What I’ve Learned Living with Gastroparesis

hungryWhen I was diagnosed with gastroparesis several years ago, I confess not much in my life initially seemed to change. I had been dealing with severe reflux issues for several years and became full quickly when I ate. Nothing more. My husband had always accused me of having an eating disorder, mistakenly thinking I was starving myself to maintain a slimmer physique. Not so. When my gastroenterologist discovered the source of my problems, everything suddenly made sense. Gastroparesis.

That not-so-bad issue has changed significantly in the past year.

For those of you who have never heard of this problem, let me explain. Gastroparesis is basically paralysis of the stomach, caused by damage to the vagus nerve. The stomach doesn’t pump. It’s a nerve and muscle problem that leaves the stomach unable to do its job.

stomach ache

Food will sit inside for hours, sometimes even a day or longer. This leads to nausea, vomiting, stomach pain, bloating, reflux, esophagus spasms and a host of other less pleasant problems that I’ll not go into here. Most gastroparesis patients live on motility drugs to try to stimulate the vagus nerve, along with intense reflux meds, anti nausea meds and the like. Some benefit from gastric stimulators. Others are required to receive their nutrition through feeding tubes.

Gastroparesis basically feels like you’ve got the stomach bug every single day.

I initially hesitated on writing this blog because here’s the thing: I don’t want to become the poster girl for gastroparesis. Why? Because my illness does not define me.

Superhero kid against blue sky background. Girl power concept

I am not Gastroparesis Girl or Gastroparesis Mom or anything else. I’m Tara. Yes, I live in a broken body, just like you. I’m dealing with the effects of the sin curse on earth just like you. But I am not a victim of my illness. I’m the redeemed, adopted daughter of God.

There are hundreds of blogs out there addressing this topic and other chronic illnesses. Some are written to bring greater awareness to medical issues. Some are a detailed journal of every aching misery involved with a particular condition. Understandable. Living with any kind of ongoing pain builds up a pressure that needs some kind of release. But wallowing in my aches and pains is not the purpose of this blog.

We all go through difficult things. For some of us, it’s physical. For some it’s emotional, mental or spiritual. Dissecting it further, I would daresay we all struggle with a combination of all four on a regular basis. Despite whether we are barely holding it together or dancing in victory, whether we are trying to escape the reality of our issues or are ecstatic from surviving the storm, there are significant things we can learn.

1. Dependency on God. I have good days and bad days. Rapid fluctuations in how I feel don’t matter so much when my days consist of teaching home school or writing from the comfort of my recliner, but I’m also a speaker and singer. That complicates things.

When I’m booking speaking engagements, I have no idea if I’ll be dealing with painful esophagus or larynx spasms that will steal my voice from me or not. I have no idea if I’ll be sick to my stomach or on top of the world. In the past, not being able to control those kinds of things would have sent me over the proverbial edge. No longer. God has turned up time and time again. He gives me exactly what I need for the opportunities He places before me. No more and no less. It’s been a faith building exercise, to say the least but I’ve learned much.

More than anything else, I know that I know that I know He is faithful.

2. Replacing the ‘good’ for something better. Eating out is difficult these days. When your diet consists mainly of applesauce, smoothies and soup, looking over a menu at TGIFridays can be daunting. Discouraging. Especially when you’re out with friends and family happily shoving in their bacon cheddar fries and cheeseburgers.

On days when the very thought of food makes me queasy, I decline the invite to go out for dinner with friends. However, I don’t want to become a social recluse either, especially since I’m usually happiest at home tucked in my pjs and typing away on my computer anyways. So what’s a girl to do?

I’ve learned that when I do go out to dinner with friends, I must replace that something good (food) with something better (building relationships). Food is a necessity but its satisfaction is temporary. I’ve discovered that when my focus is not on stuffing my face but digging deeper into the lives of my loved ones, I leave that time more fulfilled than I ever did before my illness.

Yes, it’s a huge mental shift but it’s been a rewarding one.

3. What I need is so different from what I want. Yep, this is a first world problem. We’ve been spoiled to death in the states by an abundance of too many choices. Too many options. We’ve been lied to and pampered and, somewhere along the way, we bought into the lie that life is all about us.

Most days I want a greasy cheeseburger, or better yet a huge salad filled with cheese and naughty goodies (something I can no longer enjoy). But most days I have applesauce and cottage cheese instead. That’s okay. It’s no different than wanting a huge house or a big, fat bank account. But what I actually need is just enough to get through today.

Have you ever wondered why God gave the children of Israel manna on a daily basis and not a weekly or monthly? If they tried to gather extra for the next day, it would spoil. Why? I think God was trying to teach them dependence on Him.

A recent conversation between my girls made this concept startlingly clear. One of my girls said, “Mom, do you know that our needs are different than our wants?”

Smiling, I nodded. “Yes, I’ve heard that. So what are our needs?”

“Food, water, shelter and God.”

My other daughter chimed in. “And a mailbox.”

I frowned, unsure where her little mind was heading. “A mailbox? Why a mailbox?”

She shrugged. “For Netflix.”

netflix

Indeed, our needs and wants are two very different things. We save ourselves much distress when we learn the difference and find contentment in either condition.

4. Life goes on. I have, and will continue to have, good days and bad days. As much as we all think time should stop when we walk through our valleys, it doesn’t. Babies are born. Children grow. Opportunities come. Dreams are pursued. God changes lives. No matter how I’m feeling each day, the time will pass either way. I want to live life to its fullest, with all the joy and beauty God intended it to be. Knowing He is my ultimate destiny just makes the journey sweeter…and more bearable, especially when my Fridays feel more like unconquerable Mondays. He is with me. He sees. He knows.

All this being said, when someone notices a recent change in my weight, or witnesses the tell-tale signs of pain and asks, “How are you feeling these days?”, I smile and usually say the same thing.

“I’m good. God sustains me.” sustains

He sustains me and will continue to sustain me.

And that’s a pretty great place to be.

I would love to hear from you. Have you battled any kind of chronic problem? What have you learned? 

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8 thoughts on “What I’ve Learned Living with Gastroparesis

  1. I really enjoyed your article! I pray that you will have more good days than bad. I too have chronic pain so I know what it’s like for everyone to seemingly have fun when I’m in pain and rather be home in my recliner. I have fibromyalgia and osteoarthritis. And it like yours – hidden so everyone assumes we are just fine. I do not like to plan things because I don’t know how I will feel the next day. Even my family has no idea how bad I hurt somedays. While everyone enjoys babysitting their grands I have to turn my daughters down sometimes when they need babysitters. I do take care of them sometimes but I can’t as much as I’d like to. I always go to church no matter how bad I’m hurting because that’s where I get my spiritual strength! I also know God blesses the faithful. God Bless You!

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    1. Bless you, Brenda. I understand. I’m so thankful for a Father who knows and a Savior who went through the same physical ailments we have so He could emphasize with our weaknesses. One day these old broken down bodies will be forever changed but until then, we just keep on trucking. 😉 I’ll be lifting you up in my prayers!

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  2. I have similar issues and some days I feel like my faith is the only thing sustaining me. Last week I was in the hospital and I just said the Lord’s Prayer over and over again – it was all I could do. I love your post and hope you continue posting about home schooling and faith with chronic illness.

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