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.

A Look Back to 2020

This last year has been one of the most challenging years of my life. But with all obstacles, there is also a satisfaction I made it.

Here are a few highlights:
In January, my infectious disease doctor and I agreed I should get a port-a-cath. A port is a device implanted in your chest and is threaded into a large vein which allows a person to have permanent IV access. With this device, I could get IV antibiotics at home without needing to go to the hospital and have an IV line (PICC line) placed. (Due to having a ventilator and tracheostomy, I have frequent lung infections which often require IV antibiotics.)

There are some decisions I wish I could got back in time and change. This is one of them. I have a genetic condition which affects my connective tissue, specifically it affects my joints and blood vessels. With Ehlers Danlos Syndrome, my blood vessels are prone to collapse anytime I am stuck with a needle. The thought never crossed my mind that getting a port could also cause negative consequences.

As soon as the port was placed, I was in a tremendous amount of pain. My heart was racing; my limbs were shaking uncontrollably. I thought I was going to die from the pain. I was sent home and told to take Tylenol. (What I did not know at the time was the vein in which the catheter was placed had collapsed. This prevented blood from the left side of my head and neck to be able to return to my heart.)

Over the next days and weeks the pain grew worse and worse. I had an incredible amount of pressure on the left side of my head and neck. It felt as though my head was going to explode!

The upside to this all is it helped alleviate a fear I have had. In 2010, after I had returned from the magical clinic in Minnesota and was told there was nothing they could do for me, I wanted to commit suicide. God intervened before anything ever happened, but I have always been afraid if I was in that much pain and distress again in the future, would I take my own life? Thankfully, I now know the answer is no. During the 42 days of being in intense agony, I clung to God and kept asking for His help. This situation helped me realize how far I have come since 2010. For that, I am tremendously grateful.

In March, I had the port removed. It took several weeks for the pain and all my symptoms to go away. During this time, my beloved pulmonologist dropped me as a patient. That event completely shattered me emotionally.

In April, my mom began watching endless YouTube videos due to the lock-downs. She told me I should have my own channel. I have for a long time wanted to start a YouTube channel, but I am not very technology savvy. After being very sick this winter/spring and then being emotionally drained from my pulmonologist dropping me as a patient, I was at an all-time low. I figured I would shoot a YouTube video and if it failed, it would not make a difference because I really could not be any lower than what I was. At the end of April, I filmed my first video. To my shock, it was a success! I kept shooting one YouTube video a week, and the channel has continued to grow and prosper.

My YouTube channel has forever changed my life. I have been connected with others who have ventilators and/or tracheostomies from all over the world. I am blessed to be able to help others and to share in our quest to live the best life we can.

YouTube has allowed me to do what I love—share medical information, tell stories, see the good in all situations and educate the world about some of the conditions I live with.

I invite you to check out my YouTube channel. Click here to view my YouTube channel.

The major lesson I learned from 2020 is sometimes you have to be completely shattered to the ground before you will risk starting a new endeavor. The process is painful, but in the end, shattered pieces can create a beautiful mosaic.

I hope everyone has a safe and blessed 2021!

Back to Where I Started

As the days draw closer and closer to January 1, I have been trying to get all my prescriptions filled. It is not that I need them filled or will incur more financial strain if I do not get them, but my insurance changes at the beginning of the year.

The pharmacy I currently use will no longer be an in-network pharmacy. I have yet to completely understand what this means for me, but the preliminary answer has been on January 1st, none of my drugs will be covered by my insurance at the pharmacy I usually use. This means I will have to sift through all my prescription records at my current pharmacy and have my new pharmacy call my old pharmacy to transfer the prescriptions. This would not be a big deal if I took medicines consistently, but many of my drugs are once in a while drugs. I get them filled once or twice a year. To alleviate this hassle, I have trying to get all my meds filled. That way, I will be set for a majority of next year.

I have one prescription which I have a three month supply left on the drug. I submitted the drug to be filled online last week. Today, I received a notice my insurance does not cover online medicine refills. I need to call my local pharmacy and have them fill it. I call my local pharmacy, They tell me they cannot full it because it has been filled at another location. I am given the store number. I either was given the wrong store number, or I wrote it down, but a quick internet search told me the branch was located in the Chicago area.

I call the Chicago branch and talk to a very sweet man. (I believe he was the pharmacist.) He looks up my information and tells me the store number where the prescription was filled is the online branch. He gives me their direct phone number.

I call the online branch. I am told there is an issue with my account. There are two insurance numbers on it. The woman asks for my insurance information. She updates the system and says she will try to get the drug out to me ASAP. I hang up.

About an hour later, I receive an email, My prescription cannot be filled. I had another prescription filled at the beginning of the month. I take nine tablets a day. The prescription was for 90 pills. Doing some simple elementary math, ninety pills would be a ten day supply. According to my insurance, ninety pills should last me 30 days. Hence, I am not eligible to fill my prescription until after January 1st.

I could call and contest my insurance and explain 90 pills will only last me ten days. But I have already lost an afternoon calling pharmacies and getting no where. I will just wait until after the first of the year and try to get the prescription transferred. If I am unsuccessful, it is not a huge deal. I will have to try to find a primary care doctor and attempt to get a new prescription sent to my new pharmacy. (I really don’t have a primary care doctor. I usually ask for prescriptions when I am hospitalized. It saves me time and effort trying to explain my medical conditions to yet another doctor.)

So, at the end of this all, I am right back where I started. I have a prescription which needs to be transferred to a different pharmacy after the first of the year.