This is weird…People are remembering me

When I became severely ill in 2009, I quietly exited the world. When I could no longer attend events, people forgot about me. Holidays and birthdays came and went, and no one sent me greetings. Special celebrations would be held for special occasions, and my invitation never came.

This year, there seems to have been a shift in the world. Suddenly, people are remembering when my birthday is. I received several birthday cards this year.

And then this December, I am receiving Christmas cards. Usually my mail during this time of year is slim. I get a card from one or two relatives. Occasionally someone remembers me and addresses a card to my parents as “Mr. & Mrs. & Family”.

But this year, I have received seasonal greetings from quite a few people. I actually have a “stack” of cards. This seems so foreign to me. I had to dig through my stationery box to find holiday greeting cards. As each card arrives in my mailbox, I then slowly begin the process of writing a thank you note for the person’s kindness.

(I say slowly, because the muscles in my hand fatigue quickly. Writing just a short message takes a tremendous toll on my hand and causes quite a bit of pain. I can only write out one card a day and then need to let my hand rest for a day or two.)

I feel so blessed and honored so many people have remembered me this year. Thank you for your kindness.

Closed Captioning: Another New Adventure

From time to time, YouTube sends me emails about ways to improve my channel. I really enjoy these notices because they contain valuable information. Recently, they sent me information on how to create closed captioning on my videos. I watched a video on how to change the closed captions which are on my current videos.

Through trial and error, I discovered how to insert the actual transcript of my videos and create closed captions. I then have to watch the video to make sure the captions sync with the video.

I wish I could say this is a quick and easy process, but it is not. The “auto-sync” feature works, but it often breaks the captions at the wrong place or changes the captions too quickly. I have to re-configure the captions. It can take 30-40 minutes to align the captions with my speaking. It is a tedious process, but I hope the end product will make my videos accessible to more people.

Six Years on a Ventilator

On December 5, 2016, I woke up and could not breathe. I went to my doctor's office. After being evaluated, I was sent to the hospital to be admitted. While at the hospital, a respiratory therapist fitted me with a mask and had me try non-invasive ventilation. I was scared and felt so alone.

The following day, a non-invasive ventilator was ordered for home use. Later in the day, on December 6, 2016, I was sent home with a ventilator. 

 I could never have imagined my life changed at the moment. I could never have imagined from that time forth, I would be attached to a ventilator wherever I went. My ability to breathe on my own was compromised. I was entering a new phase in my medical journey.

I will not lie. Six years ago seems like a lifetime ago. I have had more life or death situations than care to think about. I have had to learn about respiratory equipment and tracheostomy tubes. It has been a crash course and many trials and errors.

I hope, wish and pray one day I will wake up and never need a ventilator again. But in the meantime, I rejoice for the medical science and technology which helps me keep on keeping on.

May this next year be free from medical complications and hospitalizations. May this next year be my best year yet. Thank you for all your support. Happy Ventilator Sixth Anniversary!

Panic! I have 4 minutes to make it to my appointment!

Last week, I had a doctor’s appointment. Before going to the clinic, I planned extra time to stop off at the grocery store to buy some food. That shopping experience took longer than anticipated. (For more details about my grocery store fun, please click here)

When I got in the car and was ready to travel across town, I was panicked! It was 3:26 p.m. My appointment was at 3:30. Thankfully, traffic was light. The car glided through the roadways without any issues.

When we arrived at the clinic, there were no parking spots. We had to park really far away. I raced as fast as I could into the clinic. I signed in. It was 3:40. I was happy I was not terribly late for my appointment. Plus, this doctor usually runs behind. When called for my appointment reminder, the receptionist told me to be prepared to wait 2 hours to see the doctor.

I zip off to use the bathroom. When I exit, I am overwhelmed with fatigue and muscle tremors. Due to all the stress and chaos, my blood sugar is rapidly dropping. I am prepared for this. I have an apple in my pocket and water stashed in my backpack. I take out the water and chug down nearly an entire half liter. I then hurriedly eat the apple.

I just get done with the apple and then a nurse calls me. I gather up all my medical equipment, and the nurse pushes me in my wheelchair. She takes me to an exam room. She takes my vitals. She then has me pack up all my medical equipment and takes me to a different room. I get my ventilator and heated humidifier plugged in to the wall outlet.

I am getting myself adjusted in my wheelchair when the nurse comes back. “Oh sorry, “ she says. “You are next to see the doctor. We need to switch rooms.”

I unplug my equipment and pile it back on to my lap. We change to a different room. I then unload my equipment and get settled again.

By this time, I am extremely tired. I desperately want to put my feet up as blood is rapidly pooling in my legs. This is causing my heart to beat quickly. However, I know it will only be a few minutes until the doctor comes in to see me. I decide to endure my symptoms.

A few minutes later, the doctor enters. The appointment goes well. I am on antibiotics for an infection. The infection has not cleared. The doctor tells me he will prescribe one more week of medicine. I silently pray to God, “Oh, please. I really need two more weeks or antibiotics.”

The doctor briefly chats with me. As he is filling out my medical report, when he gets to the treatment plan, he stops. His hands hang over the keyboard with his index finger hovering over the number 1. After a few moments, he says, “One week of antibiotics may not be long enough. I am going to prescribe 2 weeks of antibiotics.” I silently praise God for this kindness.

The appointment ends. I then wait at checkout to schedule my next appointment. The woman in front of me takes a long time. Thankfully, the receptionist sees me waiting. She looks up my chart and schedules my next appointment. She gives me my appointment card. I leave the building (and the other woman is still sorting things out at the checkout desk).

When I get to the car, I praise God everything went so smoothly. When I look at the clock it is 4:37 p.m. I am overjoyed. When I was told the day before I would have to wait two hours to see the doctor, I had prayed to God that I would not have to wait that long. I had asked for my appointment to be finished before 5 p.m. And God had now answered my prayer in a favorable way. After a very long and strenuous day, this was such a wonderful kindness.

My Grocery Store Adventure!

Today, was an epic day. I needed to travel to the city to have a doctor’s appointment. Since I was going to be just a short distance from a very large grocery store, I decided to make a “quick” stop at the business to pick up some food.

From the moment I enter the store, there are scores of people with grocery carts heaping full. I am grateful they have some organic produce. I buy whatever the store has as I am almost completely out of my food supply at home.

I buy some other items such as frozen vegetables because there is a $2 off coupon when you purchase $10 worth of frozen. I buy some baking goods because there is a $3 off coupon when you purchase $15 worth. I knew about these coupons and loaded them on to my digital account before I left home. This way I do not need the coupons. They would come off automatically at the checkout.

When I arrive at the checkout area, my scooter which promised me when I began was fully charged (and should last for many hours) is now completely dead. The machine is beeping at me. The scooter would only go a few feet and then die. I manage to get in a checkout lane as I cycled the scooter on and off to crawl the short distance to a line.

When it is my turn, the checker quickly scans all my items. I tell the bagger I need a new scooter. The battery on this cart is dead. He dashes off to find me a different scooter.

When I am going to pay, I ask the checker if the coupons came off. She says no. I am really upset. I did not need the baking items. I have the checker take off the baking items from my bill. The frozen food is a puzzle if I should take it back. I cannot get these items any where but at this store. I tell the cashier there is a coupon. I did not take the coupon from the display in the frozen section because it is loaded on to my digital account. The checker has compassion. She gives me $2 off the frozen.

During this time, the bagger arrives with a new scooter. My groceries are loaded into the cart with a fully charged battery.

When paying, I have two forms of payment. One I use for groceries. And the other I use for non-groceries. My first transaction goes through without a hitch. The second transaction the credit card is declined. This frequently happens at this store. I almost always have to insert my card a second time before the payment is accepted.

As I insert my credit card a second time, the woman behind me, either very sympathetic to my cause or annoyed that I am taking so long, tells the checker to just add my second purchase to her bill. Before anything can be done, my credit card payment is approved. The cashier kindly tells the woman not to worry. The credit card was accepted.

After this very long expedition, I have to race to my doctor’s appointment…and another adventure is about to begin!

Click here to continue to part 2 of the story.  

Scratching My Trachea. Ouch!

Yesterday, I needed to film YouTube videos. I was going through my regular routine of setting up my room and changing into a nice top. When I took off my shirt, my bulky HME got caught in my shirt. The HME pulled on my tracheostomy tube. The tracheostomy tube came out a little ways. My tracheostomy tube then got stuck in my trachea.

HME

I tried and tried to get my tracheostomy tube back into the correct position, but it would not move. Finally, after using a lot of force, the tracheostomy tube slid back in.

Oh, how my trachea burned! I am pretty sure the incident caused damage to my trachea. My trachea was very sore for the rest of the day.

Moreover, my voice was quite weak. I managed to film my YouTube videos, but my voice was not a very good quality.

Today, my trachea is still very tender, and my voice is hoarse. I hope my trachea heals over the next week before I need to film more YouTube videos.

When the Weather Changes, My Health Changes

For many years, the fall of the year is very hard on my health. When the weather changes, my health starts to fail. I try very hard to ignore the calendar. I try to fool myself into believing summer is still here. But as the strong solar rays from the sun grow weaker and weaker, my health slips away.

I have made drastic lifestyle changes, which has helped get me farther along into the fall, but there seems to be a magic day in which my health changes just like the months on the calendar.

Yesterday, we had gloomy weather. I did not think anything of it. My energy was low. I pushed through the day. Today I woke up in a groggy haze. My body is as cold as a popsicle. I layered on thick winter clothing, but my hands, feet and nose are ice cold. Ah, yes. My health is changing just like the seasons.

I look to the calendar and assure myself there are only four months I need to push through—November, December, January and February—before the sun’s rays grow stronger, and the weather turns to spring.