Category Archives: illness

The Rambling Road: Invisible disease

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For better or worse, it appears I’ve joined the ranks of those suffering from invisible diseases. Invisible does not imply non-existent as so many people imagine; rather, it states that it is a disease that does not manifest itself with outward visible signs others can identify.

“But you look fine,” is one of the worst things you can say to someone fighting the diseases no one can see, because, while that person may look fine, they’re often exhausted, in pain, and dealing with physiological effects hidden from your view.

Being told you don’t look sick makes trying to weather being sick that much harder. What’s worse is that far too many people take their view that no outward signs means no inward disease as an excuse to harangue and ridicule, making life even worse for the one who is sick. This has not happened to me, but I know far too many people for whom that is true.

For me, the greatest manifestation of my invisible illness is fatigue. I simply don’t have any stamina, which means that I have a limited reserve for things like getting out of bed and staying upright throughout the day, let alone exercising or doing the work that I need to. But, I don’t look sick, and that’s frustrating even for me.

I can assure you, however, that I would not be enduring regular visits to doctors complete with blood draws, taking piles of medications, and inflicting daily pricks and injections if I was not sick. Unfortunately, what’s wrong is inside me, and nobody’s quite sure what that is yet.

I’m not saying any of this to get sympathy for myself, but to help anyone who knows other people complaining of invisible illnesses see that they’re telling the truth. They are sick. They are in pain. They are exhausted. They are struggling.

Have compassion. They need it.

DLH

Read more at my The Rambling Road weblog…

The Rambling Road: Pancreatitis makes my clothes fall off

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..But, as my wife pointed out and with apologies to Joe Nichols, tequila would have been a lot cheaper…

Lame attempts at humor aside, since the beginning of January, I’ve lost more than 30 pounds as a result of a combination of not really being able to eat for almost two weeks, changes to how my body handles food due to illness and medication, and now being on a somewhat restricted diet missing, most notably, the foods that helped me get fat.

The result has been dramatic, involving everything from flappy skin on my legs and butt to losing a couple of cup sizes on my moobs (c’mon people, laugh). More importantly, I’ve lost several inches off my waist from a year ago, dropping four pant sizes.

This isn’t the way to lose weight I’d recommend to anyone, but it is interesting that one of the pieces of advice medical professionals and various individuals have been giving me for more than a decade finds its realization in illness. It appears my body decided I needed to lost the weight even if my mind was reluctant to do so. The secret, of course, is to keep that weight off in the long term.

Maybe that tequila will come in handy after all…

DLH

Read more at my The Rambling Road weblog…

The Rambling Road: Already, the first of what I suspect will be many pauses

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From the beginning, I intended this blog to be a blow-by-blow account of my journey, so there are going to be times when that account may be uncomfortable for some or downright icky. If that’s too much information for you, please do not read on.

That said, my digestive system has been fragile since I got out of the hospital, and I have had to be especially careful with what and how much I put in it, lest it get angry, which it does with a certain ferocity.

Unfortunately for me, I don’t have some kind of indulgence to blame for today’s upsettedness, as far as I can tell. I woke up this morning to system-wide discomfort reminiscent of a stomach bug or the way my allergies sometimes wreak havoc on me. Whatever the cause, in my current fatigued state, it’s taking it out of me.

Not to worry, though, as this feels nothing like the lead up to my bout of pancreatitis. I’m paying very close attention to those signs, as you might imagine. My hope is that this will pass and I can get back to the business at hand soon.

DLH

Read more at my The Rambling Road weblog…

The Rambling Road: So, what’s this all about?

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It’s sometimes hard to know where to begin an explanation of something that has been coming my whole adult life, so I will start with the event that triggered the birth of this blog.

A couple of weeks ago, I ended up in the hospital for almost a week as the result of acute pancreatitis brought on by a dangerous elevation of my blood-borne triglycerides. The condition was serious enough the doctors opted to reduce my triglyceride levels by removing them using a process called plasmapheresis. The whole experience was the most intense and painful thing I have ever experienced in my entire life, and I realized that I am willing to do extreme things to never have to experience it again.

That brings me to the reality of how I ended up in that state. The circumstances that lead to my hospitalization were not just the result of some unexplained biological malfunction, although there is also that element to the story. Instead, a large part of how I ended up in that state began decades ago when I, for a variety of reasons I suppose I may get into over the life of this blog, chose to stop taking care of my body.

In fact, over the past decade, I had pretty much given up on taking care of myself at all, most often with the excuse I had more important things to do. I didn’t. Instead, that excuse was worse than an excuse: it was a lie.

This blog will be my documentation of the refutation of that lie. Over the course of the next weeks and months and, perhaps, even years, I plan to document my journey away from the lie of not taking care of myself toward the truth of taking care of myself so I can do all the things I do better. I want to share this journey with anyone who cares to follow along for the accountability of it, for mutual encouragement, and to provide a place to document the things I discover along the way.

As to the name of the blog, once upon a time, I considered myself to be a rambler, or as the Irish call it, a rover. I tend to wander without being lost, and have long believed that the journey is more important than the destination. I suspect my journey back to health will follow the same meandering but purposeful path so many other parts of my life have.

So, this is all about finding my way back to a place I should have never left: healthy and productive. I invite you to join me on that road.

DLH

Read more at my The Rambling Road weblog…

Aftermath

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The picture you see here is me a day after spending six days in the hospital as a result of acute pancreatitis brought on by hypertriglyceridemia of such severity that I had to have the triglycerides removed from my blood by plasmapheresis. Left unchecked, the condition could have killed me. I’m only 43.

I’m posting this picture here as both a warning and a reminder. I want to make sure I remember how much I suffered during that period, and I never want there to be any doubt in my mind that I helped do this to myself.

Whether we like it or not, we are all very good at lying to ourselves. I’ve spent the last decade or more lying to myself about my health. This outcome has been coming for a long while, but somehow, I thought I would get away with it. Somehow, I thought I could ignore what I knew was happening because it wasn’t going to happen to me.

It did.

As it turns out, I have a long road ahead of me. My body is broken, and part of fixing it is going to mean giving up on the lies. It’s time to face the truth, and the truth is as bruised and ugly as this picture.

If anyone else can learn anything from my experience, it is that it will happen. Take care of yourself now. Stop making excuses. Stop lying to yourself. Do what needs done.

DLH