raven walton

As 23-year-old dance teacher Raven Walton competes on CBS’ “Big Brother” this summer, she’ll be fighting for more than the $500,000 prize. She’s also raising awareness of her chronic illnessgastroparesis, and the gastric pacemaker she uses to treat her condition.

The Arkansas native was diagnosed with gastroparesis at 16. In a pre-show interview for CBS, Walton said it’s possible to actually see her pacemaker in her stomach. She’s asking “Big Brother” viewers to use the hashtag #PacerPower when discussing her on the show on social media.

“Pacer power, ya’ll!” Walton said. “It gave me a second chance at life. And it’s my second heart.”

Gastroparesis is a chronic digestive condition that literally means “paralyzed stomach.” The stomach does not contract normally, preventing digestion of food and leading to symptoms like nausea, vomiting and malnutrition. Though the condition currently has no cure, treatment options include diet changes, medication and in some cases a feeding tube.

The gastric pacemaker, or gastric neurostimulator, is a relatively new treatment in which a small battery-powered device is implanted under the skin and connected to electrodes placed on the stomach. Electrical impulses stimulate the stomach. Again, gastric pacemakers are not a cure and are not effective for everyone with gastroparesis, but some patients find one can help improve their symptoms. Walton’s battle to afford a gastric pacemaker was featured on CNN when she was 15.

Like most people with gastroparesis, Walton wants to raise awareness; in a feature about Walton that aired on KTHV 11 last year, she said she’s hoping gastroparesis can some day have an “ice bucket” moment (referring to the once popular Ice Bucket Challenge). How she’s feeling fluctuates every day, and she knows she may not always be able to do things like dance, so she’s trying to fit in as many experiences while she still can.

“I know one day eventually I won’t be able to do all these things. I know my disease is going to progress to where I can’t. So that’s why I’m doing it now,” Walton said.

Walton’s illness will also influence how she spends the money if she wins — she told The Hollywood Reporter  she isn’t able to have children because of the pacemaker and “different circumstances,” so the first thing she’d do is freeze her eggs.

“[The show] is bigger than me. It’s my future. I’ve been through a lot with my disease and it’s taken a lot away from me growing up,” Walton said. “This is my chance to take some of that back.”

“Big Brother” airs Sundays and Wednesdays at 8/7c and Thursdays at 9/8c on CBS.

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Many people seem to struggle with some sort of insecurity when it comes to weight…but with gastroparesis it’s a unique type of insecurity. You worry about getting too skinny because if you do, people think you’re sick again. You worry about losing weight from your illness and people saying, “You look good.” You worry about gaining weight and people mentioning you should slow down on your eating.

Size always seems to matter with this condition and it can fluctuate. From gaining weight to losing weight and repeat, over and over again. Your clothes never fit you just right as they did before you got sick. Some people who’ve had it their entire lives never have clothes that fit properly. Weight seems so superficial, but having the “perfect clothes” and the “perfect body” has become an ideal.

 

Gastroparesis can hurt your self-image. You try your best to ignore it, but the insecurity always lingers. You wonder if you should eat more or eat less, even if it hurts your body, just please others. To everyone struggling with this, I know how it feels and it’s unfortunate.

Try your best to not listen to the comments about your weight. Block out the negativity even when it seems impossible. Tell people to stop talking about your weight. Try not to be someone else with a different body. Just be you and try to be as healthy as possible. And even when you don’t feel like “you,” you’re still beautiful. Don’t let anyone take that away from you.

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My one year anniversary of getting diagnosed with gastroparesis happened on May 12th. One year of knowing what was plaguing my body. Leading up to this day I was worried I would be a total wreck emotionally. Three days earlier on May 9th, I had a huge exam that had been causing stress for me and my classmates for a while. Having May 12th looming over my head didn’t help in the slightest. It really started to get to me. Thinking about how much worse off I was, how I may keep getting worse, and not knowing the future. The GP diagnosis blindsided me completely in 2016 and was a lot to think about. Especially as so many fears had poured into my head that night after the diagnosis. In the midst of all of this near the anniversary, I got this text from my friend:

“I think you have had a lot of wins, and it is best to focus on those instead of the troubling things that have come up.”

 

It is beyond simple to let the wins slip through the cracks when day in and day out you are stressed, nauseous, in pain and tired. I can get stuck in the monotony and negatives of dealing with this. When you are in the trenches of living with a chronic illness, you can live day to day waiting for things to ease up a little. It is easy to focus on how things might get worse or worry about what your condition will be like in a few years and how that could ruin your life. I know I get stuck in that occasionally, especially with flare-ups. But you have to look back and find your victories, notice your conquered mountains, look to all the moments of sunlight and joy and just simply celebrate the wins.

For me one of the big “wins” was having survived my first year of PT school when it seemed like body was working against me and trying to derail the plan. I have many amazing things set up for the next year. I graduated college a few weeks ago. And even beyond the big things, I had tiny wins that were worth celebrating too. Like enjoying a night out with friends even though I couldn’t eat.

Find the little things, find the big things, write them down and keep a list. On days where it gets hard or scary, look at that list and remind yourself of the amount of times you have won. Remind yourself that deep inside is a superhero fighting and winning on a daily basis. Chronic illness can’t stop you from finding those wins. They are much more joyful and a better focus than the negatives of dealing with a malfunctioning body.

Choose your favorite win and the next time you don’t think you can do it, remind yourself you can. You’ve done it before and will do it again. Plans change and life causes things to turn upside down, but that will never change how much you have already done and will continue to do. Remember, focus on your wins and celebrate them!

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Thinkstock photo via dmbaker.


Nausea, vomiting, dry heaves, pain, exhaustion and malnutrition are just some of the many symptoms I deal with having gastroparesis.

Gastroparesis is paralysis of the stomach muscles, so when I eat, the food just sits in my stomach way longer than it would for the average person. It will sit in my stomach and rot, make me nauseous and make me very bloated. A lot of the time it sits in there so long my body will eventually reject it and I throw up. Eating with gastroparesis is like Russian roulette – you never know if you’re going to go into a flare and get really sick or be OK.

 

My body is trying to starve me, eating becomes scary, I feel hungry but I am too nauseous to eat. My bed becomes my prison because I feel so awful that I can’t leave it. Imagine having a really bad stomach flu that just never went away – that’s my life. I start to miss food, but I associate food with being sick. It’s no way to live. It gets extremely lonely, being sick constantly and always in bed. I don’t get out much or interact with a lot of people, minus doctors and nurses. It’s emotionally and psychically exhausting.

There is no cure for gastroparesis and very few treatment options. I’ve tried many different medications, different surgeries and right now I’m using a jejunostomy tube for feeding. A jejunostomy tube is a feeding tube that is placed in your abdomen and goes into your small intestine, so it bypasses the stomach, which is the problem area. My surgery options right now are a pyloroplasty, which is where they cut out part of your stomach to widen the pylorus so your food can empty into your duodenum. The other is a gastric pacemaker which is an electrical device that goes under the skin and has wires that connect to your stomach and send electrical pulses to move your stomach muscles, in the hopes of reducing nausea and vomiting. Both surgeries are invasive and not guaranteed to be helpful.

The truth is awareness and research for gastroparesis is minimal. We should have more options. We are struggling, we are fighting, we shouldn’t be invisible but we tend to be. I even occasionally have to explain to the doctor what this disease is.

collage of photos of a woman in the hospital with gastroparesis

Gastroparesis is awful, and it’s a giant question mark in my life. Especially when it is diagnosed as idiopathic, which means doctors don’t know what caused it. I don’t know why I was fine for the majority of my life then out of nowhere my stomach muscles just stopped working. We need to raise awareness and hopefully more research will be funded to help lift the giant weight off gastroparesis warriors.

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It’s easy to take for granted the things we expect to always be there. It’s easy to take for granted the basic daily functions the human race was created to enjoy, such as vision, hearing or the ability to walk, to exercise or to eat and drink. It’s ingrained in us and when we are born with it, over time it becomes hard to imagine there would come a day we would have to part with something of this magnitude. Or so I have learned.

At 17 I started to get nausea, after having already struggled with abdominal pain for years prior. It was my normal, even though it’s not normal. At 19 my health status gave way to an innumerable amount of
illnesses. Somehow something damaged my vagus nerve and gastric muscles. Gastroparesis is my diagnosis.

My condition is progressive.

 

I’m losing the ability to eat or drink anything. Food is so not enjoyable for me and while I still have a handful of foods I can handle – for the most part – liquids are worse.

I never in a million years would have imagined this would come. How could anyone imagine this?

But, that is not all. My body is struggling in so many ways. What once came easy for me now has me facing an uphill battle. What I wish others would understand is how lucky they are. Even if it doesn’t feel like it, being alive is a blessing. Being able to meet these basic daily functions is incredible. It’s a miracle in and of itself. Miracles don’t have to be something big like being cured from an incurable illness. For me, I realized miracles are the million little things we don’t think about. The hundreds of functions our bodies perform for survival, because even if my body is struggling, I was still created for something amazing. We all were.

When we are faced with challenges so big, such as the loss of basic functions in the body, it’s confusing. However, confusing as it is, I
now know we were always created to be victorious. We have strength within us that comes out of nowhere during the times we need it the most. While society revolves around food. Delicious new meals and
desserts. TV shows on cooking. Books of recipes with enticing photos. Holidays, birthdays, pretty much every social gathering you can think of. Dates, wedding receptions. You name it, you will most likely find food. Some kind of refreshments. That’s OK. The nutrition found in foods and the hydration from liquids are what sustains us.

I should know. As one who has struggled with malnourishment and severe dehydration I know the devastating toll it can take on the body. But, I also know the victory of making it to even just 500 calories in a day, or 1,000 calories a day. I know the victory and excitement of even just eating a few bites of food, or sipping a few ounces of liquids. It’s easy to take for granted the things our body was created to do, but that’s not me. I’m grateful for life.

What I wish to ask of everyone who has read this is to just try and remember how blessed you are to be able to enjoy a healthy lifestyle of eating healthy and exercising, because it’s a luxury some don’t have. If this is a luxury you are not blessed to have, remember, you were blessed with courage and the ability to come out victorious. Your life still has a purpose, and in courage you will find who you were created to be.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Olarty.


I was texting a friend who pretty accepting of my illness. I was talking about symptoms of my stomach disorder, gastroparesis, and how it was starting to move away from my stomach and to my bowel. He became excited and thought it meant I was getting better. But I knew it was just a temporary lapse in symptoms. At the same time, I was trying to explain that I was in a lot more pain than usual. He replied, “You’ll get through this!”

At the time I just changed the subject. But thinking back, I started to think about how for many chronically ill people, that response to illness is just not realistic. Non-chronically ill people often don’t have as much understanding of illness, especially illnesses that aren’t visible or don’t affect more visible things, like hair growth or mobility. For non-chronically ill people, illness works one way: you get sick, you “power through” or “battle it,” then you “beat it!”

 

Gosh, how I hate the phrase “beat (fill-in-the-blank) illness!” People don’t realize that:

1. Not all illnesses go away.

2. Even if an illness “goes away” or is “beaten,” its mental and physical effects can last a lifetime.

People who live in the pain and isolation of illness can reach recovery. But recovery doesn’t mean “as good as new.” Medical PTSD is a real thing, and many experience it.

In addition, people with chronic illnesses like lupusepilepsyfibromyalgia, postural orthostatic tachycardia syndrome (POTS) and other ailments may live their whole lives with illness. While a number of major treatment updates or selfies in the ER might change on their Facebook, their day-to-day is still filled with pills and doctor visits, and for a lot of people a dull pain or fatigue follows them around. Not to mention memories of holidays and birthdays in the hospital.

I’ve only been ill six months and I’ve already missed two of my favorite holidays – Easter and Gay Pride – due to medical reasons. You might also experience the trauma of watching other chronically ill friends or “spoonies,” as they are called, struggle as their illnesses flare up while you are in relative peace. The last time I saw one of my friends was when they were being wheeled out on a stretcher from the community center we both worked out at before our health took a dive. The next day I had to leave to go to the Mayo Clinic.

So ultimately this is my reality. I have gastroparesis, fibromyalgia and bipolar disorder. I am also transgender – a.k.a. the struggle is real, and it is lifelong. Getting through it is getting through the rest of my life. I will make it through.

Your words are encouraging (on certain days, to be honest). But please stop thinking when I go to a specialist or have surgery or get out of the hospital that I will be “healed.”

Please realize that “making it” for me is me living the rest of my life.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via James Woodson.

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