthesiologist.::
If this had been a few years ago, I would have blindly accepted the cortisone shot, then floundered for weeks dealing with super high good sugars and staggering amounts of insulin to bring it down, eventually ending up in his office again, this time to schedule surgery.
I have done a lot of research, talked with my friends in the DOC, and had this done four times already, I didn’t go in blind. I just came out angry.
Angry that I wasn’t offered a choice. Angry that I had to state that I was going to have the option he didn’t initially present to me. And then I am angry because I am not even sure I should have three fingers released when I know only one needs to be done right now.
So, for those of you who have had trigger finger release surgery, has anyone had THREE fingers done at once? What would you do?
And maybe the other question I have is this: Is it wrong to expect doctors to have a conversation with you about options, because right now, I’m as confused as the poor steno guy?
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.
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.