Missing Me

I’ve been getting quite a few emails asking for an update on how things are going, so I thought it was about time to get a post on here about it. It’s funny… I’ve spent the past year telling you stories and sharing with you about how I’ve dealt with different things in my life pertaining to this disease, but it’s taking some getting used to on my part to tell you how I’m dealing with it as it’s happening.

But I also know there are many of you reading this going through your own health struggles, who can relate and might feel less alone in this. And there are many of you who want to better understand how to deal with situations when you run into people who may be going through those struggles, too. So while I don’t want to turn this blog into some sort of medical journal, I’m going to try to keep giving you the real picture of what illness looks like… along with silly stories about my dog trying to eat my thumb. :)

Although I hate to say it, right now my days fluctuate from being about the same as my last update, to some days being much worse. Physically, it’s a huge struggle that I’m trying to adjust to. I spend the first part of the day trying to work through the pain of steroid side effects in my legs that intensifies overnight, and on the “worse” days it’s a writhing pain that can last many hours and is more intense than I have words for. After that starts to get under control, I then spend the latter part of my day dealing with increased pain from the disease as the day wears on. In between are all the other issues with my lungs, not being able to get much of a voice out and doing breathing treatments. Navigating my way through the increased pain cycle is taking some getting used to, and it will most likely continue as long as we’re dealing with the steroids. Which, as of right now, looks to be a very long time. But I am starting to adjust to the idea of it being a slow process, and am trying to balance rest with the desire to not be resting.

Not that I’m stubborn or impatient or anything… :)

For me, one of the hardest things right now is that I really look sick. They say the eyes are the window to the soul and I have to say that sentiment is dead on. Because right now, my eyes are truly the only thing about myself that I recognize. I have had the experience of “blowing up” on steroids many times before, but never in the way I have this time. It reminds me of when actresses in movies will put on prosthetic fat suits, and you can see where they can pull the skin away from their face and reemerge as themselves from underneath. They are nearly unrecognizable, but yet in there somewhere. I know I am still in here somewhere, but not once have I not been completely shocked by glancing at my reflection. It pierces my heart every single time.

I’ve had people I know who are heavier tell me they know exactly how I feel… but the truth is they can’t. They didn’t go from normal to obese in a matter of weeks. The face they see in the mirror is the same face they have always known. Even pregnant women get many months to grow into their skin, and the weird displacement of the extra steroid weight in my face, neck and stomach make it all the more strange. Even my hair has gotten so soft that it’s starting to lose it’s curl… it’s absolutely amazing the changes medications can make to your body. I don’t think it’s something I’ll ever get used to… seeing someone else’s reflection in the mirror or the physical pain of expanding faster than a body can keep up.

But more than all of that, as I said in the beginning, is that I have always been so grateful to not look as sick as I feel. Yes, that can cause it’s own problems, too. When you are sick but don’t look like it, it opens up a door for people to judge more harshly. If you don’t look sick there are unrealistic expectations that are difficult to deal with or explain. But when you don’t look sick, you are also able to escape mentally what you can’t physically. You are able to look in the mirror and see possibility. You are able to be with people without them staring at the neon sign blinking over your head that says, “No denying this woman is feeling miserable…” When you don’t look sick, you get to present yourself however your heart desires. That luxury is gone for me in this moment.

I’ve dealt with eating and body image issues for the greater part of my life, so having this happen to such an extreme degree feels like a pretty cruel twist of fate. As much as it’s a struggle for me, I’m trying to approach it with the whole, “It is what it is…” philosophy – I’m trying to joke about it, acknowledge it, deal with my embarrassment of it. Granted, I’m not going to be taking pictures or skyping with people… I have no desire to show anyone this new face I’ve got. But I decided awhile ago that fear has no place in my life, and I’m not about to start letting it back in now. So, while it hurts… while I hate it… while I would change it in a heartbeat if I could… I’m trying to make it just one more part of dealing with the daily grind. I’m choosing to adapt and adjust as best I can.

I know – with all the pain I am dealing with – this should be the least of my worries, but the reality is that it’s a big part of dealing with illness. And just for the record, before all the pep-talks start :) … I know full well it’s what’s on the inside that counts. I know people come in all different shapes and sizes, and that is a beautiful thing. I’m just saying this isn’t my shape. Or my size. Or my face. And sometimes… I just really miss seeing me.