I was diagnosed with Crohn's Disease October of 2010. I spent 3 years trying to figure out what's "wrong" with me. Finally a nurse, not a doctor, suggested a colonoscopy. I was expecting the worst, but still hopeful for positive results.
This blog reflects my journey living with Crohn's Disease. I am learning day by day how to live my life and accept Crohn's as a part of me.
Monday, October 7, 2013
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.