My Ulcerative Colitis Journey
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When Fear Steals Hope
October 21, 2014: When Fear Steals Hope It took me a few days to recover from my last infusion. It felt different from before. This time I was exhausted and had a killer headache. You know those ones that creep up the back of your neck? Yeah. And it lasted 3 days. Usually I’m good to go after a day and a half. So I consulted google and scared the shit out of myself (not literally in this case) with what could happen from being on remicade. Obviously I already knew all of the side effects. I had researched it to death while I was in the hospital waiting for…
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Show Me the Mummy
Originally Published on October 19, 2014: One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and…
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Hope and Guilt
Originally Published June 22, 2014: Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster. With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy. I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To…
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Hope in My Dad
Originally Published June 15, 2014 Everyone tells me I look like my mom but have the persona of my father. And I love that. My love of books and words comes from my dad. He showed me how reading can create a new world for yourself within different pages, and to look deeper into the illustrations of my picture books to find hidden things that the artist put there that you might not notice on first glance. I still find myself looking deeper when I go through my old children’s stories, looking for what the little piggies have in their hands, or what King Bedgood has in his tub (OH…
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Hope in the Beatles
Originally Published June 5, 2014 Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately. Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling. Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up…
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Hope and Prayers
Originally Published May 16, 2014 I really don’t know where to begin with this post. I’ve been putting it off for a the past few weeks. Why? Well, nausea for one. I haven’t been able to look at a phone screen or read much for the past few days. But the second reason is it’s uncomfortable. Writing it down makes it all real. Makes me face it. I want to punch it in the face. I want to kill it. I hate it. But I wouldn’t let anyone else fight this battle for me. Some days I look in the mirror and have no idea where I get the strength…
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Hope in Being a Warror
Originally Published April 27, 2017 “I am not the victim of the world I see.” -A Course In Miracles I haven’t posted much in the last week because I was scared I’d start delving into the negative instead of staying above the water. I refuse to become a victim of this disease. I would rather be a survivor. But it’s been challenging this last week. So I’m going to acknowledge these negatives as what they are, and move on. Ignoring them is not good, and dwelling on them doesn’t do anything either. So bear with me as I exhale and let out what’s been going on this last week. I…
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Hope in Support Systems
Originally Published April 22, 2014: I have never been as sick in my life as I have been over this last week and a half. I’m starting to feel like there’s some improvement on the horizon though. I wasn’t able to make it to work today, but I did, so far at least, keep my bathroom visits under 10. I don’t know what the deal is but I seem to be the sickest in the middle of the night. Starting around 1 or 2 I’ll be up every few hours with some severe cramping and the usual toiletry images. This happened again last night but I was able to go…
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Hope in My Body
Originally published April 17, 2014 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…
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Hope in the Battle
Originally Published April 13, 2014: Yesterday started beautifully. I woke up with energy, took my yoga mat out the back porch and spent a good hour flowing and connecting. I had plans to get some grocery shopping done for the SCD diet and do some packing/purging of items in preparation of the move, as well as to get out and enjoy the beautiful weather. I was happy, blissful, and feeling like the medications were finally working. Around one in the afternoon I lost my energy, and the evening ended/proceeded with the worst episode I’ve gone through since my diagnosis. This is the thing with ulcerative colitis. It challenges you. It wants…