Focusing on the 'Wins' in Life With Chronic Illness

25
25
0

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!

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

Thinkstock photo via dmbaker.

25
25
0
TOPICS
JOIN THE CONVERSATION

The Challenges and Frustrations of Living With Gastroparesis

488
488
4

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.

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

488
488
4
TOPICS
JOIN THE CONVERSATION

Celebrating the Small Miracles While Facing the Loss of Basic Functions

36
36
0

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.

36
36
0
TOPICS
JOIN THE CONVERSATION

Please Don't Say 'You'll Get Through This' to Someone With Chronic Illness

16
16
1

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.

16
16
1
TOPICS
JOIN THE CONVERSATION

To My Daughter's Teachers: Please Be More Understanding of Her Illnesses

131
131
1

I know you are a good teacher…and I know you really do care about the well-being of my 16-year-old daughter. And yes, I am more than aware that she has missed a lot of school this year. But perhaps you are not aware that recently she received the diagnosis of “significant gastroparesis.”

Let me help you to understand what this means to her and her daily life.

Gastroparesis is the literal paralysis of the stomach. In short, her stomach does not empty properly. On days when her symptoms are flaring, she is dealing with chronic vomiting, diarrhea, nausea, gastrointestinal reflux and stomach pain. She also struggles to eat and absorb vital nutrients. There is no cure for gastroparesis and treatment options are very limited.

Perhaps you are not aware that she is on multiple prescription medications right now to help treat her gastroparesis symptoms, but there are no options left as there are only three drugs approved to treat this condition, and she is not able to take two of them because of her other medical issues. It might also help you to know that our local GI specialist wants her to be seen by a doctor located out of state at a Children’s Hospital who “specializes in treating the real sick, medically complex and fragile kids,” according to the nurse I spoke to by phone recently.

 

I know you are aware of her moderate to severe bilateral hearing loss, and that she has additional medical challenges, as I have sat in IEP (Individual Education Plan) meetings and explained each condition in great detail to you and the others at school. I am sure it is hard for you to relate to…as many of our friends and family members still struggle to fully understand our family’s challenges.

But please trust me that I have seen firsthand how pain affects my child. I have sat with her many nights while she has cried in pain. And, I have been with her through more than a dozen surgeries, including brain and spinal surgery. And, I was the only one with her when she had post-operative bleeding, not one, but two times…and trust me, I can do one hell of a Shirley McClain impression at 1:00 a.m. in the lobby of the hospital’s PICU.

Why? Because I know my child better than anyone else on this earth.

I know in my gut when something is really wrong…call it instinct or whatever, but know I have a damn good track record of meeting my kid’s needs. So please do not question my ability to read her pain levels and know I will do whatever it takes to help relieve her suffering.

Yes, I know it can be confusing, because when the pain starts to get really bad, she begins to shut down. Almost as if willing it to stop. When this happens, you and others might think that she is being lazy, stubborn or just plain rude. But I know differently.

When I see her eyes glaze over, her shoulders hunch and her head drop down, I know she is doing all she can to not give into the pain.

It makes me so angry that my baby girl hurts every damn day, both physically and emotionally.

In addition to dealing with gastroparesis, she is also dealing with chronic pain and fatigue from multiple medical conditions, including chiari malformation, Ehlers-Danlos syndrome, Klippel-Feil Syndrome, congenital scoliosis, congenital heart block, insufficient mitral valve, dysautonomia (causing hypertension) and hearing loss. Let’s not also forget the fact that at times she often feels depressed about her health challenges. Most importantly, please know that the pain and symptoms must be very severe before she will complain, because it has, in many ways, become her normal.

She is stronger than most adults I know.

This child, my beautiful daughter, has powered through premature birth, low birth-weight, multiple medical diagnoses, surgeries, lost hearing and developmental delays, both physically and socially, since the day she was born.

She is resilient.

Throughout her life, she has worked so very hard despite her pain, fatigue and hearing loss and she has become an incredible violinist, student and young lady. And through it all, I have been right there beside her each and every step of the way.

painting of a woman crying

She has the strength of a warrior packed into her petite frame, but when she says she is not feeling well, she means it.

Please do not question her.

And know she continually “powers through” more pain and adversity in one week than most people will in their entire lives.

So please, be patient with her.

And most importantly, please know she does not need to be pushed as much as she needs to be understood.

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

131
131
1
TOPICS
JOIN THE CONVERSATION

What It Really Means to Live With Gastroparesis

80
80
0

First off, let me tell you about my life with gastroparesis (GP). GP is known as “paralyzed stomach.” This means for some reason the stomach no longer has the ability to move food through and out of it. It delays the speed in which the intestines can move the contents. How does this affect me? I worked as a LPN (licensed practical nurse) for 10+ years until I could no longer do my job.

GP is waking up and heading straight for the trash can or toilet to vomit. Waking up every day with body cramps that feel worse than the flu.

GP is gambling my life by taking a medication to treat symptoms – not cure –because the side effects can be life-threatening.

GP is looking seven months pregnant just from three or four bites of food.

GP is never knowing when my bowels will move, either with help of daily laxatives or additional laxatives. Then I have diarrhea and often anal leakage.

 

GP is severe belly pain and often chest pain at an eight to 10 out of 10 on the pain scale.

GP is not being able to eat due to nausea from the smell.

GP is holes in my teeth and hair falling out due to malnutrition.

GP is many trips to get IV fluids for dehydration.

GP is being belittled by doctors who aren’t knowledgeable of my condition.

GP is losing all my friends because they don’t understand why I can’t go out.

GP is arguments with my husband because I couldn’t clean the house.

GP is losing my ability to maintain employment, resulting in fighting the state for disability, thus resulting in a stranger deciding my fate.

GP is losing my independence and having to move in with my parents.

GP is being told, “It’s all in your head,” “All you do is sleep,” “You’re just drug-seeking,” “If you’d move around more, you wouldn’t be so sore,” “You’re just lazy,” “If you’d go off some of those medicines (23 total), you’d feel a lot better,” “You’re worthless” and “It’s not that bad, you’re just milking it so you don’t have to do anything.” I hear these phrases almost every day of my life from the people who are supposed to support me.

Having no income is difficult with GP. I must depend on someone else to help buy meds.

In many ways, GP has negatively affected my life.

But GP has also made me stronger than I thought possible.

GP has made me some of the most amazing friends online who understand my battle. These friends are the amazing GP warriors who fight the same battle.

If I’ve learned one thing from GP, it’s Carpe Diem (seize the day).

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

Thinkstock photo via Pimonova.

80
80
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.