Babbling – Author Michelle Devon

December 30, 2011

Well, it’s been about a month since I got out of the hospital this last time. The first time I was in the hospital, they probably let me go home too soon, and the second time, I felt they I needed out of there faster than they let me go. I had a minor surgery the second time, I was overall feeling much better and was more than ready to leave. I still have shadows of bruises from the first hospital stay and still have very purple dark bruises from the most recent one on my arm.

The other day, Lynn was pulled over for speeding. The cop asked if there were any reasons why we were going so fast, in such a hurry. Said, “Nope, just running late for a doctor’s appointment.” Made some comment about the bruises and how I was just waiting for them to poke me. Then there was a joke about Lynn beating me up and leaving bruises on me. The cop laughed out loud and said, “You know,” pointing to the mic on his shoulder strap, “that was all just recorded and the folks downtown can hear it…”

His eyes were sparkling and he was joking with us. You know, cops don’t always LIKE to give tickets. Not his fault Lynn was speeding, right? He was super nice though. I said very loudly, “No, she really didn’t beat me. Promise. I… I… uhm, ran into a wall, yeah, that’s it!”

He laughed again, and I figure someone downtown was laughing at some point if they listened to it too. The funny part about this is, I did fall the other day, and now I’m black and blue from it – bruises on my arm, elbow, hip, side, stomach and knee. Why? Because as I fell, I ran into the wall! Well, I fell into the floor too, then fell on the concrete of the front porch.

I’M A FALL RISK

It’s funny. In the hospital, I was all pissy about the fact they put a ‘fall risk’ bracelet on me. Those bracelets are a pain. They are tight and when you get hot, they stick to you. Well, anyway, I was pissy about it. I hadn’t ever fallen but once, and that was out of a chair when I was acting stupid anyway. But since the last time I was in the hospital, I’ve fallen three times, really bad and – ready for this? – fell out of bed once. Seriously. I rolled over, hit the edge of the bed, feet came down, next thing I know the bed topper is sliding, I’m sliding, and boom, I’m on the floor. At least that time I landed on a pillow. Pillows are much, much nicer than concrete patios!

SO I’M A READER

Recently, I’ve been reading, reading and reading more and more and more about pulmonary hypertension, congestive heart failure, and sleep disorders–all things they are telling me I have. I’d never heard of pulmonary hypertension it until I was diagnosed with it, and then resultant, ended up with chronic congestive heart failure. Lovely stuff to have. I went from being a mostly active and productive person with some minor health problems that affected my daily living to being a person unable to even roll over in bed without assistance and getting winded. I went from spending the weekend at the creek watching my dog swim in the river and throwing sticks and sitting in a hot tub to not being able to walk from my recliner to the bathroom without feeling like I’m going to suffocate and pass out, gasping for breath. Or worse, can’t even walk out my front door without falling. I went from being me to being an invalid. I went from being dynamic to being a drain on my family and friends. I went from being able to cook and clean and work and do things I loved to being able to do almost nothing.

Am I gaining back some of what I lost? Not yet. Or maybe a little bit, actually. I mean, I’m better than I was when the pulmonary embolisms hit, but I’m not BETTER yet. I keep being told that there’s hope, but I’m impatient and this is hard. This is hard.

This.

Is.

Hard.

I love showers. I mean, I just love them. I used to take two showers per day, and now, I have to fight myself to take even one. Hell, some days, I don’t take one. Raising my hands above my head adds to the breathing problems. Drying off knocks my breath out. I am happy and grateful that I can at least enjoy my showers again. It’s just the afterward stuff and the hair washing that’s hard.

IT’S THE LITTLE THINGS THAT HURT THE MOST

But you know what’s funny? It’s not the breathing, the falling, the bruises or the pain that bothers me most. It’s the little things. For example, I can’t shave my legs anymore. Why? For a couple of reasons. 1.) if I nick my leg with the razor, because of the blood thinners, it might not stop or won’t stop quickly and 2.) because of the poor circulation and the risk of infection due to the edema and skin issues, a nick can easily become infected and I end up with cellulitis again. So doc says don’t shave. Fortunately, my thyroid meds aren’t quite regulated, so it’s not like I’m hairy or anything, but I miss having silky smooth legs.

The edema all over my body has caused these strange purple splotches on my skin. They are on my chest, my breasts, my upper arms, my fold at the elbow, my legs, my knees, my belly… they are even a little bit on my neck. These might diminish over time, but similar to stretch marks, they will never go away. My body is ruined.

I told my best friend tonight, “I might never feel sexy again…”

There’s something so wrong with that. I’m not old enough to feel like I can’t be sexy ever again. I’m not the type who puts a lot into appearance, but I do want to look good.

I don’t like what I see in the mirror any more. I just don’t. So I try to avoid the mirrors whenever possible. Somewhere, inside of me, I still FEEL like me. It’s strange when the mirror doesn’t look the way I remember myself looking. It’s a very surreal feeling.

So not being sexy, not feeling like me, not being able to shave, not finding pleasure in the things I used to love–like smell’em stuff. Gosh, I love body washes, lotions, creams, body sprays, etc. I used to spend an hour after every shower brushing my hair, greasing up my body with smelly stuff, doing my nails and cleaning my facial skin and such. Not because I was girly or wanted to look good, but because these things made me feel feminine and beautiful and rich and gorgeous and sexy. Now, it takes so much effort to do these things, I feel frumpy and fat and old and… sick. I feel sick.

DO I LOOK SICK?

So I’ve been asking my family if I look sick. I mean, when I go out in public and people see me, people who don’t know me, do they just see a person who’s let herself go, gained some weight, got mousey hair that’s just piled up in a bun on the top of her head, no makeup, sallow and dry skin, dull eyes, bruises, and who needs to exfoliate like an a bird needs feathers. Do I look sick to them? My family says, quietly, fearfully, “Yes…” they aren’t sure what the right answer is.

Neither am I. Yes, I want to look sick. No, I don’t want to look sick. If I look sick, at least I have an excuse for my appearance. If I don’t, then I just look like crap. Can’t win either way.

DO LOOKS REALLY MATTER?

Does that really matter? Well, if you read my blog, you’ll probably say, “No, it doesn’t matter.. you’re beautiful to us, we love you, looks don’t matter…” blah blah blah. Not that I don’t believe you mean every word of it. But. Stop for a moment. Really, really think about it. You’ve gained and lost over 600 pounds in the past two years, 60 pounds in three days does a number on your skin, let me tell you, then it drops off 75 pounds over a weekend, then a few weeks later, over 100 pounds weight gain, feet so swollen they look like balloons that are going to burst. Skin stretched shiny and tearing purple streaks into it. Your legs are almost always purple. Your skin is dry. You can’t shave. Your eyes are dull. Your hair is weak and dry and not wanting to be healthy like it used to be. You’re heavier than you’ve ever been and you can’t do anything about it, no matter how little you eat or how healthy you try to eat, because you can’t move around and DO anything.

Put yourself there… how would YOU feel?

So yes, I know that looks don’t matter. Yes, I know it shouldn’t make a difference, and Oh. My. God. you have no idea how much I love my family who constantly try to make me feel good about myself and who loves me no matter what. I don’t know what I’d do if I’d had to go through this alone. I just don’t.

Anyway…

I’VE BEEN READING STUFF

And then I read…

I read, and read, and read, and read… and I scare myself. I try to read positive things and negative things, information, case studies, treatments, research. I read it all. And most of it is pretty dismal. Can I beat this? Everyone keeps telling me I can. I keep trying to convince myself that I can, but it’s so hard. It’s just so very hard.

My kids… they don’t get it. They get it, but they don’t get it. My son looked at me one night, when I was getting out of the shower and trying to get dried off. He and I were alone, something that doesn’t happen much (I’m rarely left without at least one grown up taking care of me), and my son was helping me get ready for bed. It was hard for me, gasping for breath. I had to pause frequently between steps and things to catch my breath, take off the oxygen to put on a nightgown, put the oxygen back on, etc. My son, at one point when I was sitting still in the wheelchair trying to catch my breath, put his hand on my shoulder and said, “I’m sorry your life isn’t normal, mama.”

I started to cry and looked at him, choked up, and said, “I’m sorry that because of that, your life isn’t normal…”

We talked for a long time after that. I feel guilty about how much my illnesses have affected his life, and the life of those who love me and whom I love. I know it’s not my ‘fault’, but laying blame or not doesn’t take away from the pain that the struggles cause for us all. The lack of a normal life – like I’ve ever been normal anyway – is tough to take.

So tonight I’m sad. And the more I read tonight, the more the negative is pervading my existence. People die from this. Every day. I could be one of those people. So when the little things start getting me down, I try to move to a place of gratitude that I am still alive, and still kicking, and still fighting, and still well enough to even CARE that life isn’t normal right now – and that it may never be again.

Things ARE getting better. They are. I start physical therapy right after the first of the year. I see two new specialists after the first of the year. I have a sleep study in just a few days (provided I don’t fall on my arse again!) But I have an abscess that came up and if it ruptures, it’ll leave another hole in my skin. I still have a huge hole in my leg that is healing but still hurts something fierce. But then I have some really good stuff too… like: