Sparks of Hope

It’s been 52 weeks since my first remicade infusion. I’m rarely rush to the bathroom anymore. The blood that used to show up every time I went has taken a hike. Bloating and gurgling still occur, but rarely. Mostly, and I feel like I should knock on wood and jump into my bed and hide under the covers as I say this, mostly I feel good.
I’m not cured. My life is no where near where it was before. My diet is very restricted. I don’t drink. I carry sanitizer everywhere and avoid sick people because my immune system is suppressed. Sometimes I feel like I’m waiting for the other shoe to drop.The remicade could decide to stop working at any time. I don’t know what will come next.
I’m tired a lot. I tire easily, especially at large social gatherings. It can take me days to recover from long weekends like this.  But the important thing is, I’m able to attend those gatherings. The important thing is, I may not have my life back in the way that it was before, but I have a life again.
This brings me to the reason for this blog post. I’ve spent a lot of time thinking about how I want to move forward with this blog. I’ve met some incredible individuals that I want to keep supporting. I want to keep a part of this community of fighters. I’m not, however, an IBD advocate. That role is currently filled by some superhero and ninjas and doctors and your every day patients and they are ROCKING it. I will happily retweet and comment and like their articles and will continue to refer people to their websites, but I’m not one of them. I don’t have the knowledge or time to research for accuracy. (I’m not sure these people have the time either but they somehow continue to find a way,  thank them for that!).  I don’t have the answers, but I will gladly point someone in the direction of someone who does, and cheer them on along the way.
What I am is learning to live with my disease. And I am so full of thankfulness and gratitude for this second chance at life. At my last meeting with my general practitioner, after looking at my labs from a year ago, I was told that I should have been dead. I. Should. Have. Been. Dead.
I’m not dead, clearly. I’m alive and fairly well and given a chance to really truly enjoy my life. I just turned 27. I’m learning to do a handstand away from a wall. I go for long walks. I read books. I watch sunrises and sunsets. I go to garage sales  with friends and host cookouts and am getting ready to be married in a year. I hold babies and laugh and cry tears of joy because I can.
And I want to spend this 27th year of life paying it forward. I’m so blessed and so grateful for this life and I want to bring this sense of joy to everyone I can. I know that I alone can’t cure IBD or any autoimmune disease. But if I can make someone else smile, and maybe they feel the need to pass it on, then I can do something. I can do something. Doing something keeps me hopeful that it will lead to something greater.
So, the next year I will be focusing on a specific “hopespark” or random act of kindness each week for the next year. Follow on Instagram and twitter #52weeksofsparkinghope  and I’ll be documenting it here weekly. Stay tuned for next week and see what I’ve been up to!

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4 thoughts on “Sparks of Hope

  1. Remicade is wonderful, isn’t it? I’ve been on it for almost two years, and so far haven’t had any problems with it. The change in my health was dramatic. Like you, I worry that the Remicade could stop working at some point, or could eventually cause side effects, but I’ll cross that bridge when I get to it. For now, I’m just happy to have a more normal life – I’ve even been able to add some formerly prohibited foods back to my diet occasionally. Yay for both of us!

  2. Very inspiring words! I was diagnosed with Crohn’s last year and after reading about how you deal with IBD, it inspires me to just do things as normally as I can, even though it may never be the same as before. Thank you

    • Wow! I’m glad you can find a bit of inspiration from here. You just made my night, and I’m going to get back to posting regularly soon, I hope you’re doing well.

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