Diabetic Neuropathy: Charcot Infested Waters

Welcome back! In this post, I'm going to talk about my favorite complication of a complication of diabetes. This one is so special that it gets a name that doesn't include the word "diabetic." Diabetic retinopathy? Diabetic neuropathy? Diabetic nephropathy? Amateurs compared to CHARCOT FOOT! "Charcot" is pronounced "shark-oh." Hence my punny title. Delving a wee bit deeper into medical technobabble, it's also called Charcot arthropathy. 

This post is going to be a real treat, as you'll finally get to see what truly lurks inside me, your charming, humorous, and handsome author.

Charcot foot is a condition that's considered an advanced form of diabetic neuropathy. It's also another one of those diabetes complications that have theories about its cause, but no solid facts. (It's why doctors "practice medicine." When they finally get it all figured out, they'll probably stop practicing and go pro.) The way I describe it is thus: Because the brain has stopped talking to the soft tissues in your extremities, they stop doing their jobs, resulting in the bones of your foot starting to drift, suffering microfractures and dislocations. 

Within two years of my diagnosis of Charcot foot, the arches of my right foot had completely collapsed, and my left foot was turning into a deformed mess that wouldn't support my weight without significant discomfort. 

I endured Charcot reconstructive surgery on my left foot TWICE! The first time, four screws were put through the bones of my ankle to help them fuse together. Fused bones don't drift or experience those miniscule fractures... or so we could hope. This surgery took four hours. Basically, the doctor had to open up the entire ankle to see what he was doing, and then drill those screws into place. Post-op was three solid months of absolutely ZERO weight-bearing on my left foot, and another three months of only partial weight-bearing.

Oh! I forgot something about the surgery! Not sure how I managed to forget this aspect, seeing as how it was so impactful, but IT FREAKIN' HURT! Medical professionals like to ask, "On a scale of 1 to 10, how would you rate your pain?" When asked during my post-op hospital stay, I wanted to scream back, "IT'S A THOUSAND! DON'T BRING MORPHINE! BRING CYANIDE!" 

My doctor was impressed with how well I healed afterward, and the bones of my ankle were fusing nicely... until he noticed that the metacarpals - the long bones of the foot - in my left foot were starting to drift outward. He wanted to go back in, remove the screws, and install three long bolts in an effort to get my entire foot to fuse.

This, my friends, is where I uphold my promise from earlier. I present to you... the real me:

Profile of my left foot post-op.

Top down, angled view post-op.

The nurse said something during a follow-up visit with the surgeon that I found a bit unnerving. "It's fascinating being able to see everything in a foot by using just a bright light." The way you can kind of see the bones of your fingers with a flashlight, she could see inside my entire foot.

My adventures with my left foot would continue, but that's yet another one of my stories that will have to wait. For now, we'll move on to my right foot. I lucked out. My surgeon had initially wanted to reconstruct it, too, but the bones eventually fused on their own and the foot was stable. I'll even show you!

This is obviously not my

foot. I simply wanted

you to see what a normal

foot should look like.

The mess that is my

right foot. You don't even

need to be a doctor to

see the difference!

My right foot becoming deformed did two things. It caused my Achilles tendon to constrict, requiring surgery to lengthen it. While not making my right foot completely mobile, it did double my range of motion. Charcot foot also altered my shoe size from 10.5 down to 7.5.

More podiatric adventures await, dear reader! Thrills! Chills! Spills! No, really. I once took a messy fall when I kinda sorta forgot I was disabled. But those tales are for the future! For now, I leave you with the beautiful, scantily clad young woman!

Hmmm... This one seems to be wearing a mirror.

Diabetic Neuropathy: These SFX Are Not CGI

Wow. You came back after that last post?! I'm a little surprised, what with its "fun" subject matter. Permanent nerve damage probably doesn't seem as scary as going blind because it starts off with pain, and humans start hurting themselves almost immediately in life. Trust me. At some point during your toddlerhood, you took a header that had you wailing. Because we deal with pain from early on, maybe you think you'll be able to cope with the pain of diabetic neuropathy. And who knows? Maybe you can.

There are other things, however, that you'll eventually be unable to deal with due to their increasing severity. These things happen slowly, so you don't notice them until they've become a problem... and they're just going to get worse.

"Ummm..., Rob? You said this blog would infuse humor into all of the bad news. You're not being particularly funny today."

Okay, I'll tell a joke.

A chicken and an egg are lying in bed, with the former smoking a cigarette. The chicken then looks over at the egg and says, "Well, I guess we answered that question."

If you don't get it, you're too young to have it explained.

Now back to our regularly scheduled doom, gloom, and misery.

On the off chance you've forgotten the function of the nervous system, it's the lines of communication that connect everything in the body to the brain. Some of the things the brain does don't require thought. Those are the autonomic functions I mentioned last post. Your heart beating, breathing, etc. Then there are the things you do consciously. Writing, playing video games, calling your arms dealer to demand why the latest shipment of guns is late.

Oh... Is that last one just me? My bad.

Now try to imagine your body performing autonomic and conscious functions together. When you think to reach for the TV remote, you don't activate each muscle individually. The brain automatically handles all of the fiddly little details that allow you to perform your chosen task.

Because diabetic neuropathy wreaks havoc on the nervous system, however, some of those neurological messages won't reach their final destination as swiftly as they should. And sometimes, as a bonus, they don't reach that destination at all. Fear not! Medical science has devised a way of testing for this! Ready for this mouthful? It's called a electromyography, also known by the much shorter "EMG." It measures muscle response to electrical stimulation of the muscle. Like almost everything else pertaining to diabetes, it involves a needle. The technician gets the needle into the target muscle, sends a little electrical pulse through it, and the equipment measures response time... if there IS a response. One technician couldn't get a response out of me, so she called the doctor in and he poked around with the needle until he simply gave up.

Good times. Good times.

If you're not reading into this, I'm leading you to the conclusion that your muscles will start to suffer from atrophication. Muscles atrophy - decrease in size and waste away - from inactivity. You might be able to prolong the life of various muscles with a moderate exercise routine, but once you've started to lose the muscle mass, it's usually all down hill from there.

Loss of muscle mass in your feet can lead to falls that result in injury. Loss of muscle mass in your hands can lead to a weakened grip and cause a loss of motor control - just a fancy way of saying you'd lose control over hand movements.

Now I tried to look for pictures to show you, but I couldn't adjust my search parameters well enough to find what I wanted. So after a bit of struggling - okay, A LOT of struggling - I took pictures of both of my hands. Because of the angle at which I had to hold my hands, they look a lot more wrinkly than they actually are. Without further ado, my hands:

Left hand.

Right hand.

I am, believe it or not, trying to do something very specific in both pictures. Discounting my thumbs, I'm struggling to bring my fingers together. They should all be tight against one another, but I can't do that unless I curve my fingers. It's that loss of motor control I mentioned. In some circles, this is known as diabetic hand syndrome. 

Now for another hand pic. Try to maintain control as I bring back my sexy right hand.

For your enjoyment,

I circled the problem area.

See that area I circled? There should be a thick cluster of muscles there. After a mere 10 years of diabetic neuropathy, medical professionals could see the beginning of muscle atrophy. With over 25 years between me and my diabetic neuropathy diagnosis, laymen can see how that area where muscle should exist is now little more than webbing.

Heavy stuff, right? Let's lighten up the mood with another joke before I go on.

A guy walks into a psychiatrist's office with a duck on his head. The psychiatrist asks, "Can I help you?" And the duck says, "Yeah, get this guy off my butt."

Next on our exciting list of things diabetic neuropathy can do to you is diabetic gastroparesis. I mentioned last post how digesting food is one of the autonomic functions of the body. Diabetic neuropathy can mess that up, leading to such exciting symptoms as nausea, abdominal bloating, feeling full after only a few bites of food, acid reflux, and vomiting undigested food you ate hours ago.

I've experienced symptoms of gastroparesis. I once had such bad acid reflux that I thought I was having a heart attack. Because I was brought to the ER with a complaint of chest pain, they did an entire cardiac workup on me without ever considering that my problem might have been digestive. The ER doctor shrugged after all tests came back negative and sent me home. Acid reflux never entered his mind.

Oh, I have another good one! This involves another autonomic function. It's called orthostasis. When you stand up, the blood vessels in your legs constrict to stop your blood from rushing into your legs. Diabetic neuropathy can lead to orthostatic hypotension, which is a significant delay in constriction of those lower blood vessels. As a result, you become lightheaded and dizzy. Oh, your body eventually catches up and regulates your blood pressure appropriately, but by then it's a question of whether or not you've collapsed from the improper amount of blood in your head.

Much of what I've discussed thus far probably isn't relatable. Muscle weakness? An inability to digest food? Bah! Unimportant hogwash!

Fine. I'll give you a reason to be afraid. This is the part where I go into full Adult Mode, so I'll be straying from what I've tried to do thus far, and that's to keep this blog family friendly.

Erectile dysfunction. Men know it and fear it. Women know it and smirk. (Laugh while you can, ladies. I'll get to you shortly.) Several of my posts have mentioned microvascular damage. No one really thinks about it until it's pointed out, but men becoming erect is a result of increased blood flow to the groin. Thanks to damaged nerves to go along with the vascular issues, your one-eyed trouser snake doesn't even know when it's time to wake up.

"Silly Rob. They got pills for that. I'm not worried." While I nod sagaciously at your well-made argument, let me also point out that many of those pills have side effects that distract from the fun you're hoping to have. The increased blood flow provided by Viagra can make you feel feverish. Cialis can cause severe muscle aches. These are only a couple of side effects, (aside from the four-hour time limit before you should contact a healthcare professional).

To the feminine gigglers I hear on the sidelines, you also get to experience sexual dysfunction. Men will forever be jealous of a woman's capacity for multiple orgasms without the required refractory period. (That's our time to "reload," gentlemen.) Well, ladies, how would you feel if you went from the ability to have many orgasms to... oh, I dunno... ZERO.

Obviously, I can't speak from experience about that last one. I just know that it exists. Truthfully, I don't know if your team also has a pill to address the issue, so talk to your doctor if you want to know more.

There's one other aspect of diabetic neuropathy I want to discuss, but I'm going to save that for another post because it's HUGE! The kind of thing that's impossible to ignore. You'll LOVE it! 😉

I've shared enough pictures this post, so I'll end with one final joke to help you decompress.

A duck and an egg are lying in bed, with the former smoking a cigarette. The duck then looks around with rising panic and says, "I think I'm in the wrong joke!"

Diabetic Neuropathy: YOU ARE NOT PREPARED!

For those unfamiliar with the line, "YOU ARE NOT PREPARED!", you should watch the trailer for World of Warcraft: Burning Crusade. The way Illidan shouts the line at the end is exactly how I'd say it when warning diabetics about diabetic neuropathy. There's no way I can explain this complication of diabetes and discuss my experiences with it in one post. This condition, which is permanent nerve damage, has been the bane of my existence for almost 25 years, and can be YOURS for the low, low price of neglecting your diabetes!

Do you know what causes diabetic neuropathy? "You just said it, Rob. Neglecting my diabetes." Yeah, okay. I get that. But do you know its specific pathogenesis? "It's patho-hoozi-whatsis?" The specific physiological changes that cause disease. For example, when I discussed diabetic retinopathy - diabetic eye disease - I talked about vascular damage and neovascularization. So I'll ask again: Do you know what causes diabetic neuropathy? "No, Rob. I do not. But you're going to tell us, right?"

Ummm... No, I'm not. Because the reality is that no one can. There are a great many working theories about what causes it, but no one really KNOWS. Here's one of them. 

Take notes. There'll be a test later.

Through the scientific processes of voodoo and mysticism, the body converts glucose (regular old sugar) into fructose (sugar from fruits), which it then converts into sorbitol (sugar alcohol). Why does the body do all of that? Well, I'll tell you... 

...that I'm STILL not a doctor, so I'm explaining this the best a layman can!

Somehow, some way, the sorbitol winds up in the nervous system. The sorbitol and the neurochemicals that make your nervous system function are just about the same size, so only one can squeeze through the neuropathways. Think "Three Stooges Syndrome" from The Simpsons. When the proper chemicals go through, all is well. When sorbitol goes through, it damages the nerves.

I guess I should toss the other theories at you while I'm here. Telling you to research it on your own might be pushing it. I mean, somehow you wound up here, reading this blog, and that was a miracle unto itself. Left to your own devices, you might decide neuropathy is caused by Bill Gates and 5G network towers.

Before you jump off that ideological bridge, diabetic neuropathy has been around a lot longer than Bill Gates and 5G.

Okay, the next theory is the typical microvascular disease. High blood sugars alter the shape of the smallest blood vessels, causing them to narrow. Inadequate blood flow starves the nerves of oxygen. (To starve a body part of oxygen is medically known as hypoxia.) Oxygen-deprived nerves break down and never properly recover because the blood vessels feeding it oxygen are permanently damaged.

The last theory I have to share is very similar. High blood sugars alter the structure of the nerves themselves, causing them to malfunction.

"Hang on, Rob. Theories two and three are the same thing, aren't they?" Yes and no. Theory two involves sugar damaging the blood vessels. Theory three involves sugar damaging the nerves directly. The problem is that science has yet to figure out a way to see these events as they're happening. By the time researchers are able to examine ruined blood vessels and nerves, it's after the fact.

Try to imagine a house that's been burned to the ground. The fire marshal says that the fire started in the garage, where there was the following: a natural gas leak, a stove turned all the way up with a pan of oil on it, and a faulty electrical outlet. So what started the fire? Did a spark from the outlet ignite the natural gas? Did the oil in the pan get hot enough to combust? Did that outlet release a spark inside the walls, which in turn started burning? Here's a brain twister: What if all three happened simultaneously?

It's very similar to diabetic neuropathy. Scientists know it exists, they just don't know what "started the fire."

"Ummm... Rob? Why was there a stove in the garage?" Really? That was your takeaway from that example? 🤨

This is the part where I rail against the way diabetics are taught about its complications. It's always the same simplistic warning: "You could lose a foot." The problem is that they never explain HOW it can happen. Well, dear reader, you'll be unhappy to know that I'm going to tell you.

It starts with pain. Diabetic neuropathy provides two exciting types. One is a burning sensation in the skin. The other is what's been described as a sudden sharp electric pain. The best part is that you'll experience both, sometimes simultaneously. Now you might be thinking, That's not so bad. I've had little burns and sharp pains before. I'll live. Oh, no doubt that you'll live. Except that these pains are your nerves screaming at you that they're not functioning properly. And here's some bonuses... The burning sensation can be so bad that silk touching your skin could cause you extreme pain. That sharp electric pain...? Yeah, I had one of those last for a week; just one specific spot feeling like someone has jammed a sewing needle into me.

By the way, for the sharp pains, I once referred to them as "pain seizures" and a pain specialist REALLY liked the phrase. And one of the reasons he probably liked it so much is because diabetic neuropathy is often treated with anti-seizure medications. I have a story about that one, but it'll have to wait. Let's focus on one thing at a time.

So there's pain. It tends to start in the extremities. For a majority of people, that means the feet and lower legs. Once neuropathy has advanced enough, you'll start experiencing numbness the the affected areas. That's not good news. It means the nerve endings have died. You could smash your foot into the leg of a table and the only way you'd know is that the impact registered with nerves that are still active deeper inside you.

This it where the loss of a foot can happen. Let's say you DO smash your foot into something and the skin gets broken. You have no idea how bad the damage is until later, when you decide to take off your socks. Surprise! The sock is soaked in blood! As you peel it off, you feel nothing as the scab, still clinging to the sock, gets ripped away. Around the now-freshly bleeding would is skin that's an angry red and warm to the touch. Congratulations. It's infected.

If you're one of those diabetics who hates doctors and think you can treat such a wound on their own, you might well be on the path to amputation. Cleaning the wound and using topical antibiotics probably aren't enough. The infection can go deep! Deep into other tissues, like muscles, bones, and tendons. That's when you'll feel it, when it reaches those still-functioning nerves. Such serious infections could lead to septicemia - blood poisoning - and gangrene - tissue death. It's at this point that amputation becomes a requirement because a part of your body has already died! There's no saving it.

I think it's time to bring this post to a close. I still have a lot more to say about diabetic neuropathy, but I've been so serious and, if I'm honest, angry, for a while. I'm angry because I know the end stages of diabetic neuropathy can be avoided, but almost no one listens. "Experience is the best teacher." Not in this case. By the time you're experiencing an amputation, you've got an entirely new set of lessons to learn... like how reliant you were on having two feet until you lost one.

Okay, let's decompress. Let's all relax and look at the beautiful... No, wait. Every time I promise to show you the woman, something else appears. So this time I'll promise something diabetes-related and maybe we'll get lucky.

Diabetes Fight Club.

Perfect. And with kids, no less!

Never was the cry of "phrasing!" more appropriate.

DKA: It Wasn't My Fault!

I can officially count THREE times when I lost control of my diabetes and it wasn't anything that I did to cause it. One story is boring. The second is wall-to-wall stupid. The third is a bit amusing. 

First Story

This one's short. I was 24 and wound up in DKA because. That's it. My answer is officially, "Because." When my physician asked me what happened, I told him that I honestly had no explanation whatsoever. We collectively shrugged our shoulders and hoped it would never happen again.

Second Story

Well, it did. I was 38. By that time, I was using "The Poor Man's Insulin Pump." That means I was taking a dose of insulin for each meal. I should have been checking my glucose before each meal, but I wasn't mentally there yet. To my credit, I was at least taking enough of an averaged dose to cover the food I ingested.

I was going to be out and about in the world to get a new pair of glasses, so I packed up some alcohol swabs and my insulin, and then rode on a couple of buses for two hours. When I reached my destination - an establishment that promised glasses in an hour - I had my eye exam, then walked the half-mile to the mall.

It was only after I'd eaten some lunch that I remembered to take my insulin. Hey, it happens. And I've heard people ask with shocked incredulousness, "How do you forget to take your insulin?!?" Their assumption is that something I do regularly would be impossible to forget. I counter with a question of my own: "Haven't you ever rushed out of the house and forgotten to brush your teeth?" When they try to point out that the insulin scenario is more dangerous, I offer the counterpoint that they're both daily rituals that can be overlooked when we're preoccupied.

Were you paying attention when I listed the supplies I brought with me? Alcohol swabs and my insulin. NO SYRINGES! 

Well, no problem, right? I would just go pick up my glasses and hop on the next bus heading home... except that I'd treated myself to the damned orange chicken at Panda Express for lunch.

I'll go into detail about how I take my insulin doses one of these days, but back then, because I wasn't actively calculating my dose per meal, I would be taking just enough to cover a meal that might be a little... sweeter than usual. And orange chicken definitely qualified as "sweeter." Additionally, there was no 24-hour insulin covering me on those off-hours back then.

By the time I reached the optometrist, I could feel my glucose levels rising. I was going to be in trouble if I didn't take some insulin soon. But I still had hours to ride two different buses to get home, so I got my new glasses and skedaddled.

With about 20 minutes before the bus arrived, I walked across the street to a sports bar for a drink. No, not a drink-drink. Just a drink. I was starting to experience the early signs of polydipsia, excessive thirst, so I ordered the largest Diet Coke they had to go. When it was served, I took a HUGE gulp of it and thought, Ummm... that... That didn't taste right. I asked the bartender if he'd given me a Diet Coke, and he replied, "No, that was regular Coke."

Yet another moment of inattentiveness helped that day go from bad to worse. If he'd given me the drink as I'd ordered it the first time, maybe I would have avoided the hospital. Maybe. Alas, as I boarded the first bus, I knew that was impossible.

Reaching my final stop, I still had half a mile to walk to get back to where I was living. While not the most strenuous activity, being active without any insulin to correct my metabolism was only helping all of the building poison do more damage to me. By the time I walked through the front door, I could barely stand. My housemates took one look at me and asked if I was okay. All I could mutter was, "Hospital." Why I didn't say, "Ambulance," is a mystery. One of them drove me to the hospital, where I finally vomited for all of the nice doctors and nurses, thereby proving to them that I was officially in DKA.

That's when I learned a new thing. It had been 14 years since I was last in DKA, so I didn't know that an insulin IV drip now meant being put in the ICU. Why? Because insulin in the veins as opposed to subcutaneous, (just beneath the skin), works at least 100% more potently. THIS IS NOT AN ENDORSEMENT TO TRY THIS AT HOME!!! IT'S EXTREMELY DANGEROUS!!! There's a reason why they administer this treatment in an ICU, where you can be continuously monitored by nurses. If for whatever reason you rapidly swing from high to low blood sugar, they have the knowledge and tools to counteract it... especially if you wind up losing consciousness. I really can't be any clearer. DON'T ADMINISTER INSULIN INTRAVENOUSLY AT HOME!!! 

When I could finally think straight, I explained how I wound up in DKA and we could both see how this case was a kind of comedy of errors.

And speaking of comedy...

Third Story

When I was 16, I started developing post-auricular inclusion cysts. Think of them as mountainous mutant pimples that never come to a head, and keep growing until they get so soft that they explode. Well, kind of. It's not like I'd be walking around school when they'd go off like volcanos. They'd usually burst if I rolled over onto them while sleeping. I'd wake with a small, bloody mess to clean up, and then life would go on.

Except when one of them decided to become extremely infected. Very red. Very tender. And since I haven't mentioned it previously, diabetes and infections are like a mix of steak-flavoring and Jell-O!

Okay, let's pause a moment and learn a thing or two, shall we? The body is chock full of autonomic functions. These are things that don't require conscious thought. Breathing. Blinking. Digesting. You get the idea. When we experience stress, we naturally go into fight or flight mode, even if it's a situation that requires neither fight nor flight. Case in point: pain. Let's imagine you suddenly burn yourself. Reflexes - another autonomic function - have you pull away from the heat source immediately, while naturally produced steroids are pumped into your bloodstream. Those steroids are packed to bursting with everything you need to fight or flee. This includes lots of sugar to energize you.

I'm only using pain as an example. Any form of stress can release those steroids. And in the case of my cyst, the stressor was infection. My body needed energy to fight the infection, so it fed me naturally occurring chemicals that I can't process without insulin! Yeesh! You'd think my body would've learned by that point!

The infection was bad enough that I lost complete control of my diabetes without putting any effort into it. I took my insulin, followed my diet, and still wound up hospitalized.

From the time I was brought to the ER to day seven of my hospitalization, I told everyone that needed to know about the giant, painful cyst behind my right ear. No one - and I mean NO ONE - was paying attention to that complaint. They simply chalked up my visit to the usual Rob antics, like not taking insulin and eating garbage.

In the background of this visit, my endocrinologist went on vacation, leaving a different doctor in charge... and then he also went on vacation, leaving a resident in charge of my care. Residency is an important part of a doctor's training, where they learn to fine-tune their considerable education. Alas, the resident I was left with wasn't the sharpest tool on the tree. (Yeah, I mixed metaphors. What are you gonna do about it?)

Seven days of being monitored and my glucose levels continued to fluctuate between 200 and 300. This was not how I usually responded to treatment. By day seven, they were usually ready to send me home. And because they couldn't wrangle my sugars, I earned a visit from the arrogant turd of a doctor left to care for me. He walked into my room, stood intimidatingly at the end of my bed, and demanded to know how I was cheating on my diet. There was no alternative in his mind. I had to be sneaking in some kind of candy or other junk food to maintain a consistently high blood sugar.

I was actually insulted. I mean, yes, I absolutely cheated on my diet egregiously, but never when I was in the hospital. And this doctor being so monumentally cocksure was offensive.

So, of course, I confessed. "The only extra thing I've had is soft pretzels with mustard." Plenty of extra carbs to raise the blood sugar there, right?

Dr. Know-It-All had a pen and notepad out in the blink of an eye. Now he wanted details. Who was bringing me... soft pretzels with mustard, was it? Yeah! When were they bringing it to me? How were they getting past the nurses station with extra food for me? He would have those answers immediately or I'd be confined to my room!

That's when I held up the book I was reading: Soft Pretzels with Mustard by comedian David Brenner.

He stared incredulously at me, getting red with rage. He was so mad that he couldn't find the words to tell me off. He simply stomped his way out of the room.

A few minutes later, a smiling nurse came in. She obviously found my cheekiness amusing. Thinking on it now, it's entirely possible that that intern's arrogance was something the nurses had to deal with daily, so him getting burned by some 16-year-old punk was exactly what she thought he deserved. This time, instead of instantly being accused, she ASKED if I was cheating.

For the umpteenth time, I explained about the incredibly large and painful cyst behind my ear. And for the first time during that hospital visit, someone looked at it. The cyst was warm, red, and so soft that it might well have popped that very night. But a surgeon was called up. He numbed the site, drained the cyst, and prescribed antibiotics. And wouldn't you know it? My blood sugars came under control two days later!

The cysts became an adventure all on their own, resulting in four different surgical procedures. But those aren't diabetes related, so you don't get to hear about them unless you ask nicely. 😛

Another blog post completed. I'm gonna try again. I know it seems impossible to confuse pictures so easily, but mine is a strange existence that defies explanation. And now... the beautiful, scantily clad young woman!

Oh, come on! That's just cruel!

DKA Revisited - This Time It's Personal

Get comfortable, tiny audience, as Rob, the World's Least Well-Known Diabetic spins his very personal tale of psychological woe and chronic illness. Perhaps a favorite alcoholic beverage might help... although if you're a diabetic, I really don't recommend it. Diabetes and booze go together about as well as a peanut butter and mustard sandwich.

I was taught to hate my diabetes from the start. Because I was around the incubator more than my father, everything pertaining to taking care of myself was conveyed by way of screaming. I couldn't get a urine sample going before a meal? I got screamed at. I was too scared to inject my own insulin? I got screamed at. Commenting that the orange juice she bought to treat hypoglycemia tasted bad because it was in weird metal cans? Wanna guess? That's right! I got screamed at!

On that last one... We usually had an entire carton of orange juice in the fridge, but I was required to use the cans because they were exactly 6 fluid oz. (About 29.5 ml. for anyone reading from across the pond.) From some unknown source, the incubator thought that was the limit on how much orange juice should be used to treat low blood sugar. When I asked if she could at least buy apple juice instead... Do I really need to write it at this point?

At age eight, I was sent to a sleepaway camp for diabetics. (I won't name them to avoid libel.) The day was structured with periods called "more actives" and "less actives." The former meant some kind of sports activity. The latter meant doing something relaxing. Urine tests, insulin doses, and meals were neatly mixed into the schedule.

What follows is only one example of several incidents that I experienced.

The morning went like this: Wake up --> morning urine test --> insulin --> breakfast --> less active (usually policing our cabin) --> more active... which was tennis in this specific instance. I didn't know how to play tennis. I didn't want to know how to play tennis. Thus, I refused to play tennis. Instead of suggesting some other activity to get the blood moving, I got screamed at. So it was like I hadn't left home at all... except that they added an extra cruel twist. Because I refused to be active, I was denied lunch.

After making it crystal clear that I never wanted to go back to that camp for the remainder of my life, I was sent back the next summer.

It was on my second visit to that "diabetic penitentiary" that I learned to perform my own injections. It was "spare tire day," meaning we were to inject our stomachs. The nurse handed me my syringe, pointed across the infirmary, and said, "I have to go help that kid. Good luck." And she walked away.

After wrestling with the very idea of giving myself an injection at all, I finally asked if the nurse would allow me take it in my leg. With her approval, I then sat there and stared at the syringe. It wasn’t a syringe at all to my nine-year-old eyes. In my head, the tiny needle was a Scottish claymore, five feet in length and honed to the sharpness of a baseball bat. They wanted me to jab that vicious blade into my tender young flesh?!? They had to be insane!

There was a radio playing in the background. I swabbed the injection site with alcohol and sat with the syringe paused over my leg. I was so afraid that I felt paralyzed with fear. Thankfully, instinct took over. I started bouncing my hand to the beat of a familiar tune on the radio. One-two-three-BAM! The needle sank into my leg and I depressed the plunger... a little too quickly, causing me to feel the insulin going in, which was... icky.

But it was done. Achievement unlocked: Shots, shots, shots, shots-shots! (No, I will not link the song. This is supposed to be a family friendly blog. 😉 ) I would use that rhythm method of injecting myself for years to come.

Things were different when I was 10. I was sent all the way up to Massachusetts to spend time at Camp Joslin. (Remember Elliot P. Joslin? He was the doctor who thought diabetes was visually appealing... the wacko.) At this camp, they taught diabetics to live WITH diabetes, which would have been an excellent lesson for me... had I not spent 2.75 years learning to hate diabetes with every fiber of my being.

I could fill several posts with all of the abuse I endured at home from the incubator and how my father wasn't around enough to defend me and my brothers from her, but it all boils down to this: anywhere else was better than the house I grew up in.

A couple of months before my 13th birthday, I got extremely sick. It was all of the symptoms of diabetic ketoacidosis, but I was hospitalized under the diagnosis of a severe stomach virus. Two weeks later, I apparently caught it again. And as the summer moved on, I got it again... and again... and again... For the record, as far as I know, there's no such thing as a chronic stomach virus. Chronic infections? Yes. Chronic diseases? Yes. Chronic viruses? Nope. Even herpes, which IS viral, takes some time off every now and again.

Hospitalizations guaranteed me plenty of positive attention from someone – anyone! Initially, I would be pleased when my parents would come to visit me, but that novelty became worn out in short order. The incubator would come into the room, take the television remote from me, flip to her soap operas, sit and watch while knitting. She would say very little to me. When her shows were over, she would pack up and leave with a minimal goodbye. My father would rarely show up at all. He was too busy or too tired to make the trip to the hospital. The rest of my family didn’t live close enough to come to see me. I was a teenager, so most of my friends didn’t drive yet.

After a while, no one would come to visit at all. I was left alone.

Well, not quite. I would take comfort in the company of the hospital staff. I would also go from room to room, visiting other patients and their visitors. The hospital is where I went to socialize.

Think about that for a moment. I would induce DKA so I could get away from my unhappy home and to make friends. Quite twistedly, I have fond memories of being hospitalized! And that, my miniscule audience, is clearly a sign of mental illness.

Since this was back in the 80's, mental illness still carried a heavy stigma. Today, mental illness is recognized and acknowledged as a genuine problem. Mental illness is mental illness, which mental illness mental illness mental illness. (I was already using the phrase too much, so I decided to run wild with it.)

The reality is that physical illness comes with mental illness. Even if you're in perfect health, a bad head cold will make you feel emotionally down. Now imagine the condition is chronic. Diabetes. Asthma. Colitis. Migraine headaches. The list goes on and on, and they all come with varying degrees of depression. And if the condition is terminal...? I'm not qualified to discuss that, but I can only imagine how bad it would be.

As it is, I can tell you how bad depression is from my own perspective. I've been officially diagnosed with severe recurrent depression and PTSD, with the incubator contributing generously to both. The best description I've ever heard to describe depression: Imagine you're lying in bed, and in the middle of your bedroom floor is a magic wand that will fix everything that's wrong with your life. All you have to do is pick it up and wave it around a bit. Depression saps you of the will and energy to even roll onto the floor, pick up the incredibly light wand, and give it a few casual waves.

Those diagnoses of mental illness came later in my life. During my teens, while other kids were delving into drugs and alcohol, I was getting into Twizzlers. It was my way of self-medicating. Y'see, that's what addicts are often doing. They're treating their illnesses with that which makes them feel good, or at least helps them forget why they're miserable. Me? I went to the hospital for a week or so, where I was treated well and was able to forget my miserable home life.

Why tell you all of this? Because there's always an underlying reason why a diabetic would allow themselves to become so violently ill. My reason was an unhappy home. And if you're a diabetic who's often losing control, you need to ask yourself that big introspective question: Why?

Between the ages of 13 and 20, I was hospitalized countless times. I know it's over 50, but I officially lost count after I turned 16. And every one of those hospitalizations did more and more long-term damage to my body without me noticing. I would learn much later what I'd done to myself.

So... We feeling good? Everyone bright-eyed, bushy-tailed, and happier than clams?

No?! NO?!? Fine. I'll improve everyone's day with that picture of the beautiful, scantily clad woman I mentioned last post.

Well, okay. I could've sworn I clicked on the

beautiful young woman, but my ninja penguin

showed up instead. He's the one I send out

to handle... problems.

Diabetic Retinopathy: Seeing Is Believing

Welcome back! Ready to be terrified? Oh, you're not? That's a shame. I have little else on the menu but terror. Maybe you'll get a taste for it as I go on.

I know, I know. "Don't quit my day job." But thanks to diabetes and a few other issues, I'm disabled, so I can't quit my day job. So nyah! 😝

Now where was I in my retinopathy story? ~ mutters while reading ~ Peroxide... eye doctor... puke test... early detection... ~ speaks up ~ Right. I'd started going blind. Slowly. Very slowly. Very, VERY slowly. And somehow I managed to subconsciously dismiss the seriousness of my retinopathy. As a result, I still wasn't taking very good care of myself. Cheating on my diet, late insulin doses, not checking my glucose at all. I think if my vision were worsening rapidly, I'd have taken it more seriously early on. 

But by the time I started doing that, it was too late. The damage was done. I didn't need to see an ophthalmologist to hear about the troubles brewing in my eyes. Any optometrist, who I'd be seeing just for new glasses, could see the damage without dilating my pupils. 

My every visit to an ophthalmologist filled me with fear. I didn’t want to know how far my eye disease had progressed. I didn’t want to face it. The hours that would follow such doctor visits are filled with tears of anguish and guilt. I did this to me. Not some nameless deity, not family, not friends. Me! The fear of losing the precious gift of sight was terrifying. There is a beauty to the human body, a kind of wonder that such a complex machine can exist and function the way it does. Seeing a human being grow from child to adolescent to adult is wondrous to me. Watching the miracle of the seasons change… Or to see such marvels as the Red Rocks in Arizona… The beauty of the rising and setting sun…

Sickeningly sentimental? Maybe. But wait until it starts happening to you and see where your mind starts to wander.

Remaining watchful eventually clued us in on the next step in keeping my retinopathy managed, which was lasers to cauterize any hemorrhaging in my eyes. Not "pew-pew Star Wars" lasers. Silent beams of light that can hurt when concentrated in a single part of the eye.

For quite some time, I'd be able to face these treatments with a degree of humor. One doctor even offered to make the Star Wars sound effects after I brought it up. But then something unrelated to diabetes put the nail in the psychological coffin labeled "post traumatic stress disorder." Suddenly the laser treatments were akin to actual torture. 

One of the doctors I saw would have a nurse stand behind me with a hand gently resting on the back of my head so I wouldn't pull back from the laser. There was absolutely nothing aggressive in their behavior. But my subconscious translated the entire experience into full-blown terror. It translated the entire scene into me being held against my will. I'd find myself crying uncontrollably after each treatment, and it once got so bad that I tossed my cookies.

Eventually, I graduated from lasers to... You ready for this? INJECTIONS! You're saying to yourself, "Rob, we're diabetics. Injections are what we do." And I get it. No big deal... until I tell you that they're injections made directly into the eyes.

May all of the gods in every existing pantheon bless Dr. Roy! (Not his proper name.) His voice was so calming that I flat-out told him it could be used as a sedative. Seriously, the man could tell you that you have five minutes left to live and you'd be perfectly okay with it. So when he suggested injections of Avastin, I agreed without a single complaint. He said he was going to inject my eye and I was fine with that!!!

Avastin was FDA approved 16 February 2004 as a treatment to starve malignant tumors, thereby shrinking them. (It's WAY too technical.) I can't find an exact date, but Avastin was approved for off-label use in 2005 for vascular eye diseases because it helped restrict neovascularization. (Again, too technical, but that's what I got from my research. Keep in mind I'm NOT a doctor!)

So how does one get injected in the eye? This is how it happened for me. I'd be given anesthetic drops in the affected eye, and the area around the eye was cleaned with iodine. Dr. Roy would come in, tell me to look up and away from him, tell me to stay VERY STILL, use an applicator to put a tiny dot of iodine directly on my eyeball, and then inject that site. Scary as heck. Easy as pie. The worst part...? If the exterior of my eye was cleaned a bit overzealously and more iodine wound up in my eye. Despite the anesthetic, it would BURN! 

Now you might be wondering what prompted the need for these injections. Well, when those weakened vessels I mentioned last post would start to bleed inside my eye, the blood would get suspended in the vitreous gel of the eye, creating a kind of psychedelic black spot in my vision. "Psychedelic" because I always saw it in 3-D when I'd concentrate on it.

That's the worst of it, right? A couple of shots a year in the eyes. Diabetics do shots. No big deal.

Until the shots don't work. That's what happened to my left eye. Despite receiving several injections over a six-month period, it was still hemorrhaging, obscuring part of my vision. The time had come for a vitrectomy.

I joke about it today. Because it sounds similar to a different surgical procedure men can have, I'll tell people, "I can't get you pregnant by looking at you." It usually gets a laugh. But when it was happening...? 

Let's see how funny you find the procedure. It all takes place in a hospital operating room, so there's all of the fun that comes with hospital pre-op. Sedation is given, but you are not knocked out! They need to awake so you can keep your eye from moving around. They give you juuuust enough sedation to keep you from freaking out completely. They do a block on the optic nerve, which means a facial injection below the eye. Next - and now we're really having fun! - they clamp your eye open. After ensuring you cannot blink, the doctor instructs you to look up and away, just like when you received Avastin injections... except you're about to hold your eye in this position for 30 to 45 minutes. Every now and again a nurse lubricates your eye to keep it from drying out. Meanwhile, the doctor has poked a few instruments into your eye and is removing the vitreous gel from the middle of your eye, replacing it with water. They're also carefully peeling away problematic layers of neovascularization. So far, so good... until you start calmly saying "Ow" to let the doctor know your eye isn't numb enough. Remember that they have to work under certain safely established parameters. "The patient gets X-amount of local to numb the eye." But because every patient is different, that safely established dose may not be enough. Thus, every time I calmly said "ow," I was given more local. And you have to say it calmly because the very last thing you want to do is startle the doctor delicately working on your eye. 

If you have to endure this procedure, it will be the longest hour you've ever experienced. You know how time becomes distorted during different experiences. I usually use this as an example: The length of a minute increases exponentially when you're on the wrong side of the bathroom door and really have to go while it's occupied. 

Wow, this is long. I usually cut it off now, but sharing misery and terror is becoming one of my favorite hobbies. 😉 You're welcome.

Post-op, my eye wasn't completely filled with water. There was juuuust enough air in there for a bubble to reside... at the BOTTOM of my vision. Your visual input is actually upside down and the brain flips the image so you're not living in a perpetually upside down fever dream. But that air bubble existed in the part of my eye before the point where my brain could rectify what I was seeing. As a result, the air bubble at the top of my eye was always at the bottom of my visual field.

Has any of this shocked you? Scared you? Made you think, Maybe I should monitor my diabetes a bit better? Well then, allow my to put a cherry on top of this crap sundae.

Without any vitreous gel in the center of my left eye to suspend the blood if I started bleeding in there, the blood would simply permeate the center of my eye. And that's exactly what happened about a month after the surgery. One minute I was using my eyes quite normally, and the next the vision in my left eye started disappearing. I was completely blind in my left eye in about 15 minutes. At best, I could only distinguish between light and dark.

Okay, okay. Relax. Breathe. It's terrifying, but still fixable. (That's for you. There was no way I was thinking that calmly as my ability to see faded.)

I called my doctor's office and reported what happened. He was able to see me the next day and give me another injection of Avastin. It took a few weeks, but my vision eventually cleared up. Miraculously, I haven't had a repeat of that incident.

Other optical issues sprung up almost immediately. Fluctuating blood sugars can lead to other structural changes in the eye like... Oh, I dunno... Let's say cataracts. Dr. Roy was amazed at how fast I started developing cataracts in BOTH eye post-vitrectomy, stating that it was like my eyes were sprayed with Miracle Gro. Alas, that wasn't something he handled. I had to go to a completely different eye clinic. They removed the lens of my left eye and replaced it with a generic lens. Two weeks later, they did the right eye. Those procedures were so fast that I joked they could have done them as a drive-thru service.

Because I received generic lenses instead of custom lenses, I was forced to get trifocals for my next pair of glasses. But thanks to the vitrectomy, my water-filled eye absolutely refuses to cooperate with the new lens enough to provide me with 20/20 vision. The best an optometrist can do for me is 20/30. With most daily activities, that's not a big deal. But for an avid reader like me, it's a pain in the tuchas because I can only read using one eye.

And that's where I am in terms of diabetic retinopathy today. Some of you may be thinking, That's not so bad. You got everything fixed. Yeah, but... What if I experience another bleed in my left eye and an injection doesn't fix it? What if I have to have another vitrectomy, leaving both eyes filled with water... and then I have fresh bleeds in BOTH eyes? In no way am I prepared for the world to disappear.

Okay, I think that's more than enough for this post, but I need a better ending. Something light. I mean, we're talking about eyes. Maybe something visually appealing, like a scantily clad young woman. Yes, that would be absolutely perfect. Here you go:

A T-rex in an ugly Christmas sweater?!?

Honestly don't know how I screwed that up.

Must be issues with my eyes. 😉

Diabetic Retinopathy: A Sight to See

"Diabetes can cause blindness." That line is simultaneously a dire warning and the dumbest thing anyone can say. Then again, A LOT of statements about the complications of diabetes are stupid. "You could wind up with a foot being amputated." "Your kidneys could shut down." Here's one to dread: "You could experience erectile dysfunction." (If you're of the female persuasion, don't laugh at the plight of me. When I cover neuropathy, you'll learn that you don't escape sexual dysfunction, either.)

Want to know why such statements are stupid? BECAUSE NO ONE EVER EXPLAINS HOW THOSE THINGS COULD HAPPEN! And all of those things "could" happen. Allow me to correct those statements. If you don't manage your diabetes, those things WILL happen!

Am I trying to scare you? You bet your sweet bippy, I am! Because if someone gently takes your hand and tries to sweettalk you into taking care of yourself, there's the inclination to dismiss the warnings. And if the person warning you isn't a diabetic...? Then really, what the hell do they know? "How many years of pre-med, med school, and internship? THEY KNOW NOTHING!" 

But how about a warning from a diabetic who's been through it? It's a very different story, because now it's not the voice of education and research. It's the voice of experience.

So buckle up, my non-existent audience, as I tell you about the very first complication of diabetes to affect me.

I was 24 and working for my father. Up at 6:30, groggily get my contacts in, get dressed, stop at a deli for some form of breakfast, and then make the 45 to 60 minute drive into Brooklyn. There's one word in that last sentence that complicates matters. "Groggily." My contacts would sit overnight in a peroxide solution that would be turned to some harmless chemical by morning. I'd rinse them with saline and pop them into my eyes. But you know what was missing at the time? A way to differentiate between the peroxide solution and the saline. Same-sized bottle. Same screw-top caps. Same white color.

And so it was that I rinsed my lenses with the peroxide before popping them into my eyes. Boy-howdy, did that hurt! When I finally cottoned on to my error, I rinsed the lenses and my eyes directly with saline, and then went off to work.

Note: they eventually made the spout on the peroxide solution a bright red.

By the time I'd arrived at work, my eyes were no longer burning. Dad was already there. He asked how my morning was going, to which I reported quite casually how I'd almost chemically burned my eyes out of my skull. Dad was WAY less casual! He made me go home and call an ophthalmologist.

I went home, called an eye doctor, and was told they could see me in a month. A month. So I used the magic words that habitually opened a doctor's schedule instantly. "I'm a diabetic." And what do ya know? They had an opening that afternoon!

When I saw the doctor, he said that there was a degree of extremely mild irritation still visible, but complimented me on having the presence of mind to rinse using saline. No, nearly burning out my eyes was less a concern to him than the beginnings of diabetic retinopathy.

Okay, this gets a wee bit complicated. Lack of control of diabetes causes damage to small blood vessels. Exactly how the damage is done is far too complicated to describe here. I’ve tried researching it, but I lack a medical degree to make heads or tails of it all. To quote one of my online sources, “Diabetic retinopathy is the result of microvascular retinal changes.  Hyperglycemia-induced intramural pericyte death and thickening of the basement membrane lead to incompetence of the vascular walls.” I can do the “medical speak” fairly well, but I have my limits. The best I can tell you is that the eye is filled with microscopic blood vessels. Damaged vessels become weak, will balloon, and even hemorrhage. These leaks tend to scar the retina. But wait! It gets worse! You see, the eye needs blood and oxygen delivered to the right places in order to function. The loss of this optical nourishment is called ischemia. In a wondrous little process called neovascularization, new vessels start growing in the eye. Good news, right? Wrong! These new vessels are weaker than the original blood vessels. They, too, will hemorrhage, and usually much easier than the original equipment. Eventually, blood will flow into the vitreous gel of the eye, blocking vision. The scarring that can occur without treatment can cause the retina to detach. The happy little visual receptors, commonly known as rods and cones, stop working because they are no longer attached to the cells beneath them. These detached areas become blank spots in the vision. Get enough of these areas and the diabetic becomes completely blind.

I’ll try to simplify this. And please, for the love of everything good in the world, don't try this! Just imagine it. 

Let’s say we’re not talking about the microscopic parts of the eye, but a finger. Imagine taking a rubber band and twisting it around your finger until you cut off the circulation, and then leaving it like that for a good 72 hours. Choking off the blood supply to your finger would cause your flesh to literally die, and you’d soon find yourself facing surgery to remove it. That’s what happens to the eye. It loses its proper supply of blood, effectively “killing” the cones and rods. The retina detaches, creating a very blind diabetic.

A little comparison for you. Enjoy it while

you can still see.

Back to the diagnosis...

It’s strange how the mind works. I didn’t know all that much about retinopathy back then. All I knew was that it was the cause of diabetic blindness. Here’s what the doctor said: “We caught it early.  I want you to get a fluorescein angiogram.  We’ll follow up in a few months.” Here’s how my mind translated it: “We caught your blindness early. I want you to get a fluorescein angiogram because you’re going blind. We’ll follow up in a few months, when you may start to notice that you’re going blind.” 

What does a tough guy from New York do in the face of adversity? Go home and weep, obviously! I didn’t associate my eye problems with the fact that I took terrible care of my diabetes throughout my teen years. Weeping as if the end of the world was nigh, I blamed every single living person and every god in every pantheon I could think of.

Then there were my friends, bless ‘em. There’s nothing like a little dark humor to shed light on my terrors and banish them… temporarily. They spent hours after I shared the news making terrible jokes about getting a seeing eye dog that would bark so many times to rate the beauty of women I could no longer see. On a scale of one to ten, one bark meant run for the hills and ten barks meant she definitely worth sleeping with. (Like I'd care about looks if I was blind.) Jokes even greater in their lewdness followed about “seeing with my hands.” To them, it was the perfect excuse to feel-up numerous women and have a legitimate excuse. After being humored enough, I joined in, suggesting that I wasn’t blind yet, but it made for a great pick-up line. “Excuse me, miss… I’m going blind, and I wish to see as much beauty as possible before that happens. Would you allow me to see you naked?” It was cheesy, but it got laughs.

The fluorescein angiogram was my next adventure. My father went with me, as I was told I wouldn’t be able to see properly for four to six hours after the test.

We got to the test center, signed in, and waited. And waited. And waited.

I got hungry, so I went to the cafeteria and had a tuna sandwich. I remember exactly what I ate, and you’ll understand why shortly.

Upon my return, I was given drops to dilate my pupils. After the drops were applied and starting to take effect, I was handed a piece of paper to read about the test I was about to endure. Couldn't let me read that beforehand, right? The information sheet said I could expect to pee orange for twenty-four hours after the test, and that three percent of all patients experience nausea from the dye that’s injected into the blood.

No problem. Peeing orange might be entertaining. And the nausea? I’d been nauseous before. With my seemingly perpetual bad luck, I’d be part of that three percent, so I’d be nauseous for a bit. So what?

One other thing to note before I go on: bright lights and dilated pupils don’t go well together. Bright lights can actually be painful.

The test took place in a room the approximate size of a sardine can. They set up an IV line in my arm, had me rest my head in a frame that would help me hold still while they took pictures of the inside of my eye. I was all set. They camera was ready. The technician was ready. The nurse was standing by to inject the dye. Once in my blood, they would have only a few minutes to snap their pictures before the dye was diluted too much to be worth anything.

The nurse injected the dye.

I was perfectly fine before the dye went in. But remember the warning about possible nausea? Not only was I part of that three percent, but I discovered it was much more than mere nausea. It hit like lightning once the dye was in me. I started vomiting without any delay, and I couldn’t get my head in the nearest garbage pail fast enough. This is why I can recall exactly what I ate at the cafeteria. It involuntarily came back for seconds.

So I’m puking, the technician is explaining quite firmly that I have to stay still for the test. Then he shined a light that I would have sworn was brighter than the sun in my eyes and snapped his pictures.

Puke, blinding light, snap. Puke, blinding light, snap. Puke, blinding light, snap. 

I was sure on the next fluorescein angiogram to go with an empty stomach. While extremely nauseous, there was no vomiting.

Such a description might tempt other diabetics to avoid this test. I’m almost willing to agree with you on that one… except there’s a necessity for having it done. You wouldn’t want a doctor to treat something as delicate as your eye using guesswork, would you? Especially if your power of sight hanging in the balance? (You should be answering “no” to both of those questions!) The fluorescein angiogram provides an interior map of your eye to the doctor, allowing them to see which pathways have been damaged and what can be repaired.

In the end, there was nothing much to worry about. Did I have retinopathy? Yes. Was I hemorrhaging yet? No.

This is a pretty long post, and I still have so much more to say about retinopathy. Because this isn't the scary stuff. This is early detection and preliminary care. The scary stuff... is coming.

Diabetes: The Revenge!

That titles needs a tagline. "Diabetes is back, and this time it's out for blood!" Because diabetics should check their sugar four times a day. Get it? "Out for blood"?

Yeah, it's non-stop laughs here.

When last we left off, Dr. Needles had just told a woman who'd buried her eldest child four years prior that her current oldest "could be dying."

The afternoon turned into madness after the doctor visit. The incubator called my Dad and left a message at his job in Brooklyn that I needed to be hospitalized. Dad tried to call back, but the incubator already had me in the car and on the way to the hospital that was on the Nassau County/Queens border. Dad drove all the way home from Brooklyn, was told where I was being taken, and drove almost half the distance back toward his workplace to meet us at the hospital.

Before leaving the doctor's office, he warned that I shouldn't be fed anything. Food was bad. So what was the first thing that happened when I was admitted to the hospital? They fed me. Two hot dogs and some milk. They also gave me a shot of... something. (We know what it was, but seven-year-old me didn't.) They also started an IV, which I wasn't happy about, but the nurse told me that the IV bottle - yes, this was back in the "IV bottle days" - had a steak dinner in it, so I was technically eating even more! Her trick kind of worked. I was still hungry, what with my body not being able to process fuel at the moment, but the thought that the IV was feeding me continuously kept me from complaining about the lack of food.

I slept that first night in the pediatric ward hallway. They were full up, so I had to wait for someone to be discharged the next morning. And who did they put the newly diagnosed diabetic in with? A kid who'd just had some kind of throat surgery and was basically being fed a steady diet of hard candies and ice cream.

It occurs to me that I failed to say how much time had passed between the strep throat and the diabetes diagnosis. In that time, my immune system was chewing up my beta cells, obliterating my ability to make insulin. And what kept me from slipping into a hyperglycemic coma in those two week? Once again, all I have is a theory that's impossible to prove. It's called "the honeymoon period." It's brief period after the onset/diagnosis of diabetes when the diabetic seemingly gets better. They might even experience perfectly normal blood sugars during this period. Almost like the pancreas is going through its death throes, coughing up the last of its insulin. It's my belief that that's how I survived before my official diagnosis.

Back to my diagnosis and hospitalization...

On the day I was relocated to a room, I was handed Mister Hypo is My Friend. This was the beginning of the gods-awful diabetes education I'd receive. Y'see, reading was all well and good, but that didn’t mean I was comprehending the words. The book was supposed to be telling me that I had a serious chronic illness, but I wasn’t getting that message. There was a line inside the cover to put the patient’s name, but no one filled out that part when the booklet was handed to me. As a result, it didn’t seem to have anything to do with me, and I couldn’t fathom why it’d been given to me. And how is anyone, adult or child, supposed to take “Mr. Test Tube” and “Dora Dropper” seriously?

No, the thing I remember most clearly during that week in the hospital - the part of my education that really struck home - was when I was told there'd be no more cake, candy, or ice cream in my life. Those things had been staples in my childhood diet. Now they were to go the way of the dodo. What's more, the thing that a child dreads most about anything medical was now going to be a daily part of my day: injections.

Well, I did what any other kid would do receiving all of this "good" news: I lost it. Through a great many tears, I started screaming denials about the restraints being placed on my existence, stood from the conference table where my parents and I were being educated, and stormed out of the room... completely forgetting to bring my IV pole with me. The pole followed because it was connected to my forearm, top first, falling over and luckily being stopped by a lounge chair before it could shatter on the tiled floor. After ensuring that a new IV wouldn’t need to be started, the incubator yelled at me for being... well, an upset child. That I was upset and a child didn't seem to matter to her.

I wouldn't understand my psychological state at that time until much later in life. And what brought clarity to me was the large envelope filled with letters from my second grade classmates that I received. Their crayon inscribed notes wished me well and a speedy recovery. What I seemed to notice most was that many misspelled “hospital.” There was also the fact that somewhere in my gray matter was the knowledge that my classmates had been coerced into writing those notes, making their well-wishes hollow sentiments. As for a speedy recovery, that wasn’t going to happen. I was going to have diabetes forever!

This ends the tale of my diagnosis. Despite being well-read in general and self-educated specifically on the topic of diabetes, those things came later. Instead, I was about to embark on some of the dumbest behavior a diabetic can engage in. Monumentally destructive things that were assisted by still worsening diabetes education and the incubator.

I'd like to remind you, however, that this isn't necessarily a linear story, and that I might well discuss one of my other favorite aspects of being a diabetic next time: depression or diabetic neuropathy. Oooh! Or maybe diabetic retinopathy! Yeah, that could be fun!

I'll see all of you non-existent readers in the near future with another exciting post.