From today’s article by the always-interesting Sarah Avery at the News & Observer:
After several failed attempts to extract the item, Manley was referred to another doctor, who suggested removing the entire left lung. “I said, no, I wouldn’t be doing that,” Manley says.
That’s when he decided to seek a second opinion at Duke University Medical Center.
If you just snapped a quick picture, you wouldn’t see it. Not unless you were looking for the small signs, like my insulin pump. Or my spotted fingertips.
Type 1 diabetes isn’t something you can see on me. It’s not an illness that, at this point in my life, comes with any constant external symptoms. I am fortunate enough to not use a wheelchair or need vision assistance devices. You can’t see my disease, even though it’s something I manage every day.
I seem “normal.” (Stop laughing. Let me use the word normal for the sake of this blog post, at the very least!) I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.
And I am happy.
But my good health is not without great effort.
Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter. Every meal I’ve eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose. And every night has my finger pricked by a lancet before my head hits the pillow.
This isn’t a pity party. Not by a long shot. My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I’m now wearing medical devices 24 hours a day, every single day. And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn’t like the idea of a small child dealing with this disease.
Kids are fun to cure. They’re cute. And their futures seem worth investing in.
What confuses me is how quickly people forget. Type 1 diabetes became a part of my life a long time ago, and I don’t remember even a snippet of “the before.” But even though I’ve lived very well with this disease and kept it from defining me in any way, it’s still here. And it’s still something I deal with every day, regardless of how well or poorly controlled. But just because I’m no longer a little kid with the bright, shining future, am I any less diabetic? Any less deserving of that cure? Just because you can’t see my disease, and because I seem to have it under physical and emotional control, does not mean it’s past the point of deserving a cure.
Here is a vlog post that I did back in February about vlogging during a low blood sugar and how “diabetes can look so normal yet feel so rotten.” It’s a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:
Children with diabetes grow up to be adults with diabetes. And all the while, we’re still ready for progress. And for hope. And for a cure.
Recently a plastic surgeon I know was called out to fix a lacerated ear. It is the domain of plastic surgeons pretty much all over the world. But in my neck of the woods it may be tricky to extricate a plastic surgeon from his warm bed on a cold night. Let me also say that back in those days all registrars of all disciplines earned the same overtime each month. Even opthalmologists and dermatologists and pathologists earned exactly the same overtime as surgeons. They weren’t complaining. We, however, were.
As calls went it was fairly standard for us general surgeons. I had found a moment to empty my bladder which was a nice change, but other than that one reprise there had not been a moment to even realise that I hadn’t eaten all day. At least there hadn’t been any lethal disasters…yet.
Somewhere in the madness the house doctor asked me to evaluate a patient with a lacerated ear. He had had half his ear detached in a bar brawl. It was hanging precariously from what still connected it to the body. Now at this time in that hospital there was a policy that once a patient had been referred by a casualty officer they would not take the patient back. If the referral was erroneous then we would be required to refer further as appropriate. So when I heard my house doctor had accepted the patient I was not impressed.
“You suture his ear.” I told him. Poor guy, he hadn’t studied at our university and therefore wasn’t used to our sink or swim approach to medical training. He freaked. My level of being impressed dropped even more. I’d have to phone the plastic surgeon myself.
The plastic surgeon was not keen. By that I mean he basically said he was not coming out. By the tone of his voice I assumed he was getting a back rub from his significant other under the warm duvet on his bed. Who could blame him. If you’re not in the trenches why would you want to go into them, even for a short while to suture an ear.
“Anyone can suture an ear. you’re there now. I’d have to come in to the hospital. You just do it.” I considered telling him that I’m at the hospital because I have so much bloody work to do and that he is drawing the same overtime that I am and that it is his bloody job and not mine. But I knew that at that stage, even if I walked on water and then turned it into wine he was not going to come out. I hung the phone up. my house doctor looked at me questioningly. He had already told me he couldn’t do it. But he was not from our neck of the woods. I needed a student. One walked past, unsuspectingly.
“You! have you ever sutured an ear back on?”
“No.”
“When I ask this same question tomorrow, you will answer yes. Come with me.”
M and M was never fun. Sometimes I would walk out feeling I’d just escaped by the skin of my teeth. Sometimes I would feel like my teeth had had too close a shave. But once…just once, it could have been worse.
It was a pretty standard call. It was very busy. In the early evening I was called to casualties for a patient with severe abdominal pain. When I examined him it was clear there was something seriously wrong inside. He had a classical acute abdomen with board like rigidity. He clearly had a perforated peptic ulcer and needed surgery. I set my house doctor to work to get him admitted and on the list. Meanwhile I went back to theater to work through the number of equally critical patients already on the list.
Things then settled down into a rhythm. I was in theater with a student operating the cases one after the other while the house doctor separated the corn from the chaff in casualties. Finally it was time to do the laparotomy for the guy with the acute abdomen. I needed to shoot through casualties before we started so I decided to swing past the ward and make sure the guy was still ok.
The ward was dark. Pretty much everyone was asleep. Without wanting to wake the other patients I turned on the small bedside light of my patient. Even in that dim light I could see a bit of oral thrush. I was surprised. I was thinking to myself how the hell did I miss that in casualties. I felt his abdomen. It was no longer quite so tender. I turned to the student.
“See why it is important to make your decision before giving opioids?” I said with an air of authority. “Now he is actually not so tender but he definitely had an acute abdomen. We must go ahead with the operation.”
I quickly felt for lymph nodes. He had them everywhere. Once again I was quietly thinking that my clinical skills must be slipping because that I also didn’t pick up in casualties. I kept this new information to myself. Imagine the shock to the student if he realised I was not all knowing. i just didn’t want to be responsible for that level of devastation in his life. But I started considering other causes for his condition. It was clear he had AIDS and TB abdomen started looking like a possibility.
While we were still with the patient, the theater personnel arrived to take him to theater. I told them to get things going so long while I quickly shot down to casualties to evaluate a patient the house doctor was unsure about. And off I went at a brisk walk.
I walked into casualties. The house doctor led me to the patient in question, but as we approached his bed my blood went cold. In the exact bed where my acute abdomen had been lying about four hours previously was my acute abdomen still lying there!! I turned and ran back to theater. Fortunately I was in time.
Later I found out what had happened. Once we had admitted the acute abdomen, the porter had come in to take him to the ward. One of the patients lying in casualties was a guy that had just come in. His HIV had wreaked havoc in his life causing a number of unpleasant things, including AIDS dementia syndrome. The exchange went something like this;
“Timothy Mokoena? Is there a Timothy Mokoena here?” the porter called out.
“Here I am, but it’s not Mokoena. It’s Magagula.”
“Ok, Timothy Magagula, I’m going to take you to the ward.”
“Ok, but it’s not Timothy. It’s Michael.”
“Ok, MichaelMagagula. Let’s go.”
And thus MichaelMagagula, the AIDS dementia patient (not to be confused with Timothy Mokoena, the acute abdomen patient), thinking he had just jumped the queue to see a doctor was carted off to the ward and prepared for theater. He even signed for a laparotomy without even having seen a doctor.
In the end it all turned out well. Timothy got his operation and the hole in his stomach was patched. Michael was referred appropriately to the physicians. But I couldn’t help wondering how this could have looked in the next M and M meeting.
“Well, prof, the patient died on the table basically because I operated him unnecessarily.”
“And how is the other patient? The one you should have operated?”
“Well, he died too because I didn’t operate him.”
200% mortality for one operation. Not easy to achieve.
Taking a cue from Rachel and Cherise, I wanted to post my diabetes “bad habits.” (Unfortunately, it didn’t take long to come up with six.) But thankfully, after months and months of extreme tweaking, my bad habits aren’t nearly as bad as they used to be.
1. Bolus-Stacking. (See also: rage bolusing) I have a very, very bad habit of stacking boluses when my blood sugar is high. You know … test and see that 212 mg/dl, take two units to correct it back to 100 … test again 45 minutes later to see 245 mg/dl staring back at you … freak out and take another unit for good measure … test one more time an hour later to see no real change … lace in two more units because you’re angry and frustrated and sick of the high … only to crash five hours later with a 45 mg/dl with your face mushed into a can of Pillsbury frosting. Not that I’ve done that. But if I were to do that, it might play out just like that.
2. Carb Winging It. Until recently, I’ve been an estimator. A SWAGger (scientific wild-ass guesser). Someone who kind of wings the whole carb-counting thing and hopes that there were only about 15 grapes in that snack bag or that the apple was really “small” instead of “medium.” With the little weeny doses of insulin I take, counting carbs with precision is crucial to making sure my numbers stay stable, so when I’m guessing as to the carb count, the blood sugar results go all over the place.
3. Shooting with a Mouthful. This is a bad habit pointing out by my endocrinologist a few months ago, and one that was wicked hard to break. And I have no idea how I ended up in this terrible habit to begin with, but it’s not good. I had a terrible tendency to start eating, then decide to bolus. Even if the carbs were counted perfectly and the insulin dose went in without issue, I wasn’t giving the insulin any time to act before introducing the carbs. Thus, making my numbers go berserk after meals. No more shooting while I’m eating. Now I need to shoot up before eating. Makes a big difference.
4. Self-Consious During Workouts. Another bad habit. When I go to the gym, I used to leave my insulin pump at home and then reconnect when I returned. It worked out to keep me from going low during workouts, yes, but it was also because I didn’t like having the device attached to me while I was wearing form-fitting workout clothes. Stupid Kerri. Sure, I was avoiding the lows, but I was also ending up close to 180 mg/dl by the end of my workout. With pre-pregnancy goals of 150 or lower, this is unacceptable. So I have to suck it up and wear the pump while I exercise and even sometimes go easier during a workout to avoid lows, instead of sacrificing blood sugar control for an extra mile on the treadmill.
5. Log Lagging. I have a good habit of starting logbooks, but a terrible time keeping up with them. This has been a hard habit to break (habit to break), but I’m close to turning it around. Logbooks are my diets – I am excellent at the outset, but then I fall apart. Thankfully, I’ve got a team at Joslin and a husband at home who are helping keep me accountable, and it’s making a world of difference.
6. Blame Game. And a sixth (but certainly not the last) bad diabetes habit that I have is my role in the blame game. I put a lot of pressure on myself to get things “right” and when the diabetes outcome isn’t what I’m hoping for, I tend to blame myself. I have to constantly remind myself that strong efforts and a decent attitude go a long way in this marathon, and I can’t beat myself up for every low or high that crops up randomly. Diabetes isn’t fair, and it isn’t easy, and it sure as hell isn’t my fault, so I just need to roll with the punches as gracefully as I can.
What are your diabetes bad habits? Or maybe it’s better to ask – what are your good diabetes habits? I’m going to have to concoct another “good” list soon – they’re way more fun. 🙂
*This blog post was originally published at Six Until Me.*
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From today’s article by the always-interesting Sarah Avery at the News & Observer:
Taking a cue from 
