Stepping back, Going Forward, Trying to Adjust to My Health

Every day I go about my life often believing there is nothing wrong with my heath or that any medical compliant is only temporary. It is often hard for me to accept any change in my well-being. I do not want to give in or give up to my illnesses.

My memory seems to forget how old I am. I imagine I am in my 20’s still full of life and endless possibilities. When I look in the mirror, my eyes pause. When did I get so old? My eyes do not align; my left eyelid droops and is lower than my right; the right side of my face is relaxed while the left side of my face has involuntary muscle tightness. I wonder when my face started showing signs of my disease.

More and more frequently, I am having pain and fullness in my ears. My hearing waxes and wanes. I tell myself this is just a minor symptom which will be going away soon. I hope and pray this does not stay.

I struggle to get through the day. I used to have more energy in the evenings, but now by 6 p.m. I am fighting to stay awake. I tell myself it is from the sun setting early. In the spring, things will be better.

I am trying to adjust to my health, but as with anything new, it is hard. How do I make the most of my time and energy? How do I continue to live without allowing my medical conditions to rule my life? Each day, it is as if I try to move forward, but instead I take a step back. Things I love to do are getting harder and harder to do.

After so many years of struggling with chronic medical challenges, people may think I should be a master of my health by now. Unfortunately, nothing ever stays the same—for better, for worse.

I am making changes to my life in 2022. I hope it is for the best. It is hard to accept my health is declining. Instead, I am believing these changes will improve my well-being. May 2022 be your best year yet! Happy New Year!

Did I sin?

Today I went to a medical center to have lab work done. After leaving the lab, I was looking for the bathroom. I saw a woman and a small child walking toward me. I turned and started moving in front of the two. When I saw the sign for the bathroom, I rushed down the corridor toward the restroom.

Upon opening the bathroom door, I was shocked the bathroom only had one toilet in a small room. I felt bad. What if the woman and child needed to use the bathroom? They would have to wait if I was using the bathroom. I pushed the thought aside. There were many medical offices in this building. They were most likely going to a doctor’s office for an appointment.

During this time, my body was shaking. My heart was racing. I was very agitated. My blood sugar was low and was plummeting fast. I needed to get out to the car as soon as possible or I would crash into a bad hypoglycemia episode. I needed to hook up my IV nutrition called TPN to infuse sugar into my bloodstream. This would raise my blood sugar. Time was of the essence.

I locked the door and did my business as fast as possible. When I exited, the woman and the small child were waiting. I felt really bad. I guess they also needed to use the bathroom. Did I sin? Should I have waited for the pair and asked if they needed to use the bathroom and allowed them to go first?

 

31 tomatoes…An Unexpected Blessing!

Over the weekend, my mom attended a farmer’s market. She called me as she went from vendor to vendor asking what produce items I wanted. When she came to one stall, she asked me if I wanted tomatoes. I said, “Yes, three or four tomatoes would be great.” My mom replied she did not have a lot of money with her. I then said, “That is fine. Get me one or two tomatoes.” The phone conversation ended.

When my mom arrived home, she gave me many surprise items such as fresh green beans, lettuce, salad mix and of course tomatoes. When I was emptying one shopping bag, there were three bags of tomatoes. I then sorted through another shopping bag which had another bag of tomatoes. I was confused. I thought, “Why did my mom get so many tomatoes?” I then asked my mom this question.

She told me that is what I had asked for. I had wanted 3-4 bags of tomatoes. I laughed. I said, “No. I wanted 3-4 TOMATOES not BAGS of tomatoes!” As I took the tomatoes out of the plastic bags, I counted. There were 31 tomatoes! I laughed. Oh my! What am I going to do with so many tomatoes.

I have a recipe for jambalaya. It uses fresh tomatoes. Since getting fresh tomatoes is often hard, I make the entree sparingly. Well, it seems now I have fresh tomatoes. So jambalaya here I come!

When the dish was finished cooking, I eagerly used a ladle to scoop out some stew and placed it into a bowl. I then enjoyed the delicious contents. OH MY!!! This was so good! I had forgotten how sumptuous this food was. And just like that. My 31 tomatoes were turning into an incredible blessing. I have about 25 more tomatoes left. My mind is dreaming of all the delicious food these tomatoes will make.

Ice Road Trucker: I met a SUPER Star!

Recently, as I was getting ready for Bible study, I was notified three people who regularly attend could not come. I was really bummed. On any given night, there are between two and seven people. With three people not coming (plus one person who is out of town for a few weeks), we were down to three people attending the study.

When I arrived at study, it was just me and another person. I waited and waited. At 6:30, there was still just the two of us. I was really bummed. Bible study works best if there are at least three people. Perhaps tonight just wasn’t my night.

At 6:34, there appear to be two cars which pull into the parking lot. There are other activities going on. I assure myself, the cars are for the other events. Shorty thereafter, a gentleman walks into the building. I ask him if he is looking for Bible study. He says he is. I tell him I am with the Bible study. He then informs me he will be right back. He needs to tell his wife they have found Bible study. A few moments later, the man and his wife into the building. On their heels is the other person who regularly attends. She apologizes for being late.

I am beaming with excitement. We now have five people! This is going to be a great study. Before beginning our session, the couple divulges information. They are from Canada. They are in the process of closing on a home. They need to be back to Canada before the end of the year. The man works as an ice road trucker.

Upon hearing the man is an ice road trucker, I nearly leap out of my skin. AN ICE ROAD TRUCKER!!! That is one of my FAVORITE occupations! I learned about it watching shows on the Discovery channel many years ago. The man tells us a little bit about his job. I am glued to my seat. I am so excited. I really want to take a photo with the man, but I think that will be too weird. I am just over the moon to meet someone who works an amazing and vital job. Truck drivers are under-appreciated in our society, but they are the ones who keep countries open and operating.

For the rest of the night, I am praising God over and over again for sending these people to the Bible study. It was definitely a highlight for my week and probably my year. I feel like I just met a SUPER STAR!

I’d rather be the victim than the victor

Over the last few weeks, a number of people have contacted me regarding various topics. The main theme is: I need help. Can you help me?

I have learned long ago to not get entangled in other people’s affairs. If I see someone post on Facebook about having a certain medical condition or wanting help with a personal issue, I try not to get involved. I will only give encouraging words and/or tell the person I am praying for him. I have found if I try to offer assistance, it is a waste of my time and energy.

These last few weeks, people have reached out to me, specifically asking for assistance. I did not want to respond, but out of courtesy I opined. I tried hard to make my comments short. I tried to be to the point. After feeling as though I did a Herculean job, I submitted my work. Sadly, the people did not seem to want my assistance. My words fell on blind eyes.

I try not to be upset, but it is hard. I have limited energy. It takes a lot of concentration to string together words and coherent thoughts. Many times I have complex ideas I try to sift down and explain in kindergarten terms. It is a grueling process.

After the event is over and done with, I wonder why I allowed myself to be dragged into these situations. The person seemed so desperate. The person asked specifically for my help. In the end, they all have the same outcome. They do not want my help. They just want confirmation they have the worse situation anyone can imagine. If you give them ideas on how to overcome the challenge, your words are met with stiff resistance. I am told, “No! There is no solution to my situation! Nothing will help me!”

People do not want to change. I need to remind myself that.

In today’s culture, people want to play the victim and receive all associated pity and sympathy. If there is no magic pill to correct their situation, then there is no hope at all. People do not want to find a way and do the hard work of changing—changing your diet, changing your lifestyle, changing your friends, changing the way you react to certain situations, etc.

I have always believed there is a way to get out of every event in life. It usually is not easy, but there is always something which can be done. Unfortunately, people have become very lazy. They would rather live a miserable life than try to change. They would rather be the victim than the victor.

YouTube: The Emotional Drain of Trying to Help Others

Having a YouTube channel can be emotionally draining. In less than 24 hours, I have been asked for information about post virus syndrome, which required me to do research on this condition and the mechanism which leads to the symptoms. It was very interesting, but very energy draining to read medical journals. I tried to help the person as much as possible, but in the end, time is the only thing which will help the person recover from the illness.

Another woman reached out to me to help find remedies for pain and associated symptoms. It took a while for me to reflect back on measures I have taken to reduce my body’s pain. The biggest thing I have done is change my diet. Food allergies/sensitives plus eating sugar were stressing my body and producing severe pain. I tried to give the person ideas on how to reduce pain levels in the body

And then a man from India (whom I have been communicating with frequently regarding his father after his father got a tracheostomy tube earlier this year) informed me his dear father passed away. Although I have never met the father, I was deeply saddened to hear of his passing. The son had tried so hard to give the father the best possible life. I hope and pray the family find comfort during this time of need.

Don’t open that letter. Don’t answer the phone. Don’t look at social media.

Usually my life is pretty low key. I go from day to day without much happening. Once in a while something dramatic will occur—sepsis, blood clots, pancreatitis, etc. However, these episodes are usually spaced out.

Today was a chaotic day. It actually started last night, when before going to bed, I felt the need to check Facebook. There on my newsfeed was a notice a woman who had Mitochondrial Disease passed away. I did not know her personally, but I felt drawn to look at her profile and obituary. I found out she used to live very close to me. I would drive by her home frequently going to the farmer’s market and grocery store. How sad it was I was so close to someone else with the same medical condition and never knew it!

Today, I received a bill stating I owe almost $750 for medical supplies I thought were covered by insurance. I found out today, they are not. I just received another shipment of supplies last week. I will have to wait to see if I also get billed for those. If I do, my balance will be almost $1,000.

Shortly after finding out about the medical bill, I received a phone call from my pancreas doctor. My original appointment was supposed to be in October. When October came, I found out it was never scheduled. I then scheduled the next available appointment which was in January. Today, that appointment was cancelled because the doctor will be out of the office. The next available appointment is in February.

Feeling a little defeated, I check my email. There is a notification I have a new YouTube comment on a video. The comment is negative and sarcastic. I do not respond to the comment. As a rule, I wait 24 hours to a week to respond to comments which require any sort of thought. Moreover, I have to decide if I even want to respond. Sometimes it is not worth the effort to explain my health to someone if I feel it will fall on blind eyes.

So that has been my day. Death, a medical bill, a cancelled appointment and a negative comment. I feel like just lying here and looking at the ceiling. I am ready to go to bed for the night.

1,000 Subscribers. 1,000 Thank You’s!

When I began my YouTube channel in April 2020, I did not know much about YouTube. I did not know what it meant to be a subscriber or how subscribing to a channel helps bolster the channel by ranking it higher in search results and on the sidebar.

When I started posting weekly videos, I was thrilled people subscribed to my channel. I was amazed people felt compelled to hit the “subscribe” button. I told myself if I made it to 100 subscribers, I would be an actual YouTube channel. When I hit the 100 subscribers milestone, I was overcome with joy.

Next up was 500 subscribers. I thought if I got to 500 subscribers, people would see my channel as having videos worth viewing on a regular basis. I was overjoyed to reach 500 subscribers.

Then, I set my eyes on 1,000 subscribers. When YouTube shows numbers on its website, they show the actual number for anything less than 1,000. Once 1,000 is reached, the number is written as 1K. The actual number is often not recorded. Let’s say a person has 1,142 views on a video. It will be written as 1.1K views on most devices. When one million is reached, it is written as 1M. I don’t know why, but I really wanted to reach 1,000 subscribers so my channel would read 1K subscribers.


I have been patiently waiting week after week as the number of subscribers kept climbing toward the 1K mark. I do not keep a close eye on the number of subscribers, but I check it once every 24-48 hours. Yesterday morning I checked, and I had 998 subscribers. Oh, I was so close! I refused to let myself check my channel for the rest of the day. This morning, I checked my channel, and behold, it now said 1K subscribers!!! I had done it! I was nearly leaping and jumping for joy! I was also praising God. I know He allows or causes all things to happen. To reach this 1K milestone was such a precious gift.

You may ask what is my next milestone. That would be 100,000 subscribers. When you reach 100K subscribers you can apply for channel verification. Once your channel is verified, you get a check mark next to your channel’s name. Don’t worry. I am not set on reaching 100K subscribers. That takes a lot of time and energy to produce his quality videos and to respond to 100K subscribers’ questions and inquiries. I am enjoying 1K subscribers and feel very blessed to have reached this milestone so quickly.

Pancreas Pain: It’s BACK!

Last week Sunday: I eat breakfast. As I am in the kitchen sipping some tea before heading back to bed, I suddenly feel a knife like pain cut through my pancreas. It starts in the tail of the pancreas and goes straight across towards the head of the pancreas, but before the pain makes it that far, it stops. It feels as though something is stuck. My pancreas starts spasming. It feels as though my pancreas is trying to expel something from it. I am doubled over in pain and nearly fall to the ground. Spasm after spasm spreads through my pancreas. I become severely nauseous.

After five minutes, the intense spasming stops. I sit in the kitchen too overwhelmed with fatigue and pain to move. I try to collect my thoughts. I think to myself, “This is not normal. I have never had anything like this happen to me before.” Before going to bed, another major pain attack happens. Again, it feels as though a knife is searing through my pancreas. Something gets stuck. My pancreas starts spasming. I feel as though I am going to die from the pain.
 

Fighting through involuntarily sobs from the intense pain, I struggle to the bathroom. I take one fourth of a pain pill. I go to bed and pray for the pain to stop.

I lie in bed, fighting through the relentless pain. I pray this is nothing serious. After two hours, the pain remains. I take another fourth of a pain pill. Two hours later, finally I have pain relief.

The following two days, the pain acts like a nagging memory. It is hard to discern if the pain is there or if my body is simply “remembering” the pain. Then, I eat breakfast on day three. Bam! The pancreas pain is back. Every day, I eat breakfast and then become sick with pancreas pain.

Yesterday was different. I was able to eat breakfast, but when I had a second meal (supper before going to Bible study), my pancreas erupted in pain. I reluctantly took a fourth of a pain pill. The pain subsided enough to get through Bible study. When I got home, the pain started increasing again.

I am concerned this new pancreas pain may need medical attention. I dread the thought of going through an ERCP—a procedure in which a scope is placed down the esophagus through the stomach into the small intestine and then finds its way up the bile duct and into my pancreas. This is a brutal procedure as it ALWAYS causes a severe pancreatitis attack. And what if nothing is found? Will I have to live with this new pain forever.

I am exhausted. This is nothing more draining than pain. I hope and pray this resolves on its own.

Let me show you a photo!

Whenever I leave my home, I am very cautious. I constantly look at the ground. I stay on the driveway and sidewalks. I do not travel through the grass unless it is absolutely necessary. I will go out of my way to stay on paved walkways. People may think I am a little bit crazy, but I know there are slithering creatures around.

The one place I am always very nervous about is the garage. There are many nook and crannies in which flexible animals can find their way into. I do not like surprises, and I do not want the “joy” of having an acrobatic critter leap out at me. I try to spend as little time as possible in the garage. If I need something from the car, I will get into the car and close the door. I do not want any company while I am on my mission.

Today, I was still only half awake even though it was after 1 p.m. I went to the kitchen to make some tea. My mom asks if I had been on Facebook. I said, “Yes, but only to check for messages.” My mom then thrusts into my face a photo she took on her phone of a rattlesnake! The rattlesnake got caught in a mouse trap. The snake was still alive, and it was in our GARAGE! Well, ladies and gentleman, my heart nearly leaped out of my chest. Now, I no longer desired a cup or tea. I needed to go to bed to allow my adrenal glands to calm down and my fight or flight hormones in my body to degrade.

Unworthy to receive so much communication

 I sit in my bed, exhausted from a long day. I am alerted to messages which are streaming in to my Facebook, YouTube and email accounts. Words or praise, questions and concerns, each word I read carefully, trying to understand the writer’s intent. People ask, “Will my father ever get better?” or "Will this tracheostomy tube be permanent?" Others sing shouts of “Thank you!” and “Praise the Lord!” as they rejoice over finding valuable information in one of my videos.

I am overwhelmed with emotions. Who am I to affect so many people? Who am I to be worthy of this much electronic communication?

A friend of mine reached out to me and told me how her life has not turned out as she had hoped, and a recent video I released helped her during a dark time. I am dumb-founded by my impact on the world. I could have never imagined people would find so much meaning from my work. It inspires me to keep on keeping on, even if I am struggling to find energy.

A Blessing After a Long Day of Sewage Cleanup

Yesterday, I decided to take a shower. For most people, this is a normal, every day affair. For me, I only shower once a week…sometimes it is less frequent if I am sick or tired. I turn on the shower water. After the water warms up, I enter the shower.

I notice the shower drain seems sluggish. Then, the drain starts backing up water faster and faster. I end my bathing time and get out. To my horror, when I exit the shower, there is water on the floor. Oh no! The shower backup is causing the toilet to leak water. I carefully sludge through sewage to get to dry floor. I dress and go to bed. I tell myself it soon will all be dry.

I lie down. A few hours later, my bathroom is submerged in water. The water was draining from my shower into my bathroom. A long night of clean-up commenced. It really did not matter how much water I scooped up and put in a bucket, any water poured down the drain from most of the rest of the house, the sewage would drain into my bathroom. My dad contacted a plumber.

I had a restless night of sleep. I had to go to the bathroom several times during the night. Every time, I had to traipse across the house to another bathroom in order to do my business. I was very tired by the time I made the trip back to my bed. Sleep was fleeting.

I was half asleep this morning when my dad came into my room and said the plumber would be here soon. I got out of bed and moved my medical equipment out of the way. I just got everything arranged when the plumber arrived. Twenty minutes later, the blockage was cleared. I was praising God for having a working bathroom again.

I went to bed for the rest of the day.

As I laid on my bed, I receive a phone call a prescription is ready for pickup. I am confused I do not have any prescriptions ready for pickup. I look online. The pharmacy contacted a doctor for a prescription refill. I have not seen this doctor in over a year. But, the doctor gave me a one year refill on a medication I use daily. I was thrilled. It saves me from having to make an appointment and get the medicine through my primary care physician.

I smiled and thanked God for His kindness. After a long day, I appreciated this wonderful blessing.

There’s a HUGE cockroach on my toothbrush!!!

On Sunday night, I am blurry-eyed and ready for a long night of sleep. I begin doing my nightly routine of setting up my IV nutrition called TPN, washing my face, putting my pajamas on, etc.

I open the cabinet in my bathroom to place my hair tie inside. I take my dental floss, yank out a small strand, and place the dental floss back in the cabinet. I floss my teeth. I set down my dental floss strand and am now ready to brush my teeth. I look into the cabinet to grab my toothbrush. There is a HUGE cockroach crawling right toward my toothbrush. I am stunned. Where did this massive bug come from? I look at the cabinet. In the back, there is a small hole which allows an electrical wire to run from an outlet on the side of the cabinet to the wall behind the cabinet. Is that where this creature came from? How did it fit its gigantic body through such a small hole?

When I regain my faculties, the cockroach is now hanging out on my toothbrush. “Rats!” I think to myself. I was hoping the cockroach would crawl out of the cabinet, but now it seems to be taking up residence on my toothbrush. I am growing impatient waiting for the cockroach to move. I do not want to disturb it. I want it to crawl forward out of the cabinet.

The cockroach finally makes it way toward me. I am dying from exhaustion. All I want to do is go to bed. I have a sandal in my hand, poised to strike the cockroach. When the massive critter crawls out of the cabinet, I strike too soon. The cockroach is shielded from a direct blow because my sandal hit the side of the cabinet. My exhaustion greatly impeded my cockroach killing skills. The cockroach, as quick as lightning, darts back into the cabinet. I am overwhelmed with disgust. I shut the cabinet door and hope however the cockroach got into the cabinet, he can find his way back out.

I hurry out of the bathroom and close the bathroom door behind me. I do not want the cockroach to find its way out of the bathroom and crawl into bed with me. I push aside the thoughts that a massive cockroach is throwing a party in my bathroom cabinet. I quickly fall asleep.

In the morning, I search for the cockroach, but I do not find it. I am happy I did not discover the roach, but I am a little concerned where the bug might have traveled to. Hopefully, the creature found a new home somewhere else…in a dark place where I do not have to see it.

Keep Your Words Few and Your Message Sweet

When I first began my YouTube channel, I read some excellent advice. The YouTube blogger stated that text online can be misconstrued. It is best to answer questions and comments on your YouTube page in as few of words as possible. Well meaning words can be perceived wrong. You do not want to make a person mad. An angry viewer can destroy your YouTube channel.

With this advice in mind, I am very cautious when replying to comments on my YouTube page. I sometimes think a few days about my response before typing up my comments. This safeguards me from carelessly writing words…words which are hard to rescind.

As I reflect on this advice, I wonder how the world would change if everyone responded to social media with such thoughtfulness and concern for one another’s well being. If you had to wait 24 hours before responding to a post, would your words change? Would you post as much as you do if everything you posted could mean the end of your social media account?

YouTube has taught me many things…one of the most important is to guard my words. I want my speech to bring blessings to those around me. Having a YouTube channel has challenged me to keep my words few and my message sweet like honey.

“Pleasant words are like a honeycomb, sweetness to the soul and health to the bones.” Proverbs 16:24

Blogging for 5 Years. Thank you for everything!

In the summer of 2016, I was emotionally devastated by the news that my dear friend Milly had passed away from Mitochondrial Disease. I wanted to honor my friend in some way. Milly had a YouTube channel and posted videos about her various challenges and medical conditions. I thought about creating a YouTube channel in her memory, but who am I to create videos? I did not have a laptop or any way to film myself. So, I decided to deal with my grief by creating this blog.

For 4.5 years, I wrote two blog posts a week. It was a tremendous blessing to record my life and to share with my family and friends my our struggles. Earlier this year, I decided to cut back the number of blog posts to just once a week. Early in 2021, I launched a personal YouTube channel. I traded one blog post a week for one YouTube video. I found it rather ironic that I now am doing YouTube videos just like Milly.

When this blog was started on August 1, 2016, I could never have imagined where my health would take me. About two weeks after writing my first blog post, my breathing abruptly became severe. For the next four months I struggled to breathe. In December 2016, I was started on non-invasive ventilation. On May 3, 2017, I had an urgent tracheostomy procedure to get a tracheostomy tube and be started on invasive ventilation. From there, my health has waxed and waned. My life has been fraught with frequent trips to the emergency department and too many days as a patient at the hospital. And through it all, I have had this blog and had the endless support of so many.

I sincerely thank each and every one of you for all your support. I am graceful your love and encouragement has helped me through some dark times. Thank you for turning a time of mourning into one of joy and gladness.

Is this what it means to change someone’s life?

For sixteen months, I have been making YouTube videos. It has been a lot of trial and error trying to find content and to satisfy all my viewers. I am always a little lost when making videos. What should my topic be? Is this information too personal? Will this information offend someone? Sometimes I receive messages to let me know I am on the right path, but for the most part, I am alone on my own.

Sporadically, I would receive a message from someone. A question would be asked and then the communication would end. But recently, there has been a tremendous upswing in correspondence. There are emails; Facebook, MeWe and YouTube messages. I find myself struggling to keep up. Many of the messages are heart-wrenching. They are filled with fear and trepidation. I do my best to give the person hope and pray the person finds a way to handle all their emotions.

Recently, a person noted how happy I seemed in my videos. The person had a father who got a tracheostomy and was soon to be released home. The person hoped the father would also find the happiness I had. As I read the message, I nearly broke down in tears. I always hoped my videos would be viewed as being upbeat and positive. Reading this person’s words reassured me I was on the right track.

Another person contacted me because she was doing a speech for a class. She choose me and my YouTube channel. I was dumb-founded that anyone would want to give a presentation about me. Wow! I feel a little star-struck. I also am deeply moved that so many people seemed to have been affected by my YouTube channel. After spending many years confined to my home, it is such a blessing and praise to God that He has decided to use me at this time in my life. When I thought my life was over, God has decided my life has just begun again. Who could have imagined this? Who could imagine I could change someone’s life living my life on a ventilator? Praise be to God!

Exhausted but Encouraged

Last week seemed like the longest week. I have been having issues sleeping. When I get into these slumberless fits, my body refuses to sleep during the night and will not sleep during the day. When I do manage to get some zzz’s, I wake up after a short period of rest. I tried to be productive last week, but it was so hard. My body was extremely exhausted. After a week with little slumber, I finally got some sleep on Monday night.

This week, I have a heap of things I need to do. I am trying to prioritize and get everything done, but time is quickly slipping away.

As I was getting everything ready to upload my video to YouTube, I realized I have the film edited, but I did not make a thumbnail. I really do not like making thumbnails. I am not creative. The process is often painful, and I am rarely satisfied with the end product. So now, I have to scramble to make a thumbnail for my video tomorrow.

As I was doing some things on YouTube, I happened to look at a video I uploaded 2 weeks ago. To my shock, the video was a smashing success! I often do not look at the number stats for my YouTube uploads, but this video surpassed a lot of my videos in the number of views it received, and it is only two weeks old! I was thrilled and found new inspiration to continue making films.

With that, I need to go. My YouTube thumbnail needs to be created, but my body is pulling me to sleep. Perhaps God will be gracious and allow my thumbnail to quickly fall into place.

The Cleaning Ladies are Here! I Need You to Speak Spanish!

We have cleaning ladies who come once every great while to clean. There were items in the kitchen which needed to be put away so the counter was cleaned off. I was too tired to do it last night. I told myself I would be up in the morning and do it then. I woke up at 7:30 a.m. It was too early to get out of bed. I rolled over and remained lying in bed. It felt like just a few moments. I looked at the clock and was startled it was 9:33. The cleaning ladies were to come at 10 a.m. I race out of bed. I disconnect my TPN and flush my line. I go to the kitchen. My mom had cleaned off the counter. I am half asleep as I make some tea. I grab my food and put it in my room. The ladies are here.

When the cleaning ladies come, it is sometimes one person and sometimes two. One lady has a good understanding of English. The other ladies do not. I was relieved when I saw two ladies arrive. Good, we will have no language barrier. I assumed the one lady was the lady who spoke English. My mom starts talking. She realizes neither one speaks English. I am summoned.

Once upon a time, I used to know Spanish. I rarely speak it and my memory has faded over time. So, here I am, half asleep, with my hair a mess, and wearing clothes I threw on (It's 90 degrees out, but this girl is wearing a fleece sweatshirt because I did not have time to put on anything which required me to use extra time to get it over my PICC line). Now I need to speak some Spanish.

Thankfully, I have learned if you use basic Spanish words and lots of hand gestures, the message gets across. Also, using words which are the same in both languages helps. Patio is patio. The one woman was so kind. As I was trying to think how to say over there, I used a word which meant "way over there". As I was saying it, the woman gave me the correct word. I appreciated the help.

So far, everything is going well. The one woman has been here before and knows what usually gets cleaned. That was a lot of excitement for the morning. I am ready for a nap!

Back to School: I don’t miss that

The last few weeks, my Facebook feed has been full of kids going back to school. There is the obligatory first day of school photo, and many kids hold up a sign with a few facts about the child.

As I look through the photos, I do not miss going back to school. I do not miss the anxiety of having new classes, a new schedule, new kids to get to know…and then there is the stress of school work. There are constant assignments, projects and tests. The work never ended. It did not matter how carefully I planned my schedule, it was as if I could never get ahead—I never had time for a break.

Many people have wonderful memories of school. I do too. But I would take being an adult an adult any day. There is so much more freedom being an adult. If you do not like to wake up in the mornings, you can find a job which starts later in the day. If you do not like math, you can find a job in which computing numbers is not a requirement. Although there may be surprise tests and challenges as an adult, no studying is necessary. You either pass or fail and move on.

If my brain wants to give me a nightmare, it will dream of being in school. The early mornings, the rush to get to school, the constant questions asked by the teachers, pop quizzes, boring lectures and of course forgetting your locker combination or not being able to get your locker open. Whenever my brain reproduces these images from my school days, I wake up in panic. When I realize it was all a dream, I thank God I no longer have to go to school. I served my time. I am glad I am now free.

Scam Alert

We have all seen on television news reports of people (mostly elderly folks) who have been taken advantage of by scams. The story is often the same. The person is contacted and told a friend is in need of money. Can they wire transfer funds into a foreign account? The person out of the goodness of his heart complies. It is a scam, and the person loses all the money.

Recently, schemers have become clever. They call and pretend they are the IRS. They call and claim there is something wrong with your credit card or bank account. Using a keen eye, it is fairly easy to side step being a victim of scams. However, yesterday, I was involved in a new scam, one which was VERY HARD to realize it was not a real situation.

My mom gave me my mail. There was a letter from a medical company. I opened it. Inside, on official stationary, the letter explained the company’s records had been breached by a third party. An investigation was conducted. It was discovered my records were part of the cyber attack. The letter explained I should contact the three credit bureaus to ask for copies of my credit report to make sure there was no fraudulent activity. I was given the information to the three credit bureaus. The letter also advised placing a freeze on my account to prevent any unauthorized activity.

The letter continued, stating they valued my relationship with them. The company was offering one year of free credit monitoring. I was given a code to sign-up with the credit monitoring company. The letter ended with another apology for the security breach and promised the company was doing everything possible to prevent future attacks. The letter was signed by the company’s CEO.

As I read the letter, nothing seemed unusual. This letter was almost identical to another letter I had received from another company in 2009 when my former employer suffered a cyber attack. My former employer offered three years of free credit monitoring, which I took advantage of. The credit monitoring was a great service and alerted me to any suspicious activity on my account. Having this great experience from the past, I was happy to sign up for a free year of credit monitoring once again.

When I went to the credit monitoring company’s website, I suddenly had an urge to research the company. How did I know this credit monitoring company was real? I ran the company’s name through an internet search. The company’s website looked real. There were reviews about the company and articles written on various websites stating what a great service this credit monitoring company provided. As I scrolled down to the bottom of the search page, I saw there were suggested searches listed. One of them was, “Is ‘X’ credit monitoring legitimate”. I clicked on the suggested search.

Immediately, my screen lit up with urgent warnings stating: “‘X’ credit monitoring is a scam!” I read people’s stories. They were all the same. They received a letter from a company stating there was a cyber attack. Their information was part of the attack. Information was given to contact the credit bureaus, and free credit monitoring was offered.

One man stated this happened to his company. I will call his company Good Tree Inc. “X” credit monitoring service cyber attacked Good Tree Inc. They stole Good Tree Inc clients’ information. The clients were then sent letters on fake Good Tree Inc stationary that Good Tree Inc was cyber attacked. The victims were told to contact the three credit bureaus and to sign up for a free year credit monitoring service with "X" credit monitoring company.

The catch with this all is when you sign up for the free credit monitoring service, you have to provide your personal information including your date of birth and social security information for the company to monitor your credit. What they are really doing is getting your person information to steal your identity. I was shocked how good this scheme was. I also was surprised I was almost scammed.

Schemers are lurking around every corner. With the convenience of the internet, protect your personal information. If you sign up for any service, make sure the company is legitimate. Do internet searches on the company and also read reviews. Please make sure if you are reading reviews, they are NOT on the company’s own website. Look for independent reviews and find websites which allow anyone to post a comment or review. After carefully doing research, then make a decision if your should use the company and its services.

Blood Clots: Hello Old Friend

I scroll through my online prescription account at my pharmacy, looking at the number of refills I have on my medicines. A drug called nitroglycerine pops up on my screen. (I no longer take this medicine; it is used to dilate the blood vessels of the heart.) I am instantly transported back to last summer. It was a time in which blood clots plagued my life. I nearly died when a massive clot traveled to my lungs. I think about the d-dimer test, a test which is used as an indicator for blood clots. I think about Lovenox, a shot given subcutaneously to break up blood clots. I take a moment to praise God I have not had any blood clots since September 2020.

Twenty-four hours later, I develop a sharp pain in my chest. I ignore it. The next morning, my PICC line arm is slightly swollen and discolored. I groan. This likely means there is a blood clot attached to my PICC line.

A series of events happen. A trip to the ER. A d-dimer test. Two shots of Lovenox. The frightening memories of last summer come roaring back. I praise God that despite everything happening, I do not have the horrible chest pain and the severe shortness of breath.

This morning, when I got out of bed, my left calf ached in pain. I went to the kitchen. I was struggling to breathe. Soon, I found myself gasping for breath. I go to bed. I cannot catch my breath. I huff and puff. My ventilator is alarming. I get out of bed and more around. I twist and turn. Finally, I feel the pressure and tightness in my chest vastly decrease. I praise God, the blood clot must have moved. For the rest of the day, I am short of breath. My left calf aches. My PICC line arm throbs with each heart beat.

I wonder how this will all end. Will the clots pass on their own? Will my body break up the clots like it did last summer? Will I have to go back to the hospital? Will I have to get a new PICC line? So many questions swirl through my head. I cling, cleave and hold fast to God that He will provide a way.

If You Can Dream, You Can Do It!

I sit in my bed feeling absolutely defeated. After having spent nearly my whole life pursuing one dream, everything lies shattered on the ground. Since I was a preschooler, I have wanted to become a doctor. I lived my whole life for that dream. But a series of serious health crises allowed underlying medical conditions—conditions I did not know I had—to rise to the surface. It seemed as though one minute I was running up and down stairs. The next, I was clinging to life.

I tried everything to get better. I went to endless appointments; I tried countless medicines. I changed my diet. I learned about alternative medicine. I started taking vitamins, minerals, herbs and supplements. My health continued to decline. I sought out various mental wellness teachers. Perhaps if I changed my mind, I could change my health.

During a bad migraine spell—one which left me bedridden and unable to lift my head off the pillow—I watched the motivational speech Wayne Dyer. I hung on to every word…but his words angered me. He kept saying, “If you can dream it, you can do it!”

This may be positive advice to people who do not dream, but I dream a lot! I dream all the time. I dream about not being afflicted by all my medical conditions. I dream about not living my life attached to a ventilator. I dream about being able to go back to medical school and becoming a physician. I dream so many things.

I decide I am just not trying hard enough. Perhaps I am allowing my medical conditions to dictate my effort. I try to push through my exhaustion and symptoms. Soon, my health deteriorates to such a state that my GI tract starts failing. I pushed too hard. I used too much precious energy. My body is giving out.
 

Night after night, my dreams comfort me. I dream I am free from all my health afflictions. It does not matter how much I dream, my dreams remain my dreams. Perhaps in an ideal world in which disease does not prevail, maybe then all we need to do is dream. Until then, I cling, cleave and hold fast to God that as I struggle through my health, I am able to endure to the end and receive the crown of life.

“Blessed is a man who preserves under trial because, having stood the test, that person will receive the crown of life which the LORD has promised to those who love Him.” (James 1:12)

The Struggle: To Attend or Not Attend

Infrequently in my life, I am invited to attend social gatherings. The reasons for the lack of invitations vary from people not knowing how to accommodate my medical needs to people forgetting to inform me of the event. When I am asked to go to a gathering, it is always a tug-of-war inside me.

My immediate response to any invitation is “YES!” But then my rational self interjects and reminds the rest of my brain I have little energy. I need to see when the event falls in my schedule. If I have a medical appointment or need to get blood work done on the same day or on a day adjacent to the social, then I have to decline to attend.

But what about a gathering which does not interfere with anything else on my schedule? Then another battle erupts in which I have to weigh the pros and cons of going. How long will the event be? Will there be electrical outlets available to plug in my ventilator and heater/humidifier? How far do I have to travel to the event? Will it be noisy? How many people will be present? And the list of questions goes on and on.

I often wish my life was simpler. Before becoming significantly ill, if I was asked to go to a social, the question swirling in my head would not be if I should go, but what should I wear. I miss my old life and the ease of going anywhere on a moment’s notice. Life with chronic illness is hard, and it often times drains the fun from attending events.

Proactively Walk Out Your Faith

During the last several weeks, occasions have arise week after week in which small things have caused me to stumble in my walk with God. Someone would say a comment which would set off my emotions, and before I knew it, my emotions were leading me astray down the path of sin. After the incident, I felt terrible. I had failed the test. I had let God down. I had inhibited God’s endless teachings to guide me down the correct path. I was a terrible representative for God.

Over the weekend, I was listening to a preacher who was talking about actively living each day for God. We need to be constantly meditating on Scripture and should be proactive in our lives. We need to be ready for situations and act before our emotions take hold of us. I thought about this teaching over and over again and decided I should try to be more proactive in my life. The very first test would be a trip to the lab to get blood draw.

Yesterday, I arrived at the lab for my blood work. I consciously kept thinking about God and about ways to show God I loved Him. At the forefront of my mind the verse, “Love your neighbor as yourself” (Leviticus 19:18) remained constant. I checked in for my blood work and waited. When the lab technician called me back, a woman was at the lab front door trying to enter. The elderly woman had medical equipment and a mobility device. Although the lab technician was waiting for me, I decided to travel in the opposite direction to the front door and hold open the door for the woman. Once the woman was safely inside the lab, I then headed back toward the lab technician to get my blood work done.

While entering my information into the computer, the lab technician asked me about where I was on the lung transplant list. I knew at once, the woman was making a simple mistake. She assumed since I used a ventilator I must have bad lungs. A lung transplant would remedy my breathing issues. Although this may be true for some people, for me, my lungs are fine. I need a ventilator because my breathing muscles are weak. Getting a lung transplant will not improve my breathing issues.

I could have tried to explain to the lab technician she was mistaken. I did not need a lung transplant. But I have learned in the past, correcting someone’s lack of medical knowledge makes the person feel bad. So, instead, I chose my words carefully and said, “I am not eligible for a lung transplant.” This statement is 100% correct. I am not eligible for a lung transplant because my lungs are not the issue. You do not do a lung transplant on someone who has functioning lungs. But, this statement allowed the lab technician to feel as though what she assumed about my health was not errineous. The woman told me she was sorry I was not eligible to get a lung transplant. The situation passed without anyone’s feelings being hurt.

When I left the lab, I turned a corner to exit the building. An elderly man was shuffling along pushing a walker. I asked the man if he was going to the lab. He said he was. I swung around and opened the door for the man. He thanked me for my kindness.

For the rest of the day, I thought about everything which happened at the clinic. And for once, I did not feel terrible about anything which transpired. Instead, I was happy I was able to love my neighbor as myself to three different people. I smiled and thought perhaps I may have passed today’s tasks.

The Long Road to Recovery

Two weeks ago, my mom underwent surgery to repair and replace two discs in her neck. My mom had been having excruciating pain in her neck, back, arms and head for five months. Imaging suggested one disc in her neck had degenerated; another disc was ruptured. Surgery was needed.

After my mom had the procedure, the doctor said my mom’s neck was a mess. It was much WORSE than what the imaging indicated. Both discs were almost completely gone. It was bone on top of bone grinding against each other. Moreover, without the discs present, all the nerves exiting my mom’s spinal column at those two locations were being crushed by the vertebra.

Since surgery, my mom has been on the slow road to recovery. First, she had to recover from the surgery. Now, as her body is healing, her nerves are flaring up. Everything which was being compressed is now trying to heal. The biggest challenge are the nerves in her right arm.

After two weeks of recovery, I am happy to report my mom is starting to be able to do things on her own. Today, she was able to take a shower, she took a short walk and she is able to sit for short periods of time out of bed. I smile as I witness each milestone. The body’s ability to heal is such a miracle.

 

America: The Land of Great People

The last two weeks have been a whirlwind. I traveled with my mom many, many miles to comfort her as she under went a major surgery on her neck. The days on the road were long and filled with lots of traffic. When it felt as though we could not travel any farther, our destination to stop for the night appeared on the highway.

When we stopped, people were quick to assist our party. A gentleman saw my medical equipment and offered to help. He lifted my wheelchair out of the van. He was so sweet and kind. He felt honored he could assisted us.

At another location, our bellhop cart refused to move in the forward direction. A woman in the parking lot sprang into action and lugged the cart all the way into the hotel and even got it all the way to our hotel floor. I was stunned and amazed someone would go so far out of her way to help us. And the story of America’s kindness continues from hotel to hotel and from hospital to gas station.

The media likes to portray this country as one of division and filled with animosity. But the reality is this nation still stands on one of the Bible’s greatest teachings: “Love your neighbor as yourself” (Leviticus 19:18).

Happy Birthday America. May your kindness and generosity continue for another 245 years.

Trying to save a YouTube video

Today I filmed a YouTube video. I was very tired and was trying to get the video done quickly. During the shoot, I was interrupted. I had to disconnect my microphone. When I resumed filming, I must not have plugged in the microphone.

When I was editing the video, I was very upset one segment of the film had poor audio. The computer microphone recorded instead of the external microphone. The audio has an echo and is hard to understand. I could leave it as is, but since it is the introduction to my video, I decided to re-shoot the segment.

I carefully re-set up my camera to film. I hurriedly filmed the section. I was very tired and just wanted to be done filming.

A while later, I was editing the clips. I realized when I re-shot the introduction segment, I was talking really fast. I was really upset since this the introduction to my video. In desperation, I searched my editing program. I found a way to slow down the speed of my video clips. I slowed down my introduction to 95% of the original speed. Behold, my speech no longer sounded fast. I was thanking and praising God! I do not have to re-shot this section of my video again.

I quickly finished editing my video and saved the final version. I am so happy my video is finished. I am also grateful I learned a new skill on my editing program. Hallelujah my video is done!

 

Hoping for a great birthday present!

It’s another year, and my mom is another year older. This year, though, things have not been a cake walk. The worldwide closures have cancelled most my mom’s trips to various places around the world. She had incredible adventures planned, all of which were scrubbed one after another as countries continued to keep their doors closed to travelers. My mom found other activities to do and tried her best to keep herself busy.

In January, her neck started bothering her. She has had neck and back issues in the past. Over 40 years ago, she had a fusion in her spine. It seemed as though the pain was right above the fused vertebrae. She tried and tried to get in to see her doctor. It was a long arduous process to see her primary care physician. Then she needed to be referred to a specialist.

The process dragged on and on. Her pain grew worse and worse. She started having significant muscle weakness in her arms and shooting pains down her legs. After doing her own research, she found another doctor halfway across the country who is very knowledgeable about the neck. She was able to see the doctor. He informed my mom her neck is a mess. There are several things wrong with it. She needs surgery and needs surgery soon.

The surgery is scheduled for next week, but a big hurdle has to be cleared: insurance approval. The days are ticking down, but her insurance company has not given the green light. We are all impatiently waiting for the insurance company to make a decision. If my mom does not get this surgery and get the surgery soon, her symptoms will become permanent. Her spinal cord is being compressed. If the neck continues to degenerate, the spinal cord will be damaged.

So, this year for my mom’s birthday, if you could take time and pray for my mom’s surgery to be approved and for the surgery to resolve her neck issues, I would ever be so grateful. Thank you and Happy Birthday Mom!

YouTube Side Effect: Emotional Burnout

Since starting my YouTube channel, people have contacted me from time to time desiring information or guidance about tracheostomies and ventilators. Some individuals have wanted emotional support. I am always honored someone feels I may be able to provide some assistance to them. I help as much as I can. After a few messages or emails, the communication dies out.

Of late, the number of requests has dramatically increased. I am shocked so many people have urgent questions and medical needs. I spend a lot of time crafting my words. I know most of the people are in a fragile emotional state. I try not to say anything which may offend them. I try to stay neutral and always direct the person back to their medical team.

It is very difficult to tease out the questions which may be asked. The person may ask one thing, but in reality, the person has a question on something else. Or, as has frequently been the case, the person does not like the direction the medical team is going and wants me to chime in and tell the person he/she is right and the medical team is wrong.

It is emotionally exhausting for me to read heart-wrenching medical stories. I find myself crying as I read the words written by the patient or caregiver. I should not care about strangers I have never met, but I do. I also spend time praying and petitioning God for His help.

After spending far too many hours answering questions and assuring people their medical team are the best people to ask regarding their medical questions or concerns, I am burned out. I now understand why many people on YouTube put up fences. They do not get involved in other people’s lives. They do not respond to all inquiries from their YouTube viewers. They limit the amount of time and energy they dedicate to their YouTube viewers. As my channel continues to grow, I think I will also have to set boundaries. How this is to be done, I still have to figure out the details. But for now, I am taking a few days away from responding to people in an effort to rest and restore some of my energy. I am emotionally drained.

Appointment scheduled, but when it will be is a mystery

I had a an appointment to my pulmonologist a few weeks ago. Unfortunately, I was hospitalized during the appointment and had to cancel. I have called the office a few times, but no one has answered the phone. Finally, today, someone picked up the phone. I said I needed to schedule an appointment. I was placed on hold for almost 10 minutes.

When the receptionist returned, she had a hard time hearing me. Scheduling the appointment went as follows:

Receptionist: Do you want morning or afternoon?
Me: Afternoon. Can I do a telemedicine appointment.
Receptionist: I can’t hear you.
I scream: CAN I DO A TELEMEDICINE APPOINTMENT?
Receptionist: No. The provider will not be in the office.
Me: Ok. Well, is there a day the provider will be in the office so I can do a telemedicine appointment?
Receptionist: Oh, I guess it is telemedicine. The provider doesn’t need to be here in the office.
Receptionist: Is one o’clock ok?
Me: Yes. But what day is the appointment going to be?
Receptionist: Hello?
Me: WHAT DATE IS THE APPOINTMENT GOING TO BE? ONE O’CLOCK ON WHAT DAY?
Receptionist: Hangs up the phone!

Well, I have an appointment to see my pulmonologist. I just have no idea what day the appointment will be. The office does not call to remind you of telemedicine appointments and usually the telemedicine appointments run very behind. I have been called after 7 p.m. from the office to do a telemedicine appointment.

So sometime in the next few weeks between 1 p.m. and 7 p.m. I have a telemedicine appointment with my pulmonologist.

Long Day: Lungs burning, Head spinning. Bruised arm.

I lie on my bed, huffing and puffing. My body is exhausted. My lungs burn and are heavy with mucus. Today was a long day. I had to travel 45 minutes to the lab to have my blood work drawn for my TPN. While driving, I got a call from my doctor’s office stating I was to come in to their office to have some lab work done.

First, we attempted the lab. The lab was PACKED with people. I sighed and remembered it was a holiday yesterday. The usual heavy load of Mondays has been pushed to today. Then add in the Tuesday lab work and also lab work needing to be done because it is the first of the month, and the lab was busting at the seems with people. I abandoned the lab and went to my doctor’s office.

The nurse at the doctor’s office had to do two different blood draws. She got my vein the first time for the first blood draw. During the second blood draw, she missed and blew the vein. The third vein she missed, but she was able to re-adjust the needle several times (damaging the blood vessel), but in the end she was able to get blood. I prayed during the blood drawing ceremony that the nurse did not bust my beautiful big vein in the fold of my right arm. That is the vein they use at the lab for my weekly blood draws. My left arm is out of commission due to my PICC line. Praise God, the big vein the nurse was able to get on the first try. It was still viable to be poked again for another blood draw at the lab.

When we returned to the lab, I nearly leaped for joy when I saw the waiting room was empty. I signed in and was quickly taken back to a room. The lab tech used my big beautiful vein on my right arm. Pain shot up my arm as the needle went in. My poor arm was so sore and bruised. The lab tech collected the two vials of blood, and then I was out the door.

Now, I am home lying in bed. I am out of energy. My head throbs and spins. My lungs burn with each breath. I praise God this day went so well. I can lie here in my bed until my next big outing next week when I get to travel to the lab and get another weekly blood draw for my TPN. Hopefully by next week, the veins in my right arm will have had time to heal. Hopefully next week, I will only need to be poked once.

Staying humble. A Reminder of Why I do what I do

The last several months, I have been on a marathon. It has been one health complication after another, and it has been a struggle to produce YouTube videos. Any spare time I have, I am creating new YouTube content. As one year has come and gone for my YouTube channel, I have been fixated on one number, the number of subscribers. The number is edging toward 500. I am thrilled my channel is growing…and yet, I feel as though I have lost my vision for being on YouTube. My brain is getting wrapped up in numbers instead of people.

From time to time, people contact me on YouTube. It is often an urgent request. Someone is having a tracheostomy procedure and guidance or encouragement is desired. I do my best to do what I can and very soon the person moves on. I never hear from the person again.

Last week, a woman contacted me. From the start, she was a spitting image of myself in so many ways. I smiled reading her message. I laughed as she told me about her stubbornness. Yes, we are the same in many ways.

She told me she needs to get a tracheostomy soon. She has been fighting the decision for a while, but my YouTube channel gave her the encouragement to go ahead with the procedure. Reading her words brought tears to my eyes and made me stop to thank God.

I started creating YouTube videos to raise awareness about tracheostomy tubes and ventilators. I wanted to let the world know having a piece of plastic in your throat and having a machine push air in and out of your airways is no different than using a wheelchair for one’s mobility needs. It is just another medical device helping people live their best lives.

Suddenly, everything about my YouTube channel fades into the distance. The only thing which matters is helping this person as she prepares for her upcoming procedure and assisting her in any way I can.

As much as I do not like my health and wish I could do something more with my life, I pause and thank God for creating me at this time in history. YouTube allows me to connect with others and enables me to do what I love: helping others through their own trials. What a blessing that is.

So sick...Push on.

Tonight is the night I usually post a blog post. Since I do not like breaking my weekly routine, I am pushing through to write a blog post.

Last week, I had an extremely busy week. When I felt fatigued and run-down on Sunday, I did not think much of it. My body was trying to recover. At 8:30 p.m., I was in bed for the night. I was completely wiped out. I set up my TPN for the night. An hour later, I had a severe headache, shaking chills and felt very unwell. I tried to push aside the symptoms. I was so tired. I slept on and on during the night. In the morning, I had a fever of 101.2 degrees, despite taking Tylenol and ibuprofen. I pushed on.

I have a lot of appointments this week. I stopped running my TPN yesterday because it was making me sick. If I did not use my PICC line, I did not feel that bad. Push, push, push through my symptoms...that is what this girl does. I am not going to the hospital. No. I need to have my medical appointments first.

Today, I could feel my body give out. I was shaking from fatigue when I got out of bed. I was gasping for breath. I told myself, I just needed to make it another 26 hours. Then I could be sick.

Long story short, I did not make it. I reluctantly went to the ER. My labs are a mess. Low white blood cell count, low neutrophils, low red blood cells count, low platelets, high liver enzymes, VERY HIGH c-reactive protein, high NT pro-BNT...etc.

I have gotten fluids, IV antibiotics, had multiple x-rays, ultrasound of my PICC line arm and abdomen, EKG, MANY vials of blood and have received other medicines. I am being admitted. My medical team is trying to sort everything out. Having a low white blood cell count, low neutrophil count and fevers means I am at risk for developing a serious infection. They have done three sets of blood cultures to check if a blood infection from my PICC line may be causing all the issues. I no longer feel as though I am on death's doorstep after getting fluids and antibiotics, but I still feel lousy. If all goes well, I will post a more extensive update to my YouTube channels next week.

Ready. Set. CRASH!

I lie in my bed. My body aches. The muscles in my legs, thighs and arms feel as though they have been lifting heavy boxes all day. I sit up. My head hurts. I am overwhelmed with exhaustion. I lie back down. I wish for sleep to come, but I just woke up.

This week, I have a busy schedule. I have been trying to push myself to get everything I need to do done. Then, add in, medical appointments and travel to and from the medical centers. I am exhausted. I am dog tired. I still have two very busy days left (tomorrow and Thursday). I have a slight reprieve over the weekend and then next week I have four appointments in two days.

I struggle through the day. I am so tired. I just want to sleep. I spend the day in bed waiting for energy to return. It never does.

This lack of energy is what is called a Mitochondrial Disease crash. When people with Mito pushed themselves too much, their bodies stop working properly. Muscles throb with pain. Exhaustion makes moving a difficult chore. If the energy crisis is severe, organ systems malfunction—nausea, vomiting, diarrhea, kidney dysfunction, low blood pressure, etc. In extreme cases, organ systems fail.

I sit in bed waiting for my energy to return. I know the next few days will really tax my body, but I keep focusing on the future…on days when my schedule allows me to lie in bed all day and not move. Eventually this energy crisis will pass.

I need new stockings! An Unexpected surprise.

For many weeks, perhaps even many months, I have been checking online to find compression stockings. My compression stockings are wearing very thin. One set has a large hole in the heel. Several other pairs have areas which are paper thin. I found a person selling 5 pairs of stockings for $60. The stockings are not exactly the style I wear. I prefer to wear the stockings which are thick. The thick stockings are more durable and are less likely to snag than the popular sheer style compression stockings. The stockings listed for $60 appeared to be made from a thinner material.

If I am extremely fortunate, I can get a single pair of the stockings I like for $15 each. Most of the time I pay around $30-35 for each pair. This only happens after constantly checking and pouncing on any cheaply priced stockings. If I would pay full price, they would be around $150 per pair. So, paying $60 for five pairs was a very good deal!

But, I was hesitant to pay so much for stockings I was unsure how comfortable they would be. I have some thinner stockings. They have lost their elasticity long ago and have a tendency to fall down even though they are waist high and have a waist band. Moreover, the five pairs of stockings were black in color. I do not like black stockings. They look odd when I wear skirts, sandals or shorts. I prefer the stockings to be nude color. The nude colored stockings blend in better with my skin. I decide to not purchase the stockings and continue my frequent online searches for compression stockings.

A few weeks ago, I was putting on a pair of my compression stockings. To my horror, there was a HUGE whole at the top of my left leg. I could still wear the stockings, but it was uncomfortable. I frantically turned on my computer and starting searching for compression stockings online.

To my amazement, the five pair of stockings were still listed. Now, the price was $50. After doing a quick search, I could not find any other stockings in the correct size or compression. I decided I would risk $50 in hopes of getting five pairs of stockings to wear until someone listed online the stockings I usually wear. I bought the stockings and waited for their delivery.

Although the stockings were sent out rather promptly, the package sat for a long time at a post office half way around the country from me. As I waited, another pair of stocking developed a huge hole in them.

When the stockings finally arrived, I opened the box. To my shock, the stockings were almost identical to the stockings I wear. I could not believe it! Five pairs of high quality stockings for such a cheap price! I was doing a happy dance and praising God for this unexpected surprise!

How many people will you influence?

As I was watching a YouTube video, the presenter stated some research, “The average person will significantly influence 200 people.” That number stuck out at me. Two hundred people. Do I know that many people? I look at my friends’ list on Facebook. Well, there are over 200 people listed as my friend, but the majority of the people I never interact with.

But then I think to YouTube. I have over 400 subscribers. Over 400 people have felt the need to hit the “subscribe” button on my YouTube videos. Some of those people have become very near and dear to me. And then there is my top rated video which has almost 11,000 views. Have I influenced any of those people?

As I lie in my bed, I feel hopeful. Despite having chronic illnesses which make leaving the confines of my home difficult, I am still helping others. This is perhaps the greatest blessing about having a YouTube channel. I can still share my experiences with others without ever leaving my room. I can help people through instructional videos, inspire people through spiritual stories and encourage others that whatever we face in life, there is always something good in every situation.

Since becoming severely sick 10+ years ago, I always envisioned the end of my life would go unnoticed except by a few close family members. But as I have learned from others with YouTube channels, even when our life ends here on earth, our videos on YouTube remain. We can continue to inspire and help others even after we take our last breath…and that goes far beyond anything I am able to comprehend.

 

 

Trying to stay motivated, but sickness weighs me down

 After having four hospitalizations in four weeks, I am struggling to keep up with life. I have tasks which are piling up to be done, but I have no motivation or energy to do them.

I lie in bed this morning, fighting through the side effects of taking pain medicine. The previous night, I suffered for about 12 hours with intense pain in my pancreas. Waves of nausea sweep over me. My intestines churn, wanting to throw up. I cautiously take pain and nausea medicine. I chew the pills and swallow them, taking only a tiny sip of water. An hour later I throw up. I pray the medicine was able to make it in my bloodstream before I vomited.

I hug a heating pad and try to distract myself with YouTube videos and listening to the Bible. I am miserable. I pray to God these symptoms pass quickly. After several hours with the pain increasing, I break down and take more pain medicine. This time, the pain medicine makes me very tired. I fall asleep around 6 a.m.

At 8 a.m. I wake up and am thankful I am not in pain. I move and the pain comes back. I feel woozy, have a headache and have this yucky feeling in my body. These symptoms are side effects from taking pain medicine. I stay in bed for the morning, trying to sleep and trying to feel better. 

I have a lot of things to do today. I need to write two YouTube scripts, begin pre-production for the videos and create thumbnails for the videos. The clock keeps ticking. I have no energy. I have no motivation. I think to myself, “Maybe tomorrow will be a better day.” I carefully eat some soup; the pain in my pancreas increases. I thank God I have IV nutrition which will keep me hydrated. I go back to bed and wait for better health.

Feeding Tube Pain…Is it Getting Worse?

It has been six weeks since my feeding was placed. I was hoping the pain in my abdomen would decrease as the days and weeks passed. It did lessen at first, but now, my feeding tube site is extremely sore. I finally took out the stitches which were holding the tube in place on Sunday. As soon as the feeding tube was free to hang on its own, pain exploded at the feeding tube insertion site. Any time I touch the feeding tube, I writhe in pain. It is hard to move because if I move, my feeding tube moves. I tell myself it is my imagination I am in so pain. It has been six weeks. The pain is not getting worse…or is it?

I am desperate for relief. I do not want to take pain medicine because I have a limited supply. My appointment with my GI doctor is not until the end of May. Can I wait that long for medical intervention? Will the doctor agree I should have the feeding tube removed? Then, I will have to have a consult with the surgeon and get a surgery set-up. If I use the timeline of getting the feeding tube placed, to have the feeding tube removed would not happen until September. Five months of unrelenting pain. Five months of having no energy due to the constant pain. And then there is always possibility that my GI doctor will not agree for me to have the feeding tube removed. What then?

I wait. I pray. I ask God for relief from this non-stop pain. My back hurts. My shoulder hurts. My abdomen hurts and swells any time I eat. I thank God I am able to get about two thirds of my calories via IV nutrition…but I wonder how long this current GI crisis will last.