Saga of the Foot - Part 6

Y'know what I forgot? The actual cause of the ceaseless fluid leak prior to my amputation. Well, once my foot was removed, it was sent off to a pathology lab, where it was subjected to several tests, and... I'm kidding. It was immediately sent as biohazardous waste to be incinerated. While it might have been interesting to know the cause, the point was moot. The foot had to go. The foot went. End of story.

But when the doctor told me the foot had been incinerated, I did joke that I'd changed my mind and wanted it reattached.

My recovery from the surgery was prolonged by a mystery. With there being absolutely no source, a blister formed on the underside of my residual limb. The picture I'm about to show you is post op, just before the staples were removed. You'll note there are plenty of stitches that would remain for another couple of weeks.

I've circled the blister for your

viewing pleasure.

Blisters are usually the result of something constantly rubbing the site or a severe burn. We didn't know it at the time, but this was a diabetic blister. Do you know what causes diabetic blisters? No, I'm actually asking you, just as I did with diabetic neuropathy. Because no one really knows; I was hoping maybe you had the answer. They appear on the extremities for no apparent reason, so that's one more thing to be vigilant about if you're not controlling your blood sugars.

Fun, right?

After three long months of post op healing, I was finally given clearance to get fitted for my first prosthetic. Off I went to the orthotics lab, where I was given... a limb shrinker! I wish I had a picture of the one I used, but I never took one. Don't fret, though, because I looked up a generic one for you!

One limb shrinker

shrinking a limb.

Maintenance of one's residual limb is important. Even after all the incisions from surgery have healed, there's going to be significant swelling. Despite the fact that your eyes can see it and your conscious mind acknowledges it, your body doesn't know that your foot is gone. It needs to be retrained to recognize that it doesn't need all of that extra blood, oxygen, and nutrients. And what better way to retrain it than with some Lycra to strangle your flesh?

For the first couple of weeks, I faithfully wore my limb shrinker day and night. Then I got annoyed. I wasn't sleeping through the night because I'd bend what was left of my leg in my sleep, causing the Lycra to bunch up at the knee, and it would pinch my skin painfully. In all honesty, I have enough reasons to be taking powerful painkillers. I was NOT going to add irritation from a leg shrinker to the list.

On my next visit to the prosthetist, I told him that I was wearing the shrinker for most of the day, but that there'd be no convincing me to wear it at night. Because of my stubbornness, my residual limb might not be small today, but I'm not overly concerned about that. When I get to remove a source of pain from my ever-growing list, I'm a happier camper.

A mold was made of my stump and I returned two weeks later for my first official fitting. This was it. I was getting my first new leg! Adjustments to the socket and the angle of the foot were made, and then, for the first time in six months, I WALKED! I was a little stiff and shaky at first, but the prosthetist was impressed at how quickly I was able to start taking regular steps. He said that 80% of new amputees tend to simply forget how to walk. Obviously, I hadn't. Although... After my first few hesitant steps, I stopped and did an imitation of Peter Boyle from Young Frankenstein, shouting the strangled line, "PUHHIN ON DA REEEZ!" (Movie trivia: No one was sure what the creature should say, so Peter Boyle improvised the line and comedy history was made!) The prosthetist thought it was hysterical.

My first month with my new leg was a pain in the tuchas. It was a struggle every day to get the pin on the leg cover to line up with the hole at the bottom of the socket.

The prosthetic as a whole.

The notched pin. It is NOT a screw.

The hole at the bottom of the socket.

Can you see why it might be a problem at first? Once the leg cover with the pin on the end was inside the socket, I could no longer see my target. Putting it on each day was a 5 to 10 minute ordeal. I commented once that I wished the socket was transparent, but the prosthetist said that they couldn't make the carbon fiber socket see-through.

Fiber. Carbon. Socket. You have no idea how much abuse this thing can take. Obviously you shouldn't try to damage your prosthetic, but someone experimented. She explains that it's the epoxy that eventually burns, not the carbon fiber. 

Aside from the obvious reason of why you shouldn't try to damage your detachable leg, since you kind of need it to walk, is the price. Gods above and below, THE PRICE! Being on Medicare, I get a lot of mail that starts off with, "This is not a bill." It's Medicare's friendly way of saying, "If you didn't have us, this is what your medical expenses would look like." Well, I got one of those for my leg, and the amount covered was about $5 shy of $8,000.00!!! I could have gotten a prosthetic CAR for less! For that kind of money, it should come with all sorts of James Bond-like extras. Like I could press a button and little wheels would pop out of the foot, and then I could just push along with my good foot. Or maybe a small refrigerated space to keep a cold drink. Or maybe a gun that comes out Robocop style. SOMETHING! Instead, all I get is next-to-impossible-to-destroy carbon fiber, advanced, lightweight alloys, and a foot engineered to simulate the natural gait of walking.

Jerks.

Having seen the price tag of my new leg, I went online to find out what the "black market price" was for it. Maybe I could sell my leg for a profit, tell insurance that someone stole my leg, and they'd get me a brand new one. Financial windfall, here I come! 

Follow me for more tips on how to defraud the government and wind up in jail!

The problem is that my prosthetic leg is worth $8,000 to me and ONLY me. Online, if you want a used prosthetic leg, you can get it for around $150 at the most. It won't fit anyone but the original owner, and it's alignment will only benefit them. In other words, a used prosthetic leg is worthless.

There was one other aspect of being an amputee that required an adjustment of conscious thought: socks. These are layers of Lycra that can be added to the leg covering to improve the socket's fit to your leg. There are all sorts of reasons why your residual limb might change size. Leg elevation, water retention, continued use of a limb shrinker. Gaps that form between the leg cover and the socket can cause pain, sores, and even calluses. To prevent these, "socks" can be slipped over the end of the leg cover. They come as one-ply, three-ply, and five-ply. If you're not catching on, think two-ply toilet paper. It's the thickness of the socks.

Seen here: one five-ply and one three-ply

sock on the end of my leg covering.

Here's the issue: I have to make sure the pin comes through the end of the sock. If I don't and force the pin into the socket, it gets jammed in place. Until I figure out a way to get it off, I'm then stuck with the leg attached. I had a couple of minor jams and one MAJOR. The major one required my to get into the shower and force soapy water into the leg covering so it would get slick enough inside to slip off me. Then someone whose hands haven't been decimated by diabetic neuropathy had to come help force the pin to release the sock-covered pin.

Fun times.

Well, quiet people, we're very near to the end of this saga. All I need to tell you now is the epilogue. About the massive lawsuit I brought against the doctors who didn't listen to my pleas for help when I made them, and their comeuppance for being the primary cause of the loss of my foot. More than the physical damage, there was the immeasurable psychological trauma of having a foot I'd lived with for over 51 years amputated. It's a light at the end of this nightmarish tunnel, right? See you next post!

Saga of the Foot - Part 3

I'm going to start this post with a WARNING! The image of my wound that I'm going to include in this post will be very disturbing and downright grotesque. You'll see the aforementioned swelling, macerated skin, and quite a bit of epithelial tissue. (Epithelial tissue forms the covering of all internal and external surfaces of your body, lines body cavities, and is the major tissue in glands. (Thank you, Google.)) 

Also, I've taken a half-dose of my antianxiety meds before I started writing this. I'll try to keep my rage from bubbling to the surface, but I won't promise it. Note: I only make promises I know I can keep, so when I say I'll try, that's the best I can do.

Picking up the story where we left off, the foot and ankle specialist scheduled me for emergency surgery two days after his last examination. To commemorate this event, our planetary system orchestrated a full solar eclipse. But I firmly believe it was arranged for the general populace, not just me.

This doctor, whom I refuse to name due to the possible perception of libel, even if what I say is 100% true, was no mere orthopedic surgeon. I refer to him as a foot and ankle specialist because that was all he worked on. He was what you might call a "special specialist." Knowing this, would you like to know what he found during the emergency exploratory surgery? Nothing. He couldn't figure it out. He GUESSED that the lubricant my body was supposed to use between the joints so they moved smoothly was being produced in excess because my body couldn't comprehend that many of the bones in my foot had been surgically fused together. Thus, he stitched me up and scheduled a follow-up visit at his office during the next work week.

On that next visit, which was a Tuesday, he noted three things.

1. I was healing.
2. I was still leaking the mystery fluid.
3. The surgical site was very swollen.

To address the swelling, he had his assistant put me in a full-contact cast. I don't know why this was done. I don't understand it as a treatment. When I explain to other doctors what was done, they stare at me in horrified disbelief and ask, "HE DID WHAT?!?" All I can do is shrug. There's the suggestion on various websites that using a cast can control swelling, but what shocks the other doctors is the fact that I was still ACTIVELY LEAKING FLUID OF AN UNKNOWN ORIGIN! 

The doctor saw me two days later, Thursday, to assess if the cast was controlling the swelling. He liked what he saw, so I was put into another cast and scheduled to return a full week later.

Up next...? Labor Day weekend of 2017! Yes, falling between those two fateful visits was a federal holiday. A weekend that was supposed to be filled with friends, family, barbeques, and the remembrance of those who literally gave their lives so people could work without an ongoing fear of death on the job. But mostly it's usually filled with people thinking, No work for three days! 

And I just had to ruin it. You see, the fiberglass cast I was put into was black in color. (It was the only color the office had.) That Sunday, not only could I feel the cast soften, but I was leaving black spots wherever my foot made contact with the floor. So I did as instructed: I called my doctor's office because something was wrong. I left a message with the on-call answering service that my cast had softened from the inside, and asked if I should go to the emergency room to have it assessed. One of my doctor's partners was on call that weekend, not my actual doctor, and she said that so long as there was no foul odor and I wasn't running a fever that I could wait until my follow-up visit on the upcoming Thursday.

Dear reader, I'm not a normal patient in many regards. Thanks to diabetic neuropathy, I have no surface sensation from my knees to my toes, which is what's expected with neuropathy. That said, I can STILL feel the soles of my feet. Well, I could. That's slowly vanishing, too. But at the time this story takes place, I felt plenty, and it was... gross. Seriously, it felt like I was walking around with my own personal swamp locked inside that cast.

When everyone returned to work on Tuesday morning, I called my doctor's office with a request. Could I come in an hour early and have the cast removed so I could then allow my foot to dry off? It was a surgical site, so I didn't think it could be washed and toweled dry. I just wanted it to air-dry. The answer, which I received the following day, was a "no." They were too busy, so there wouldn't be any open exam rooms for me to occupy for an hour.

So I waited for my Thursday appointment.

Until that appointment, this specialist would call me "The Poster Boy for Compliance." I followed doctor's orders to a T. I was told not to go to the ER on Sunday, so I didn't. I was told not to show up early for my doctor's appointment, so I didn't. And for my strict compliance, I wound up with...

Brace yourselves. This is where it gets ugly.

For my strict compliance, I wound up with this:

This is the wound exactly as it appeared on

the day the cast was removed.

Seeing is bad enough, but let me explain exactly what you're seeing. The "red meat" inside the open wound is the epithelial tissue I mentioned at the start of this post. The white, seemingly dead flesh around the edges is macerated skin. The skin further away from the wound is dry from the padding inside the cast, so the pinker skin closer to the hole is wet from the mystery fluid I was still leaking. This particular angle isn't that great, but there's also massive swelling all around the wound. (Don't worry. I'll have improved angles in a later post.)

I... was... PISSED!!! I strongly suspected that my doctor's partner was too busy enjoying the holiday weekend to really take into account my complaint about the cast softening from the inside out. I don't know who was involved in the discussion about me wanting time to air out my foot an hour before my scheduled appointment - a call that I made Tuesday and wasn't answered until Wednesday! - but obviously they didn't realize the severity of what I said. 

And now... Now the specialist went from treating me like one of his favorite patients to pariah. (For those that don't know that word. It means someone who is despised or rejected.) He was quick to refer me to a wound care specialist, and then did his best to wash his hands of me. 

Because I saw this wound care doctor at a different location, I was unaware that he was actually the third doctor of my surgeon's practice. And this guy was a real treat. I've offered to discuss the subject of good and bad doctors. This guy was a BAD doctor. 

Believe it or not, it's actually unusual for a wound like what I had to hurt, but it did. Something was very, very wrong. But when I asked him to do something about my pain, he refused. Utterly, completely, 100% refused. He said I should talk to my primary care physician. I argued that my primary wasn't treating the wound, and so wasn't responsible to treat the pain it was causing. And his response to my perfectly logical argument? "Well, I'm not prescribing anything, so your primary is your only other option." 

Let's set aside that aspect and get to the horror of the wound. It measure 3.5 cm (1.37 inches) long, 1.5 cm (0.59 inches) wide, and 4.0 cm (1.57 inches) deep. He cleaned up the wound as best he could, arranged for home care nurses to visit to change the dressing and to continuously assess the wound. And that was it.

Two days later, I had my first visit with the home nurse. The dressing applied at the wound clinic had already soaked through. Not blood. There was rarely any blood at all. It was always that mystery fluid. Due to the saturation of my bandages, the nurse visits quickly went from three times a week to daily, including weekends.

To clarify how much drainage was coming from my foot, the nurses started using something called OptiLock. This sterile dressing functioned like a diaper, absorbing fluid and turning it into a gel within its layers to lock it away. On most days, the OptiLock literally filled to bursting! This was during the daily dressing changes!

During my second visit with the wound doctor, the nurse removed something that was apparently sticking to the wound and I almost jumped through the ceiling. That brilliant specimen then asked, "That hurts?" I remained silent, but looked at him with an expression that said, "No, I yelp and flinch when something feels good." And the doctor still refused to address my pain.

My third visit to this jerk... This is where I finally lost my temper. I complained about the pain again and he refused to do anything about it again. But this time he countered with, "But we ARE treating the wound."

That's when I snapped. "CONGRATULATIONS. YOU'RE OFFICIALLY NO BETTER THAN A SCHOOL NURSE TREATING A BOO-BOO!" He actually had to leave the room and take a few deep breaths before returning to finish treating the wound. 

Things became so bad with this doctor that I started to dread my visits to his office. No joke, I had literal nightmares about having to see him. Making it worse was that he was the only wound care specialist in the area. The next nearest specialist was a 45-minute drive away.

What finally tipped me over the edge was something one of the home care nurses told me. My wound was being packed regularly with something called Dakin's solution. (Basically, it's bleach water. Buying this solution premixed is costly - about $17 minimum. Learning the exact ratios and mixing the distilled water and bleach yourself is much cheaper! Around $1.29 for the distilled water, about $1.79 for generic bleach. And since insurance wouldn't cover the Dakin's, guess what we did.) The nurse told me that the solution was great for fighting bacteria, but not so great for promoting fast healing. To quote her, "Our job is to show progress in your wound care. But that's not the case with the wound care center. The longer you have the wound, the more you have to see them, the more money they make."

Thus, on 27 October 2017, I traveled the 45 minutes to see a different wound care specialist.

That adventure, however, will have to wait until next post. For now, to make up for the gross foot pic, here's a kitty performing kata.

Master Kitty says, "Flow like water."

Saga of the Foot - Part 2

Are we having fun yet? How could we not with a story about serious illness, abject terror, and life-altering surgery? I mean, reading about it probably isn't a thrill-a-minute, but I'm pretty sure there'll never be a movie about this, so reading is all you have. Sorry.

Now... Where were we? Ah, yes. The grotesque slob that was my ex rushed me to the hospital because of the massive swelling (medically known as edema), intense pain, and "stuff" leaking from the sole of my foot.

The first thing they wanted to do was try to get a sample of whatever was causing the swelling to send off to the lab, along with the usual blood work. The ER doctor took what even I considered was a scary looking needle and tried to get get some of the fluid out of the abscess. Insulin dependency and needles go hand-in-hand, so me deeming it "scary" was saying something. (For the record, an abscess is a swollen  area filled with pus. While never officially saying what filled it was pus, it was always referenced as an abscess.) He obtained a little of the fluid and plenty of blood, making it visually impossible to guess what it was, but in the process he gave the lump an extremely dark bruise. For the remainder of my hospital stay, every time someone new came to examine the wound, I would have to explain that it was a bruise and not necrotic tissue. (Dead tissue.)

Yes, "the remainder of my hospital stay." I was admitted and put on a regimen of strong broad spectrum antibiotics. Doctors don't simply prescribe antibiotics willy-nilly. There are now meds that target specific bacteria and focus on specific areas of the body. They're not going to prescribe something that works on respiratory infections for urinary tract infections. Broad spectrum antibiotics are those that aren't tailored to something specific, but work everywhere and attack a wide variety of bacteria. They hoped to narrow down my specific needs with the culture taken with the giant needle. (A culture is a sample of tissue or fluid that is sent to the lab and grown in a Petri dish to see what kind of bacteria it is.) In the meantime, I was on three different IV antibiotics, all of them delivered over a full 24-hour span.

I was also subjected to an x-ray and a WBC (White Blood Cell) scan. This test involves them taking 57 gallons of blood from me... Okay, there's only about 1.5 gallons of blood in the human body, so 57 gallons is a slight exaggeration. They actually only took 50 milliliters, but it looks like they're trying to empty me out of blood. They sent the blood off to a radiology lab, where they separated the white blood cells, irradiated them, and finally injected the radioactive cells back into me. Then using medical mysticism and voodoo - I'M STILL NOT A DOCTOR! - they got pictures of where the white cells rushed to battle infection. Mind you, white blood cells perform their job throughout the body (as you'll soon see), but they were on the lookout for specifically concentrated gatherings. The abscess lit up like a light bulb, but the bones did not, meaning that the infection wasn't osteomyelitis. 

My WBC scan.

I know it's difficult to see, but you can just make out the shadows that are my feet in the above picture. The white spot is the aforementioned irradiated white blood cells focusing on the exact spot where the abscess was.

About the white blood cells working throughout the body... Think of it as regular maintenance. They'll be present, but their dispersal isn't concentrated enough to indicate infection. How do I know this? Because while I was filled with radioactive white blood cells, they also did a full body scan to make sure something wasn't hiding elsewhere. I took one look at the pictures of my torso and asked, "Why is my uterus lit up like that?" Mind you, there's no biological or medical reason why I might have a uterus, so my question got a lot of laughs... as intended. 😉 What I was calling "my uterus" was only vaguely shaped like a woman's reproductive organs. 

I fight the terror and darkness with humor when I can.

My stay lasted six days. During that time, we learned that my infection wasn't MRSA, but MRSE. MRSA is - you'll love this one - Methicillin-Resistant Staphylococcus Aureus. This is considered a "super bug" that requires heavy doses of antibiotics. MRSE is Methicillin-Resistant Staphylococcus Epiderminis, which is more easily treated. (Or so it was explained to me.) The fun thing about MRSA is that once you have it, you run the risk of it popping up again for the rest of your life, so the verdict of MRSE was something of a relief.

I was put on a specific antibiotic on my release and my doctor eventually prescribed physical therapy - PT - to reduce the ceaseless swelling after I had no apparent holes in me anymore. He had no idea what was going on inside me, but hoped PT would disperse whatever was gathering on the sole of my foot.

It hadn't occurred to me at that time that the cause of my infection might have been my ex. Not yet, anyway. But there was a better than average chance that her slovenly ways made our shared bed an infectious bacteria farm. (If you want to hear the details about her, you'll have to ask, as my relationship with her only loosely affected my diabetes up until this point.)

Four months after the bilateral foot surgery, with the swelling still present, but the exterior seemingly healed, I was drying my foot briskly with a towel after a shower when an absolutely miniscule callus - or so it appeared to my amateur eye - got caught on the towel and popped off. My foot immediately started leaking again. It was that clear "stuff" with no discernable scent.

Okay, I'm not a wound care specialist. (Insert my insistence that I'm not a doctor here.) That said, you should have the basics of wound care on hand at home for any wound that appears on your feet. Clean with soap and water. Disinfect with iodine. Apply some antibiotic ointment. (My preference is ointment and not cream because the former helps keep bandages from sticking to the wound.) Cover the wound with a sterile dressing, and then CALL YOUR DOCTOR! Better your doctor should know at the start that you have a small cut on your foot that you're treating with the basics than receive a panicked call from you later about the extremely painful, odd-smelling wound you never reported. If you have diabetic neuropathy, always check your feet at the end of the day! You may have hurt yourself without feeling it during the normal course of your day! NEVER, EVER pick at scabs or loose pieces of skin! NEVER, EVER file or sand down calluses! Leave the care of calluses and cutting of toe nails to your podiatrist! If the wound you have appears irritated, is warm/hot to the touch, and actually hurts when you make contact with it, and it is past your doctor's business hours, get to an emergency room! Infections can do serious damage very quickly if improperly treated.

After some quick first aid, my freshly leaking foot and I were taken to the ER. They did a CAT scan, also know as a CT scan. (No, they aren't looking for cats. No, they don't have a cat look you over. Stop that! It doesn't involve cats!) It's a quick and easy way to get a look at various tissues inside you. Lengthier and noisier would be an MRI, but those are done less during an ER visit. The scan showed another abscess, but my blood work all came back normal. No elevated white cell count, meaning that my body hadn't detected an infection. They packed the wound and told me to call my doctor the next day. (Packing a wound helps speed up healing and keep the wound healing evenly.)

Special side note: Packing the wound caused me quite a bit of pain. That was a little odd, considering that there was supposedly no infection present.

I called the foot and ankle specialist the next day, as instructed by the ER doctor. He wanted to see me right away. After a physical exam that left him mystified, he scheduled me for surgery two days later. He was determined to find the source of the fluid that was perpetually building up and leaking from me.

This surgery will mark the official beginning of the end for my left foot. Can diabetes be attributed to this loss? Partially. But from my point of view, a majority of the reason was medical malpractice, and you'll see why in my next post... because I have to stop here due to the level of anxiety this part of the story is producing. I'll get through it eventually, but that will likely require antianxiety meds. In an effort to make myself - and by association you - feel better, here's a picture of a giant kitty playing with a car.

Imagine having to clean this cat's litter box!

Saga of the Foot - Part 1

Yeah, I've decided to brave this subject. I promise you, there's humor woven into the story, but it's not instantly apparent. This story is also the culmination of things I've written about before, so expect a degree of repetition. I'm not repeating things to bore you. I'm repeating things in the hopes of drilling them into your head. 

It's better that I use words than an actual drill, isn't it?

First, let's take another look at a normal foot x-ray. Keep in mind that I searched for one that I could look at without asking, "What the heck is that?!?" Really, "normal foot x-ray lateral view" brought up images that did NOT look normal. Remember, I'M NOT A DOCTOR, but having seen what MY foot looks like, I can basically look at what they considered "normal" and say, "No, something's wrong in there. Here's hoping whoever labeled this for the internet wasn't that person's doctor."

As normal a foot as I could find.

Now let's look at my feet.

Right foot. I'll explain the circles.

My left foot. I said I'd explain the circles!

Don't rush me!

Yes, the left foot is post op of my second Charcot reconstruction. It can't be helped; they're all I have left. The smaller circles are around genuine bone spurs. On the left, it formed a kind of hook. On the right, it looks like an upside down shark fin. As for the bigger circles, those are the collapsed arches. These latter deformities were visible without x-rays, presenting as rocker bottom feet. Just imagine the sole of your foot curving like the runners of a rocking chair.

My complaint to the foot and ankle specialist I was seeing at the time was that the bone spurs were starting to become a problem. I was developing painful scar tissue under them. I would take a step, the bone spur would first land on the scar tissue, and a split-second later the spur would slip off the scar tissue and stab into the tissues that hadn't scarred.

The doctor's observations were that the fused bones in both of my feet were stable, so he could go in and do some plaining on the bottom of my feet. I needed the spurs addressed, but he sold me on addressing the collapsed arches while I was already in the operating table. Kind of like how the car salesman sells you on upgrading the sound system in your car for an extra $1,500 when you're not even a die hard audiophile.

NOTE: I'm not sure if it should be "plaining" or "planing," so I'm going with the former because a plain is a flat piece of land with few trees. As far as I know, there were no trees growing out of my feet.

So it was that I was scheduled for bilateral foot surgery. This meant that he would operate on BOTH feet simultaneously. I was a little worried about him messing with both feet at the same time, but was assured it could be done and I wouldn't be in excruciating pain. And he was right. I wasn't in excruciating pain... yet. 

Of the surgery itself, he said the most shocking thing he encountered was the amount of scar tissue he encountered along the collapsed arches of my right foot. It was so thick and tough that he initially thought it was bone!

Doesn't this all sound like fun? Some of you may be saying, "Damn, Rob. Sounds like you went through Hell." Alas, you're missing the point if that's the only thought you're having. I'm not telling this story for entertainment. I'm trying to warn you that THIS COULD HAPPEN TO YOU IF YOU DON'T MAINTAIN CONTROL OF YOUR DIABETES! Probably not exactly as it happened to me, but something very similar.

Now for a slight divergence in this story because I have to tell you about my ex. I could write an entire book about the things she did and didn't do, but the two things you need to know about her was that she worked at the nearby hospital cleaning operating rooms and that she showered once every two or three weeks. 

Yes, it WAS disgusting! She got away with this at work by applying deodorant and body spray before leaving our apartment. But by the time she got home, she STANK! What's more, she would get mad at me if I pleaded with her to shower.

Why is this important? Because my ex was working in a bacteria rich environment and not washing it all away on a daily basis. You see, hospitals are something of a contradiction. They have staff dedicated to keeping everything clean, but bacteria-laden patients are in and out all day. Those hard-working cleaning staff members are always playing catch-up. As a result, my ex was bringing home all sorts of microscopic ugliness and allowing it to grow.

What happened to me next might be entirely her fault.

A few weeks after my surgery, it was becoming impossible to walk on my left foot. It hurt so damn much! I wasn't about to fiddle with my bandages, but the pain reached a point where I had to take a look and find out what was going on.

What I saw instantly filled me with horror! It looked like I'd somehow inserted a golf ball into the sole of my foot. The entire area was covered in clear fluid and the skin looked pale and lifeless. Seriously, my mind immediately leaped to the idea that necrosis was next. Thankfully, I was wrong. The skin was merely macerated, meaning that it has been saturated in fluid. (Don't worry. You'll get an excellent view of macerated skin in time.) But when I called my doctor's office, I was in tears, convinced that if I went to the hospital that I was going to lose the foot.

The hospital was exactly where I was told to go. By the time the office returned my call, which was in under 15 minutes, I'd come to realize a couple of things. Whatever was leaking from my foot wasn't pus and there was no bad smell coming from my foot. The thing that always comes to mind when I'm fretting over possible infections is a moment in Saving Private Ryan. A medic asks one of the Army Rangers to smell a patient's leg and tell him "if it smells south of cheese." Since my foot didn't smell cheese-like at all, I was less panicky.

I was still worried, though. Pain and excessive swelling are two of the things that post op patients are supposed to report immediately to their doctor, and I had both of those in spades!

Here, dear reader, is where I'm going to end this part of the story. Why? Because my hospitalization was something of an adventure unto itself. And, no, you don't get even the tease of the beautiful, scantily clad young woman. You already have three sexy x-rays. Don't be so needy.

It Runs Deep

Boy-howdy, did you get lucky! When I sat down to start writing this post, I had decided to dive into the deepest, darkest waters of my life and tell you about the loss of my left foot. But as I settled my two fingers on my keyboard, (I'm a two-fingered typist), it occurred to me that a major topic would be missing from that story: Infection. Oh, I've mentioned how serious infections can be, but I haven't explained nearly as much as I can.

So buckle up, buttercup! We're going for a ride!

But fiiiiirst... Seriously, you Earthlings reading my ramblings, do you  really have nothing to say?! "Wow, Rob, I'm so glad you told this story! I had no idea this was even possible!" "Rob, for revealing the previously unmentioned and horrific truths about diabetes, I curse you and all who know you." "You write good." "I don't know who you are. I don't know what you want. If you're looking for money, I can tell you that I don't have money. But what I can tell you is that I have a very particular set of skills; skills I have acquired over a very long career. Skills that make me a nightmare for people like you. If you let my diabetes go, that'll be the end of it. I will not look for you. I will not pursue you. But if you don't, I will look for you; I will find you; and I will kill you." (Anyone catch what I did there?) Seriously, folks, I would appreciate the feedback. Heck, I'll even accept, "Show the scantily clad, beautiful young woman already!" (And give up on a running gag so easily? You'd have to comment to see if I'd actually do it.)

Back to our regularly scheduled blog post.

Infections are troublesome for Type 1 diabetics because we start off being immunocompromised. It means our immune systems don't function properly from the beginning. But then Type 1's and Type 2's experience overlap once diabetes has affected them at a microvascular level. It's important to remember that excessively high sugars alter the structure of blood vessels. The stranglehold in the smallest parts of your circulatory system means blood can't flow properly to wounds to heal them. As a result, we're more susceptible to infection.

Yes, I've mentioned the vascular disease before. And I'll mention it again whenever necessary so that you understand exactly how important it is. That applies to monitoring your blood sugars and communicating with your doctor.

Y'know what else I've mentioned that you may have forgotten? How deep an infection can get. An infection on your skin can wind up going down into your bones! And a bone infection is called osteomyelitis. 

I've had it twice.

The first time I had it was the result of an obnoxious ER doctor who didn't see me as a diabetic in pain. He viewed me as a drug-seeking lowlife.

Look, I can understand that he had probably encountered drug-seekers. They say they're in pain, but have nothing to show for it. I, in turn, had a lump in the middle of the ball of my foot. After getting an x-ray that showed nothing, he numbed me with a local anesthetic and used a scalpel on the lump.

The ER doctor... sliced open the underside of a foot... of a 38-year-old man... who'd been an insulin dependent diabetic... for 31 years. (Those are the numbers for the summer of 2005.)

Nothing but blood came out. The only things he had to go on were the facts that I said I was intense pain and that there was swelling. So he did two things. He flat out told me he wouldn't do ANYTHING for my pain and he discharged me. That's it. And he did these things as rudely as possible, making it very clear that he thought I was faking so I could get drugs.

Two weeks later, I was back in the ER with what seemed like the same complaint. Except this time the x-rays showed that the third metatarsal of my right foot, right at the point where the other doctor had cut me open, was infected. I was immediately admitted and kept for 27 days. Every day involved a twice daily bag of vancomycin, which is an antibiotic, and the occasional test. X-rays, bone density, MRIs. The x-rays were the best! Each showed more of that long bone in the middle of my foot slowly disintegrating. Eventually, there was so little of the bone left that I experienced a pathological fracture. That's officially defined as "a broken bone caused by disease." 

Once I was discharged from the hospital, I still had to administer the IV antibiotic. Getting that set up was its own form of fun. Their first two attempts were PICC lines. That's a Peripherally Inserted Central Catheter inserted in the forearm. The line was pushed all the way up my arm and into the chest region. They took an x-ray to ensure it was positioned correctly, and then the plan was to send me home with a two-week supply of vancomycin.

But by the time I returned from the x-ray, the skin covering my bicep was covered with a splotchy red rash and was tender to the touch. They'd never seen anything like it. I mean, it was obviously an allergic reaction, which they'd seen often enough, but the PICC line was made of the same materials as the IV lines they'd been putting in me for weeks, and I'd had no reaction to those in any way.

Those jerks at the hospital tried to get sneaky with me. They removed the first PICC line, inserted a new one in the opposite arm, and did their best to rush things along so they could have me out the door before I had another allergic reaction.

This is where I'll bring up The Patient's Bill of Rights for the first time. Here are the basics:

1. The right to be treated with respect and without discrimination.
2. The right to obtain your medical records. (Keep in mind that many doctors' offices will charge you for the resources used to make copies.)
3. The right to privacy of your medical records. This is compliance with HIPAA. 
4. The right to make a treatment choice. As long as you're of sound mind, YOU decide what can and can't be done to you. Which leads neatly into...
5. The right to informed consent. You need to have tests and procedures explained to you in a way that you understand. This is why you'll find yourself signing a form saying that you consent for a doctor to treat you.
6. The right to refuse treatment. Again, as long as you're of sound mind and understand the consequences, you can refuse tests, treatments, and medications.
7. The right to make decisions about end-of-life care.

The attempt to rush me out of the hospital brought 4 and 6 of those rights into play. After racing to insert the PICC line, get their x-ray, and shoo me out the door, I availed myself of my rights and refused to be discharged. I insisted that we wait to be sure I didn't have the same allergic reaction, and I was glad I did! About an hour after refusing to let them release me back into the wild, the splotchy red patch and tenderness appeared on my arm.

So it was that I underwent a minor surgical procedure to install a Hickman catheter. This was put in my chest and anchored in my jugular vein. Same materials as the PICC lines. No allergic reaction. Don't ask me. I never received an explanation of how or why my body reacted like that.

Come the next day, which was the 27th day of my visit, I was sent home.

When the bone eventually healed completely, there was a visible deformity at the end of the bone that even I, without medical training, could pick out. But thanks to Charcot foot, all of the bones look deformed.

I was lucky. Very lucky. The treatments for osteomyelitis are:

1. IV antibiotics.
2. Surgical resection of the infected bone and IV antibiotics. This means that in addition to medication, they surgically cut away necrotic or infected bone. ("Necrotic" tissue means it's dead.)
3. Amputation.

It all depends on a number of factors. Patient age, medical history, severity of the infection, etc. If ever faced with this fairly scary illness, be sure to have an in-depth conversation with your healthcare team. There may be tight time constraints if the infection is endangering your life, but if you can be afforded the time, write down any questions you might have so you can remember everything that has come to mind about the literal loss of a limb. "Informed consent," remember? 😉

Okay... We'll start my second osteomyelitis story with some audience participation. Extend a finger, then use your other hand to move the finger in a circular motion by its tip. You'll notice that the entire finger moves. This is because of the tendons running the entire length of all of your fingers. This simple principle applies to your toes, too. There are no muscles in your fingers and toes. It's basically held together with skin and tendons.

What happened to the second toe of my left foot remains a mystery. I couldn't recall ever injuring it. For whatever the reason, I had what could best be described as a "volcanic wound." It looked like pressure built up inside and it blew its top, leaving a small hole at the tip of the toe.

Two things stood out from the examination by my podiatrist. (A podiatrist is a foot doctor.) The first was that he was able to get the wooden tip of an applicator into the hole and slide it down to the bone without any obstructions. The other thing was his ability to move the tip of my toe independently of the rest of the toe. Because there are no muscles in toes, it meant that the tip of my toe was basically being held in place by skin, and only skin. Oh, maybe some other tissues exist in there, but I couldn't tell you for sure. (I know it's been a few posts, but in that time I STILL HAVEN'T BECOME A DOCTOR!) Whatever the infection was that had gotten into my toe had eaten away the tendon. It was well within the realm of possibility that I could bang my foot into something, remove my sock to inspect the possible damage, and have the end of my toe fall out of the sock.

A second opinion wasn't necessary. I could see that the toe was done for. An x-ray was taken, but it revealed nothing because... Okay, this is going to be hard to grasp, but an x-ray of an infected bone is always two weeks behind what can actually be seen on film. The only way to get an up-to-the-minute status of osteomyelitis is to open the patient up and examine the bone visually. And that seemed like a lot for a toe that was obviously on its way out.

That particular podiatrist was a very likeable guy, and he often preferred to understand a patient's illness to some extent than dismiss it once it had been addressed. So after my toe was removed, it was sent off for a pathology report. I've already revealed that it turned out to be osteomyelitis, but the lab labeled it "site specific osteomyelitis." What does that mean? No idea. Even the doctor didn't know. His takeaway was that it was a bone infection, so the mystery was as solved as it could be.

I would like, however, to note that I tried to look up "site specific osteomyelitis" so I could give you all some kind of definition. This proved to be a monumental mistake. Pictures of diabetic feet with advanced infections are worthy of nausea. And when I get to my own foot amputation tale, you'll get an eyeful of nightmare fuel.

Thus, my lengthy post about osteomyelitis comes to an and. I would go through my shtick about the young woman, but I'm going to see if I can coerce you people into commenting. And to that end...

I'm all ears.

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 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. 😉