I am stepping out of my comfort zone to share with you a personal story concerning my journey with gastroparesis. This is difficult for me as an author who teaches and speaks life, but lives in pain. Part of the recent move to Florida was to revisit the specialists at the Mayo Clinic. We just learned they no longer take my insurance, so we are hoping for an open door to the right place.
I’ve been dealing with this chronic illness for over 15 years, and it is only getting worse. I am not looking for pity, but I am looking for support or just a listening ear. Most support comes from people you are close to being understanding or more aware. I also want others who deal with health issues to feel more vulnerable and share what they are dealing with or what their loved one is dealing with in a safe place.
I went numb from the waist down in 2007, which led to losing my health, my titles, and eventually my home. Due to the neurological issues, I became disabled. Finally, in 2018 after years of being toxic, I decided to have surgery for a temporary ileostomy with a reversal in 6 months. Many people were having results with this, but I had complications during surgery. My abdomen swelled; a hole tore on the side of my stoma, and waste was coming out both. Three years later, I am still dealing with wound issues and no reversal.
Wearing a colostomy bag is unnatural. It can be embarrassing when you make gaseous sounds that pop from a bag during a dinner outing with a new person. This bag life requires humility when traveling and trying to find a handicapped bathroom so I can pull out surgical gloves, wipes, bags to put waste in, etc. If there is no trash can behind the stall, I have to walk out and place the bag in the trash can while hoping no women are washing their hands. Sometimes, I have to return to the car and tell my husband I need him to find another restroom.
There have been times when people have given me funny looks after i entered the handicapped stall. I once had a lady with a cane tell me it was okay that I used “her restroom” after I exited. She said, “When I was healthy, I used this room because it was roomier.” I once had a woman walk up to me in a store and ask me why I was in a scooter. “You look healthy to me. What’s wrong with You?”
Yes, many times, people with chronic illnesses look fine to everyone around them.
I’ve probably lost most of you at this point. Who wants to read a poopy blog? Honestly, I am learning many things about the Body of Yeshua from my disorders. Autoimmune means my body attacks itself. His Body attacks itself. My body has numbness. His body has numbness. Much of His body is carrying around waste and needs their wells unclogged, and their wounds healed. Well, you get my point.
Life with Gastroparesis:
At times, I may share a regular meal or go out to eat and appear like anyone else at the event or family function. This type of eating does not come without paying severely for it. I am writing this blog for educational purposes and to educate people more on disease and what the Bible says concerning it. I also wanted to become more vulnerable with my readers, friends, and family and those who may not understand why I am distant at times, don’t answer a call, message, or text, or am not always big on company or unexpected guests. This doesn’t mean I don’t want to visit, zoom, speak, teach, etc., but I am most comfortable writing words behind my laptop.
I have five autoimmune disorders. Yes, I said it. I was raised in a charismatic church where people were chastised if they “confessed” such things! I try and speak life. I know life and death are in the power of the tongue. That is true, but so is honesty, compassion, empathy, realness, and I am tired of caring what people think anymore. Due to my sufferings, I have found joy in the strangest of places and in the tiniest forms of creation, birthing my new release out of these experiences.
What is Gastroparesis?
Gastroparesis refers to (gastro- from Ancient Greek γαστήρ – gaster, “stomach”; and -paresis, πάρεσις – “partial paralysis”), also called delayed gastric emptying. It is a medical disorder consisting of weak muscular contractions ( peristalsis) of the stomach, resulting in food and liquid remaining in the stomach for a prolonged period of time.
I now keep a diary of the food I eat and the amounts which I measure in measuring cups. I try and remember what went down without me getting sick, what made me worse. What came up, etc. It is 2 pm here, and I’ve had three bites of yogurt. My journal entry for yesterday consisted of white toast, turkey bacon, white rice, yogurt, and I sautéed some mushrooms in olive oil and seasoning to add to my rice for dinner. Wrong decision, but I knew this. I was just craving normality and mushrooms. Very sick until 2 am. Today, I am not hungry, but I have to place something in my gut, or it will swell to pregnant proportions, so Greek yogurt or Jell-O pudding it is. I love cooking, so of late I cook and watch hubby eat it. This too is hard.
Everyone has a story and something they are battling. I know this. I have one friend who has been in the hospital for 20 days now. Many are reaching out with prayer needs. So many people in the Body of Messiah are suffering but don’t want to speak about it. I have decided to talk more about my journey with transparency.
I am overweight. This is the most I have weighed since I was pregnant. Gastroparesis affects people differently. Some are on feeding tubes and look malnourished. Others are obese. It is easier to tell you what I can eat now versus what I cannot. After years of people making suggestions or giving me tips on detoxing, fasting, juicing, protein shakes, vitamins and herbal remedies, salt tanks, probiotics, oils and on it goes– I must say, what sounds good and works for regular people, does not work for gastroparesis.
My body cannot digest fiber, raw fruits or vegetables, meats, protein shakes, etc. My gut cannot digest water well. I can’t start my day guzzling water. Hot tea makes me sick. My newest attempt at tea was fennel and mint, but shortly after sipping half a cup, this too came up. The label said it promotes good gut health. Not in my case. So when you see a friend with this condition eating pasta or white toast, yes, the worst bread made, just know stomach muscles don’t work as hard and it usually doesn’t come back up. Even certain bone broths makes me sick. On date nights, I have light flakey fish and mashed potatoes or pasta and bread. Usually, this food stays rotten in my stomach for hours or days. I feel like a brick is in my gut. Taking castor oil, milk of magnesia, magnesium, turmeric, licorice, powders, probiotics, etc., has become a way of life for me for years, and now the lining in my gut cant handle most of this.
I look fine to the naked eye, but sometimes, after the door closes, the service ends, the company leaves, the lights turn out, I mentally and physically break down. When I hold the pain in and holding on to His garment the whole day, there comes a point when I no longer can hold it together.
Can any of you relate to this? Even if you’re physically healthy it does not mean you are without pain or trying to keep it together. Everyone has pain and suffering. Everyone has heartache and sadness. Most of the time, we don’t know what others are trying to deal with or carry. The body is good at covering things up, like my baggy sundresses that hide my bags and swollen stomach. We hide things, and we don’t talk about them. Or we push things down like my food or become numb like my bottom half. Suffering is something we all go through. No one gets out alive or free from suffering, pain, rejection, addiction, health issues, family issues, and financial issues. Perhaps you, too, are suffering in your body so bad you wonder if you will survive the surgeries, the chemo, the daily wounds, and gut-wrenching pain. I know the Father sees us. He hears us. He knows all about our sufferings. And He longs to draw us closer to Him. Paul said, “I want to know Messiah and the power of His resurrection and the fellowship of His sufferings, being conformed to Him in His death, and so, somehow, to attain to the resurrection from the dead.” (Philippians 3:10-11).
Our Messiah sees and hears the earth crying out. We groan and cry “Come, Yeshua, Come, save us, please. Set up your kingdom, for the kingdoms of this world will roll up and melt away, but your kingdom is an everlasting kingdom. We need the Great Physician. We need the Prince of Peace. He says, Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. We need the hope of glory and Yeshua in us is the hope of glory. We need one another!
Amy Carmichael said,
No wound, no scar?
Yet as the Master shall the servant be,
And, pierced are the feet that follow Me;
But thine are whole: can he have followed far
Who has no wound nor scar?
If you are still with me, I hope you will read my chapters on sickness or my blog on what not to say to sick people. No time to read this week? Listen to my podcast with Dr. Robin Gould. I will link these below.
For podcast with Dr. Robin Gould scroll to the end of Ten Plus Things Not to Say to Sick People and click on the podcast link.
Please feel free to comment or send a prayer request Prayers appreciated.