A Writer's Life Interrupted--Things to be thankful for #crohns

You don't need me to tell you it's Thanksgiving.

From a Crohnie on the SCD diet point of view it can be depressing. Especially when you think about food. I mean there's no dressing, no potatoes, no rolls, no cranberry sauce, but you can have turkey and bean casserole as long as the sauce isn't canned. There there's no pie, no cake, no cookies, OK maybe I'll sneak one cookie or maybe one piece of pie.

I tried that last Saturday night at a friend's retirement party. Only it wasn't pie or cookies. It was Bailey's over ice. You know, a nice sweet sipping drink that tastes a little like heaven. I was sick all day Sunday. So, if I eat pumpkin pie will I get sick? Maybe, probably. Then that means no Christmas Fair on Friday. A trade off. No pie--Christmas Fair. No Christmas Fair--pie.

Seems very unfair.

That's where the acceptance part comes in. I have the GI Monitor on my Android phone. It is the BEST tracker of all things Crohn's I've ever had access to. I recommend it to anyone who needs to track symptoms. You can download the tracker at www.wellapps.com.

There is also a social aspect to the GI Monitor and I was fortunate enough to see a beautiful comment made by another IBDer. She wrote:

Yesterday, I attended a patient meeting for CVID (Common Variable Immune Deficiency) given by the Immune Deficiency Foundation. I met a woman whose outlook was disturbing. She used the tool of a positive outlook as a form of utter denial.

I understand fearing that losses will become too much to bear… and they are too much to bear alone… but I’ve never encountered this odd mix of grief couched in gratitude-terms before.

For the record, grief is healthy and an appropriate response to a difficult diagnosis. It is OK to climb up and over each state of grief, even if you get stuck in some rocky snares. But don’t be so afraid of the darker shades of grief that you refuse to go there.

Go there, but don’t go alone!

Grab a hold of our hands and together it isn’t so scary anymore. Any of us who has been on this journey a long time can assure you that together we can do this and do it well.

Misappropriated gratitude isn’t going to help you climb—a fellow IBDer will. I’m so grateful for you guys. The community of others makes a healthier approach possible and I feel so sorry for that woman—our positives aren’t imaginary or delusional or paralyzed by fear. IBD, CVID, or any chronically difficult disease truly sucks, but we find strength in community and discover that gratitude grows and thrives best in winter as long as we stick together.

Have a lovely Thanksgiving.

Her post made me cry. Crohn's is a difficult disease and she gave me permission to acknowledge the risks we take. We are forced to lower our immune system to make us well, but to make us relatively well; we put ourselves at risk of opportunistic infections like pneumonia or sepsis. Sometimes it’s just a cold or the flu, but other times it can be life threatening. After diagnosis, we need to grieve. You can’t put a happy face on grief.  It is something that must be faced and resolved.

As for myself, I spent a year in anger. The funny part was I didn’t know I was angry until it went away. It took my doctor to tell me there isn’t anything in the world that will make you well, to give me my come to Jesus moment. As soon as I accepted his advice, the anger disappeared and I realized just how angry I’d been.

I’d distanced myself from my friends. Even my dearest relatives I closed the door on. After the 4th of July this year, I went back to my house and stayed inside for the next four days. It didn’t matter that my nieces and nephews were here visiting my sister-in-law, I closed up shop and retreated. I was pissed.

Why was I angry? Because I was out all day in the sun with those I love. What should have been a wondrous occasion was, exhausting.  I snapped at people and they had no idea why. What I should have done was gone home and napped, but I didn’t. I could play all day just like everyone else, and the following morning, once I’d realized what I’d done, I closed my door on the world around me.

It took my doctor to make me realize that it is what it is. It was also at this time, I decided to get serious about treating my health holistically. If modern medicine can do nothing for me, maybe herbal treatment can. If not, then it is what it is. I am no longer angry.

To find people like the commenter above on something called the GI Monitor was miraculous. I don’t even know this woman, yet she gets me and how I feel. Why? Because she’s living it, too.

I am so thankful for people like her.  It is a liberating experience to talk with people who know exactly what you’re going through. 

 So on this Thanksgiving Day and weekend, after giving thanks for my husband, children, grandchildren, daughters, and son-in-laws, I want to say thank you to my new friends on the GI Monitor.

Blessings to all.

(((hugs)))

Louann

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