Bittersweet Birthday


The title is a bit misleading in that I’m having a great day all said and done, so this isn’t really a rant or a whine about anything bad in particular, but more a wistful nostalgia about the year that’s passed and how things have changed so quickly in my life. My family wants to take me out to dinner, someplace upscale and fancy, which is how I love to dine – I’m a gourmet food junkie – but I honestly am sitting here thinking, “Man… it takes so much energy to get dressed up…” I mean, who wants to be exhausted and in pain on their birthday dinner? So part of me wants to just stay home and part of me wishes we were rich enough to hire a gourmet chef to come here and cook for us.

There was no breakfast in bed by the kids. In fact, I’m not sure they remembered it was my birthday until I screamed for them to wake up and get up this morning, then they remembered. Just once, I’d love for them to think outside the box and maybe, I dunno, clean the house, make me a fancy meal, or DO something to make my birthday special besides relying on buying something with cash. That’s pretty well taken care of this year, since they are dead broke… the problem is, they will use the being broke as an excuse for not ‘buying’ a gift or giving a gift, when what I really want from them is to have them think about it and share meaning. Write a poem, clean the house, cook a meal, make something, write a letter, do a collage of pictures, something, anything. But alas, they come from the greedy, break it and replace it throw away disposable generation and if you can’t spend good money on it, then it must not be worth doing, giving, having, etc.

Then there’s my health. Oh, I look in the mirror and I most definitely don’t see a 41-year-old woman. I feel much younger on the inside, but my body has taken a beating the last few years. I have purple striations all over my chest, upper arms, belly, thighs, hips. They are ugly. I looked like a stripped tiger or something, purple and whittish. Garish, really. I hate them. They will never go away. My eyes are watering as I write this, as they always water, from the excess edema and fluid, so I look like I’ve been crying all the time, even when I haven’t been. The saltiness of the fluid around my eyes burns and rubs red too.

I’m still on oxygen. The cord for the concentrator is only 50 feet long, so I feel like I have a leash with me everywhere I go. When I try to go to the bathroom, sometimes I get all tripped up in the cord or it gets stuck on something and I have to throw off the cannula, rush to the potty and have someone bring it to me so I can catch my breath. It’s not fun. I don’t like living this way, but I like the fact that with the oxygen I can feel almost normal when I’m sitting and not moving and it doesn’t hurt nearly as bad in my chest when I do move.

None of my clothes fit me any more, and the few that are new that do fit I hate how I look in them. I know the doc says the weight gain is all temporary and is edema from the congestive heart failure and that it’s going away and will go away and I will lose it all in time but that doesn’t change how I look and feel about how I look right now. I hate the sloshy squisshy feeling of my skin, where I can literally feel the fluid sloshing around inside my legs when I walk. My belly is distended and full of fluid and it sloshes too. By the end of the evening, even my neck and face are full of fluid. I hate it. The say it will get better. I believe them. But man, it’s tough right now.

But then there are some good things, like being grateful I’m alive. I am so, so, so grateful I’m a live. Given how bad things were, it’s a wonder I’m alive, a true miracle, really, and don’t get me wrong here — I am glad to be alive — but I can’t help feeling a bit cheated out of life right now sometimes. Why should I have almost had to die in order to be grateful to be alive? Why did my body have to be permanently changed, ruined, just so I could be grateful? I could have found my gratitude without all the pain and suffering. And I’m still suffering. I’m still struggling. I have a perforated septum. For my birthday, I’d like to have a plug installed in my nose! I have a bad back. For my birthday, I’d like a medication that makes that pain go away without making me loopy. I can’t breathe well. For my birthday, I’d like a set of lungs that do what they are supposed to without having to wear an oxygen leash everywhere I go. I mean, the things I want… I’m so selfish! LOL

I remember my birthday last year. I remember it the year before. They were two of the best birthdays I’d ever had. This year, I know it’s a good day. I’m happy, I truly am, so please forgive me for this whining post that sounds so ungrateful, but I just can’t help but realize I’m another year older but not another year better. This year took me down a turn for the worse, and I’m still recovering. I suppose things like anniversaries and birthdays bring you around full circle, make you contemplate the past and the present and ponder the future.

I find that I’m not so much focused on this birthday, today, as I am wondering what my birthday next year will be like. Will I be well on the way back to being myself again? Will I be me again? Will I ever be me again?

Then I think, Maybe I’ll be me again when I figure out who ‘me’ is. Who am I now? Maybe who I am has to change. I don’t know.

What I do know is I don’t feel grown up yet, so it’s so weird to me to have all these medical problems that I used to attribute to being old! I’m not old though! How did I get congestive heart failure? (Yes, I know even little kids can get CHF – but my mind can’t fathom that!) How did I get pulmonary hypertension? That’s something for other people, not me! I don’t want to be this sick person any more. I’m ready to be me again!

But anyway….

Besides those rambling thoughts rattling around in my brain, mostly, it’s been a good day and it will continue to be a good day. After all, it’s my birthday. The whole world should celebrate! ha!

Don’t think for a moment that I’m wallowing in self pity. I’m really not. It’s just that, this day, in particular, brings so many things into my mind to think about… I’m not even including the fact I haven’t sold a novel yet into the equation or whining about when an agent is going to fall in love with my manuscript and instead of telling me it’s a well-written, good story that they don’t know how to market, instead say, “Yes! We love it. We want to sign you!” Then I can give them all my other manuscripts and be that best-selling author I already know I’m capable of being.

I’m 41… I’m ready to ‘be’ there now. Let’s do this.

Love and birthday stuff,


Think About What You Think


What do you think when you see someone using one of the electric carts in a grocery store?

There’s a reason I’m asking.

I want you to be completely honest with yourself, and I’m not asking anyone to reveal anything to me or this blog or anything, but if you want to put your responses here, that’s okay with me too. I figure I’ll either get a lot of comments on this one or I won’t get any on it… sometimes people LIKE being honest, too honest, and other times, they prefer no one know the demons that lurk inside the mind, the words we don’t say, but each and every one of us thinks.

I have done it too… not only about this instance, but also about other things. We judge. We don’t mean to. Many of us don’t want to. But we do. We have to. I mean, this judging is an important part of being human, an important part of it. Without our ability to make quick, snap judgements, we would frequently put ourselves in danger. We are walking down a dark alley, we see a big, scraggly man who appears to have a weapon in front of us, and we judge him. We need to judge him. We see someone we don’t know acting a little cagey, and we lock the car doors before he gets close to the car. That’s judging him. He might be the most honest person in the world.

Judging is not bad. Judging is not wrong. We’re not condemning anyone to anything. We’re not acting like a jury and awarding a punishment. We are simply making a judgement call. We have to do that.

So we can’t fault ourselves too badly when we see someone and our brains inside our heads instantly make a snap judgement.

So when I ask you what you think when you see someone in the electric scooter carts in a grocery store, I don’t want to know what you convince yourself of afterward, what you think once you think about it, feel about it, whatever. I want to know your instant, snap judgement.

  • If you see that the person is elderly, you probably assume that is part of the reason they are in the cart.
  • If you see the person has a cane, a wrap around a leg, a cast, or some other obvious injury, you probably think it’s because of the injury.
  • If you see the person has no hair, is pale, looks weak or sickly, you probably assume they have cancer and are unable to walk for long distances because treatment and illness makes them weak.

And you would likely think these things, regardless of the weight of the person, if that person had a visible, easy to see, easy to understand physical ailment. The person in that cart could weight 500 pounds, and if they had no hair and were elderly or had a cast on their leg, you probably wouldn’t think twice.

But what if the person weighed 500 pounds and had no other obvious physical disability you could see? Would you assume, that is, would you judge, that they were in the cart because they were too heavy and/or too lazy to walk?

The reason I ask this today is multi-fold.

I’ve never been a super skinny person, but I used to be slender. I was always slender, never really fought too much with my weight when I was younger. Then I end up with thyroid problems and I gain some weight, and then I ended up with heart failure after the pulmonary embolisms damaged my heart, and the fluid retention has caused me to gain, from what my doctor tells me, about 70-100 pounds of fluid weight. This is called BNP – B-type Natriuretic Peptide. It’s something the brain signals the body to produce when the heart begins to fail, and it causes massive edema and fluid retention. I can gain and lose 60 pounds over the course of a few day’s time, literally. Like my skin is a balloon, it stretches and then gets smaller again as the edema fluctuates. My belly gets hard and rigid and full of fluid, and I get purple striations on my skin, similar to stretch marks but going in the opposite directions (instead of up and down, more side to side), and they aren’t as deep as stretch marks. I hate them, but whatever… can’t do much about it. The skin begins to lose elasticity, which then allows me to gain even more fluid retention the next time I get an attack/flare whatever it’s called.

Do I take meds for this? Yes, but they only can do so much and they only work so well. Doc says in a year or so, I should have this all under control, have the fluid mostly gone. I’ll be going to a lymphodema center soon to help me work with bringing the fluid down even more, but they can’t help me yet until the open wound in my leg, which is still about the size of a quarter or a little larger and is still about half an inch deep into the fatty tissue of my calf, is healed.

So in the meantime, I’m stuck. I look fat. I don’t always look sick. But I am sick, with pulmonary hypertension, making it nearly impossible for me to walk any distance without my sats dropping into the upper 70s or lowers 80s. I wouldn’t be able to be at a grocery store if I couldn’t be in a cart or a wheelchair. The carts are easier for me, because then *I* can shop instead of my family having to do everything for me.

And yet, I refuse anymore to use the carts in a grocery store.

And do you know why?

Because of something I read on Facebook the other day… of course, what I read had nothing to do with me in particular. It was said by someone who was a friend of mine on Facebook, but not someone I know well. And I felt this way before I read the comment too. BUT the comments epitomizes exactly what I feared, what I felt people thought.

Someone who had recently had surgery or an injury was using one of the carts in a store and with the cell phone, this person took a picture of themselves using it. Another commenter came along and said, “I thought there was a weight requirement for using the scooters in Walmart.”

Just to be sure no one misunderstands what this person meant, the commenter clarified it when someone else very legitimately misunderstood and said she didn’t know there was a weight limit. The comment was clarified to mean that, basically, you had to be FAT to use the scooters.

And that’s why I won’t use them. I guess, I feel that perhaps if they see me in the wheelchair, they are more likely to think I’m actually sick and need a wheelchair and less likely to think I’m just lazy and don’t want to walk. Even that bothers me, because I still fear that people think this. I suppose I’m lucky in that I still have the bruises on my arms from all the blood work and I still have the scars on my chest from the surgery… but what if I didn’t? What if I looked normal but was just in a lot of pain that day, or the edema had my chest so compressed I couldn’t breathe well. Or any other real medical reason…

….would people still think I was sick. Or would they think I was just fat and lazy?

Yes, I totally and completely realize that this is MY issue. It’s MY problem that I feel this way. It’s MY problem that I worry about what other people think. It’s MY problem that I have this body image issue with how I look right now.

But… if no one ever thought these things, if I had never heard anyone say it, seen anyone look or make nasty snide comments about people they saw in the carts. Had I not myself perhaps thought it a time or two, I wouldn’t be so worried about what others think of me.

So I’m taking full responsibility for my emotions here. I’m sharing this with my ‘blog friends’ about how I feel.

But at the same time, I do want to challenge you, as I have challenged myself, to reserve judgement. Sure, let your mind say whatever it needs to say to make the snap judgements we all need to survive, but then, take a moment and let your evolved and educated brain take a moment, just a moment, to tell yourself, What if this person is really sick? What if I’m wrong?

And then don’t send your negative energy out in that direction. Look, I was young and beautiful once. I never, ever thought I would look the way I look now. But I do. Don’t think for a single moment it can’t happen to you, because I swore it never would happen to me, and massive bilateral pulmonary embolisms that didn’t kill me (thank God!) later, and I’m alive, and so grateful for it, and I’m trying to learn that being alive and sick and overweight and filled with fluid with purple marks all over my skin that used to be so beautiful and smooth and soft… well, being alive is worth giving all that up, if I had to choose. Well, let’s say I’m still working on the emotional aspects of it, but I’m trying. I really AM grateful to be alive. I am.

Anyway, just rambling and babbling… but I hope you’ll just think about it, just for a moment, and realize that looks can be deceiving and you can’t possibly know. It’s all just assumptions and judgements. My point is, you don’t know. You have no idea why anyone is the way they are, and assuming… well, you know what that does to you. We laugh at the things we fear. We scorn and hate that which we’re afraid of becoming. There are more reasons behind a person’s appearance, attitude, looks, personality, emotions and life than we can possible imagine or even begin to think about when we see them for only a moment.

And what you say to them, around them, or where they can hear, or the way you look at them, or purposely don’t look at them, treat them, or comment or act around them does make a difference in their life–I know this, because it’s made a difference in mine and I’ve read and heard from others who have said the same thing, especially those with the ‘invisible illnesses’ that are so prevalent in our society and yet no less real or painful or troublesome to the sufferer. Not one single one of you would probably say anything other than positive, encouraging, supportive things if you knew it was me. How many of you though are absolutely certain that if you saw me and didn’t know it was me that you would respond the same way? I’m not even certain *I* would… and perhaps that’s part of why I worry and feel the way I do.

Thanks for listening… thank you even more if it made you think, even just a little bit. And even more if I made you CHANGE the way you think.

Love and stuff,

© 2012 - All Rights Reserved by Michelle Devon