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Today is one of my favorite holidays! Not just because I’m a American politics and history junkie. Not just because I’m a Patriot. And not just because I absolutely love fireworks. I love this holiday for most of the reasons I love other holidays, it’s an excellent excuse for people to get together with loved ones and eat their faces off! But I also know for people with IBD, Ostomies and other autoimmune diseases/challenges, it’s a tough one. It’s usually very hot where ever you are in the country (unless it’s Seattle or San Francisco) and the food isn’t so IBD friendly.
Well here are a few solutions.
1. Contribute an IBD safe fruit, like watermelon
2. Add some cucumber and lemon or fruit to your water for flavorful drink
3. Grill salmon or veggies instead of ribs. OR eat the inside of grilled/barbecue chicken if you can’t really eat the skin
4. Stay in the pool or indoors to keep cool
5. Wear loose fitting, flowy-type of clothes
I hope you all have a safe and wonderful holiday. This is my first fourth of July without Hippo (he’s with his dad), so my party animal level is down this year. He LOVES the fourth of July, and every year has been so much fun since he’s been born because he enjoys it so. Not sure what adults do for this holiday anymore! LOL! I guess I’ll find out!
Whether you are apart of the Inflammatory Bowel Disease community or not, by now you’ve probably heard of Bethany Townsend, the former model who bared her two colostomy bags at the encouragement of her husband while on vacation. Her picture came across my timeline from The Colitis & Crohn’s UK page and I literally yelled out, “Go ‘head Girl!!” and clapped vigorously!
I was happy for her and proud of her. I was scared for her and relieved for her. I was shedding a tear for her, and I’ve never even spoken to this woman. I don’t even follow her on twitter. I’ve just been where she’s at, and yet…not at all, because she has a courage that I haven’t even found in myself yet. But, now I have no excuse not to.
My life with a colostomy was filled with anguish, fear and and pure sadness. I was ashamed, in pain and confused. My son had absolutely no problem with my “boo boo” as he called it. But I did. I thought I was hideous and felt very alone. Now, realistically I know that I wasn’t alone, but being the only one in my family at that time with a colostomy bag, I felt very alone. Had I seen Bethany’s photo two years ago, I might have been a little more comfortable with myself. I might have gone on a few more dates or played outdoors with my son without worrying if anyone was gonna see the bulge behind my shirt. Bethany, just changed the game for a lot of young girls!
Her story is beyond extraordinary and inspiring. You wanna talk about a fighter and healer. Ms. Townsend should be celebrated for her bravery and perseverance to just not let Crohn’s take her and consume her. People like her are that beacon of hope you seek out when you are first diagnosed and the people you listen to on the days you aren’t sure you can make it through. They say a single picture is worth a thousand words. Ms. Townsend’s photo might have saved a thousands lives as it went viral and has brought an international spotlight to our diseases highlighted by People Magazine and ABC news.
To Ms. Townsend, thank you. Thank you for being so brave. Thank you for lending your voice. Thank you for being an inspiration to so many young people who are too scared to bare their bellies. Thank you for baring your soul. I don’t even know, but I absolutely love you! I am so grateful for you! You are my Hero!
It’s been weeks since you’ve heard from me. Mostly because it’s been weeks that I have functioned without some sort of challenge. Let’s see the last you heard from me I had received my first Remicade infusion treatment. That is when it all got rather…nutty, as Hippo would say. Within a couple of weeks of my Remicade infusion session I had a packed agenda. Hippo was graduating preschool, we were going to Washington D.C. for the CCFA Day on The Hill, I was being honored by the LA Chapter of CCFA during the Take Steps LA Walk and then my baby boy would be going to Texas to visit his father for about 6-7 weeks. Yes, my life was moving in a bunch of different directions and chock full of life changing, emotional, exciting activities. The more I tried to plow through, the more nature and my body fought against me.
First Jax and I found ourselves fighting allergies, willing it to not turn into Asthma attacks, as we both have allergy induced asthma. And then suddenly the pain in my tummy and pouch became more and more painful and frequent. My sleep had abandoned me and I was surviving on water and little food. Something told me to call my gastro, who suggested I go into the ER. But the more I thought about driving myself, the more painful the cramp in my pouch got. So the next phone call was to my mother, who was unable to take me for a few hours. She asked me to hold tight. I told her, I could wait. But in reality, I felt like my pouch is about to explode. I was on the floor in my bedroom in tears, curled up in a ball. I had managed to get Jax looked after, so he never saw what was happening to me. By chance my mom was able to leave because her client was empathetic with my health situation. I was fortunate to get in touch with my brother who helped me down stairs to my mother’s awaiting car after I had fallen down a full flight when I lost my footing. I was diagnosed with pouchitis, dehydration and exhaustion. I was kept in the hospital for five days and in just enough time to make it to Hippo’s graduation with enough strength to get dressed up and FaceTime his father into the ceremony. But I was grounded. There would be no flying to DC or advocating on The Hill for me and Hippo. I wasn’t even sure I would make it to my walk.
But I did. I made it. I couldn’t exactly walk the full walk…actually, I had to stop after a few years from the start. But Jax led them out and I took to Instagram & Twitter to tell the story of all of those IBD patients and supporters that came out on that sunny Sunday in Santa Monica. We raised over $4k for Team Crazy Creole Mommy. I was not in Washington, but I was still raising my voice for change. But that night I had a hard time going to sleep because of the sore throat, tiny wheeze in my chest and watery eyes. Yes, Jax had gotten
and ear infection and I had just become a petrie dish of disease. I was feeling awful, sore and in pain…and my Hippo would be leaving a couple of days to be away from me longer than he ever had in his whole life. I was sick, snappy and emotional. I cried in the middle of the night and I tried to plow through my days. My arthritis was completely flared up and my heart was completely broken. I couldn’t even spend my last few days with Jax without the fog of illness. Then he was off to Texas for the entire summer until the time would come for him to start elementary school.
Yes, it’s been quite a struggle…but I’m back! Stay Tuned!
June 3rd, 2014, 3:30am: I look at the clock on my computer, that’s what it reads. It’s late…or rather it’s early. But I smile because I can finally feel my eye lids starting to droop. Once again it’s been a night of chronic pain and no sleep. It’s also the night before my first Remicade infusion. I’m sure that there were some nervous jitters also adding the to the disruption of sleep. I’m really not sure why I was nervous about the infusion. I’ve had infusions before. I’m familiar with Remicade and all of it’s possible side affects, etc. And it was being done at a familiar place. Why was I nervous?
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I was just about to go bed. I had put on my pajamas and was drinking my last sips of water when I checked Facebook for the last time. It’s World IBD Day, so I was just looking for some more updates from people in the community and some of my friends who are sick and have been posting updates. I should have just gone straight to bed like Dr. Samadi told me I needed to start doing at 9pm. But I didn’t. I ignored the burning fire in my back and eye and checked Facebook. And my fellow IBD advocate and now friend, Kelly posted something on The Purple Project page about another advocate, Alex Davidson. Alex is a Crohn’s patient who has been having a very bad few months, well year, but in particular the last few months have been extremely exhausting and painful for Alex. And over the the last couple of days, Alex’s friends and family have informed the world through her foundation’s website facebook page that it didn’t look like Alex would be coming home from the hospital soon. As of yesterday, they feared that sweet Alex wouldn’t be coming home from the hospital again. Alex was dying. Alex was dying from complications from Crohn’s. Alex was at that stage that I was at when the steroids stop working, the anti inflammatory meds stop working, the pain meds stop working and nothing stays in your body. I was fortunate enough to be able to have my last resort work for me, surgery. Alex, was out of options. And as I scrolled through my facebook timeline, I learned from Kelly that Alex had lost her battle with Crohn’s. In an interview Alex expressed that she was so sick, that she didn’t think should would make it to her 21st birthday. Alex died earlier tonight. She was 20 years old.
God Bless you, Alex! And thank you!