Am I a brittle diabetic?  I’m not a doctor, so I don’t have an informed medical opinion.  I’ve never heard my endocrinologist say I was.  According to The Cleveland Clinic only about 3 out of 1,000 people with insulin dependent diabetes are brittle.  It’s most common in women in their 20s and 30s.

https://my.clevelandclinic.org/health/diseases/21499-brittle-diabetes#:~:text=What%20is%20brittle%20diabetes%3F,hyperglycemia%20(high%20blood%20sugar).

It seems unlikely that I am, then.  On the other hand, the same source tells me that the difference between “normal” diabetes and unstable diabetes is that those with unstable diabetes exhibit these symptoms:

• Affect their ability to live life normally.  (I’m on Disability because I can’t stand up for any significant length of time)

• Cause anxiety and depression.  (Hi, I’m Fred.  Have we met?)

• Lead to hospitalization or even death.  (I’ve been hospitalized way too many times.)

In the last few weeks my blood sugar has been jumping around like a ping pong ball chasing a rabbit on crack.  I have a Continuous Glucose Monitor (CGM) that is very helpful, and it’s shown that I have been dangerously close to falling into a coma at least half a dozen times this month.  I’ve been moving toward Diabetic Ketoacidosis (DKA) three or four times. 

Between my dog, Speedy Shine, and my CGM, I have been alerted in time to save myself.  My dog wakes me up frequently just a few minutes before the CGM starts alarming, both for highs and lows.  To my knowledge, he was never trained for this, but he does it often.  He also does it when I stop breathing.  I hope to have my C-PAP soon, so he won’t need to provide that service anymore.  I have my second sleep study coming up this weekend.  I’m hoping they’ll give me the machine then.  I’d like to get on with it.

I can’t feel my feet anymore, and I nearly lost a toe last October.  This is a symptom of diabetes called neuropathy.  It causes us to lose feelings in our extremities. 

The exact cause of each type of neuropathy is unknown.  Researchers think that over time, uncontrolled high blood sugar damages nerves and interferes with their ability to send signals, leading to diabetic neuropathy.  High blood sugar also weakens the walls of the small blood vessels (capillaries) that supply the nerves with oxygen and nutrients. 

https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580#:~:text=Researchers%20think%20that%20over%20time,nerves%20with%20oxygen%20and%20nutrients.

A toenail broke off, got stuck in my sock, and cut one of my toes.  I didn’t notice it, and if Speedy Shine hadn’t been trying to eat my foot that morning, I would have become septic.  I was fortunate to have a brilliant surgeon who managed to remove a little piece of bone instead of amputating the entire appendage.  You can hear all about this in the episode “Horror Toes.”  (It’s Episode 177 if you’re scrolling through Spotify or Apple Podcasts searching for it.)

Speaking of feet, they’re essential for tightrope walking.  It’s Rule #3 in ChatGPT’s rules for Tightrope Walkers:

Footwear: Tightrope walkers often wear soft, flexible shoes with thin soles to help them feel the wire beneath their feet and make it easier to maintain balance.

The fact that I can’t feel my feet does much to add to my identity as The Smelly Old Man.  I can’t possibly shower safely.  It’s not a question of if, but when, I will fall.  I’m hoping to get help with this in the next couple of months.  Evidently, I can get a special chair that will prevent me from needing to stand, but it’s getting out with wet feet that worries me.  If Medicare won’t pay for it, it’s a moot point.  There’s no way I can afford that.

The feeling in my fingertips is waning fast.  I have a much more difficult time typing now, and that’s a more serious concern for me than losing a toe.  Writing would be infinitely more difficult for me if I couldn’t type anymore.  If I can’t write anymore, my life will lose most of its meaning.

I’m fortunate to live in nearly complete poverty because it means that Arizona and Medicare pay for most of my medical bills.  Humalog can cost well over $200 a month without insurance.  (I just learned that at least one company has now capped the cost at $35 a month… thank you Eli Lilly!)  I also need Lantus, and that would cost another $200.  I make less than $1500 a month on Disability.  That would leave me less than $1100 a month for rent, food, and living.  The cheapest studio apartment in my city is $1500 a month.  Libre is kind enough to provide their sensors for as little as $40 a month if one is insured privately.  Nevertheless, that’s $40 a month I would never have.  One can either survive by living in poverty (and in my case, being the beneficiary of plenty of charity and some wonderful People On The Porch) or one can die of diabetes for lack of the necessary medical assistance. 

ChatGPT’s first rule for tightrope walkers is:

Safety first: Safety is the most important consideration when it comes to tightrope walking.  It is essential to use proper equipment, including a secure harness, and to have trained professionals supervise the activity.

Since my surgery, the insurance company has taken a much greater interest in my health.  I have the proper equipment now, and I have professionals helping to supervise.  I fought my diabetes successfully for more than 20 years.  In the last 6 years, however, I’ve been in the hospital for DKA 16 times.  I’m told most diabetics don’t survive it more than 4 or 5 times.  I’m unreasonably lucky.  I wish I would have had the support I have now much earlier.  I would certainly be healthier than I am today. 

I’m also lacking the second most important thing for those on tightropes:

Balance: Tightrope walking requires excellent balance and coordination.  The performer must keep their center of gravity directly over the wire and use their arms to maintain balance.

My numbers are rarely in range and properly balanced.  The CGM helps with this, and I’m glad I have it.  Why shouldn’t everyone with diabetes have one?

DKA is caused by blood sugar rising high enough that the diabetic begins to spill ketones.  My doctor described it to me as my blood turning to acid and trying to kill me from the inside out.  You can bring it down with insulin, but only if you catch it early enough.  Drinking lots of water also helps because, if I understand it correctly, the water dilutes the ketones, and we get rid of them when we urinate.  I have no medical degree.  I could absolutely be wrong about this.  Please check with your own doctor if you’re diabetic.  I’m relating my own experiences with the problem.  Your mileage may vary. 

CGMs are not all equal.  My Dexcom lost connection more frequently than it maintained it.  My Libre keeps the connection well, but I’m told it tends to be about ten minutes behind the actual number it gives.  This is a place I believe technology will continue to improve, and I’m hopeful that all diabetics will have these devices to help us control our blood sugar. 

My Dexcom gave me significantly lower numbers than my Libre.  This can potentially be deadly.  At one point my Dexcom told me I was at 60.  My Libre said 106.  

For those who don’t know American blood sugar numbers, doctors like us to be between 80 and 120 most of the time.  At 60, one is vulnerable to going into a coma.  Above 300 one is vulnerable to DKA.  When you’re at 60, you need to eat, and you need to do it quickly.  Glucose tablets provide quick carbs, but they don’t last.  A real meal is essential. 

Had I eaten lots of carbs when I was at 106, I would have bumped up my blood sugar to a place where I might be moving toward DKA.  If nothing else, I would have raised my A1C unnecessarily. 

The A1C test—also known as the hemoglobin A1C or HbA1c test—is a simple blood test that measures your average blood sugar levels over the past 3 months.  It’s one of the commonly used tests to diagnose prediabetes and diabetes, and is also the main test to help you and your health care team manage your diabetes. Higher A1C levels are linked to diabetes complications, so reaching and maintaining your individual A1C goal is really important if you have diabetes.

https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html#:~:text=The%20A1C%20test%E2%80%94also%20known,care%20team%20manage%20your%20diabetes

All of the above is the medical and scientific side of Diabetes.  There is another side, and it’s at least as important.  It’s what Diabetes does to its victims emotionally and psychologically.  To be diabetic means to live life knowing that if we make the wrong decision, if we forget to eat, if we forget to take our insulin, or for reasons over which we have no control at all, we can suddenly slip into a coma from which we will never wake, or we will lose consciousness after throwing up for a while when we go into DKA. 

Honestly, it’s frightening.  I know that any of us can be dead at any moment.  A meteor could strike Earth in the next five minutes, and that would be the ball game for millions, or perhaps billions of us.  We could get hit by a bus or murdered in our sleep.  Yes, Death awaits all of us.  It just seems a bit more anxious to cuddle up with diabetics.

There was a time, not that long ago, when it didn’t bother me much.  I was ready to die if it was my time.  There were times when I was in a hurry to reach that final curtain.  As life has improved, however, I feel more like I want to continue to live.  I’m becoming a better writer.  I’m almost safe every month because so many people help me so much and so often.  I have a dog who loves me.  No one is calling me a F***ing liar half a dozen times a day anymore, and I’m healing from my own traumas.

I still get depressed, but it’s not happening as often.  I’m taking Duloxetine, and that may be what is helping me.  It may also be that conditions are improving.  Measuring depression is much harder than measuring blood sugar.  I can’t prick my finger to find out my depression level.

I spent most of my day getting my living will, my last will and testament, my medical and financial powers of attorney, and my instructions for the disposal of my remains handled.  I also have plans for someone taking care of Speedy Shine in the event of my demise.

My next step is going to be getting a safety net in place in case I fall off my diabetes tightrope.  I need to hear back from Assisted Living, and all the steps in that could take up to 45 days.

Since my numbers have been frightening in the last week or so, I thought it was more important to sort out what happens if I die.  I still have to meet with my best friend, Stephanie, and an additional witness to sign everything, but I’m hoping that will take place in the next couple of weeks.

I also need to get a network of people set up in the event I wind up in the hospital, but I haven’t died. I would need people to take care of Speedy Shine until I can get back.  I’m hoping to put together some folks who can donate some money to pay someone to be here while I can’t.  That will be happening in the next few days.  If Sherlock, The Mystery Patron, is still in town, I’m hoping I can get her to come by and take care of him, but he tried to bite her once, so I’m not so sure I can do that.  (Yes, we’re going to be working on that in the coming days, too.  That’s an entirely separate podcast.  Speedy Shine will tell you about it himself.)

When Death keeps knocking on the door, it seems foolish not to prepare for its entrance.  I’m working on a Final Front Porch Podcast that will be published after my death.  Mortality isn’t fun to consider, but that doesn’t change its existence.  We can’t escape by ignoring it.  We can only be caught unprepared. 

I have learned to accept that I am going to die sooner than I might like.  Part of this is because I’m choosing to live life the way I want to instead of in the ways that might prolong my days on Earth.  If I’m going to live, I’m going to enjoy it. 

Please understand that diabetics may seem fine from the outside, but I feel confident that I’m not the only one who lives with the unspoken terror contained in frightening numbers we see far too frequently. 

The fear isn’t falling off the tightrope; that’s inevitable.  The fear is in how far we’ll fall.  I’m doing my best to keep my wire as low as possible.  Let’s raise the healthcare ceiling to include all of us and lower the wire for everyone.  Let’s help the diabetics to Shine.