Today we are chatting Celiac, SIBO, and eating disorders….but this isn’t my story.
You will heal. I will help.
Today we are chatting Celiac, SIBO, and eating disorders….but this isn’t my story.
There is still hope. There is always still hope.
I received the below message on Thanksgiving Eve this past year. It’s long, but because I know my readers, like 75%+ of you reading will be able to identify with her story on some level (she’s been through it all).
I have started to write you many times since I found your blog some months ago, but have always hesitated out of fear that I would come across as “that nutty girl that found me on the internet.” The first time I read your story, it brought tears to my eyes. I immediately showed my husband and said “look! She’s ME! (or…I’m HER? Not sure…)” I will tell you my story by way of summary, so as not to bore you.
I spent a great deal of my 20s sleeping. Not that “OMG I feel so refreshed and ready to tackle my day!” kind of sleeping. That “I think I took an entire box of Benadryl and now I can’t keep my eyes open and imma sleep, like, right HERE” kind of sleep. I was constantly inflamed with joint aches and muscle pains and hair loss. When I would wake up from my “naps,” I would literally have to use one arm to move the other arm and my legs to get my body to move. On the plus side, I was losing weight like nobody’s business – I mean…pounds. falling. off. Of course, that was likely because I was crazy in the throes of disordered eating but, you know..details.
Life got worse. My symptoms got worse – like WAY worse. Worse like I didn’t even know existed. For years. And then, one day, my life (at least as I know it) changed forever. I couldn’t tell you when, exactly, that day was…just that it existed. And it existed sometime while I was in law school. My entire body completely freaked out – I mean, like FREAKED out. The primary culprit? My gut. “Good grief!” I thought…what on EARTH is going on in there?
Four years later (seriously – no joke), I finally had what I thought was the answer to my prayers: my doctor, after multiple tests and endoscopy said: “you, my dear, have Celiac disease!” I thought that was the greatest day of my life. Can I fix this by avoiding certain foods? Sure, that kind of sucks, but I’m totally in! Let’s do it!
And it worked…sort of. But I was never actually 100%. That was in 2007 and to this day, I have never been “normal.” After a period of time, some of the non-gut Celiac symptoms subsided. But my gut? It was a hot mess. Constipation. Chronic bloating. Some foods made the symptoms worse, so they were eliminated. Inflammation. Headaches. Depression. Weight roller coaster. Really, just…etc.
I saw doctor after doctor. Smart doctors. Crazy-smart doctors. Mayo Clinic doctors. NYC doctors. Kansas doctors. Denver doctors. Medication after medication for constipation (“Oh, you have slow transit time – we can fix that!”). They did nothing (can I just paint the picture of what it’s like to take a hospital administered laxative after not having pooped for 6 WEEKS and have NOTHING happen other than feeling like a bomb went off in your gut?). Then there was “hey – you have pelvic floor dysfunction! Not to worry – we can fix that!” Countless sessions of physical therapy. Girl, let me tell you…this isn’t like physical therapy for your knee. Ahem.
Then it was “hey – you have SIBO! Not to worry – we can fix that!” Multiple rounds of antibiotics, all to no avail. Pelvic floor trigger point injections…where NO needle should ever, EVER be. Every invasive radiology test known to man. Sitz marker, anal-rectal manometry, defecography, barium-based x-rays, stomach-emptying studies…you get the picture.
Every possible diet: low carb, low FODMAP, no salicylate, more food (feed the bacteria!), less food (dear God, DON’T feed the bacteria!), no: gluten dairy soy nuts eggs legumes artificial sweetener garlic onion rosemary (breathe!).
And still…nothing. I wake up looking like I am 6 months pregnant (also, I’ve had people actually say to me…strangers, even…”congrats – when is your baby due?” You gotta be joking me, dude.). Every single piece of food I put in my mouth sets of a reaction – I can actually feel the bloating happening. It starts in my lower abdomen and gradually moves its way up to the point where even my bra is cutting off my circulation. I gain weight, I lose weight. Every single part of me is constantly inflamed. I’m still chronically constipated. And, just for kicks and giggles, my thyroid now seems to be jumping into the mix.
My current diet consists of plain chicken, carrots, green beans, and bananas. Which I could even tolerate if eating those four foods made me feel better. But they don’t. I still feel like death warmed over every. single. day.
I don’t share this story with you, to which there are still other components that I won’t bother you with, for sympathy. I actually share it with you for thanks. Because in my darkest days, which come somewhat frequently, I read your blog and have some glimmer of hope. That feeling this way ISN’T normal, and that I’m not just imagining these symptoms (my last conversation with my GI was…maybe I’m just crazy? I mean…seriously…am I?!), and that maybe, just maybe, someone, someday, somewhere, will be able to make a proper diagnosis and help me heal. I don’t pray for perfection, or even happy…I truly just pray for peace – physical and mental.
So, on this Thanksgiving eve, I just wanted to say that I am thankful for you…and from a total stranger I just simply say “thank you.” Thanks for giving this Kansas girl a glimmer of hope that peace is possible. Happy Thanksgiving to you and your family!
I’m sharing this message today for the Sunday Reflections because I want you to know that I am constantly getting messages like this, and I want to tell you that if you are where she is at today, know that there is still hope.
One of my favorite posts I ever wrote on hope was Hope from March 31, 2013. It’s short and to the point, but if you’ve never read it, check it out.
Listen, I’m not Tony Robbins. I’m not Jen Hatmaker. And I’m not yet the blog/voice that is able to reach millions.
But I am still here…..writing and sharing very openly and honestly on all parts and pieces of my journey with the hopes that when you read any of the storylines you will feel hope when you need it.
Even if it’s the 24th hour, you should always still have hope because the best might be right around the corner.
If you don’t have time to read these posts daily, but don’t want to miss them, be sure to follow via Bloglovin’ and/or join my personal e-newsletter HERE. I am doing my best to send a once per week email recap of prior week’s posts.
If there is a topic surrounding change that you would love for me to include in this series, please just CONTACT ME.
Healing from Crohn’s and Colitis is the Gutsy story feature today.
Heather Filipowicz is a Gutsy Girl Living Out Her Dreams.
It’s been a long time since I’ve featured one of your stories. I love featuring you and allowing you to tell your gutsy story. Having a Gutsy story isn’t just about living with IBS and/or IBD. It’s about being Gutsy, being fearless, in all areas of your life. We all embrace this in some way or another. The following Gutsy story is from a former client and current friend. I remember coaching her on these thoughts long ago, and I’ve loved watching her step out of her square box. I think you will enjoy it, too!
p.s. Ready to tell your story? Contact me!
Everyone has that dream. You know, that nagging, niggling thing in your mind that you place excuse after excuse in front of. “I’ll do that when I retire.” “I don’t have enough money.” “I can’t do THAT.” “There isn’t enough time. I’m too busy.”
I was that person, and then I wasn’t.
My husband Joe and I always dreamed of oceans – turquoise waters and the sway of palm trees, warm sun on our faces and sand in our toes. Yet, we lived in Buffalo, NY. Buffalo is spectacular in the summer, but come mid-January it is not our ideal living location. We always said “We will move when Logan (our 6 year old son) graduates from High School. Graduation cap goes up in the sky, for sale sign goes in the lawn.”
Then we woke up. We realized that we aren’t guaranteed tomorrow, all we have is today and if we don’t set an example for Logan that dreams are for the taking then we would have failed him, failed us. No more waiting.
We hustled. We researched. We had vision boards. We read books about facing fears and dreaming big. Our mindset changed. We worked on our goal early in the morning and late at night. We decided that now was the time to take the leap because Logan is 6 years old, adventurous and still thinks we are the center of his universe. We were clear on what we wanted and we didn’t waiver.
Our dream became our reality. After two months of split living, on December 7th our family of 3 moved into our home in Wesley Chapel, Florida, complete with sunshine and palm trees. We left behind everyone we knew and loved – family, friends, and colleagues. Joe had a new job, and I was jobless for the first time in my life since I was 12.
The funny thing is once you start dreaming, you can’t stop. With a big dream accomplished, new ones come along. I wanted more for me and my family. I wanted more time with my son, more balance in my life and more control over my future. I didn’t want to go back to working long hours and have my son in daycare day after day. I wanted to be there more for him and to change the future for our family.
So here I find myself, working on building my own business. The CEO of Redefining Awesome is what I like to call it. I want to change my life and the lives of others by getting more out of life. I allowed myself to think bigger and take the leap. Scared? You bet. Guaranteed to work? Nope. Does it seem crazy to many people I know? For sure. But yet again, I think about Logan. I want him to know that dreams are worth pursuing. I want him to know that hard work, determination, sacrifice, and grit have never failed me in my pursuit of anything worth having.
Dreams aren’t these crazy things that only exist in our brains and heart that just sit there. They are real and by not even attempting to go after them we are letting ourselves down. Listen to that voice that keeps nagging your brain and your heart. Taking the leap isn’t easy, but anything worth it in life shouldn’t be easy. Take the leap. Trust me, it’s worth it.
Heather Filipowicz is Redefining Awesome and lives in Wesley Chapel, FL. She blogs about life, dreams, health and parenthood at Sassy Inspiration. She is living life on her terms as an AdvoCare Distributor and Non-Profit consultant. She believes in eating “the gutsy way” and knows that Sarah Kay Hoffman changed her life through her coaching and kindness. Mom to Logan and wife to Joe, she has mastered the art of stepping on Lego’s in the dark, making bone broth and finally embracing her curly hair.
SKH note: Lest what you might think, I did not pay Heather to say those things about me. She added that last paragraph, in italics just as is. I left it in because I adore it. By far my favorite line, “Mom to Logan and wife to Joe, she has mastered the art of stepping on Lego’s in the dark, making bone broth and finally embracing her curly hair.”