Saturday, October 12, 2013

What do you see when you see yourself.....

This may be one of the most difficult blogs I've ever written. It's an immensely sensitive subject, but one that I know other IBD patients face on a daily basis. I want to talk about body image and self esteem. Please don't read this and think that I'm fishing for compliments, or exaggerating about my emotions. I want this to come off as pure honesty. Please see my vulnerability as genuine. Once you are diagnosed with a chronic illness a lot of things change. I always felt that I was a pretty confident person. In high school I was energetic and full of so much life. Of course I had my moments of insecurities, but nothing like today. Not even close. I grew up dancing. A lot of times you'd think that your body image would be distorted because a dancer is supposed to have this perfect, ideal physique. I suppose there were times that I would look at other girls and wish I had their skinny, ballerina thighs. However, I was literally dancing five days a week, and I was in great shape. I never could see myself eating cotton balls, or throwing up in the bathroom. I was more concerned about other teenage topics - especially boys! During college it was difficult because I had gone all those years having my parents take care of me. I gained the freshman fifteen, but always tried to do something physical to stay in shape. The extra weight never bothered me too much. However, my last year in college I fell in a deep depression. I didn't know what I wanted from life, my heart was broken several times, and I didn't love myself. I gained 40 pounds quickly, and almost went into a trance about it. When I looked in the mirror I didn't see a fat person. I was too involved with being unhappy about everything else. When I left college I worked hard to regain my self-esteem. I wanted to feel worthy of life. I began exercising often and focusing on truly loving myself. All of my self. I was in the best shape of my life. When I would go for a run I felt jolts of positive energy through out my entire body. It was amazing. It was amazing that I could look in the mirror and see what I've become. October 2010 I got the news that I was diagnosed with Crohn's disease. Ok, this is something I can live with, I told myself. I can do my best to carry on with my normal life. I never imagined that so much medication would suck the life out of me. Moving from the bed to the couch, or to the car would be exhausting. I lost a lot of weight from barely being able to eat. My mother would come take care of me, and force me to eat a slice of toast, homemade chicken noodle, or at least one egg. She knew how important it was for me to put nutrients into my body. I easily could have gone weeks with nothing but sips of water. I was so weak I wondered if I could ever be myself again. Could I laugh with my family and be the "crazy" Carly everyone once knew? I was furious as to what Crohn's had done to me. Then I fell in love. When you're in love, you kind of put aside all the bad things you feel about yourself. I had someone telling me I was beautiful. It was enough for me to get by, and not completely dislike myself, just the disease. When the relationship ended I went back into my hole. I was willing to stay there and hibernate….forever. My darkness got the best of me, and I'll never know if that contributed to my flare, but I do know that it didn't help. I was again put on steroids and gained 10 pounds in two days; then an additional 2-3 shortly after that. Prednisone is a terrible drug, but during desperate times you will take anything. My face swelled up, and my stomach bloated. I couldn't fit into any of my clothes. I felt guilty, as if I had let myself go. I would get angry, then the next minute cry at what this disease has done to my soul. I didn't want to see my reflection. I would look at my shadow and think, wow, even my shadow has big thighs. It was life changing. The depression sticks, and it doesn't just fade away once you're off the drugs. It's a challenge that IBD patients deal with constantly. We never know if our pants are going to fit. We never know when the next day will be where the doctor hands over a prescription for more steroids. We never know when our bowels will give up on us, and vanish all the nutrients we need to survive, making us skin and bones. We just hope that we wake up and have enough energy to love ourselves, just for one day. It would be beautiful to look in the mirror and not see a distended, bloated stomach. It would be nice not to focus on my thinning hair from my medication. It would be nice not to feel guilty for being concerned about ones vanity. Gosh, it just would be nice to wake up and truly love the body you've been given; in its entirety. But this is the the way I will live forever….there is hope…and one day there will be a cure. *I would like to thank my fellow Crohnies: Christina and Jeremy. They've always given me the courage to move on each day. Thank you for always thinking I'm beautiful, and understanding the moments when I don't see it.

Monday, October 7, 2013

New Path

I will be 30 after the new year. I know 30 isn't old. It just feels like I will be an official adult, and officially a WOMAN. In my twenties I see myself as a young adult, but when I look in the mirror I see a teenager . I am starting to think that maybe age won't really hit me until I see those wrinkles. I also think my perception of my age stems from my insecurities. I am 29 and living back at home with my parents. I am currently unemployed, and I'm struggling every day to live with my diseases. I don't have a husband, a child, or a booming profession. I always classified those things as adulthood, and womanhood. But lately I've learned that there is no right way to walk into adulthood. Sure there's guidelines that we all follow to be perfect in society: school, hobbies, high school, SATs, college, travel, more college, husband/wife, kids, more kids, big house, nice car, and buy a family dog. But we all know that it's impossible for everyones path to go like that. My path was pretty by the book until after college. A chronic illness like IBD can definitely stop the direction of your path. It definitely did for me. Recently I've been having to deal with my new path. I know this isn't going to be the last, but the first of many. That's life. I didn't want to necessarily be sick, indigent, alone, and have to go back to living at home. It made me feel weak and embarrassed. These past few months I have been so angry at Crohn's. I'm not taking money from my parents, and mooching off their groceries because I think it's a fun, free ride. Every day I wake up and wonder when I'm going to be able to be something again. When will I be able to buy my family dinner? Better yet, the day that I can pay my medical bills without any assistance will be the best day. But right now, I'm still going to blame the disease. I'm also going to rise my fists and say it's not fair. Pity party. I'm trying hard to have a clear vision of my future and what it can be like. In my mind I will factor in Crohn's, but it will not be top on the list. I am extremely grateful to my family for their support. I think when you're experiencing a new path, the people you surround yourself with is VERY important. I can happily say that my mother, stepfather, father, brother, and three sisters (Kyara you ARE my sister), all understand my disease, and understand that I'm struggling. I don't have to give them big explanations as to why I'm not feeling well. They don't try to force me to do anything I'm not up for. It's truly amazing how families work. There's no other love like it. Then there's that amazing Crohnie friend that knows exactly what you're going through. That person can literally relate to everything. I have that special bond with my fellow Crohnie Christina Ray. She's my rock. Where I struggle, is with outside support from strangers, acquaintances, and friends. I'm not wanting any of this to come off like I dislike people or even dislike my friends. Also, saying struggle is not meant in a negative tone. I just want to express all who surround and affect me during my new path. Not everyone knows info about Crohn's Disease or Fibromyalgia. I completely understand that. I had only heard of it once while in college, and even then I still had no clue how it affected a person. So I know it's not easy for someone to have a friend recently diagnosed with this disease, and not understanding what she's going through. You can maybe pull up a Google search and scroll to Webmd.com, but even that info will just give you the Cliff's Notes. It's not going to have a breakdown of an average day for a Crohn's patient (particularly a bad one). It won't tell you that the medication used for Crohn's is a form of chemotherapy, and in some rare cases can cause lymphoma. It doesn't say that your hair can fall out or thin drastically, or that you can develop ulcers all around the anus - feels like chards of glass when you're trying to have a BM. They don't tell you that Crohn's can trigger so many other terrible things, like arthritis, or colon cancer. Sometimes patients like me, end up with 3 conditions: Endometriosis, Crohn's Disease and Fibromyalgia. Crohn's can affect a person from their mouth to their anus. People don't know about the other parts of the body being affected, not just the colon; it involves the skin, joints, eyes, spine, liver, and ulcerating skin. The list goes on. They call this the invisible disease because a person can physically look normal or "healthy." When we're at our sickest and unable to hold in food, people love to say, "oh you're so thin, you look great!" That comment would make a Crohn's patient run in the bathroom and cry. She's probably trying everything in her power to gain weight, and get nutrients into her body. We always get the comments of "well, you don't look sick." The worst is when people tell you they know someone who has irritable bowel syndrome - so not the same thing. Or they like to tell you how they know someone who has Crohn's and is PERFECTLY healthy. Well, good for them. I don't need to hear it. Whoever that person is who is telling you that, is most likely lying. Sure, maybe they are having a good run, but they still have those bad days, and they sure as hell remember the flares like it was yesterday. They also probably didn't want to get into a Crohn's conversation with you. Also, people don't realize that when we say we're not feeling well, we MEAN we're not feeling well. Let it go and don't take it personal. I've never in my life had to cancel so much with friends, doctors, and family since I've had Crohn's. Oh, and if you see that I was out at the zoo with my niece and nephew one day, that doesn't mean I'm cured. Maybe I had a good day, or maybe I had to pop so many pills just to get out of bed. So I was walking around the zoo, thinking the animals were speaking to me. I'm not perfect, and I know other people do make an effort to understand what I'm going through. I do truly, and deeply respect my friends who try their best to understand my bumps in the road. Because hopefully they remember that the other Carly is still there. My soul hasn't died because of this disease. I may not be the fun, loud, obnoxious Carly who likes to shake her booty, at this time. But that girl will come out…..even if it's once in a blue moon, I'm still going to be that girl. So I just hope that people respect my necessities to get through this rough patch, and to voyage onto a new path. I am just done with feeling guilty for being sick. I'm also done explaining myself. If I can accomplish those two things, I think my first few steps are on the right path.