My New Normal
I'm glad you are here! I can't believe August is half way over already - school is starting soon and the temps have started to dip a little here which I'm hoping doesn't mean the cold is going to arrive sooner than later.
Today isn't a post about food, although as much as I wanted to share a kick-butt recipe with you, its not on the menu. Last month, I made some delicious granola, and I really wanted to write about it. That kind of granola where you "sprinkle" it over something, and then you just eat a big spoonful of it. Then, I had some changes in my health and I don't get to eat the granola anymore! (Insert pouty face here).
I wanted to write about something that has been a part of my life the past couple of years. I've been pretty quiet about it, sharing with my family and only some close friends. Recently, I've been reading more things on the topic and I felt compelled to share my story with you. I'm sharing this with the hope of bringing more awareness and empowering those that have similar challenges in life.
I feel like I'm a pretty strong chicka - I'm very fortunate to have a wonderful and happy life. Sure, I've definitely been through some really hard things, but who hasn't? We all deal with struggles in our life -- and we push through them.
For the past three years, I've been dealing with a gastrointestinal disease called Gastroparesis. I know what you are thinking...Gastro-what? People tend to immediately think of something that starts with that word as scary, right? "Gastro" associates with some minds as the stomach flu, or as one of those topics that goes into the TMI!!! (too much information) category. Well, kind of. Taken right from Mayo Clinic, Gastroparesis is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally. To make it even more simple: Food in your stomach does not digest properly. What else is Gastroparesis? Its not an eating disorder. Trust me, if you talk to most anyone with GP, they want to eat. The problem is, figuring out what to eat is half of the battle.
Three years ago, we were traveling with friends to Chicago - out to have a great weekend with a fun Cubs game in the books. The night we arrived, we were at a bar and just like that, I felt like I was going to vomit (mind you, at this point, I hadn't had much to drink) and I had all signs of the stomach flu - the sweats, mouth watering, nauseous - you know, the icky stuff. The rest of the weekend was miserable for me but I thought I had a touch of something and I continued on. For the rest of 2012, I dealt with this. It caused some anxiety for sure, because who wants to go anywhere when they think they are going to puke? After a doctor's appointment, I went from being diagnosed with acid reflux ("Just take some tums") to a GI Specialist where I preceded to get tested for Celiac Disease, had an endoscopy, and a barium test. Finally, I went through a test that showed how quickly (or slowly!) my food was being digested. The verdict: 4+ hours. This made total sense to me - if my food wasn't being digested, thats why I was nauseous. My food literally was sitting in my stomach.
There has not been extensive research on GP (short for Gastroparesis). It can be caused by random things - surgeries, the flu, diabetes - or it just pops up, which is termed as idiopathic (unknown reasons). Everyone has a vagus nerve that sends signals to your stomach which contracts muscles to move your food along and with GP, your vagus nerve is damaged.
My diagnosis came a year into my symptoms, so where am I now? I've been on a couple of different medications, including one that can cross an area in your brain that can cause symptoms of a stroke. You better believe I took myself off of that as soon as I learned about the symptoms. I've been through so many emotions and feelings that are unbelievable and I truly never thought that every day of my life, almost every second, I would be dealing with something like this. Every meal, I have to think about what I'm eating, how much I want to eat vs. how much I can eat, what is in the food, how I'm going to feel after I eat....I could go on and on. I've had to excessively limit my diet due to this, including healthy foods. Most anyone responds to me with "But, you eat so healthy"! Which I do, because I've learned what healthy foods I can eat, in moderation. A lot of healthy foods like raw fruits and vegetables can be hard for a normal stomach to break down. When you throw in GP, its much worse.
A typical symptom of GP can be vomiting. I've read stories of people literally not being able to work, move, etc. because they are so, so sick. People in these situations are forced to have feeding tubes, or may have other ways of receiving nutrition without physically eating. I'm extremely lucky in that I've never vomited. If I feel the nausea coming, I breathe through it (yoga has helped me with that). One of my major symptoms is weight loss. Ya know, weight is a really big topic in our world, whether you weigh a lot, or a little, or even if you are just in that perfect area. When people don't know about those everyday battles that some of us struggle with, the comments can be degrading. They can range from "You need to eat more" to "I'm sure you will fine feel after you eat this". Honestly, I would love to eat more! And sometimes I do - and I feel great! The next day, I might feel like crap. In three years, I've lost 10 pounds, give or take some. I've always been a small frame and didn't have much to lose before, so you do the math. Would I love to gain weight? Yes. Would I feel stronger if I gained weight? Absolutely! That has been my goal for the past year. It can be a struggle but I know if I am persistent and work hard, it will happen.
Are you still with me? I had to insert a funny picture here, because without humor, life can be boring!
How do I cope? I stay positive. One day, my man came home to me reading a website that allowed other people to share information about their illnesses. I had read way too much information and literally was in tears, thinking that my life was going to end in shambles. I have a good support system. I'm proactive, I'm an advocate for myself. I will never stop researching this, and will never stop trying to find things that will help me. I also stay active - I exercise almost daily and if I can't make it to the yoga studio or to the gym, I go on a walk. Along with staying active, I've also learned how to let my body rest and take time off when it needs to. I plan out my food like no other - I pack things, bake things, roast things, and eat super small snacks during the day to keep me going. Last summer, I was approved through my health insurance to visit a Nurse Practitioner at the University of Iowa Hospitals and Clinics, where I was able to get on a medication that has helped control my nausea. Recently, I've started acupuncture and I've learned more about myself and other options for my body than I have in the past couple of years. I'm working on taking things out of my diet that can really affect how I feel, which includes grains and dairy. I focus on getting high amounts of protein in, with following a Low FODMAP diet (see resources below). As I'm also going back to school to be in the field that deals directly with nutrition, I have learned so much along the way about this which has made everything just that more interesting for me.
You just read a lot, and you are probably thinking, "What the heck? What is the purpose of me reading this?" Seriously, I could write so much more.
I'm putting this all out on the table because there needs to be more awareness with this disease. Surprisingly enough, August is Gastroparesis Awareness Month, so this is me, opening up to you. It took a year for me to figure out what I was dealing with, and I know that it may take someone else so much longer to help themselves. Be an advocate for yourself - when a Doctor shrugs their shoulders at you and tells you they don't know what else to do for you, take action (yes, this has happened). You may have seen the recent People Article on Lisa Brown (click here) or just this week, the Des Moines Register article on the "starving woman" (Click Here). I keep seeing more of GP pop up and I'm always so saddened by what people go through, but I know that information needs to be shared. As I mentioned before, I'm so lucky to not have all of the symptoms that some people do, but I'm prepared to keep pushing others to figure out how we can reduce those symptoms.
One more for you...
WHEW! I hope you stuck with me. My goal of sharing this is to empower others and raise awareness in regards to GP and similarly less publicized gastrointestinal diseases. Lastly, if you feel like you are dealing with symptoms such as GP or even symptoms that lean towards something completely different, please get help, and ask questions. You've got one life to live and you want to live in a wonderful body while enjoying every second that you can get.
Thanks for listening. I promise next time will include fun pictures from our recent weekend away, and a good recipe!
Gastroparesis Resources that I use:
- Mayo Clinic - GP Info
- Crystal Saltrelli's Website on GP - Life Saver!!! (This is the first resource where I learned how to live a "normal" life. Crystal is an amazing advocate. I have her recipe books, book on GP and I am currently in her private health coaching group on how to include more colors in my diet).
- Monash University - Low FODMAP diet (Great for anyone with tummy issues)