For the May Cause Miracles that I am reading, day 18’s affirmation is I am thankful for my body. This was a challenge for me today.
Today marks one year since I have been diagnosed with ulcerative colitis. April 17th, 2013. And I’m worse than I have ever been. I’ve lost 7 pounds in the past few days. The pain is incredible. Eating is ridiculous. The steroid enemas are not working. I’m going to the bathroom 10-20 times a day. I had to leave work today after almost having an accident.
I spoke with my gastro doctor this morning. She said it’s time. We’ve tried everything to avoid the oral steroids. We tried the lialda, the canasa, the uceris, the steroid enemas and we tried it all again. I went gluten free, soy free, and tried to stay as stress free as possible. But is it hasn’t been enough. Something inside my body just isn’t connecting with the healthy me I want to be. So today, I started Prednisone. And I’m hoping that it works. This was not an easy decision. When I got the phone call this morning that the prescription was being filled, this needs to get under control and this is the next step, I was very upset. I immediately started crying, outside in the driveway while letting my dog out. I felt so defeated. And scared. I’ve worked so hard to get my hormones under control, and I’m in a good spot emotionally, and this could totally screw it up. I tried so hard to see some light, and I just couldn’t.
So I called my dad. I tried to keep it together but as soon as I told him I needed a pep talk I just started crying again. And we talked for a while. I calmed down, and he reminded me how strong I am and how I’ll be able to get through it. I’ve tried everything. And yet I’m still determined. Maybe I won’t get the side effects. If I do, I’ll be aware of it. I’ll know that I’m being crazy because the drugs are making me that way. One step at a time. One foot in front of the other. I really don’t care about the moonface or the weight gain or any of the temporary stuff. It’s the emotional theatrics that I’m scared of. So after I left work, I went and picked up the prescription. I cried again. All the way home. And then I got home and went to the bathroom and keeled over in pain. And the decision was made.
This is supposed to be such a happy time. My boyfriend and I are buying a house. I’m doing really well at my job. I have a great life. Except for this damn disease. And I’m not going to have that be a reason not to keep enjoying my life. I want to be out there.
And that’s the problem. I haven’t been able to enjoy myself the last few weeks. And I told myself that once the disease starts controlling my life and I can’t control it, I’ll go to the oral steroids. It’s time. I want to be able to hang out with my friends, happily. To go on road trips. To enjoy my summer. To work on our new house. To take my dog for walks. To do yoga. To be a good girlfriend, daughter, friend, person to myself. And I can’t do this when I’m stuck in the bathroom. Or laying on the couch. Or sleeping. I need to heal. And if this is what I have to do to get there, then I’m going to do it.
So, today I am thankful for my body. My body is a monster But it’s not an evil monster. It’s so strong, it kicks it’s own ass. It’s a ball of light that is meant to be shared with the world. It’s a vessel for healing, for sharing hope. For inspiring others. For living and loving and laughing and feeling the joys of life from the tips of my toes to the roots of my ever changing hair. It’s not for hiding away inside. It’s not for dwelling in pain. It’s not made to feel sorry for, not to deprive of joy. It’s made to nourish. To provide. To excel. My body provides a haven for my soul. It allows me to love, to feel, to cherish. It gives me opportunities for change. It challenges me. It is beautiful. And it deserves to be loved.
And love is what it’s going to get. So, today, one year after diagnosis. I begin the drug that I tried for the entire year to avoid. I talked to my boyfriend about it when he came home. I get concerned some days that maybe this is too much for him. That maybe this is going to be the straw that breaks the camels back. And then he says “Anytime I start to get bothered by it, I think about how its 100,000 times worse for you, and that’s enough for me to deal with it. You’re so strong. You need to take care of you. Don’t worry about anything else.”
And then I realize that these are the thoughts of my ego. It tries to convince me that I’m not worthy of love, that I’m too sick, too many problems, to much to handle. That I’m a hot mess. Well, ego. I’ve got news for you. Your time for making me feel unworthy and sick is over. This year, this year I’m going into remission. The steroids are going to work. And the Paleo diet is going to keep me there (I’ll touch on this later). I have the ability to heal. This isn’t saying it’s going to be easy. It might not be. But it’s time
I’m not going to stop fighting for my health and happiness. I have hope in my body and my ability to heal.
7 thoughts on “Hope in My Body”
Stay strong girl, you’re amazing ♥
To my knowledge, uceris is an oral steroid, it just affects your gut only. I could be wrong, but that is what I thought it was. While prednisone is a systemic steroid and affects your entire body- that’s why we get nasty side effects.
Thinking positively, steroids should not be a long term thing and maybe this will give you some relief so you can start enjoying your life again.
I am also wondering if you and your doctor have thought about you trying biogenics such as humira or remicade?
Wishing you health and happiness! 🙂
Hi there! Yes, uceris is an oral steroid but is digested only in the gut so you don’t get the side effects. It also didn’t work for me. The biologics would be the next step if the pred doesn’t work! But yes, absolutely thinking positive and ready for healing . Hope you are well!!
okay I just wanted to be sure I was thinking of the right medicine. My doctor recentlyu prescribed me uceris (I was was recently on prednisone in the past and uceris a year ago). I am not sure why the switch, probably the side effects or location of the inflammation. Stay positive. If prednisone doesn’t work, I think biogenics would help you control your symptoms. They helped stabilized mine for a while and are keeping them at bay with some flaring. But I cant really complain from the state I was in last year! Keeping you in my thoughts and prayers! 🙂
I hope the uceris continues to help you! It did seem to keep me from getting worse. I’m pretty much at my worst point I’ve ever been right now, but I know I’ll get through it! I appreciate the thoughts and prayers. Prayers always help!!! I’ll do the same for you. Happy healing 🙂
I started writing a reply that was way too long so here is the short version… You will get through this and I will be with you along the way. Hope you are ok with my forwardness. I just believe healing will happen when given the chance. This too shall pass
Thank you astrid! We will get through it together! One day at a time.