There’s a story behind this picture. It was taken on Christmas Eve in 2008. I’m curious to know what you see when you look at it. On the surface it may look like just a normal picture of me, smiling and holding an infant (my baby cousin.) But if you look closer I think you’ll be able to see that there’s a lot more going on underneath that smile…
A thin, drawn face with eyes that look tired. Scrawny neck and arms. Even my teeth and gums have a hint of pale yellow suggesting malnourishment- certainly not the hearty smile you may have seen in other photos of me. What’s really going on in this photo is that I’m in the middle of the worst flare of my life- one that would last over three years. I was experiencing chronic daily diarrhea, bleeding and excruciating pain.
It had been a long and taxing holiday season. I’ve always been a fan of the holidays because I love and value quality time. And the season always provides plenty of opportunities to gather together to eat, drink and be merry. But this particular year, my body wasn’t having it.
I felt extremely frustrated; like I couldn’t do the things I wanted to do which then made me feel left out. When I did try to venture out the food was always an issue for my tummy and I was left exhausted from the exertion. At a certain point, I decided to lay low.
In fact, I had hardly been out of the house for weeks prior to this picture. Except for the time I tried to make it to a holiday gathering of old friends and was mortified when I had an accident on the way home. I went home and cleaned myself up crying and crying as I did; I was so utterly embarrassed and dejected. I wanted to be “thirty, flirty and thriving” not someone who couldn’t even control her own bowel movements.
Traditionally, we always spend Christmas Eve dropping in on my dad’s side of the family, followed by my mom’s side. Earlier that day, I had gone to great lengths to “dress up” for the occasion. Since my days were mostly spent in pain and pajamas on the couch I hadn’t worn makeup or real clothes in a while and I was determined to boost my self esteem a little by going all out.
I washed, dried and carefully curled my hair. I took my time putting on my makeup adding a massive amount of concealer under my eyes, they were so sunken. I put on a nice sweater and a cute jean skirt which was looser than ever since I had lost so much weight being sick.
I looked in the mirror and was quite pleased! The person staring back at me was somewhat recognizable, like an old friend I hadn’t seen in a long time. I had missed her and when I went downstairs I realized my parents had missed her, too. “You look great!” they gushed. “Wow, we haven’t seen you dolled up like this forever.”
Despite my nervous tummy, I felt happy and confident as we headed over to my Aunt’s house to meet with the family.
Now, I have a huge family. Many people say that but I usually have them beat. My dad is one of 14 children so I’ve got aunts, uncles and cousins coming out of my ears. It’s great to have a big family but it makes for much ado when you have to walk in and greet everyone before settling down at a gathering.
We call it “making the rounds” and I walked in hugging and kissing my family, feeling like I was doing a pretty good job at passing for normal. My family knew I had been sick but since I don’t see them that often I wanted to just sweep that under the rug, visit with my loved ones and have a few laughs.
And I did that. I sat in the front room talking and chatting, my stomach growling with hunger but nervous to put anything in my mouth for fear of having to use the bathroom there.
There was a whole spread of appetizers, tamales, rice, beans, meat, desserts. It all looked so yummy, especially because I was so hungry but I wouldn’t dare chance it. I figured I would wait until we got over to my mom’s side of the family. I could eat a bit then and have more privacy if I needed to use the bathroom the way things were set up over there.
I did everything I could to take my mind off of my tummy and enjoyed some laughs with my cousins. Meanwhile, another conversation was taking place in the kitchen. My uncle had pulled my mom aside in private.
“Phylliss, Tara looks really bad,” he said.
“Well, yes. She has been very very ill. We just don’t know what else to do for her. She’s tried many things but nothing is working,” she replied.
“I’ve never seen her like this.” With a look of serious concern he asked, “Is she going to be okay?”
My mom was somewhat taken aback. By no means was she in denial about how sick I was but here she thought I looked especially good that evening! And so did I!
Obviously, the facade of hair and makeup wasn’t really fooling anyone. The problem was, we were just so close to the situation that we didn’t have the distance from it to notice just how much of a contrast existed between my appearance in that moment compared to my old self.
My bubble was burst.
And it would only get worse. By early January, my GI scheduled me for PICC line surgery for TPN (Total Parenteral Nutrition.) Things had become so bad that she ordered 6-weeks of IV feeding only; I could have broth and juice and that’s it. Whoopee.
When I had an allergic reaction to the first infusion, it would end up extending my hospital stay for 7 days until they found the right mix of nutrients that I didn’t react to. I remember watching the inauguration of President Obama from my hospital bed. Things were happening in the world but it was all passing me by.
I was finally sent home with a CADD pump (to do the daily infusions at home) and a bad case of bronchitis just for fun. Seems I had contracted it during my hospital stay. So now I was hacking up a lung with fever and I couldn’t eat. Certainly not the best way to start out the New Year.
I had been through a war and lost.
If only I had known how to navigate the season in a better way, I certainly would have. But the truth of the matter is that I was just in the dark. In the dark about what foods were right for me, how to handle the stress of the season and most importantly, how to take care of myself in the way that I desperately needed.
Understandably, I also had a really hard time finding joy in a season that was supposed to be joyful.
When you’re living life with Inflammatory Bowel Disease the holiday season can seem like a cruel joke. It tempts one to want to just run and hide with your head under the covers until it’s all over. Or, we decide to just barrel through it in blissful denial until our disease catches up with us and the body says no.
I don’t want either of these scenarios for you this holiday season. And I certainly don’t want you to experience what I was going through in the picture above.
For this reason, I want to invite you to my free training call that’s happening this Thursday, October 24th at 5pm Pacific Time. It’s called “4 Steps to Flare-Free Holidays: a Roadmap for Surviving the Season with Crohn’s, Ulcerative Colitis & IBS!”*
You see, a year after this picture was taken the light would begin to shine on my situation. I was able to find my way out of the dark. And I ended up developing a system to navigate the holidays which enabled me to remain healthy and happy, while steering far clear of the flares!
This 4-step system is what I personally use on myself every year and I want to teach it to you. So, register for the call by CLICKING HERE*. Don’t worry if you can’t make the call live, it will be recorded. Just register, and the recording will be sent to you after the live call. You’ll walk away with a plan of action, in hand.
Here’s to a healthy and happy holiday season. Come join me!
*REGISTRATION FOR THIS EVENT HAS CLOSED. PLEASE ENTER YOUR NAME AND E-MAIL ON OUR HOMEPAGE IF YOU’D LIKE TO STAY UPDATED ON FUTURE TRAININGS: