To say that I’m struggling right now might be an understatement. I don’t know how to do this. I don’t know how to live with Crohn’s Disease. It affects every aspect of my life and I feel like I am failing…at everything: parenting, being a good wife, being a friend, staying healthy…everything! I don’t have the energy to keep up with life, and it is so frustrating.
I’ve always been a goal oriented person. I set them and I reach them – period, but this disease I have no control over. I have no control over my body. I make a plan for the next day before I go to sleep and I wake up feeling so sick that I all I can do is snuggle on the couch with my son. Your son should only have 2 hours of TV time…please excuse me while I laugh…yeah I’m trying. It seems like almost every day he asks me “are you sick momma? You not feel good?” It breaks my heart, and every time I say “no baby. Momma doesn’t feel good. Let me rest a little and I will come and play with you.” Even now as I write this, tears are streaming down my face. “Are we going to see the ambulance today?” he asks. “Not today!” I say. At four years old he is way too familiar with firetrucks, ambulances, hospital rooms, and doctor’s offices. “I’m sorry you don’t feel good momma…” Insert sob here. Momma is sorry too.
I want so baldy to feel healthy again, to feel strong, and to know that there will be more good days than bad days. I saw a picture today on Pinterest from Flamed-and-untamed.com of real life at home verses how the public perceives you. It’s so true. I feel like I’m living a double life because you can’t see this disease. When we head out of the house I’m dressed, I have make-up on, my hair is done, and for the most part I’m pretty put together. My little guy is pretty much put together and we are on a mission to tackle the day. At home is a different story. I’m a yoga pant, messy bun wearing, hot mess with probably a little smeared make-up to top it off. I try my best to keep up with everything: the housekeeping, laundry, cooking, the dog, the cat, the chickens, dinner, soccer practice, preschool, coordinating MOPS, but really I just want to rest. Most days nothing sounds better than my comfy bed and a movie. I’m a wife and a mom of an active 4 year old, I don’t have time to rest.
I’m having a hard time accepting that this is my life. I don’t see myself as a sick person. I’m both excited and terrified of the new medications that they want me to take. Two different chemotherapy drugs at the same time, awesome! Methotrexate and Humira. I’m told it will make you feel sick, but it will also give you your life back. I’m shooting for let’s give you your life back! Yes! Let’s do it! The other frustrating part is that the insurance companies are dictating my care. I have been denied medication that is proven to work because it is too expensive. “Let’s have her try this medication first.” Ummmm, let’s not. Let’s go for the medication that we know will work. Why do I have to fail on others first? You’re messing with my life here, because you are too cheap. Nice!
I hear my little guy causing havoc in the other room. I’m guessing by the sound of it he is trying to wrestle the dog for the dog bed. Fun, fun. We’ll see who’s winning….oooooo growling. I think the dog is winning, or maybe he’s just riding the dog? I’m not sure.
Thanks for letting me get real with you on this Saturday afternoon. Sometimes it is helpful just to say it like it is. We’ll see what tomorrow brings. Let hope for a great day!
Talk to you soon!
I had no idea just how serious Crohn's Disease was until mine got worse. I was sitting in the doctors office last week listening to him tell me what my treatment options were. I thought I could get over this like you get over a really bad cold, but I was wrong. Every day I will be fighting for my life. Every single day...forever. I dont know how I didn't realize this before. I have really good days and really bad days and days in between. I thought it was normal. I was taking life one day at a time and didn't realize I was getting worse. I didn't realize how much life I was missing.
I found this picture and thought: "this is my life," except it doesn't talk about how painful this disease can be. It doesn't talk about the good things either, which I am learning about. Like did you know that the symbol for Crohn's Disease iz a butterfly? Butterflies are one of my favorite things. I used to tell my husband that if I every passed early I would send him butterflies so that he would know it was me. Fitting huh?
Crohn's Disease is an Inflammatory Bowel Disease (IBD). I think IBD awareness is important. Way too many people have this disease, but you just don't know it. It is invisible. They call people with IBD Warriors. I think that is a perfect name because we are fighting. We arr fighting for our lives.
I will be starting a new Biologic Therapy in a few weeks and it scares me. I was reading about the drug that I will be taking and learned that it is a form of chemotherapy. I just watched my husband go through chemotherapy treatments. My dose will be much smaller and much more spreadout, but I know what it does to your body. But the doctor says it works and that I should reach complete remission. I'm looking forward to that. He says "soon you'll feel like Superman!" Now that will be a greay day!
Until next time my friend!
Hi there! Welcome to Grace In A Glass. My name is Danielle and I am so happy that you are visiting this site today. We all have something in life that we are working to overcome. I began blogging about my struggle with overcoming Esophageal Dysmotility and Crohn's Disease with the hope of reaching others with words of encouragement and hope. Thank you for letting me share my stories with you, and hope you have the most wonderful day!