Hope in My Body

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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.

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Hope in Enemas?

Yeah. I said it. Enemas.It’s okay if your disgusted by the mention of the word, or the process. I was too. But in that full brown paper bag lies my months supply of hope. Hope for remission. Hope for something that works. I have 26 days for these little suckers to do their job before we move on to the big biological drugs. So let me hear you say it.. Enema’s for the win!

I started reading the book May Cause Miracles by Gabrielle Bernstein this morning. For those of you who haven’t heard of or read it, it is a 40 day journey to basically change your mindset and stop being set back by all your fears and instead choosing love and happiness. I’m a sucker for reflection and challenging myself to gain new perspective and I thought a book with that kind of title was pretty much calling my name. Day one was all about being conscious of when fear wins throughout your daily interactions and seeing when fear was chosen over love. Just observing.

Among other things, I was a little surprised by how scared I am of what people think. But looking back, and even in my current situation, my fears about others thoughts controls a lot of my life. And this blog is a huge step against that fear.

I’ll be honest. I was hesitant to post about enemas. It’s not really something that the general population wants to hear about. It might now be something that even my family or friends want to hear about.   But I’m not writing this blog for the general population. And I’m not necessarily writing it for my family or friends. When I first came up with the idea for it and started brainstorming, I began to worry about what people who are closer to me might think. Would they be repulsed, think I complain too much, would they be supportive? Would I be ashamed to put out the details of what I’m going through? The bowels of my thoughts? I’ve ruined dinners before when talking about my new normal, times where I thought the floor would melt away from how hot my face felt from embarrassment for giving a true answer to a question someone really didn’t want an answer to. I never want to see the look on that persons face again. I felt like a monster.

I talked with one of my friends that is also strong enough to kick her own ass (autoimmune disease joke). She has lupus and has been dealing with side effects of medications and flare ups for the past few years, but always kept her sense of humor. We discussed how hard it is to be judged and hurt by people you think would understand. She said screw those people. This is the way your life is now and not everyone is going to get that. It’s up to you now to accept them for who they are, even if they can’t understand you.

So, it’s OK if you’re grossed out about my colonoscopy, or blood, or when I make a weird face and wince because my insides are cramping up in indescribable pain.  It’s okay if you think going gluten-free and soy free is stupid.If enemas give you an “I just ate a lemon” face.  It’s okay if you don’t like what I’m writing. I understand. I’m not mad at you for it.  This just isn’t for you.

I’m writing it for people who are down in the dirty, disgusting, embarrassing and downright scary parts of life and are looking for a little something to pull them a couple of inches further away from sinking into the mucky darkness. Like me. Like my friend with lupus. Like anyone with a chronic illness. Or anyone else who finds themselves in a drab situation.

So, I’m going to continue laying on my left side for 30 minutes twice a day I’m supposed to, and hoping on enemas.

The Journey: Big Ten Basketball 2014 – Adreian and Lacey

“She has taught me to fight through everything…to always continue to have a smile on my face even when things go wrong.”

When I first saw a news feature on Adreian Payne and Lacey’s connection, my heart instantly warmed. I found this video and wanted to share it (not just because I’m a Spartan Fan and its March Madness, Go Green!). There are so many things that AP says in the video that I wanted to quote, but I really liked that he shared what she taught him. Not how it makes him feel, but what she contributed to his life. Not only does he give her some light and happiness while she’s battling a terrible, unforgiving disease, but she teaches him the power of a smile. Of kindness.
And they get to share that with us. Hope sparks hope. Who are you sharing your light with today?

I have good days and bad days, and my bad days are in now way comparable to Lacey’s good days I’m sure. It makes me think, when I’m feeling so terrible and pained, how do I act? Do I smile? Can I smile more? What are others taking away from this? Do people feel better when part ways, or worse?
I don’t want sympathy. I want understanding. I don’t want sadness. I want laughter and joy. I don’t want to be inhibited. I want to be inspired. I’m trying to make a more conscious effort to put this forth. Thank you, Lacey, for your story. You’re an inspiration to us all. I hope you continue to heal and battle and kick cancer to the curb.

Want to support Lacey? Follow her on twitter: @adorablelacey
email her: supportlacey@aol.com
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Lacey Holsworth
P.O. Box 101
St. John’s, MI, 48879