Below is a short video demonstrating a little of my experience with colitis, meeting with doctors, and being treated with Cimzia, an injectable biologic medication. (Don’t worry if you’re squeamish, no needles are actually seen in the film). The video stars a few of my biggest chronic illness supporters, my dog, my cat, and my Hot Hugs Lamb. This trio helps me cope with my chronic pain and conditions on a daily basis. Be sure to check out the Bonus Features following the film. Enjoy!
“Since the day I was born, it seems like the spotlight has been on me. My mom, Tosha, is always telling me to make sure I use my power for good. So, I created ‘A Schweenie in a Silent Film Production’ to put the spotlight on causes that need a louder voice. ‘Cimzia!’ is our first film and seemed like a natural place to start as I watch my mom live with the symptoms of Inflammatory Bowel Disease and a lack of effective treatments everyday.
In general, the symptoms of IBD are not considered “sexy” or polite conversation, so they are frequently ignored in the media. Most celebrities with the disease won’t speak about it for fear of decreasing their sex-appeal and therefore their employment options. Within the general population, those with Crohn’s, Ulcerative Colitis, Indeterminate Colitis, and other chronic illnesses also often feel that they need to hide their symptoms. It is my hope that ‘Cimzia!’ helps people like my mom come out of hiding.”
“Normally I don’t believe in working with the canine species, but this cause is one near and dear to my heart. My goal in making this film, was not only to offer my human mom a place to tell part of her story, but to spread some awareness about IBD and invisible illness. Much of what those with chronic conditions deal with on a daily basis is unknown to most of the people in their lives, causing them to feel isolated and alone. I want others like Tosha to know that they are not alone. I want the general public to know that you can’t just tell by looking at someone what they might be dealing with. And I want the world to know that a lot more research needs to happen to advance treatment options for digestive diseases.”
“Usually I prefer to take a silent role, offering my support with warm comforting hugs to ease emotional and physical pain. However, when ‘A Schweenie in a Silent Film Production’ sent me the script for this film, I knew it was time to take a more vocal role. Sounds funny doesn’t it, taking a vocal role in a silent film? But this project does raise a voice for those with these chronic illnesses and I knew I wanted to be a part of that. Plus the cat told me she wouldn’t let the dog eat me during filming. That sealed the deal.”
“Going from not being able to say the word ‘diarrhea’ to medical providers and never using the phrase, ‘I’m sick,’ even when in the hospital having a total colectomy, to having a film announce my symptoms to the world has been a strange journey. I am honored that ‘A Schweenie in a Silent Film Production’ wanted to tell my story and I hope that it helps others with chronic illnesses to be more willing to discuss their symptoms and experiences, and encourages them to keep pushing for better treatment options.”
Thank you to Jackie from Blood, Poop, & Tears for sharing this documentary about a woman with UC who decides to have a total colectomy and ultimately an internal pouch.
I believe domestic animals have a natural instinct to care. However, it is not just humans that need caring. Watch this video of a dog who becomes a caregiver for a blind dog. Ultimately they save each other – the best possible outcome for a Spoonie-Dish relationship.
More for You:
Other Voices Being Raised:
- Misky is a kitty living in Spain. There she takes care of her mum Nuria, a Spoonie with Lupus. Misky is a great multi-tasker. Recently, while carefully caring for her mum, she also wrote a post for Nuria’s blog Lupie Cave. Check out My Health Mascot to read Misky’s story, and look around the rest of the blog to see how Nuria is stepping out of hiding and speaking up about her Lupie life.
- Cary is an ostomate with chronic illness who runs the blog Rollin Without a Colon. CATharsis is a post written by him about how his cats helped him move to a place of healing. Danusia is his Dish & Soulet. She is the one who rescued the cats in her attempt to rescue Cary and to evolve her Spoonie-Dish relationship. She guest-authored the post 3 Cats & Some Ink discussing these topics. Being a Dish is not easy and I am very glad to see one step up and talk about the correlating emotional stresses.
- Charis runs the blog Full Frontal Ostomy. She is hugely dedicated to raising awareness within and outside the ostomy community and recently did an interview with WEGO Health. Check out her post, Loud and Proud with an Ostomy. As she says in the interview, “It’s not what you see. It’s how you see it.”
- Deb runs a blog called Living in Stigma which seeks to put an end to mental illness stigma through education. Migraines More Likely for People with Celiac Disease discusses research about migraines, Celiac, and other digestive disorders. Be sure to check out some of her other posts. As she writes, “Many people living with mental illness say the stigma they face is often worse than the illness itself.”
Related Posts from This Site:
- Check out my Cimzia story from the beginning in the post I Do Tricks for Treats!
- I am not the only one who had trouble saying diarrhea. Even my GI doctors have shied from such terms! May I suggest you practice saying diarrhea while reading Let’s Caca!:Raising Awareness about Crohn’s & Colitis, IBD Symptoms, and Medical Care?
- Our Family Purple Day photo shoot is what really got Eleanor and Detroit inspired to “go public” and raise awareness for chronic conditions. Check out Tipping Our Top Hats to Purple Day 2012 to see the photos and read a summary of the other great Purple Day events from this year.