When Doctors Failed Me

In this day and age, we are raised to believe that doctors can and will diagnose and heal us. We are taught that when we are sick you go to the doctor and they can easily figure out what is wrong with you. Then, they prescribe medications to fix the problem and life goes back to normal.

One Day Before Little Bear was Due

As an adult, I learned that this is not always true. My first experience of this side of health care came when I was pregnant. I was newly married and living across the country from my family. The day I found out I was pregnant was also the first day I had “morning sickness.” For me, morning sickness was a lot more than normal people. When I say constant, I mean severe and extreme. The first time I went to the Urgent Care/Emergency Room on base, they asked how many times I had thrown up. I didn’t have an answer for that. I had not been counting. I just knew I was extremely dehydrated. After getting fluids I felt somewhat better, but nausea did not really abate.

Almost 15 weeks pregnant and spending a week in the hospital

The next day, I was sick as a dog again. After my first trip to the hospital, I started counting how many times I threw up each day. I usually gave up somewhere around 80. I made trips to the ER for IV fluids and IV nausea medicine multiple times a week for the first half of pregnancy. The staff recognized me when I walked in the door. My doctor’s appointments always went a little like this….
Doctor: “How are you feeling?”
Me: “Horrible, I am still throwing up all the time and needing IV fluids.”
Doctor: “Eat saltines in the morning before you get up and make homemade chicken soup for dinner.”
Me: “I wish any of those would stay down.”
Unfortunately, it took nearly 14 weeks before I was diagnosed with Hyperemesis Gravidarum which lingered my entire pregnancy.

January 2011 (About the time Gastroparesis Symptoms Began)

My first taste of medicine with a doctor who did not listen or care to find the cause or real answers for my problems was terrifying. It was just a trial run for what I would go through with later medical issues and doctors who did not seem to care about my well being.

The second time that I had this issue was starting in the fall of 2010. I had several stomach bugs that fall and winter and nausea and vomiting never went away. At the time I was going to the doctor on base and their response was always it must be stress or anxiety. It wasn’t. When tests came back normal they sent me to a gastroenterologist, also on base. They did numerous tests as well and found nothing so they continued to think it was stress. When I told them it was not stress, they asked if I had an eating disorder. I knew it was not that either, but they persisted with their stress or eating disorder ideas. After 15 months, moving and getting a whole new team of doctors, I was diagnosed with gastroparesis.   

April 2012 (After diagnosis and new medications for GP)

So what do you do when you are sick and your doctors are not helping you? You push onward. You advocate for yourself. If you cannot advocate for yourself, find a friend or relative that can help you fight. There were days when all I wanted to do was cry because I was tired of being ignored. There were days when I broke down in tears in the ER or the doctor’s office. There were also days when my husband had to be my voice because I was too sick and tired to speak up for myself.  You know your body better than your doctor does. You know how you feel and you know what is normal for you. If I had not kept fighting, I would never have gotten diagnosed with Hyperemesis Gravidarum or Gastroparesis. Keep up the fight! Get the answers and the help you need.

Looking good or being sick? Can it be both?

Cleaned up and going to church

You look great! That’s something every woman wants to hear, right? Of course, it is. We all want to look our best. We all want people to see us as beautiful. I love to dress up. I love to look nice. With chronic illness looking great is a double edged sword.  

When I leave the house, I want people to see the good, but I also feel like getting dressed and looking nice is like putting on a mask. Few people know how bad I really feel on a day to day basis. When people see me out and about, they think I must be feeling better and maybe I am even well.

What they don’t see is that I barely dragged myself out of bed that morning or the more likely story, that my husband and son woke me up every 10 or 15 minutes reminding me it is Sunday and they are waiting for me so we can leave for church. I throw on a dress because most of the time a dress does not put pressure on my nauseated and bloated abdomen. (Thanks, gastroparesis.) Then, I put on just enough makeup to cover the bags under my eyes (thanks to chronic fatigue syndrome and fibromyalgia) and a touch of blush to cover the ghastly pale hue of my skin. Run the brush through my hair a couple of times and voila, I am walking out the door and usually running only a few minutes late.

On a bad day

On the 15 minute ride, I usually close my eyes and try to get a few more minutes of rest. Then, we get to church and I smile and talk to people and rarely does anyone know I am sick except for the few people who know me well and even those selective few rarely know the extent of how I feel on a daily basis. Then, when I get home from such a simple and relaxing outing as going to church, I lay down and rest for the entire afternoon and evening.

Just a normal day

That double edged sword of looking great and not looking sick can be nice for a couple of reasons. I don’t have to explain how I feel to everyone. I also get compliments that I look good, healthy, etc. Looking presentable also makes me feel a little bit down because few people know how I really feel. What makes it even sadder is that likely I have encountered plenty of people like me out there that I am neglecting because I have no idea they are sick either.  

August, Gastroparesis, and Botox

It is August. To some that just means the dog days of summer or time for the kids to go back to school. For me it means it is Gastroparesis Awareness Month. Gastroparesis has been a part of my life for nearly 7 years now. As many of you know I spent almost a year and a half with stomach issues that no one could figure out. Finally, in 2011, I was diagnosed with Gastroparesis. My Gastroparesis is idiopathic, meaning they have no idea what caused it.

After my diagnosis, I drastically changed my diet and started medicine that helped immensely. My weight loss finally leveled out and my symptoms were minimal compared to what they had been. I stayed at a fairly nice level for several years. I had nausea every day, but it was a tolerable level. There was no daily vomiting or major weight loss.

Then, this winter all that changed. All of a sudden, for no known reason, my Gastroparesis flared up. My gastroenterologist had no new medications to try since I am already doing all I can do for it in daily life. At this point, I was going to the emergency room every couple of weeks for IV fluids and IV nausea medicine.

My gastroenterologist did offer one thing that I had never tried before… Botox. Yes, you read that right, Botox. The Botox is injected into the pyloric sphincter during an upper endoscopy. I was nervous about this, but my husband and I didn’t know what else to do. We talked and prayed about it for a couple of weeks and then called my doctor to schedule the procedure.

They told me it helps some Gastroparesis patients. I was nervous that I would be one of the ones that it would not help. Thankfully, it helped me more than I could imagine. After about two to three days, my nausea was back to it’s normal levels. I didn’t have to go to the ER again for IV fluids.

Waiting to get called back for my procedure

In the nearly 6 months, I have had minimal symptoms. My nausea is mostly back to its daily tolerable levels. I still take my normal medicines for my Gastroparesis and maintain my low fat, low fiber diet.

The one downside of this procedure is that the effects of the Botox can wear off after six months. I am on month five and I am starting to notice a slight increase in my nausea. I cannot tell yet if it is just the normal cycle of my Gastroparesis symptoms flaring up or if it is the Botox wearing off. For me the Botox procedure has given me much needed symptom relief and I will do it again as needed.

Take a moment and wear green for Gastroparesis this month. Show your support for the many who suffer from this terrible condition.

Cinnamon Sugar Pretzels

I love salty and sweet snacks. Salty and Sweet is my favorite snack food category. When Popeye and I got married his sweet grandma sent me a recipe for a salty and sweet snack he loves. When I read the recipe I was thinking it sounded a little odd, but it isn't. It's really perfect.

Pretzels Before Being Microwaved

Salty and Sweet - Cinnamon and Sugar - Crunchy Salted Pretzel Nuggets.... What gets better than that? Basically nothing. One of the best things about it is that it is gastroparesis-friendly, or at least enough for my GP. The one problem with this snack is I always manage to eat too much of it!

This recipe is ridiculously easy.

Ingredients:

1 pound pretzel nuggets or whatever 1/3 cup sugar 1-2 tsp cinnamon 2/3 cup vegetable oil

Directions:

Mix oil, sugar, and cinnamon. Pour over pretzels in a microwave safe bowl.
Stir until all the pretzels are coated with the sugar mixture. Microwave for 2 minutes. Stir.
Microwave again for 30 seconds to 1 minute. Stir after each 30 seconds or 1 minute. They will probably need 5-6 minutes total in the microwave.

Real Pants or Not?

I never wore leggings until after I was diagnosed with gastroparesis. Now I love leggings and yoga pants. They are my favorite pants. When eating makes me bloated, not your normal bloated but a painful balloon in my belly kind of bloated, you do what you have to do. Jeans are not an option on those days.


Not wearing jeans every day has been a huge sacrifice for me. I always wear jeans, always have. They are my favorite pants, but when I am bloated they really hurt. I had no choice, but to give in to my bloated belly and find alternatives.

I started with dresses. I love a good dress. However, dresses are not good for working in the yard and garden. They are not good for laying in the hammock. A dress is not always an option. So, you guessed it... I turned to yoga pants and leggings.

If you would have asked my grandma she would say that leggings are not real pants and no one needs to be wearing them out in public. My dad would agree with her. Talking on the phone with my grandma she was always complaining about the old ladies with too much fat wearing leggings. She said no one ever needed to wear pants that tight, old or young, but especially old.

I have learned something. I don't really care that my grandma would cringe if she were here and knew how many times I have walked out my front door and enjoyed the day wearing leggings and a tunic top. Little Bear told me the other day that he was sure my grandma could see me from heaven. This thought made me laugh and laugh. I am sure that as she looks down on me wearing leggings she is ranting about how she cannot believe I would do such a thing and Jesus is telling her it's okay. Pretty sure she would argue with even God about whether or not leggings are acceptable pants. I love my leggings. I love my grandma, but from her seat up in heaven. she will just have to understand that sometimes, leggings is just the best option I have.

I honestly have learned to like leggings. They are extremely comfortable. They are made from a soft and cozy fabric. They fit me well without feeling like a saw blade trying to cut through my abdomen as I swell up after eating. They look really cute with a long shirt and boots. Even if they looked awful, I would probably keep wearing them.

So, it's up to you to decide for yourself, are leggings real pants or not? In my book, leggings are real pants.

Worthy in His Eyes

Growing up we were in church every Sunday and Wednesday and almost any time someone was at church. We were there all the time. My mom was the church secretary for years and my dad was a deacon.

I accepted Jesus when I was in the fourth grade. My brother walked down the aisle to accept Jesus on Sunday morning. Our Sunday lunch conversation that day revolved around his decision to become a Christian. That lunchtime conversation tugged at my heart. That evening I walked down the aisle and made my public profession of faith. From that moment on I was a daughter of Christ. 

As a youth I helped with Vacation Bible School. I went to camp and to all the youth group events. I enjoyed church. I loved going. I brought friends when I could and I was always inviting people to church. 

In college, I regularly shared my faith with my friends. I spent my first two years of college going to a Christian College, although a different denomination than I was raised in. I went to chapel during the week. I found a sense of peace and belonging fellowshipping with other believers. 

When I married my ex-husband, I went through the adult RCIA Catholic Classes. I was confirmed, although now I look back and admit I should not have been. I never agreed with all the things I learned there. I never went to confession. I did not ever pray a Hail Mary or a prayer to the saints. Catholicism was not for me. 

Somewhere in the midst of "becoming" Catholic, my grandpa passing away, getting married and divorced, I lost my way. I was angry... at myself and at God. I was angry for the way my life turned out. I was angry at the awkward unwelcome feeling I got every time I went to mass. All these things were my own doing. The only one that was not my fault was my grandpa's cancer and death and that was just a sad fact of life.

During that time of my life, I fled. I ran from God and church. I was no longer going to the Catholic church, but going to my home church, the church I grew up in I felt just as lost. My anger and discouraged heart kept me from feeling at home there. The people there loved me, just as they always had, but I felt alone. 

I wanted nothing to do with God or His people. I blamed Him for my life being a mess. I was angry that he had not closed the doors that led me into distress and a broken heart. On the rare occassion, I was on speaking terms with God I ranted and I raved at Him. How could He let this happen to me?

I moved away from home after a while. Almost eighteen months after my divorce began, I walked into a church for the first time on my own. I walked out of church an hour or so later feeling blessed. I felt God speaking to me. I don't remember the sermon that day, but I remember feeling like the message was meant for me. It was there in that church six hours from home, one of the only white people in the building, that God spoke to my heart so much that I felt at home and at peace for the first time in years.  

God had been calling me to Him for a while, but I had been unwilling to listen. I made a huge mess of my life and made more mistakes than I could ever count. I hurt myself and the people I loved, but God loved me enough to wait out my anger. He was there when I was ready to drag my good for nothing carcass back to Him. He found me, a sinner who had ranted and raved and yelled at Him, worthy in His eyes. His love is great enough to cover all my sins.

During my mid-twenties and just when I thought I had life under control, I was diagnosed with a stomach condition called gastroparesis. I was no longer healthy. I was weak and tired and sick as a dog. I didn't want to do anything or talk to anyone and even when I did I didn't have the energy to do it. It was during this time in my life that I picked up my Bible or at least my Bible app on my phone. I read the One Year Bible plans two years in a row.

During those two years I found myself drawing nearer to God. Even in my illness I could call on Him. No matter how bad I felt He was there waiting for me. When I felt alone and lost and too sick to call on anyone else God heard my prayers. He comforted my heart in a way no living person could.

My illness has been a blessing in disguise. Yup, you read that right... My gastroparesis changed my life drastically and I pretty much hate it, but it drew me nearer to God and my family than anything ever had. It made me realize how much I needed God daily. 

I still make stupid mistakes, sin, and skip church... more often than I would like to admit, but I know my Savior is always there. Through the valleys and hills in my life God is with me, loving me, strengthening, me and encouraging me all along the way. 

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11 

Cozyna Air Fryer

Popeye has been wanting an air fryer for ages and ages. I have been holding out. Now that we got one I realize that I should have gotten one long, long ago. I LOVE this Cozyna Air Fryer. 
Having gastroparesis means I have not been able to eat fried foods for years. I always look longingly at things like French fries when Little Bear and Popeye eat them. I remember the taste of a salty and crisp fry. I have tried making fries in the oven countless times but it is not the same. I have gotten to where I make really tasty roasted potatoes with crispy edges, but they are still not fries. This air fryer has given me French fries back and for that, I am eternally grateful. Fries from here are not the same as McDonald's fries but they are pretty dang good. They are crispy and seasoned well and use very little oil. 

  

Using the fryer is easy. Dump your food into the fryer basket and add any oil or seasonings you need. Push the basket into the fryer and make sure it is closed completely. Then, make sure your fryer is plugged in and turn the knob on top to the desired temperature. It can be preheated if you need to. Turn the knob on the front to the cooking time. The fryer shuts off automatically when the timer runs out.

We have made all kinds of stuff in this. My husband and son love to make pizza rolls and fried ravioli in it. We also made the fries mentioned above. I used less than a teaspoon of oil to make 2 potatoes worth of fries. When you make fries you need to pull the basket out and stir them regularly during the cooking time. Otherwise, the ones along the outside edges cook much faster than the ones in the middle. 

I also tried to make potato chips in this. I did not have success with chips. The chips were sliced thinly with the mandolin and when I put them in the air fryer basket the fan flung them all to a pile in the back of the basket. Some of the chips leaked through the vents into the bottom of the fryer. Even stirring regularly some of the chips did not cook while others were overcooked. Because they piled up the stuck together but when they stuck together they did not get crispy. 

Fries are perfect. I am planning to make some “fried” chicken in here to see how it works. It has been years since I had any fried chicken. I wish the booklet that came with it had better recipes.

Cleaning this is really simple. The fryer basket can be put in the dishwasher which makes washing it easy. The base can get washed by hand with soapy water or can be wiped out with a rag.

You can buy the Cozyna Air Fryer here. 

I received a discount on this item. All opinions expressed here are my own.

Spicy, Minty, and Delicious

One of my favorite drinks is a ginger peppermint tea. I had been buying it for years and then all of the sudden it was out of stock everywhere. Ginger peppermint tea settles my stomach and helps with my bloating. So, when it was out of stock and I ran out I had to do something. It probably wasn't a huge deal, but it felt like a major thing to me and my sensitive stomach.

I ended up buying dried ginger and dried peppermint from Penzey's. It was my first trip to Penzey's and I fell in love. They have so many awesome things, but that is not the point. Their herbs and spices are great prices. I ended up buying 2 - 1 oz bags of peppermint and 1 - 0.85 oz jar of minced ginger. The herbs smell wonderful when you get them open. They smell so much better than what I would typically buy at the grocery store.

When I make my tea I keep it in an airtight container. I keep mine in a plastic container with a lid. I mix equal parts ginger and peppermint in the container. Usually I do about 3/4 cup each for one batch then put the lid on and shake it up.

When I make my tea I boil my water in a teapot. I use stainless steel and silicone tea balls with about 1-1.5 teaspoons of the tea mixture in them to brew my tea. I love these because they seal tight enough that leaves do not leak out. The holes are small and the leaves do not leak out any of the seams. They also come with a little cup like thing to set your tea ball in when you are done steeping your tea. I usually let my tea steep about 20 minutes.

This tea is a beautiful golden color. This tea has a spicy, minty and delicious flavor. The ginger helps with nausea and the peppermint helps with gas and bloating. This tea is also great when I have a headache. I love this tea and it is much cheaper than buying boxes of pre-made tea bags.

Be Prepared

Life with a chronic illness is hard. It is not always fun, but you learn to live with it and you learn from it. It teaches you so much. Some of the things I have learned, slowly and painfully in some cases, are about how to deal with medical professionals.

Be prepared. Growing up in an active Boy Scout family, I have heard this a million times or more, but never has it found a place in my life like it has since I got sick.

Before you go to the doctor, make a list of any questions, concerns, new symptoms, or ideas you want to mention for your doctor. I keep a running list in my phone for anytime I need to make a note for the doctor. Sometimes my list is really long and sometimes I end up dividing it up for my different specialists. Before I go to my appointments, especially my routine appointments, I go over my list and reorganize it in order of the most important to the least important items. Depending on what doctor I am going to I may print out my list and give them a copy to make sure they have everything. My list includes new symptoms, questions about new treatments for my symptoms, diet changes, and much more.

Be ready to advocate for yourself. Do not be afraid to question your doctors. Sadly sometimes you know more about your illness than they do and with some illnesses, like GP, the symptoms vary wildly from person to person. Advocating for yourself is a necessity. If you are ill enough that you cannot easily advocate for yourself take family or a close friend to your appointment to help. There have been times I have needed my husband to advocate for me, especially in Emergency Rooms and Urgent Care. Some doctor's will try to downplay your illness or treat you in a way that makes you feel stupid. Don't let them walk all over you. No one knows your body better than you do.  When I go to the ER I regularly have to explain to doctors and nurses what gastroparesis is and what I need them to do for me because they have no clue.

Do your research. When I first got diagnosed with gastroparesis my doctor knew very little about it. He gave me a one page front and back handout, with basically all the information he had. It included a very basic diet plan with no in depth information and a basic description of what GP is. It did not give me any real information. So, I took to google... and I learned a ton. I took some of my new knowledge to my doctor who did some reading as well and over time we found a plan to manage my symptoms.

Find people that have been there. I found some support groups for gastroparesis by searching FaceBook. Those groups got me through the hard days. They gave me support and encouragement. They also gave me ideas for things to talk to my doctor about.

So... if you get anything from this get this... Be prepared! It will take a lot of stress and pressure off of you when it comes time to go to the doctor.

For more information on gastroparesis and for gastroparesis support check out G-Pact here.

Growing Ginger

I love ginger. Ginger in candy, ginger in tea, ginger in soups, but sadly our local store doesn't always have the greatest selection of ginger or the best price for ginger. Thankfully growing ginger is easy and the taste and freshness are superior to grocery store ginger. Being able to easily grow your own remedies is a wonderful thing.

Ginger about one and a half months after new shoots came up.

The part of ginger you typically cook with is the rhizome or the root. The rhizome has a substance called gingerol that is good for nausea, morning sickness, arthritis, and many more ailments. It is easy to grow and can be grown in the ground in many of the Southern states. It can also be grown in pots in the northern states. It is much easier to grow than I expected; it is a plant it and forget about it kind of plant. The first time I bought ginger to grow I bought it online from Baker Creek Heirloom Seeds. Since then I bought some from a local herb farm that I love, called Maggie's Herb Farm. Make sure, when you buy ginger, that you are buying culinary ginger. There are many ornamental verities of ginger that are not edible.

Ginger needs a few basic things to grow successfully. Its main needs are good soil, some light, and warm weather. It does not like freezing temperatures, soggy soil, or direct sun. Planting ginger is easy. You plant in early spring. You dig a hole and plant it with the eyes facing upwards. These eyes become the shoots of the plant. Let it grow all year and when the leaves start dying you can dig your rhizomes up. My ginger is planted in pots that sit under a tree.

One of my pots of ginger with new shoots coming up

Some people say you can grow ginger from the roots you buy at the grocery store. I have never had luck with this. Grocery store ginger is sprayed with chemicals to keep it from growing. Some things say soaking it overnight will make it grow. I have not had success with this theory and recommend buying it from a reliable nursery locally or online. Once you get it started you can keep it going forever. Most of my ginger is two years old now and doing well in pots and planter boxes. In the last month or so it has grown from nothing to about 8 inches tall. It gets new shoots all the time. Ideally, I would love to find a place in my yard where I can have a large ginger patch. I have yet to find that place that is out of the way enough to let it take over.

Ginger can be harvested slowly over time by digging up a little bit and breaking or cutting off small chunks of the rhizomes as you need them or it can be harvested all at once. Some can be kept back to replant in the spring of the following year. I harvested only a small bit of my ginger last year. I started it late in the year and just broke off a small piece and left the rest to grow this year.

A rhizome of my two year old ginger plant.

Fresh ginger can be used in many recipes. I use minced ginger in soups, rice dishes, teas, marinades, sauces and so much more. It can also be used to make ginger tea or infused with other teas. It can be candied and sweetened, made into syrup, or dried and preserved for later use. If you want to use dried ginger without growing and processing it you can buy it online. One of my preferred brands is Frontier Herbs or from Penzey's.

Relief from Nausea by Eating Ginger Candy

Living with gastroparesis and constant nausea, I have learned some natural remedies. My favorite home remedy is ginger candy. I have so much relief from nausea by eating ginger candy. My two favorite ginger candies both are by The Ginger People, one is a hard candy and the other is a chewy candy.

Ginger has been used for thousands of years for digestive ailments as well as some other health problems. It has a substance called gingerol that has medicinal properties. Ginger helps with nausea and bloating, as well as pain, headaches, muscle soreness, and is said to be helpful for brain function and lowering cholesterol. The reason I eat ginger is for nausea relief. It can be eaten during pregnancy, when you have motion sickness, and any time you have an upset stomach.

If you have never had ginger before you might be surprised by it's spicy flavor. When I first tried ginger candy I hated the flavor, but I knew I could not keep taking prescription medicine for nausea all the time since my medicine made me sleepy and had other unpleasant side effects. The ginger candy helped me so much. I love the hard candies when my nausea is extra annoying and my mouth is dry. Sucking on them helps wet my whistle and helps my nausea. The chewy candies are great when I want a snack, but don't really feel well. Eating ginger candy has drastically reduced the amount of nausea medicine I take. Some days I only eat a few after meals and other days I feel like I eat thousands.

The Ginger People have candies in different flavors like peanut and caramel, as well as the plain ginger. Another great thing about these candies is that they are gluten free. You can find The Ginger People candies at fancy grocery stores, like Whole Foods and World Market. I buy mine on amazon. You can get them in normal sized bags or you can be like me and buy 11 pound bags that last 6 months to a year.

You can buy The Ginger People Chewy Candy here.
You can buy The Ginger People Hard Candy here.
If you know you love them you can find the gigantic 11 pound bag here.

A Wife and Mom living with Gastroparesis

I am a wife and  mom living gastroparesis. If you looked at me, most days, you would never guess I am sick, but I am. I try not to talk about it because I am not my illness. There are days when it is discouraging and I feel like it is the end of the world, but there are also good days. I am a woman with hope, dreams, and most importantly faith. I know that with God I will make it though the tough times.

Part of my Support System and I

When I first started showing symptoms I was sick as a dog. I had all the symptoms of a stomach bug, but they never went away. I was throwing up... Many, many times a day. I was nauseated constantly. First the doctors said it was a bug. Then they said it was stress. After many visits they had no answers and asked if I had an eating disorder. At that point I had been sick for over 6 months and lost 50 pounds. I frequented the ER so often for IV fluids that they knew on sight to find a tech that was good at starting IVs. By the time I had been sick for a year I was still no closer to a diagnosis and had lost close to 70 pounds. By then we had moved and I had all new doctors. These doctors were concerned. They wanted to find the problem and fix it.

February 2011

At 29 years old, after 14 months of being sick and numerous tests and lots of doctors visits I had an answer; I have idiopathic gastroparesis. There is no cure. I can treat the symptoms, but it will not go away. Gastroparesis means paralyzed stomach. Many people with gastroparesis are diabetic; I am not therefore my gastroparesis is idiopathic, meaning they have no idea what caused it. My stomach does not work correctly to digest food or liquids. It can take many hours or even days for food and drinks to digest. The other big part of treating gastroparesis (GP) is MAJOR diet changes. Low fiber, and low fat. No raw fruits and vegetables, no red meats, no high fat foods. I take multiple antiemetic as needed. They help my main symptom, nausea. One of my medicines has helped me to maintain a somewhat more normal life. Once I started it I could eat and drink again sometimes. The new medicine even helped me gain a little weight back. My worst symptoms now are nausea, constipation, and fatigue followed by more minor symptoms like bloating and abdominal pain. Because I do not get proper nutrients with my GP my bowels do not work properly.  I do not absorb nutrients well from food either. I cannot take many kinds of medications because my body does not dissolve and absorb the pills and many other medications exacerbate my GP symptoms.
It has now been three and a half years since I was diagnosed. Thankfully my vomiting episodes are rare. I am still nauseated all the time. It is usually a tolerable level of nausea, maybe because I have just gotten used to it. I have days or weeks where my GP flares up horribly and I end up needing IV fluids.  Thankfully, I have learned what I can and cannot eat, most of the time. Sometimes even my "safe foods" can start a flare. During a flare I vomit and feel horribly nauseated. At these times I rest more and stick to a liquid diet. Some days I cannot even tolerate liquids. Water is one of my biggest enemies. It seems like something easy to digest, but it is not. 

February 2012

According to Temple University Hospital Digestive Disease Center, 1.5 million Americans have gastroparesis. Many people have much more severe GP and require feeding tubes and take nothing by mouth. Many patients with gastroparesis do not have success with any of the treatment options. Gastroparesis effects much more than your physical health. It effects our emotional well being, our relationships with friends and family, and our feelings of self worth.

For me gastroparesis has caused me to have anxiety and panic attacks. It has changed everything about how I live my life. Thankfully, my family is very supportive, but even with their support I often feel discouraged because I find it hard to do daily tasks because of my nausea and fatigue. Some days just dragging myself out of bed and taking my son to the bus stop is enough to make me need a nap when I get home.

There is also guilt and I think it is probably the worst unseen side effect. I feel guilty for messing up vacations, for changing plans from eating at a nice restaurant to picking up food to go so I don't have to smell the food smells. There is guilt from not being able to take my son everywhere he wants to go and do everything he wants to do. There is guilt from date nights gone wrong because I feel bad, so we cut things short or sit around and do nothing. I have guilt from saying no to helping with things at church or backing out at the last minute and leaving them shorthanded.  I know that there is no reason for my guilt, but I struggle with it on an almost daily basis. I feel like I am letting down my family and friends.

Making friends is also difficult. Many social activities revolve around eating. When you show up for dinner and don't eat, people ask questions and sometimes it can get really awkward. It is also hard to maintain relationships because eventually people quit inviting you when you have canceled many times before because you were all of the sudden feeling rotten.

In the ER on vacation getting IV Fluids

Maintaining a normal family life is hard as well. Like I said my family is supportive, but we have gone on trips many times before only to have to stop so I can vomit out the car door or dump out the bucket I used while we drove down the road. We have also been to Emergency Rooms all over the country when I needed IV fluids while we were on vacation or weekend trips. One of the worst trips was when we went on a weekend trip to New York City and as we were about to get on the Subway I got sick and had to run to the McDonalds down the road because it had the nearest public bathroom. I spent almost an hour in the bathroom being sick while my husband and son patiently waited outside.

We eat differently than normal families. I still cook meals, most days. It is a daily struggle for me to cook meals that can satisfy my dietary needs and give my husband and son enough fiber and nutrients. It is also a struggle to watch them eat foods I used to love. Most days I just put on a happy face and enjoy my small piece of chicken and mushy squash and pretend to be happy while they chow down on a nice crisp salad or a juicy steak or a big piece of cake. Some days I am not that strong. I hate to admit that recently I have broken down into tears because I miss food, and more

August 2015

than food I miss my old life. I miss being vibrant and healthy. I miss being able to spend an entire day at the beach in the sun without worrying about dehydration. I miss getting in the car for a spur of the moment day trip without having to worry about whether or not I grabbed some gastroparesis friendly peanut butter crackers and my nausea medicine.

I love my life, but I want to be healthy again. I want to wake up knowing it will be a good day and lunch will not suddenly and unexpectedly make me sick. Some things change your life forever. Learning to live with an invisible illness has changed my life. I have learned so much about who I am and who I want to be. I don't want sympathy because I am sick. I want to be understood. I want people to see how one illness or one event can change everything in the blink of an eye.

If you would like to learn more about gastroparesis please visit: www.g-pact.org.