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.