It's Only Wednesday...What a Long week!

When I woke up this morning, I was surprised to find out it is only Wednesday. Now, do not get me wrong. I am always running out of time to get things completed, but the exhausted I felt this morning had me wondering how it was only Wednesday.

On Monday, I had a VERY long day of going to appointments. The headache I developed on Monday night reminded me why I try to avoid long days. Yesterday, I spent seven hours getting caught up with YouTube comments. I have been too busy and too sick to keep up with the numerous messages. I really need to get someone to manage my social media accounts...but that will probably not happen. I cannot pay anyone to help me. I am not monetized and will likely never be monetized. Plus, the person needs to be someone I deeply trust because he/she will have access to all my accounts. And also, the person cannot be very sensitive to negativity because the comments I receive can be very mean and down right awful.

The exhaustion from spending that much time replying to comments really wore me out. I slept long and hard last night.

Today, I had another appointment. The trip took longer than expected, but nonetheless, I was back home fairly quickly. Then it was off to edit a YouTube video. 

I like to stay ahead of my YouTube videos. I try to have a week or more worth of videos ready to go, but of late, I have been getting very behind due to the demands of social media. So, tomorrow's video is actually a video I filmed today and edited today. That is a rarity.

Now, I need to finish some social media correspondence and start thinking about a video I should film tomorrow. With having two YouTube channels, I have to produce two videos a week. I am not sure how much longer I am going to be able to do that. I am running out of energy to keep up with everything.

IT WORKS!!! The Miracle Oven

A week and a half ago, I tried to take a shower. However, the water was cold. I reset the water heater several times, but the water remained frigid. I took a fast shower and got out of the freezing cold water as soon as possible.

I then went to use the stove and oven. The stove worked fine, but when I turned on the oven, the burner on the stove went down to almost nothing. I wondered if we were out of gas. This sometimes happens when the gas tank runs low. I pushed aside the though and threw in a few sweet potatoes into the oven. I went to bed and forgot about the event.

A few days later, I tried to use the stove. The burner flames were very low. When I attempted to turn on the oven, the stove burners went out and the oven refused to ignite. I groaned. We must be out of gas. I asked my family member when we last received a shipment of gas. I was told we received gas earlier this year. My family member then inspected the gas gauge outside. We still had 55% left in our tank. Not knowing what else to do, the gas company was then summoned.

Praise be to God, the gas company was passing through our area. About 30 minutes after calling them, a work crew was at my home. They inspected everything. They could not find anything wrong. A worker came inside the house and saw the issues we were having with the stove and oven. There was definitely an issue with gas not coming into the house.

The work crew dug up our gas line and replaced it. Over three hours later, our stove worked! And as an added bonus, the water heater was now working too! Hallelujah.

A few days passed, and then I tried to use the oven. I turned the knob, but nothing happened. I turned it off and tried again. There was no clicking sound. My heart sank. I fervently prayed and tried a few more times, but nothing happened. I immediately thought the igniter must have suffered damaged when the oven did not receive enough gas earlier in the week. I did not want to call a service crew to replace the igniter. The gas line cost $1,000 to replace and getting a new igniter would be another $500. I decided I could use a slow cooker, air fryer and stove top for our cooking needs. And indeed, using this combination did satisfy all our needs.

This week, I was apprehensive about the oven not working. Thanksgiving is in a few days. I was slightly panicked because we really needed to use the oven.

Today, I had an appointment and then had to hurry back home to meet my respiratory therapist for her monthly visit. When I was rushing into the house, I meant to turn on a stove burner to heat up some water. In my haste, I turned the wrong knob; I grabbed the knob for the stove. I raced to go to the bathroom. When I went back to the oven, I screamed! The oven was working!!! I could not believe my eyes. I opened the oven and sure enough, it was heating up! Not to waste our oven's new found life, I threw a few butternut squash into the oven.

I started praising God and dancing around the kitchen! I was thrilled the oven was working again! I gleefully started singing, "The oven is working! The oven is working! Praise be to God!"

Happy Thanksgiving!

P.S. I am sorry this blog post is late. I meant to post it last week, but Blogger abruptly stopped, and I was unable to get this posted to my blog. Sorry for the delay. I hope you and yours had a fabulous Thanksgiving!

The Last Message

For nearly three years, I have been corresponding with a YouTube viewer. His mom found me on YouTube and told her son how good my videos were. The son watched my videos and agreed. He then reached out to me through my Facebook business page and asked me some questions and shared some of his story with me.

The man had a congenital medical condition which is a neuromuscular disease. I understood a lot about what he was going through because I have many similar symptoms. He also had a trach and used a ventilator.

During our last conversation, he had a number of concerns about care he received in the hospital. I gave him some tips and advice. I also assured him everything would be ok. His last message was as follows: “Thank you so much. Your help really means alot to me.  Like so much that I feel like crying happy relieving tears lol”

And with that, our conversation broke off as it usually did, until he had another question or concern.

On Saturday, I received the following message from his mom:
“I want to thank you for helping my son with his health question recently. His name is (name deleted for privacy). He is my son. He lost his battle with his life long illness yesterday. You also helped me too. Thank you so much.”

I cannot tell you the devastation I felt learning of his passing. Tears quickly sprang to my eyes and cascaded down my cheeks. I was completely grief stricken and stunned. I was also touched that his mom contacted me to let me know her son had passed away. I immensely appreciate that.

My deepest condolences to his family and friends. What an incredible person he was—kind, caring and a great friend. May his memory be a blessing.

Where Have I Been? Two Months Since I Last Updated

It has been two months since I have posted on my blog. I have thought of many things to say, but my energy to type them has escaped me. I have been having very poor health. Blood clots have plagued my life. I cannot tell you the exhaustion and general sickness they have caused me. To get through each day takes a tremendous amount of resolve and determination.

And then there is YouTube. In celebration of Mitochondrial Disease Awareness Week, I posted a video entitled: A Day in My Life with Mitochondrial Disease. That video did very well! The analytics on YouTube began recommending my video to more and more people. With more traffic to my channel, people began watching other videos. Soon, a video from three years ago, started gaining traction. And to my delight, my channel saw incredible growth.

The comments I have received have been overwhelming, both in number and in sincerity. People have shared their stories with me. It can be very energy draining reading about people's struggles. My heart often breaks and tears sometimes run down my cheeks, but I try my best to give people hope and encouragement.

As the weeks have passed, I have pondered if I should hire someone to monitor my social media accounts. At times, it can be too much for me. However, I am very leery of doing this because I am cautious about how I reply to people. All my responses are done from a place of love, and that may be difficult for someone monitoring my account to do.

With that, I hope everyone is doing well. I hope this season of your life is filled with lots of love and joy.

P.S. The photo is courtesy of my one my YouTube subscribers. She thought the koala would help me as I deal with my health challenges. I thought I would share the photo. I hope if brightens your day.

To buy or not to buy—the search for compression stockings

Recently, three pairs of my compression stockings developed holes in them. I was very concerned because I do not have many spare pairs of compression stockings. I need the compression stockings to provide extra compression on my legs and abdomen. With having Postural Orthostatic Tachycardia Syndrome (POTS), blood often pools in my legs and abdomen. The compression stockings help keep my blood from collecting in these regions. I used to get the stockings through my health insurance. However, about six years ago, I could no longer find a pharmacy which accepted my insurance. So, I began buying my compressor stockings online.

The normal price for the compression stockings is about $150 a pair. This is far too expensive for my budget. Instead, I use eBay. The biggest issue with eBay is that there is not a steady supply of compression stockings. It has sometimes taken me as long as a year to find a pair of compression stockings with the correct compression gradient and size to become available. So, when three of my compression stockings abruptly developed holes, it was off to eBay to find a pair of compression stockings.

I searched and searched, but almost every pair of compression stockings I found were either petite or maternity. Neither style would suit me. Thus, I continued my search.

Last week, I found four pairs of compression stockings being sold together which were the correct compression and style. However, they were one size too large. I was undecided if I should buy them. The size on the compression stockings is quite important. Being one size too large, the stockings will not provide the correct compression. I oscillated back and forth if I should buy them.

At the end of last week, I decided I should buy the stockings. When I looked to see if the stockings were still available, I was shocked. The price had dropped $20! I decided paying $10 for each pair of stockings was too good of a price to pass up. I immediately clicked to purchase the items.

Today, the compression stockings arrived. It is a bit of a relief to now have more compression stockings, but I am still unsure if the larger size stockings will give me the correct compression. Since most days I spend laying in bed, I have decided to wear the larger compression stockings on those days and save the correct size compression stockings for times when I leave the house.

A forgotten bottle of water. A blessing in disguise

On Monday, my parents went to play cards at the local community center. A short while after they left, I got out of bed and went to the kitchen. I saw on the counter a bottle of water. I wondered if my dad had forgotten to take the bottle of water with him. I touched the bottle. Yes, it was cold. He most likely forgot his water. I thought about just going over to the community center and bringing him the water, but I decided I would call him first.

When my dad answered the phone, I asked him if he forgot his water. He said he did. I told him I would bring it to him. My dad protested and said it was not a big deal. He did not need the water. I insisted I would bring him the water. He then suddenly said, “If you are coming over, bring another bottle of water. Someone here needs a bottle of water.” I happily grabbed two cold bottles of water and went to the community center.

When I arrived at the community center, my dad took the two bottles of water. He immediately went over to a table to give someone the water. I did not see who he gave the water to as I had turned to exit the building.

When my parents got home, my dad thanked me for bringing over the water. My mom informed me the person who forgot her water was incredibly thankful for the water. Apparently the woman had a bottle of water. She placed it in her car. Her friend then said she would drive them to play cards. The woman forgot to grab the bottle of water out of her car before getting into the friend’s car. The woman was extremely thirsty and was really bummed she forgot her water.

I smiled hearing this story. I was rejoicing my dad forgot his water.

Sometimes we may wonder why we forgot an item and perhaps we even might become angry, but as seen in this story, God works all things for good. My dad forgetting his water allowed me to not only honor my father but also show love to my neighbor by bringing her a bottle of water. I am so happy through a forgotten bottle of water I was able to show kindness to those around me.

One Thing After Another

 Did you ever have a time when things are going relatively well? And then it seems, one thing after another goes wrong? Well, that has been my life lately.

I have been sick with an inflamed trachea (tracheitis) for five weeks. I have been on and off IV antibiotics. When I am on the medicine, I feel great. Then I go off of the antibiotic, and it seems my infection comes back.

I thought I would go to my primary care provider to get a sputum culture ordered. When I called, I was informed the clinic is permanently closed! I was shocked and beside myself. No time is a great time to lose a primary care provider. At the moment, there are some medical issues I would like to get sorted out. I also could use some refills on my medicines, but it seems, these things will have to wait while I try to find a primary care provider.

Thankfully, I was able to call my pulmonologist’s office and was able to get an appointment for this week.

Over the weekend, my sputum turned a bright blueish-green. I definitely have pseudomonas, but now we just need the antibiotic sensitivity report to find out which antibiotics this bacteria is sensitive to.

The appointment with my lung doctor went well. I did have to wait about 1.5 hours to see the provider, but in the end, everything which needed to be done was done. I got my sputum culture lab orders, dropped off my sputum at the lab and came home to wait for the results.

I received the lab report today. It stated since there were epithelial cells in the sputum, the sputum was contaminated. They threw out the sputum and did not culture it. I cannot tell you the devastation I felt when I read the report. The sputum clearly had pseudomonas in it. The lab could have cultured it, but they chose not to. (Another lab has cultured my sputum even when there are epithelial cells in it. The report simply states the results may not be accurate as there may have been contaminates in the sputum sample.) So a vital piece of information (the antibiotic sensitivity report) remains a mystery.

The lung doctor also sent over antibiotics to the pharmacy. Right now, it says the pharmacist needs to review the prescription. When this happens, usually the prescription is hung up in the system. I need to call the pharmacy and try to get that sorted out. I meant to call today, but I wanted to call in the afternoon after their lunch break. However, I forgot to call.

I also need to call my lung doctor’s office and try to get another sputum culture ordered. Hopefully that will be an easy process and will not necessitate another office visit.

Add to all these things, my bathroom backed up with sewage. The last time it cost $300 to clear the line. I decided to try a different plumber. This time it cost $800.

Also, the same day I found out I lost my primary care provider, I received a letter in the mail that one of the providers I see for my endometriosis care has left the clinic. What a bummer. She is fantastic.

I know God orchestrates everything. Perhaps, there is a fabulous primary care provider waiting to take over my medical care. Perhaps my pseudomonas infection will clear up on its own. Perhaps my endometriosis and ovarian cyst will also go away and not require medical intervention. And perhaps spending $800 to clear my sewer line means my bathroom will never back up with sewage again. I hope next week is a better week.