{"id":585,"date":"2011-12-30T01:50:32","date_gmt":"2011-12-30T01:50:32","guid":{"rendered":"http:\/\/michelledevon.com\/?p=585"},"modified":"2021-01-03T02:12:22","modified_gmt":"2021-01-03T02:12:22","slug":"babbling","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/12\/30\/babbling\/","title":{"rendered":"Babbling"},"content":{"rendered":"

Well, it\u2019s 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.<\/p>\n

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, \u201cNope, just running late for a doctor\u2019s appointment.\u201d 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, \u201cYou know,\u201d pointing to the mic on his shoulder strap, \u201cthat was all just recorded and the folks downtown can hear it\u2026\u201d<\/p>\n

His eyes were sparkling and he was joking with us. You know, cops don\u2019t always LIKE to give tickets. Not his fault Lynn was speeding, right? He was super nice though. I said very loudly, \u201cNo, she really didn\u2019t beat me. Promise. I\u2026 I\u2026 uhm, ran into a wall, yeah, that\u2019s it!\u201d<\/span><\/p>\n

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\u2019m black and blue from it \u2013 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.<\/p>\n

I\u2019M A FALL RISK<\/strong><\/p>\n

It\u2019s funny. In the hospital, I was all pissy about the fact they put a \u2018fall risk\u2019 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\u2019t 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\u2019ve fallen three times, really bad and \u2013 ready for this? \u2013 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\u2019m sliding, and boom, I\u2019m on the floor. At least that time I landed on a pillow. Pillows are much, much nicer than concrete patios!<\/p>\n

SO I\u2019M A READER<\/strong><\/p>\n

Recently, I\u2019ve been reading, reading and reading more and more and more about pulmonary hypertension, congestive heart failure, and sleep disorders\u2013all things they are telling me I have. I\u2019d 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\u2019m going to suffocate and pass out, gasping for breath. Or worse, can\u2019t 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.<\/p>\n

Am I gaining back some of what I lost? Not yet. Or maybe a little bit, actually. I mean, I\u2019m better than I was when the pulmonary embolisms hit, but I\u2019m not BETTER yet. I keep being told that there\u2019s hope, but I\u2019m impatient and this is hard. This is hard.<\/p>\n

This.<\/p>\n

Is.<\/p>\n

Hard.<\/p>\n

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\u2019t 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\u2019s just the afterward stuff and the hair washing that\u2019s hard.<\/p>\n

IT\u2019S THE LITTLE THINGS THAT HURT THE MOST\"\"<\/a><\/strong><\/p>\n

But you know what\u2019s funny? It\u2019s not the breathing, the falling, the bruises or the pain that bothers me most. It\u2019s the little things. For example, I can\u2019t 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\u2019t 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\u2019t shave. Fortunately, my thyroid meds aren\u2019t quite regulated, so it\u2019s not like I\u2019m hairy or anything, but I miss having silky smooth legs.<\/p>\n

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\u2026 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.<\/p>\n

I told my best friend tonight, \u201cI might never feel sexy again\u2026\u201d<\/p>\n

There\u2019s something so wrong with that. I\u2019m not old enough to feel like I can\u2019t be sexy ever again. I\u2019m not the type who puts a lot into appearance, but I do want to look good.<\/p>\n

I don\u2019t like what I see in the mirror any more. I just don\u2019t. So I try to avoid the mirrors whenever possible. Somewhere, inside of me, I still FEEL like me. It\u2019s strange when the mirror doesn\u2019t look the way I remember myself looking. It\u2019s a very surreal feeling.<\/p>\n

So not being sexy, not feeling like me, not being able to shave, not finding pleasure in the things I used to love\u2013like smell\u2019em 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\u2026 sick. I feel sick.<\/p>\n

DO I LOOK SICK?<\/strong><\/p>\n

So I\u2019ve been asking my family if I look sick. I mean, when I go out in public and people see me, people who don\u2019t know me, do they just see a person who\u2019s let herself go, gained some weight, got mousey hair that\u2019s 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, \u201cYes\u2026\u201d they aren\u2019t sure what the right answer is.<\/p>\n

Neither am I. Yes, I want to look sick. No, I don\u2019t want to look sick. If I look sick, at least I have an excuse for my appearance. If I don\u2019t, then I just look like crap. Can\u2019t win either way.<\/p>\n

DO LOOKS REALLY MATTER?<\/strong><\/p>\n

Does that really matter? Well, if you read my blog, you\u2019ll probably say, \u201cNo, it doesn\u2019t matter.. you\u2019re beautiful to us, we love you, looks don\u2019t matter\u2026\u201d blah blah blah. Not that I don\u2019t believe you mean every word of it. But. Stop for a moment. Really, really think about it. You\u2019ve 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\u2019t shave. Your eyes are dull. Your hair is weak and dry and not wanting to be healthy like it used to be. You\u2019re heavier than you\u2019ve ever been and you can\u2019t do anything about it, no matter how little you eat or how healthy you try to eat, because you can\u2019t move around and DO anything.<\/p>\n

Put yourself there\u2026 how would YOU feel?<\/p>\n

So yes, I know that looks don\u2019t matter. Yes, I know it shouldn\u2019t 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\u2019t know what I\u2019d do if I\u2019d had to go through this alone. I just don\u2019t.<\/p>\n

Anyway\u2026<\/p>\n

I\u2019VE BEEN READING STUFF<\/strong><\/p>\n

And then I read\u2026<\/p>\n

I read, and read, and read, and read\u2026 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\u2019s so hard. It\u2019s just so very hard.<\/p>\n

My kids\u2026 they don\u2019t get it. They get it, but they don\u2019t 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\u2019t happen much (I\u2019m 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, \u201cI\u2019m sorry your life isn\u2019t normal, mama.\u201d<\/p>\n

I started to cry and looked at him, choked up, and said, \u201cI\u2019m sorry that because of that, your life isn\u2019t normal\u2026\u201d<\/p>\n

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\u2019s not my \u2018fault\u2019, but laying blame or not doesn\u2019t take away from the pain that the struggles cause for us all. The lack of a normal life \u2013 like I\u2019ve ever been normal anyway \u2013 is tough to take.<\/p>\n

So tonight I\u2019m 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\u2019t normal right now \u2013 and that it may never be again.<\/p>\n

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\u2019t fall on my arse again!) But I have an abscess that came up and if it ruptures, it\u2019ll 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\u2026 like:<\/p>\n