Remember to Breathe: May 2015

This one was is pure selfishness. It was for me to try to be OK with myself and everything imperfectly perfect about my body. I crossed this one off with a little bit of excitement and a whole lot of nervousness.

My scars. I had pictures of all my scars taken.

First, thank you to Twig and Olive for being as wonderful as ever and once again capturing a moment in our families lives. Courtney made me feel so beautiful. I am telling you, if you live in WI you should check them out, some of the most beautiful photography I am ever seen.

There isn't a part of my body that doesn't have a scar on it. I wear most of them with pride. A sacrifice made in order to keep beating Cystic Fibrosis. Looking at them, they are far from beautiful; yet the story behind them blows me away. I am a survivor, they tell the most detailed story of my war.

I am going to post a few pictures below. But as you can guess, the position of my transplant scar is going to hold me from putting that scar on the blog. I don't want to offend anyone by what they feel they would see. But I will put a few of my other scars.

This is, ummm, very scary for me to do. I have lived my life trying to cover up my battle wounds from the world. The reason? The world isn't ready for it, its human nature to stare and wonder. If I could stop everyone I see and explain it all to them and the reason I have each one, I would feel better, I could do it confidently. So I suppose I am not ready either, I am not ready to not care what people think when they see them. So I beg of you to understand my shyness in doing this, in unveiling yet another ugly result of this killer disease.

Lets start with my transplant scar. Its big, its about 20 inches long. It starts from 6 inches below my armpit, makes a clamshell shape through my ribcage, and ends 6 inches below my other armpit. I had 58 staples to close that bad boy up. It now looks pretty amazing, it healed very well. The interesting part is on my right side of my sternum, you can feel where they cracked me open. I am a little lopsided HAHA!

The chest tube scars. I had five chest tubes after transplant, each about the the size of your finger. I still am amazed that my body handled that many...honestly my body gets little woozy and sore when I talk about all this. I have 3 scars on my left side and 2 scars on my right. Each tube ran through a space in between my ribs and they were stiff, and I could feel it rub against my ribs. Those scars, although necessary, were a pain in my everything...

You all watched as I got my port, and now have it removed. Laila plays with this scar weekly. She likes talking about it, she remembers Mom having the "ball" in her chest and now its just a reminder that she can squeeze mom extra hard without having to worry about it.

My Gtube scar. I had a feeding tube when I was younger. I still remember my first week of high school basketball not sure how to address the thing coming out of my stomach. I could just quickly change with my back towards everyone. I could ignore it and just change in a stall. But it was my first step in just trying to be normal with battle wounds. So, I just got everyones attention and showed them, because I didn't want to have to worry about hiding. In college I had it removed and then as an adult got another one placed, and you were all with me as I got to get that removed too!

The battle wounds that make me the most anxious. I don't wear shorts, rarely wear shorter skirts, and goodness if you can get me into a bathing suit I will most likely have something covering me up! In my early 20s I was placed on an extremely high dose of prednisone and for way too long, and even though my lungs healed, my skin never could. It still is having problems (especially since I am on prednisone for life.)

You will see a few under my arms, and on my elbows, but the worst is my legs. I have stretch marks covering my entire thigh area, and now slowly going past my knees. A Zebra would be jealous of the markings. My skin is weak, and it hurts. I didn't wear jeans for years, and honestly, don't wear them too often now. I've tried to look at them as beautiful, but can never see anything but a disaster. Me telling you all this won't change my mind set although I pray that it would. Yes, I do hope it will help me with the worry of wearing shorts and skirts...I made a promise to myself after I wrote this I would start to do those things!

So this is me. This is my imperfectly perfect scared up warrior body.