Pancreatitis: The unrelenting food fight

Since 2009, it has been almost a daily fight between my will to eat and my pancreas’ anger towards food. There are times when food causes few symptoms. While other days, weeks or months are non-stop battles of constant pain, nausea, diarrhea and pancreas spasming.

As the years have passed, my diet consists of less and less. I have had issues with eating fat since I was a child. So, most fatty foods have been avoided for many years of my life. Next on the chopping block were grains—wheat, rye, barley, rice, corn, etc. Then I eliminated sugar.  Soon I started eating only organic food. Then I began eating only food I prepared myself. No food from restaurants, and no packaged food from the store. Next I went to a vegetarian diet, eating fruits, vegetables and only a little bit of dairy. I kept cutting out more and more foods to try to ward off pancreatitis attacks.

Since November, my diet has reduced down even more. I am eating mostly cooked vegetables, a small amount of fruit and sometimes I drink a little bit of milk. Although my body desperately needs protein, I avoid it like the plague. When my heart races, my head spins, and feel as though I am going to die from fatigue, I know my protein levels are too low. I slowly sip a few ounces of milk, take pancreatic enzymes and hope my pancreas doesn’t spasm into a bad pain attack.

I wait and wait for a solution to my pancreas to be figured out, but for the moment, I am told by my GI doctor this is just chronic pancreatitis. I know what chronic pancreatitis is, but I feel as though this is getting out of hand. My weight keeps dropping, my pancreas hurts all the time, and moving the wrong way or riding in the car causes my pancreas to rage out of control. As I endure each pain attack, I feel as though the pain is worse than the previous attack. I shake uncontrollably from the pain, I fight to breathe and sometimes I start screaming unintentionally. I fight through the long hours of unrelenting pain and horrific spasming of my pancreas. When the attack ends, I wonder how long it will be until my next attack. Sometimes it is three days and sometimes it is 14 days. I dread the thought of having to endure another one of these attacks.

I keep waiting and waiting for relief to come…but for the moment, every day it is s struggle between eating and enduring endless pain.

When I want to quit, God gives a blessing

I lie in bed exhausted. My pancreas is raging out of control. I ate a small amount of soup for breakfast and BAM! Excruciating pain! I took a precious pain pill. The pill has taken effect (as noted by the side effects I feel), but the pain remains.

I want to curl up and not move. I want to quit life. I do not want to work on things which need to be done—I have YouTube scripts which need to be written. I have been thinking all morning maybe I should stop creating YouTube videos. I am getting too old and have too little energy to dedicate to the projects. Yes, quitting…that sounds like a good idea.

As I meditate on not filming another video, I see I have a notification on my YouTube channel. I am curious what the notification means. Do I have a message? Did someone subscribe to my channel? I decide not to click on the bell icon to find out.

I click open my emails. I see an email from YouTube stating I have a message on one of my videos. I now know what the notification on my channel page is. I have an unread message. I click open the email from YouTube. To my shock, it is a long message. The person states from my YouTube videos she felt confident to get a tracheostomy. She had the procedure two days ago and has a few questions.

Tears spring up in my eyes. My YouTube channel helped someone. My words/actions inspired someone. I take a moment to thank God for this blessing. As severe as the pain is in my abdomen, I suddenly realize it is not a reason to quit making YouTube videos.

I lie in bed for some energy to return to my body. I think about how I will respond to the message. I then tell myself perhaps I will continue for a few more weeks making videos. Perhaps one more person may find my channel useful.

 

Pain. A test of patience.

Of late, pain has been lurking around every corner. I will have a severe pancreatitis attack and will be have residual pain for several days after. Soon, the pain subsides, and my ability to eat fruits and vegetables returns. But there is always a chance at any moment, my pancreas can roar back into a severe pain attack.

I wait patiently for the pain to pass. I try to fight through the endless hours of my pancreas spasming and cramping. I greatly desire to be free from this beast. I have a scant amount of pain medication. I know if I take a pill, it means I have one less pill in the future…and there is always the fear that a future attack will be worse than the one I am experiencing now. In desperation, I break a pain pill in half and combine it with acetaminophen. I wait the 60-90 minutes it takes for the pills to take effect.

I watch the clock tick incredibly slow. When 60-90 minutes pass, I pray for pain relief. Many times, pain relief never comes. I continue waiting for pain relief, but the pain medicine is not strong enough.

I wait and wait for my pancreas to stop hurting. Will it be 3 hours, 6 hours or 24 hours before the pain breaks? I do not want to think about the long hours ahead of me.

When the pain does finally drop in intensity, I often fall into a dreamless dead slumber. When I wake up, my body aches in pain from having my muscles shake uncontrollably from the pancreas pain. I feel as though I have been in a car accident. My body is famished from lack of nutrition and craves fluids. I gingerly take a few sips of water and pray the pain does not come roaring back. Sometimes it does; other times it does not.

I again start the process of waiting for another pancreatitis attack. I wonder how much longer will God allow me continue on this road. When will relief come? I want to scream out to God and beg for healing, but I know God already knows my desires. I just have to keep on waiting…waiting and being patient.

I wait for the LORD, my whole being waits, and in His word I put my hope. (Psalm 130:5)

To be be right or to keep subscribers

If I have one MAJOR character flaw it is that I like to be right. I like to have my opinion heard, and I like it when people agree with me. I will listen to other people’s viewpoints and will change my outlook if the information I am presented contains studies, research, or peer-reviewed evidence.

One thing I have learned since creating a YouTube channel is I have to be very careful about my words—the words I use in my videos, the words I use in my video’s description, the words I use to reply to comments, etc. Social media is often very hard. We communicate via a platform in which voice inflection and intonation is not available. If you do not know a person’s personality, a funny comment may be perceived as a rude remark.

One of my biggest obstacles with YouTube is responding to comments left by viewers. English may not be the person’s first language. The person may have an impairment which affects his ability to type. Then, some comments just do not make sense. If I am not sure what the comment exactly means, I will make a generalized statement and thank the person for watching my video.

Then, there are comments in which none of the above apply. The words left by a viewer make me upset. The viewer may have “suggestions” for improving my channel or video. If the comments are sincere, I appreciate ways to make my channel better. However, some of the comments are meant to cut down my video or channel.

At these comments, I really want to be rude and sharp with my words. However, as much as I want to express my opinion and prove I am right, I know this will only cause the viewer to be upset with me. I may lose a subscriber. Is a lost subscriber worth proving I am right? The answer is no. I created my YouTube channel to be a positive outlet. I swallow my pride and thank the person for sharing his ideas. I move on and try not to let black letters on a white background eat away at my ego. It is hard…but so far, I think I am having some success.

 

Thanks for the prayers. May tomorrow be a better day.

Of late, I have been extremely busy and have had little time for social media. Tonight, I log in to Facebook to check if there is an update on a young woman who was to have a major surgery today. Before I am able to check for an update, I receive a a couple beautiful messages from friends. It comes at just the right moment.

My pancreas has been extremely angry. I am very tired today after a pancreatitis attack stole a night of sleep from me. My body is fighting hard to recover from the attack. Anything I eat or drink triggers more pain in my pancreas. I want to be unproductive, but I have many things to do.

Tomorrow I need to film my YouTube video. I am blessed I wrote the script earlier in the week, but today I need to get the pre-production work done. I am so tired. I keep taking naps. I get hungry, attempt to take a few bites of food and then need to lie down again.

God often blesses me when I feel sick. For example, today I had new subscribers to my YouTube channel. Any time I get a new subscriber, I smile and thank God for His kindness.

When I finally get to my friend’s mom’s Facebook page, I am thrilled the update about Rebecca is an exciting one. After spending all day thinking and praying for Rebecca, it was such a blessing to receive such a positive post-op report. The surgery was a success. Now it will be many months of recovery.

I need to get motivated and be productive. I pray tonight is a night of rest, no pain and the ability to eat in the morning. Thank you to everyone who has reached out to me and who has prayed for me. Your kindness always lifts my spirits.

 

Pain and Exhaustion

Some days, I feel like a complete failure. I am exhausted from a long day (well, it actually was only 4 hours) of being in the car and then going to an appointment. The ride to a medical appointment was brutal on my fragile pancreas. By the time I arrived at the appointment, I was gasping for air and shaking uncontrollably in pain.

The appointment was not fruitful. Although I had high hopes, God had other plans.

I came home, froze to the bone. I put heavy weight clothing on and curled up with a heating pad on my pancreas. The headache from being out and about pulses with each beat of my heart. I take acetaminophen in hopes this will alleviate both my headache and pain which is raging in my pancreas and shoulder. I desperately want to take something stronger, but between my limited supply of pain meds and my severe reactions I am having from them (intense nausea, horrible headaches, dizziness, an inability to sit up without feeling as though I am going to fall over, heaviness in my head, fullness in my ears, profuse itchiness throughout my whole body that not even four Benadryl can take away, etc.), I opt to struggle through the pain.

My body is weak from lack of nutrition. I struggle to swallow a few bites of food. Soon, my abdomen feels as though it has swollen to the size of Texas. I look at my tummy. I am surprised how little it is actually distended. I go back to bed and return the heating pad back to my pancreas.

I look at the calendar. I have to wait three more weeks until I can get a consult with a surgeon to get a feeding tube. Then I wonder how long after that appointment will I have to wait to get the procedure done. I have had a feeding tube before. The pain from the procedure is brutal. But maybe this time, it won’t be so bad, or maybe it will help take my mind off my constant pancreas pain. Until then, it will be a long night trying to get rid of the pain and lull myself to sleep.

 

Inspired to Keep on Keeping on

As with all endeavors, my energy to continue writing, filming, producing and editing YouTube videos ebbs and flows. Some weeks seem to fly by while I work hard to create a passion of love; other weeks zip by very quickly as I try to scramble to come up an idea for a video. No matter what the final subject matter is, I dedicate myself to producing a quality film.

It is interesting how God uses people to inspire me to keep on keeping on. I have received messages and requests for information from viewers from all around the world. When I am tired and think I cannot keep going, I receive communication from someone who is often desperate for information. As I attempt to give words of encouragement and inspire the person that it is possible to live life with a ventilator, I am suddenly filled with gratitude. I am thankful for my ability to reach others during difficult times.

I often thought my ability to change the world or to inspire others to change the world stopped when my health impeded me from living a normal life. For many years, my world has not passed much beyond the walls of my house. And yet, suddenly, I have found a new avenue to teach and educate others about ventilators, tracheostomies and anything else which may be on my mind.

To everyone who has encouraged me, thank you for your kind words. To every person who has reached out to me, thank you for sharing your story; thank you for allowing me to be part of your journey.

When thinking about my gravestone epithet, I used to believe it would read, “The girl who tried, got sick and died forgotten.” Now through YouTube, my slogan has change to, “The girl who tried, got sick and still tried to educate the world one video at a time.”

 

 

Whatever lies before us in 2021, may we continue to encourage and inspire one another to keep on keeping on.