Moving, Vaccines, Minimalism, Hosptials, The Kitchen Sink Blog Post
I am way overdue for a blog post. I don’t know about you but my brain fog ebbs and flows with each different phase of this pandemic. I haven’t always felt very productive but still a lot has happened. We moved from our home of 23 years, Jonah got a job as a reporter for the Las Vegas Review Journal and Lowell has had his usual IBD ups and downs, interventions, hospital stays, etc. I even wrote about our fall hospital stay here but never posted it. Please read!
We had been thinking about moving for 3 years and looking on and off. When we finally found this house in January, everything happened quickly and we went into organizing and purging mode, hired movers and were in our new place by mid-February. I am an aspiring minimalist and I regularly listen to this Podcast which is informing me as I journey toward a life without the burden of stuff. Joshua Fields Millburn and Ryan Nicodemus of the Minimalists will tell you it is not just about the stuff, but about living a meaningful and intentional life. Listen to the podcast and you will be surprised about how many aspects of life can be viewed through the minimalism lens.
At our old house, we had lots of sneaky storage places and the accepted thinking in our consumer obsessed culture has been that storage is good, and don’t let a good closet go to waste by being empty! So we abided by this cultural norm, saved every bit of stuff like the good little sentimental people we are, and had boxes and boxes of photos, journals, all the kids art and school projects, papers, trophies from the 30+ teams that each of our 2 kids were on over the years, books, vinyl albums, even tapes and CDs, clothes and toys from when the kids were little that one day I would give to my grandchildren, and tons of things that the minimalists call “just in case” items. Like lots of camping equipment and I don’t even want to go camping anymore at this point in my life. Yet we had two tents and probably six sleeping bags.
I am not really living a minimalist lifestyle, but I’m on somewhere in the middle finding what works best for me. There is no right or wrong way but from what I have read and researched over the past few years, the idea of less resonates with me. As we got ready to move, we pared down, got rid of the stuff that no longer served us and was actually a burden.
Here is a list of what we did
- Put all the kids’ trophies out, took a picture, then got rid of all the participation trophies and kept the ones where they actually won something whether it be a championship or some kind of sportsmanship award.
2. Went through each kids’ art and schoolwork, took pictures of some, and kept a medium size box of saved items for each of them.
3. Collected all the photos into boxes. I didn’t have time to organize them before we moved so I am in the middle of that massive project now. Remember people before everything was on our phones and we had cameras and took pictures and went to the photo store then went back again to pick up said photos? There was no instant gratification. It was exciting to remember what you actually took pictures of and how they came out. Well, that mini dopamine hit is no more, and we can instantly analyze each picture, re-take if need be and most importantly, send the bad ones to the trash icon right away. (But where do they really go?) I do a little bit every week when the inspiration strikes me. Remember how you could get doubles of each picture? Well, many of those were never necessary and there are also a lot of terrible photos that belong in the trash. Maybe I will actually use my dormant Pinterest account to show my photo storage system when completed. I digress.
4. Rented a dumpster to fill it up with trash that could not otherwise be donated or recycled. It got filled up. We rented another one. It got filled up. We rented another one. Yeah, I am not proud.
5. Donated things that we didn’t need or want anymore that were in good condition. Books, clothes, kitchenware, etc. We gave things to people we know who might find use in these items, made several trips to Goodwill, and for larger items like an old surfboard, desk, etic, put them out in front or our house. On weekends, anytime we did this, the item would be gone within hours.
During this packing and moving period, the vaccine roll out started. There was a system of prioritizing who was eligible for the doses. First it was health care workers and older people. Some states started with 75 and older others with 65 and older. As each site got more doses, they accommodated groups that become newly eligible over time. It was hard to keep up, and these eligibilities changed state to state, county to county. There was not enough vaccine for every American all at once, not to mention the logistics of doing so. The unprecedented weather in Texas caused some delays and then there was the ruined batch of the Johnson and Johnson vaccine. Then there was the pausing of such vaccine due to worrisome clot issues. Yet it seems there is enough Moderna and Pfizer and the vaccine appointments are now open to anyone 16 and over.
There have of course been issues. Some groups have difficulty accessing what they need to do to get to the vaccine such as not having internet, not knowing exactly how to make the appointment online, not having transportation to get to a site, etc. I know there is also vaccine hesitancy which is being addressed through community outreach and education. I heard this report on NPR about a mobile vaccine operation that is doing just this. When people in a hesitant community see neighbors and others receiving the vaccine, they are more likely to want to get it themselves.
I am not an expert on all the sites, demographics and infrastructure issues that has turned this roll it into another inequitable example of how our healthcare and other systems work, but to be clear, there have been issues with fair distribution.
In January, like many, I was reading and researching to figure out when I and other people in my family would likely be eligible. Of course, my son Lowell has IBD and other health issues and his doctors wanted him to get the vaccine as soon as he was able. There were reports that some people were having a serous allergic reaction to the shot. It was likely that people who, at some point in their lives had an anaphylactic reaction to something else, were more at risk to experiencing this from the shot. Since Lowell has had food related anaphylaxis in the past and is also allergic to some medications, he needed to be in a monitored environment when he received the vaccine. I am aware that all people, at any site, are asked to wait at least 15 minutes post shot to make sure they are okay. Since Lowell has a complicated medical past, we felt more comfortable waiting for him to receive the dose at Cedars-Sinai or at another medical or hospital setting.
Meanwhile, Sam is a criminal attorney and in part works on the Bar Panel for LA County and became eligible effort the vaccine on March 1st. Jonah, who has moved to Nevada to be a reporter, was able to receive the vaccine in March as well because they included reporters in the eligible group.
When the vaccines first became available, many people who were not yet eligible began figuring out ways to get the vaccine anyway. Some through volunteering at the vaccination site, waiting in line at sites to see if there were extra doses at the end the day, or connecting with an institution or doctor that had doses. I never knew this was going to be a thing, and I assumed that people would just wait until it was their turn.
I am not here to judge, people had their easons. And really, the more people who can get vaccinated helps us all get closer to being protected from COVID.
But to say that it was simply a matter of extra doses available at many of these sites that, due to the way they need to be stored, were going to waste anyway, does not tell the whole story, and it does not take into account the larger issues at play within our health and community systems.
These are the things that I think about in terms of innequity.
1. As usual the most vulnerable communities are getting less vaccine. For example, there was an episode of 60 minutes about how Florida’s wealthier communities received more doses of the vaccine.
2. There was no system in place to deal with the extra doses and possibly there could have been a prioritized list of people, and they could be notified and asked if they were available that day to come get their dose.
3. Some people-those who have a chronic illness that can be debilitating, may not be able to stand online for hours. For IBD patients-are their bathrooms available at these sites?
4. As mentioned above some patients who are more at risk for an allergic reaction, needed to have their injections in a secure, medically supervised setting.
5. Caregivers may also not have time to leave the person they care for to wait in a line to potentially get a dose, or to volunteer at a site, or just might not have time in general to research how to do these things.
I was mulling around these thoughts in my head in January until now when Lowell and I became eligible. I am in the 50 an over category, and Lowell is in the vulnerable population that started receiving the vaccine on March 15th. Lowell just received his first dose in mid-April because we were waiting to get notified that he could get it at the Cedars-Sinai location which is a drive thru at the adjacent Beverly Center.
Since our lives don’t have enough drama already, I had decided that the J and J vaccine would be good for Lowell. His doctors said he could get any of the vaccines but that perhaps the J and J one would be better since it is 1 dose, and if he were to react, he would be done and not have to worry about getting another one.
When I signed up, I opted to get the J and J vaccine myself. I liked the idea of just having 1 vaccine and perhaps some researchers have said, it may be slightly more effective for the emerging COVID variants. I was among the 6.8 million Americans who received it before the pause. The day that the FDA announced that they were halting it to take a closer look due to 6 people, all women aged 18–48 developing a very serious clotting disorder after getting that particular vaccine, was the day Lowell was scheduled to get his dose. I was actually out of town visiting my mother and brother in Oakland and had just turned on The Today Show at 8AM when they first reported that they were halting the J and J shots. 30 seconds later my phone rang (Alas, I have passed on my love of The Today show to Lowell) and he was calling me to see if I had heard the news. He was scheduled to go at 9:30 and he received a text that his appointment was canceled.
I was 10 days post shot and I’d like to say I handled it well but I had up and down bouts of panic over the next few days. I got in touch with my doctor. More than once. I can usually handle this better but it was just one more thing after living in the midst of a pandemic for over a year, a stressful vaccine roll out anyway, and then having to worry about potential serious effects of the shot I chose to get. If Lowell had actually already received his dose, I probably would have insisted we check into the hospital to be monitored for several days. Or weeks. Kidding. Not kidding. Or that I just check myself in somewhere. LOL.
Yes I know as people have reminded me that every day there is more risk of dying in a car accident, or having an adverse reaction to a seemingly innocuous medication like Advil, or getting struck by lightning. Even when we can be cognizant of these things, that does not always translate into proceeding in a calmer state. As with medications that have potential side effects when again, risk is low, there is still that chance and I have seen rare side effects occur in some people. Lowell has also experienced his fair share of doctors being baffled as to why Lowell can’t tolerate a medication that most people have no trouble with. Or he experiences a symptom of his Crohn’s that most people don’t. So if there was going to be a 1 in a million chance of having a reaction, I still had a little anxiety about it.
Anyway, what is the post about? It is about moving and vaccines and the funky way the vaccine got into the arms of people in the beginning and our own personal vaccine story. There has been a lot of other things going on too in our IBD world. As noted above, Lowell was in the hospital in the fall, then again in January and then again at the end of March. In March, he had an infection in the port he had placed in January. Luckily, we caught it early so it stayed as a superficial infection and did not enter the blood stream. The port had to be removed, resulting in a pretty yucky looking wound, (I will spare you the picture). During that stay, he also had a scope which resulted in another stent being placed in a narrowed area of his small bowel. Then to round out the stay which also included IV antibiotics and a lot of blood tests, he was able to get a new line placed, called a Hickman line so that he can continue to receive IV fluids and meds at home, and also TPN which is IV nutrition that is helping him gain weight. He is really tall. Taller than me! Now he just needs to keep the scale moving in an upwards direction.
Most significantly, Lowell turned 21 on March 20th and at the hospital he is no longer admitted to the pediatrics floor. He had to move to the adult floors and guess what? Because of COVID, visiting hours are from 8am-8pm and visitors are not allowed to SLEEP OVER. I repeat, NO ONE CAN STAY WITH THEIR LOVED ONE OVERNIGHT. I have spent 10+ years sleeping on the cot or vinyl chair or whatever available semblance of a bed there was at the hospital, and I was now faced with having to leave him there by himself to navigate the night time intrusions, vital sign checks, and most importantly, not being there if he needed something and the nurse took a long time to respond. Amazingly, we got through it. The nurses were very kind and let me stay past the 8AM visiting hours. We had excellent nurses and attending physicians. But Lowell-well I guess he is a pro now because he was able to ask the right questions, make sure what they were recommending was correct, and basically felt empowered enough to do so. He was well taken care of and reassured me he was going to be fine. And he was. I can’t say I slept much better at home when I left only to return 7 or 8 hours later but it was so much easier than I imagined it would be when I knew this day was coming. Pre-COVID, they would allow a family member or friend to stay with a patient but we will see when that is a reality again. For now, of course I hope we don’t have a reason to go back for a long time but if we do, at least I know we’ve come a long way. I am always inspired by Lowell’s ability to get through the hard stuff with just the right amount of genuine expression of the truth of his experiences, along with the lightness and humor we can find in most situations. Being able to have trust in his care, and confidently advocate for himself when I am not there, is the best outcome I could have hoped for. He did it. Much respect.
