February 5, 2016

How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.

Mark's first response of "fine" or "good" is probably one of his coping mechanisms. Also possibly a way of trying to have the focus of every conversation not be on his health problems.

Well, I'm here to say, while it's great that he's here to fight another day, he's often not really fine nor good.

Disclaimer: I may think I have amassed a great deal of medical knowledge over the nearly 22 years I've been Mark's significant other, but I am not actually a doctor or nurse. Everything I say in this post or any other is my/our personal experience, observation and opinion.

In a nutshell, it seems that two years ago Mark crossed some arbitrary line from having the chronic diseases that are Diabetes and End-Stage Renal Disease, with complications cropping up from time to time, to everything being one big complication and completely changing our lives.

Yes, he's had heart attacks, bypass surgery, and super scary arrhythmia. He's always been prone to staph infections and blood sugar management is a constant battle for every diabetic. But he was bucking the odds for so long.

I suppose he still is....except....it's different now. Before he could still work part time. He could still handle odd jobs around the house, drive a car and cook amazing meals. He could lift heavy boxes and furniture. Now he can hardly lift himself.

He struggles to pull himself up our stairs every night in order to sleep with me in our bed because he is weak from being over 30 pounds underweight, and can no longer feel his legs from the knees down.

Over the last two years, Mark's dialysis access failed, as did two tries at fixing it. He lost his left great toe and developed a sore on his right heel so bad his Achilles tendon was exposed. The wires used to put his chest plate back together after bypass surgery in 2010 got so infected that a debridement left him with a 7 inch long, 2 1/2 inch wide open wound down the center of his chest requiring eight months of wound VAC therapy and ultimately a muscle flap surgery to close.

He has been hospitalized seven times and spent a month in a rehab facility. His heel healed, but his chest still has a small hole that continues to drain fluid. Most recently, he spent four days in the hospital because of a wound between the ring and pinky fingers on his left hand.

He is losing the feeling and dexterity in his hands. His only good eye now has an angry cornea. He eats like a bird, and sometimes not even that much.

To top it all off, his mind isn't quite what it used to be. It has slowed down, I guess you could say. He doesn't process what people are saying in real time and misunderstands a lot. He completely loses his train of thought; often can't finish his sentences. While it seems easy to point to pain meds or medicinal marijuana as the culprits for this (he really doesn't use either as much as he could), I think it actually has to do with his weight loss and poor appetite. I've noticed that he seems to think clearer when he's eating a lot of protein.

Mark has become very quiet. I used to consistently have to ask him to stop talking so loud. Now I often need him to repeat himself because I didn't hear him. He is always cold because he's lost so much weight (and doesn't hardly move). When he does move, it's very slow, careful, and deliberate.

I asked him one day if he was miserable. He looked kind of pathetic, you know? He said no. He explained to me that he spends a good deal of time finding and staying in the most comfortable position he can. He stays still and calm so as to not disrupt whatever level of comfort he's achieved. Sometimes that means he slumps and hangs his head....which is when I think he looks miserable.

So yeah, in all honesty, he's not really doing very well. Or maybe that's obvious. Because I wouldn't be so busy caring for him and managing our lives and feeling 50% happy and 50% sad (changing from moment to moment), if everything was OK.

I keep hoping that he can stop having sores to heal which deplete his body's resources, and stop needing antibiotics which upset his stomach, and then maybe -- maybe -- he could start doing better.

Like I've said, though, I'm not holding my breath for better.

Ugh. I hate to end on that note, but it's the truth.

photo credit: Wheelchair sign via photopin (license)

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