Sunday, March 15, 2020
When I told my significant other, Donald, my sister was planning to come visit us for Spring break and had just confirmed the dates the other day, he said to me, “I guess you do not want to go to Arizona then.’ Excuse me, where did that idea come from? This is the first I have heard about a possible trip to Arizona during spring break. In Donald’s defense, it was also the first time he had heard of my sister coming for Spring break, and I had known for weeks.

You do not need to ask me twice to go on a trip to Arizona. The answer will almost always be yes. How dare Donald dangle out a trip to Arizona when I already have plans.  Sixty or 70 degrees is way better than the 30 or 40 degrees we have in Colorado Springs in March. I would have so been in if I had not already made plans with my sister. As much as I would like to be warm, I would rather chat with my sister and get her to do tons of clutter clearing. Although, if I had known Donald wanted to go to Arizona sooner, I would have asked my sister to come a different week, so I could have both experiences.

When my sister called me back the same day and cancelled her plans, I was very disappointed; however, I still had a trip to Arizona in my back pocket. My older daughter, Megan, is also planning a trip to both Arizona and California, and she is waiting for confirmation the event she was planning to attend in California has been postponed. I told Megan we could take an extra day more than Donald was planning, and she could ride with us to visit family and friends in Arizona.

I have a niece in Tucson, and Megan has a friend in Phoenix. Donald wants to visit Phoenix to check out a hobby shop owned by a man he follows on YouTube. I think it is a great idea for us to go on a family vacation (since Florida is probably out of the realm of possibility). We can spend two days in Phoenix, two days in Tucson, and then Megan can fly to California to visit my brother and sister in law for a couple of days. Megan could the fly back to Denver or Colorado Springs. Megan would get her annual friends and family visits, and the rest of us could have a few nice days in the warm Arizona sunshine.

I feel safe to travel. We have a big cooler to pack drinks and snacks in for the long drive, so gas and potty breaks will be all that is needed. Convenience stores in New Mexico and Arizona are not going to be any germier than Colorado, and I stocked up on disinfecting wipes near Christmas when they were on sale. We will stay in a hotel, and we can visit with my family in their yard or a nearby park. I would not expect my niece’s house to be wheelchair accessible, and it will not be too hot to hang outside (hopefully it will not be too cold to hang outside).

I told Donald we could make our final decision to go on Friday since there have been reports of closures across the country. On Friday, Donald will call the hobby shop to make sure they will be open the next week. I know Donald only wants to go to Arizona to visit the hobby shop, and I only want to go to Arizona to say hi to my family and enjoy a little warmth in March. 

Megan has been driving a little out of her way to visit her friend and her cousin for a day since she started going to an annual personal development event a few years ago. Megan stops in Arizona on her way to the event and then spends a couple of days after the event with my younger brother and his wife after the event. Megan will be very disappointed to miss her event, but she could still connect with family and friends.

My piece of advice to you is to improvise. Life is not always kind to us, and we are responsible for making the best out of a bad situation. Ask for help when you need it. I cannot give you what you need if you do not tell me how to best to be there for you.

Until next time,
Susanne

Please check out my GoFundMe page.

Saturday, March 14, 2020
Today my significant other, Donald, and I were supposed to be going to a contest in which our seven-year-old, Mika, was participating. On Thursday, the competition was canceled due to coronavirus contamination concern. Mika and her team worked most of the school year on their project and now they will not be able to show it off. The older teams are automatically being advanced to the state tournament in early April, but there is not a state competition for the younger group. The state event is sure to be cancelled also, because it is scheduled three weeks from now, and it will be months before this country starts sliding down the backside of the infection curve.

My older daughter, Megan, asked me this morning if I was ready to have Mika home with me for the rest of the school year. I am, and I expect that is what will happen. I would like to think the school district will actually get their ducks in a row and have a working online option available two weeks from now, but I do not think it is possible with thousands of school districts across the country trying to accomplish the same task I told Mika yesterday that next week, which is the unexpected week off, she would be required by me to read for thirty minutes and do a math worksheet each day.

We had the first death attributed to COVID-19 reported in Colorado, in my county, last night. It was an 80-year-old woman with underlying health conditions, and today we have three presumed cases, including her. I know it is simply semantics, but I wonder if she died from COVID-19 or did she die from complications from COVID-19? Either way she is dead, and it is a tragedy, but I assume if I caught COVID-19, most likely it would turn into pneumonia and the pneumonia might kill me. I could be completely wrong, and that is why I have a morbid curiosity about her death. Quit telling me to wash my hands and tell me how it will kill me.

I am not thinking there is a conspiracy happening, but I also wonder, “Did she die from her underlying health conditions and simply also had COVID-19?” I wonder this because I had pneumonia two years ago that put me in the hospital. When Megan took me to the urgent care center because I was too sick to take myself, I was told I tested positive for influenza. I told the doctor, in no uncertain terms, that I did not care if I had the flu, I was there because I was sure I had pneumonia.

I ended up in the hospital several days to treat the pneumonia. When I heard about the woman last night, I wondered if I had died two years ago, would they have claimed my death was from influenza? My pneumonia may very well have been caused by the flu even though I did not have any other flu symptoms., but I may also have gotten pneumonia and then been exposed to the influenza virus. Either way, I would have been dead, so it really does not matter if the chicken or the egg came first.

Donald went to the grocery store this morning and I wished him luck. He told me there were quite a few empty shelves when he returned. We mix canned green beans in our dogs’ food in the evening and there was one case left for him to buy. I think there are 24 cans in a case so the dogs can eat fancy, French-cut green beans for the next twelve days because all the regular-cut green beans were gone. There was plenty of milk, which was good for me, but they were out of chicken and eggs. I would rather have steak than chicken, so I do not mind at all. I am guessing a lot of people plan to cook at home.

My piece of advice to you is to embrace the adventure. Mika and I will likely record some extra videos for her YouTube channel next week. I bought some paper craft books for her to fold, and they might be fun tasks for videos. We plan to use this unexpected vacation to find out how fun they can be. I am finished with the coronavirus hysteria and embracing the coronavirus adventure.

Until next time,
Susanne

Please check out my GoFundMe page.

STUPIDITY ALERT - This journal entry was written before the extreme nature of COVID-19 was truly understood. Fortunately, it did not take me long to accept the reality of the situation and change my mind about how dangerous COVID-19 is.

Friday, March 13, 2020
I am over the corona virus hysteria. Yesterday, my sister called me with the days she was planning to visit me during my seven-year-old’s Mika, spring break, which starts March 23rd. A few hours later she called me back and said her husband begged her not to come. In his defense, he was as concerned that my sister would get the virus and pass it on to me as vice versa. I have met him a few times and he seems nice; I do think he thinks asking her not to come is protecting all of us.

My sister is practical like me. She told him stopping at a gas station in the middle of Kansas was not any different than stopping at a gas station in Kansas City. She told him we would be staying at my house the four days she would be here clearing clutter, not out mingling with the population. She told me the news had announced schools were closing in her area, and he did not think we were taking the risk of infection seriously enough if she came here at this time. I was thinking I am glad our school district had not overreacted. Ha. Ha. Ha. Ha. Ha!

Last night when I went to bed, the news announced five area school districts were planning to close for two weeks. Of course, they did not announce which five school districts were closing so I wondered every time I woke up during the night if Mika would have school today. This morning the other news channel announced all the school districts in the Pikes Peak region would close on Monday and the children would have a two-week spring break.

When I got up this morning, sure enough, I had an email from the school district stating they were panicking, I mean using an “abundance of caution”, and would close next week and the scheduled spring break the week after, to deep clean the schools. Mind you, not one child in this area is known to carry the virus and the one adult in the county who does is in quarantine with his family. One presumed case of COVID-19 in El Paso county and the schools close? If none of the children have the novel coronavirus, what germs are they cleaning out of the schools? This is hysteria, not an abundance of caution.

I am fortunate, I work from home, so it is easier for ours than most families when kids are unexpectedly home from school. I know the extra week off will create a hardship for most of the families in my area. I am one of the few moms at Mika’s school who has a flexible schedule. For most families, both parents (or single parents) work at jobs that require their physical presence. (Somebody needs to deep clean all those schools.) I think the schools should remain open, as they figure out online options, until actual infection is identified in the schools. Parents can choose to keep their children home if they do not feel it is safe.

I am not freaking out about catching COVID-19 and I am in the death risk group. I went to my women’s luncheon on Wednesday and simply asked people not to touch me. I would probably be a little more concerned with my own safety if I were currently on a chemotherapy treatment. That hole in my bootie might prevent me from getting life-threatening complications when COVID-19 finds me, as I am sure it will.

Now, if COVID-19 catches me and beats me into a bloody pulp, my sister’s husband will have been right, I have not been taking this virus seriously enough. But I simply cannot live thinking that way. We are all going to die. I am probably going to die before you. I am not going to spend my last days huddled in fear in my home. I have an unexpected week off with Mika and I may take her to Chuck E. Cheese if she behaves.

My piece of advice to you is to let go of the fear. Chances are very good when you catch COVID-19, it will not kill you. It will not kill most of your friends unless they are older and have underlying conditions. Rest assured you are more likely to die from a heart attack or cancer than coronavirus and go outside.

Until next time,
Susanne

Please check out my GoFundMe page.

Thursday, March 12, 2020
I am adjusted to daylight savings time already, darn it. I was hoping I would keep sleeping in until approximately 15 minutes before I start my morning routine until it started to get lighter earlier again. No such luck. This morning I woke up an hour earlier than I need to function, which is normal for me. I know I am in the minority; I do not use an alarm clock. On the days I am still sleeping when my significant other, Donald, does my morning care, he wakes me up. On the very rare days my older daughter, Megan, gets here before I wake up, she wakes me up. I sleep for six or seven hours and then my brain wakes up.

I love daylight savings time, and since standard time was shortened into the first Sunday in November to the second Sunday in March. I think daylight savings time is almost the perfect length (standard time could end the third weekend in February and that would be ideal). I do not understand why everybody raises a fuss about switching our clocks twice a year. Personally, I have always found it more difficult to fall back than spring forward. The loss of evening daylight is what affects me so much.

Daylight savings time is now a safety issue. Most people in the United States have regular evening events, and fewer violent crimes happen during daylight hours. It is safer to be out at events at 6:00 p.m. in April than January. Seventy-five percent of pedestrians killed by cars in 2018 were hit after dark. When I had an office job before I started my own business, I would leave at 4:00 p.m. instead of 5:00 p.m. during standard time, so I would not need to roll from the bus stop to my house along dark streets without streetlamps. I am less concerned about getting hit in the dark now because my newest power wheelchair has flashers built in.

In Colorado, some of the lawmakers want to quit changing times, but they want to stay on winter’s time all year. Apparently, it takes an actual act from the United States congress to change Colorado‘s time to stay on daylight savings time all year. I simply cannot understand why so many people would rather it be daylight at 5:00 a.m. than 8:00 p.m. in the summer. I do not require much sleep, and I almost never want to get up before six in the morning. Why waste the sunlight?

I think our state legislators are listening to people complain about changing their clocks and looking for the simplest solution. Colorado could switch to daylight savings time all year, without an act of congress, by changing to the central time zone and opting out of switching to daylight savings time in the summer. It is a win-win situation. We get more daylight when more people are active, and nobody switches their clocks.

I did not leave the house at 8:30 a.m. this morning and I feel out of sorts. I do not have a weekly blood draw or wound care appointment today, and I am adjusting to this schedule. I am excited to have the time for myself, but not sure what to do with it, since I do not schedule any work Thursday mornings. I am taking the opportunity today to write my journal entry early in the day for a change, but I am nearly finished, and my helper does not arrive for a full hour. I will be able to start another task before my helper gets here. I am usually on or waiting for a bus at this time when I am getting a blood draw.

I am not missing the time commitment my chemotherapy requires, even if it will take a few weeks to adjust. I will probably resume my chemotherapy treatments as soon as I get adjusted to having a little more time to myself. I will then need to rearrange my work schedule, yet again, to work around all the required treatment hours. 

My piece of advice to you is to enjoy your time off. In a month, I could start my weekly blood draws again, so I will make the most of the Thursday mornings I have now to get more work done. I do not want these Thursdays off now, so I am using them to give me more free time this summer with my seven-year-old.

Until next time,
Susanne

Please check out my GoFundMe page.

Wednesday, March 11, 2020
Today was a beautiful day to get my soul filled. On Sunday, the forecasted high for today was 60 degrees, so I chose to only schedule a one-way bus ride on the mobility bus to go to my business-women’s luncheon today. I decided it would be warm enough for me to roll down to the bus stop and ride the fixed-route bus home. I felt I had seen the best route while riding the mobility bus in January and February, and there is not any snow to impede my route.

I went outside in the front yard to wait for my mobility bus at 9:45 a.m., 15 minutes before my scheduled pick-up time of 10:00 a.m. (mobility buses are on time 15 minutes before and after your scheduled pick-up time) At 10:15 a.m. I was still waiting. Fortunately, I had found a sunny spot in which to wait so I did not mind much. I called the mobility office to check on my late bus and they told me the driver would be there within ten minutes. The driver soon arrived, and I was taken to my luncheon without picking up or dropping off any other passengers. I arrived at my destination with plenty of time to socialize.

Yesterday, I called a friend, Martha, who also attends this group’s events on another matter, and during our conversation, I asked her if she would be attending today (yes, I really do know how to dial a phone). Martha said she would be attending. I told Martha I would be going, but I was not going to let anyone hug me because of the virus that has been reported on the news (my networking group is very huggy). Martha told me I needed a do not touch sign, and then she volunteered to make one for me. Martha said she was pretty sure she had a laminator around and might laminate the sign so I could reuse it.

Martha was already at the event when I arrived, and she handed me an 8½“ by 11” yellow laminated sign that read, “No Touch Zone (love you anyway)”. I placed the sign on my lap and rolled around to visit with my friends. Only two people accidentally gave me a hug today. One friend was looking at my face, and did not notice the sign, and the other friend hugged me from the back. I am not a hugger, but almost all my networking friends are huggers, so I have learned to accept people in my personal space.

Do not get me wrong, I hug my significant other and children, but they are my family. I think I would still resist hugging if I could still walk. I consider hugging an invasion of my space and prefer to be asked first, so I can tell you, “NO!” The one time my best friend before my accident hugged me, it was all I could do to keep from pulling her off me. We had not seen each other in a while, so I forgave her. Since my accident, at least one hundred caretakers have been in my personal space, so I have lost the invasion feeling I used to get.

When I started going to networking events with huggers, it took me a couple of years to really get comfortable with all these people hugging me. Now, when I see the extreme huggers, I open my arms wide, so they know I am huggable (I had a few days I was not huggable while using the slash and burn chemotherapy treatment). I am sill not going to instigate a hug with a person I have just met, but if they reach in, I reciprocate the hug and am not repelled by it.

I had great conversations with many of my monthly friends and a couple of them volunteered to read some of my journal entries on camera for my YouTube channel. My table space at the luncheon this month was facing a little way away from the stage, so I rolled over to a sunny spot right by the window to bask in the sun while our speakers were talking so I could see them. I left the event quite content; and managed to easily find the bus stop even though I needed to cross a very busy street without a traffic light.

My piece of advice to you is to learn to like a hug (or at least endure it). I have been there; I know how hard it is to like a hug. It makes my friends so happy to hug me; who am I to rob them of a little moment of joy?

Until next time,
Susanne

Please check out my GoFundMe page.

Tuesday, March 10, 2020
Wow! I got so much work done today I have even impressed myself. I have made Tuesdays my unofficial day to edit, upload, and schedule the videos my friends are recording of them reading my journal posts. My friends are rocking it! I am currently posting one video each Wednesday on my YouTube channel. As my friends help me create a video backlog, I expect to start posting a new video on Wednesdays and Saturdays. If I get the two assignments I still have out this week, next week I will be programmed into May.

Today I worked on three videos. My friends have been amazing at making their videos easy for me to edit. Editing one of their videos usually involves me cutting off a few seconds of them turning their camera on and off at the beginning and end of the video. I increase the speaking volume because the phones do not seem to have great microphones, add my intro and outro, and click the button to make my edited work a video to post on YouTube. I can do my part for these videos quickly, so I can edit several videos in a day.

I have stated in the instructions I send out with the journal assignments that I can edit the video body, but until last week I only edited out a couple of words in a couple of videos. I think most of my volunteers start a new recording if they mess up instead of pausing and starting the sentence again. Last week I needed a last-minute recording because I sent an assignment to an incorrect email address. An actress friend, Star, came over on Monday and recorded one take for me. Star made the funniest faces when she tripped over words, and I laughed a lot when I edited the video last Tuesday.

Today, I edited another one-take video. My friend, Cass, was so funny when she messed up. Cass spoke to me when she made a mistake like I was in the room with her. Both Cass and Star would pause before starting the sentence again which made editing the videos easy. My seven-year-old, Mika, likes to start her videos while I am still talking to her which makes editing out my voice very difficult. I like the easy-edit videos most of my friends send me because they are so quick to edit, but I really liked laughing at my friend’s facial expressions and silly words. Perhaps a few more of my friends should do a one-take video occasionally.

Those three videos were not enough work for me today, no. I programmed some of my business social media, spent two hours on client social media, programmed some marketing emails, and programmed some of my journal entries to my blog. I only had the blog for Thursday left in my blog que. I was glad Mika has an after-school meeting on Tuesdays because that was the time I used to finish programming my blog posts. I would like to have another get-work-done day like today tomorrow, but, alas, I will be going to feed my soul. All work and no soul food turns Susanne into Angry Susanne; you would not like me when I am angry. After I recharge my soul tomorrow, I will put my nose to the grindstone again.

Somehow, I ended up with a lot of work to do in March. On the bright side, once I finish my very large to-do list, I do not expect to have such a big list until next March. Woo hoo! I expect April to only be a slightly busy work month for me because I will be doing so much work in March. I am planning not to work much during Mika’s Spring break near the end of the month, so I need to get it all done as soon as possible. Not only will Mika be off a week from school, my youngest sister is coming to visit. My sister and I plan to spend the week giving Mika’s toys a home in her room so I can reclaim my bookshelves (if they can be repaired). Eventually, we will get through the giant mess that is my home, and my family will not be left with a bunch of items they do not want to sort after I pass.

My piece of advice to you is to be willing to do extra work if you are able when that frees up quality time later. I want to work as little as possible in June and July while Mika is out of school. I am happy to work more in March, April, and May while she is still in school to make that happen.

Until next time,
Susanne

Please check out my GoFundMe page.

Monday, March 9, 2020
I have been exceptionally cold and sweaty since I showered last night. I cannot pinpoint any reason for it. I was fine all day yesterday and, until I took my shower, I was not sweaty or very cold. I was awake most of the night because I was shivering hard enough to keep me awake. I finally fell asleep for two hours about two and one-half hours before it was time to get up. I ran my bed heaters on high most of the night.

When I woke up, I was only chilly, not teeth-chattering cold. The giant sweat spot surrounding my body that had been plaguing me all night was contained to under my body and my sheet was dry where my arms lay. I had been rolling over frequently during the night to try to have my heaters dry the sheet, but every time I rolled right back into a cold, wet spot.

I sleep with a wedge pillow propping my stumps in the air, so I do not get pressure sores on the bottom of my stumps from the bed. Thanks to all my rolling, the wedge pillow ended up beside my legs instead of under them. At one point overnight, my big dog jumped on my bed to lay where my feet would be if I had any. As my dog walked around in a circle to find a comfortable position, he kicked my pillow off the bed.

When my older daughter, Megan, arrived to get me out of bed for the day, she looked at the pillow on the floor and then looked at me questionably. I told Megan I had a rough night; I had not been getting busy (if I had been getting busy, I would not have left any evidence for my daughter to find). Megan told me I was cold and sweaty because I wanted a shower; she said I would have been fine if I stayed dirty and stinky.

I would like to say the sweat and cold have subsided as the day has progressed, but I would be lying. I have both computer heaters plugged in and on high. I have the floor heater running and turned up the house heat. I would go back to bed, but it was not any better when I was still in bed this morning. I am pretty much useless today. I did manage to edit, upload, and schedule the Wednesday video for my seven-year-old’s, Mika, YouTube channel.

I have a Monday, Wednesday, Friday schedule for posting Mika’s videos. On Mondays, I edit, upload, and schedule the Wednesday video. On Wednesdays, I edit, upload, and schedule the Friday video. On Fridays, I edit, upload, and schedule the Monday video. That schedule has been working pretty well for me since I started it at the beginning of the year.

The recording schedule for Mika’s videos is a little less structured. We recorded half of Mika’s reading videos during the summer break and the rest on Mondays until early November. We record Mika’s adventure videos whenever we go fun places. We recorded Mika’s Christmas videos on Christmas day, and we record her jokes on Mondays, now that we are not recording reading videos. Basically, we record when we feel like it. We did not record videos today. I have been shaking so hard, I do not think I can keep the camera even remotely still. I am shaky enough with the video camera on a good day.

I have given up on making this day even remotely productive. My helper is doing tasks that do not require any participation from me, and I appreciate it. At this point, all I can do is hope that tomorrow is better and scratch today off as a bad day. I do not mind one bad day; twenty bad days in a row would be a problem.

My piece of advice to you is to have a bad day. Everybody has good and bad days even if you do not have cancer. I feel so miserable today, I probably will not have a worse day for the rest of the year. I am okay with hitting bottom in March; now I have nine more months to be amazing.

Until next time,
Susanne

Please check out my GoFundMe page.

Sunday, March 8, 2020
I think today is the last doughnut day for my family. It was a short-lived family tradition, in the grand scheme of time; however, I will miss it. I wrote about doughnut day and how much it meant to me, even though I do not participate in it any longer, in November. My seven-year-old, Mika, did not eat her doughnut today. Mika said she does not remember if she even ate her doughnut last week. I asked her if it is time to ask dad to stop buying her a doughnut when he shops for groceries.

Mika said yes and my heart nearly broke. My eyes are trying to get wet as I write about it (You know it does not count as crying until a tear falls out.). I told her dad that Mika does not want him to buy her anymore doughnuts. The white bag from the bakery will not come down the stairs after Mika helps her dad with the groceries anymore. I will not see the smile on Mika’s face as she shows me the sprinkles. The doughnut day book of our life is closed, possibly never to be reopened. (In full disclosure, I took a break after writing each sentence of that paragraph to make sure my eyes never got wet enough to spill out water onto my face.)

Today has been pretty much a blah day. I told Mika I was having a blah day and she asked me what that means. I told her I was not sick, I was not tired, I was simply unmotivated. I simply want to sit in front of my computer and heater and watch Jane the Virgin on Netflix. I do not want to read emails, I do not want to talk on the phone. I do not want to play video games (which I usually do while watching Netflix). I do not want to think. I do not want to write today’s journal entry, and I definitely do not want to write any of my uncompleted days from the past week. Next week I will simply have two weeks of holes in my journal.

I simply want to sit in front of my computer and heater and watch Jane the Virgin on Netflix. I watched the first season of Jane the Virgin when it was on the air several years ago. I watched several episodes of season two; however, I missed an episode here and there and missed a few key plot twists, so I quit watching. I did the same with the CW’s superhero shows at the same time. I planned to purchase the superhero shows such as The Flash and Arrow when they became available at Black Friday sales.

Now, if I miss an episode of a show that you need to watch each week to understand the next episode, I simply stream it from my computer the next day. I stream shows when schedules conflict for shows I like. On Mondays Manifest, Bull, and The Good Doctor air at the same time. I choose which show I watch when it airs based on the ease of use for the network’s streaming service.

ABC’s streaming service is the worst, so Sunday through Wednesday at 9:00 p.m. I watch the new ABC shows. Those are the only four shows for which I am willing to put up with ABC’s streaming service. After commercial breaks you are frequently restarted at the beginning of the section you just watched. When you click to the section ABC’s player should have taken you to, the commercials play again. I am pretty sure ABC does this on purpose to inflate their view numbers for their advertisers. ABC’s bad streaming service certainly gets me to watch their shows when they air instead of streaming them.

CBS is my second choice because I like their streaming service the best. CBS shows all their shows in the order they aired, so you never need to wonder if you missed an episode. Simply scroll down to the last show you watched and work your way up. I watch most of the CBS shows because I like their streaming service so much. I only watch two NBC shows so those are my third choice, but their streaming is pretty good. I would likely watch more NBC shows if they listed them by air date instead of by show like CBS.

My piece of advice to you is to occasionally enjoy a blah day. I am simply going to sit in front of my computer and heater and watch Jane the Virgin on Netflix.

Until next time,
Susanne

Please check out my GoFundMe page.