Category: pandemic

Standing Up To Life

Since October when it became clear I would have to give up some of my hopes and dreams I feel I haven’t been myself. I seem to lack focus and I have felt lost, defeated and frankly sad. There has been no shortage of tears. I have never considered myself a victim and I don’t want to start now. So after months and months of being in this dark place, I feel like I need to stand up for myself and look life in the face. I need to try and reconnect with my optimism, I need to channel a little Pollyanna.

This past year has been tough, I have felt isolated and very alone. But the one thing I had to hold onto was my hopes and dreams. They were my source of inspiration and motivation, especially with my agoraphobia. I would use them to motivate me to try harder, push further and most importantly, not to backslide. And sometimes they were just a bright spot in my day. It wasn’t about whether or not they would come true, although that would have been great, it was about believing that life can be better. That’s where I can tap into my Pollyanna. She has gotten me through some hard times in my life. But in the last few months she seems to be as lost as I feel.

I feel like if I don’t try to stand up and face life it is going to just run me over. It sounds so easy, but lacking focus and motivation is making it hard. Plus if you factor in the loss at the center of those hopes and dreams, it feels like a step hill to climb. So, I’m going to start to push myself and it maybe only tiny steps in the beginning, like in the beginning of therapy with my agoraphobia. If I’m lucky along the way I will find some other hopes and dreams, but they will never replace the ones I have lost.

Trying to Survive From A Distance

The underlying theme of 2020 for me has been survival. At the beginning of the pandemic it was survival of the fittest. The search for supplies, groceries and even toilet paper was challenging, especially when balancing the search with the precautions necessary for someone immunocompromised. I was able to get creative and manage to limit some of the risk. Then there was the first stay at home orders, I saw it as an opportunity to get things done around my house, and so I was ok with it…in the beginning. But I started to feel more and more cut off from friends and life. I got restless and frustrated and sad. And then there is my agoraphobia, I normally use my social connections to keep me motivated. I am concerned, without those connections I’m worried about backsliding. A friend came up with the idea of doing distanced lunch in my garage and my infectious disease doc signed off on the idea. It was great to feel some connection again. I have had a few visits in my garage. But now it’s cold and other people’s lives are moving forward, so visits have basically stopped.

Then came the first of the holidays, I have to say since my son died holidays are tough. But nothing like 2020, I was not only missing my son, I was alone with my grief, my pain and my loss. I tried to face the holidays, I tried to honor the memories of celebrating with my son. But the more holidays there were the harder that got. I finally just started focusing on work and ignoring the actual holidays.

The isolation became so hard I finally had a conversation with my ID doctor to see if any kind of social bubble could be safe for me. We discussed the people that I know and there was only one person she felt was safe for me to do a social bubble of one with. I was so excited!! I finally had the opportunity to see this person, movie night at his house. It felt wonderful to spend time with someone, it felt normal. But the ironic thing is now that person doesn’t want to see me again, so now I am back to being alone. I did find a way to write somewhere other than home, as I have posted before, I figured out how to work in my car. But the colder weather is sure to affect that too. I have tried to stay busy, I work on the book, I work on the business, I exercise, I run my errands. Some days I feel like I just go through the motions of life.

I celebrated my birthday alone, I did try to reach out to the one person my doc approved, but that didn’t work out. It was the worse birthday I’ve ever had. Before this my worse birthday was when I was on chemo. Then Christmas came, this one has really taken me down. But it’s a combination of things, of course there’s the pandemic, the increase in cases of Covid and the isolation, but there’s also so much anger and chaos in society and life. To try and help my own sanity I started baking and painting ornaments for small gifts. I felt like I needed to try and spread some kindness and even if it didn’t help others maybe it would help me. I creatively and safely delivered bake goods and the small gifts to friends and people I thought would be receptive to my small acts of kindness. But then after I did that I was just alone again. The actual holiday was hard, but I guess I survived it.

I was feeling very alone and lost this past Saturday, so I packed my laptop and went to the park to write, but I couldn’t focus on writing. Actually I just wanted to go home, so I did. When my son was having an off day I would change things, like what we were doing. I decided to try that, so I tried to borrow some movies I’ve really wanted to see from someone, but that didn’t work out. So I ended up just crying and feeling so lost and alone. It’s been interesting, the more I open up to people about how I am doing, the less I hear from them, which makes me feel more isolated.

In the beginning of the pandemic my worse fear was getting Covid-19, I was afraid I wouldn’t survive it. My docs confirmed that, they don’t feel I would have a good outcome. But the longer we are on this journey, this curve, I feel that mentally surviving is getting harder and harder.

Pandemic Rant

I have been working on a different post and trying to resist the urge to write about this, but I feel it needs to be written. As I write this my region of California has been put on a stay at home order due to the lack of available ICU beds. And in the days that have followed the availability of those beds is diminishing.

To give context to my rant I need to go back to the beginning of this pandemic. I have been appalled by the leadership in my county, or lack there of. I have seen a health officer forced to quit because of harassment and death threats after issuing a mask mandate. I have seen people get crazy angry over the wearing of a simple mask. I watched the board of supervisors of my county try to find a way out of the state mask mandate in the midst of the first surge. I have seen friendships end over differences of opinion about Covid. I have had people point and laugh at me wearing a mask in my car. I have been accused of being too careful, too concerned about the risk. I have seen people I know be diagnosed with Covid, and I know people that have died of Covid. I’ve heard an endless number of conspiracy theories. I’ve seen a lack of national leadership. I have seen individuals and some businesses defy the basic precautions to slow the spread.

With all that said, I have some questions. What is so bad about wearing a mask? I not excited about wear a mask, but since it can save lives it seems like a no brainer. I’ve heard people say wearing a mask violates their rights, I’ve thought about this and I don’t see it. It doesn’t silence your voice, it doesn’t interfere with your faith, it doesn’t take away your right to protest, it didn’t prevent anyone from exercising their right to vote. It doesn’t interfere with going to work or freely moving about. The people who have died of Covid have lost all those rights. And how many of them lost their life because of someone who couldn’t be bothered?

Now I hear the anger at this new stay at home order, and I understand, we are all ready for this to be over. But it’s not! I understand the frustration of businesses that are taking a hit in the midst of this pandemic. I understand they don’t feel it’s fair to have to close or have to change again how they do business. But on the other side, how many lives are they willing to sacrifice to have business as usual? As an immunocompromised person I am expected to stay home, I believe it isn’t until the last tier that we are invited to rejoin society. To me, it feels like I am giving up some of my freedom only to watch others make, frankly, stupid choices. On Thanksgiving I spent the day alone, as I have all the holidays this year, because it’s not safe for me to have close contact with most people. But I watched over the holiday as millions of people traveled and spent time with family, totally disregarding the advise of the experts. And why? Because it’s what they wanted to do, damn the consequences!! I hope that none of their loves ones get Covid.

And now at their most recent meeting the out of touch leadership in Orange County is once again trying to be excluded from a state order. They feel the stay at home order isn’t fair and that OC shouldn’t have to be lumped in with the other So Cal counties. They feel OC is in better shape, but the numbers don’t support that. Never the less, they are going to ask the governor to separate Orange County and let the county be responsible for dealing with Covid. This is a frightening prospect, I can’t imagine the governor will approve this request, I certainly hope he doesn’t. Then I saw on the news in the another state during a meeting of local officials there was one official who’s 12 year old child was at home and this official needed to leave the meeting because protesters were pounding on the door of her home. This is not right, yes there is a right to protest, but not to scare family members, especially children. I support the right to peacefully protest, by all means carry a sign, safely gather and even chant or yell, but pounding on the door of a private residence crosses a line, actually I studied law and that would be considered trespassing. And all this is again over a simple piece of fabric that when worn can save lives.

Please for the sake of your fellow human beings, please wear a mask, socially distance and wash your hands. And please only gather with your own household or your own social bubble. And if you feel compelled to protest, do so, but please do it safely and legally. Someone’s life literally depends on what you do.

Isolation is More Than Being Alone

I am still struggling with the new normal, which has no relationship with normal at all. I have tried to come to peace with being home, trying hard not to feel trapped, but I haven’t succeeded yet. Being alone isn’t always easy, fortunately having been an only child I do know how to be my own friend. My biggest problems are feeling cut off from life, the loss of social contact and the loss of human connection. I am hugger, I love to give hugs and I love to get hugs. It has been about eight months since I have shared a hug with anyone. I haven’t even been less that 6 feet away from any of my friends. It’s not normal, it’s not even natural to be so detached from other people.

As I have mentioned before, when my agoraphobia was at it’s worse I felt like life keep moving without me. And now I feel that again, although it seems harder this time, last time I still had Robby with me, but now it’s just me. And under normal circumstances I can deal with the fact I’m alone, mostly because I still had my social connections. But now there’s none of that, and I just feel more and more alone. It’s never been easy being immunocompromised, but I was able to find a way to live with it, but now it’s the barricade between me and life.

I have tried reaching out to stay in contact with people, but their lives are still moving forward, so that hasn’t always been very successful. I worry that the longer this lasts the less likely I am to reconnect or even catch up with others.

Life, Death and Perspective During A Pandemic

I think the pandemic is what most of us will remember about 2020. But for me, it will also be the year my brother-in-law died. He bravely fought stage 4 Glioblastoma cancer for 22 months, with all the dignity that cancer allows. He is caring, kind, compassionate and had a passion for life. Because of that, his career was a perfect fit, he was a psychiatrist at the VA treating PTSD patients.

I posted on my Facebook page about my brother-in-law’s death and I wrote that I will carry him in my heart forever, which I will. I got an interesting comment from a friend, she said it’s nice of you to say that, but she went on to say, most people just say that when someone dies. I thought her need to share that perspective was interesting. As someone who has dealt with a lot of loss, I’ve heard many unusual comments, but I usually chalk it up to people not knowing what to say. But this one felt more personal, like she was calling me out for how I feel and what I believe.

This idea of carrying loved ones that have passed with me is not something new, I have written about it before. I do believe that the loved ones I have lost are still with me and continue to move forward with me. I know that they are so much of who I am; good, bad and indifferent. I don’t understand how you could leave them behind, or why would you want to? As an example, there have been so many times over the years when I found strength in knowing my husband Robert is still with me, especially when things were bad with my son. In those bad times I would even feel someone touch my back and I believe it was him, that was something he did when he was here. I know that may sound crazy, but I do believe in signs.

As for my brother-in-law, I will be lucky to carry him in my heart, I would love to be more like him. I’m sure going forward I will continue to learn from him. I know there are many people who believe as I do, and probably just as many that don’t. I think it’s all about your personal experience and perspective.

Pandemic Panic

I have been struggling with my panic/anxiety and my agoraphobia during the pandemic. In the beginning it didn’t seem as bad, there was a level of distraction and shock. Then things got crazy so fast and then came the lockdown. When that started I was ‘ok’, I saw it as an opportunity get some things done around my house. At first that’s what I did, I cleaned, I went through things, I cooked and I stayed home. But then things starting get worse with the virus and I started having trouble. I couldn’t concentrate on anything and then I became what I would call non-functional. I would spend an entire day in bed, or just sitting. I was aware of this behavior; I just couldn’t seem to do anything about it. I knew I couldn’t continue this way, so I pushed myself to get up and I used something I learned in therapy. When I started working toward going outside Dr Eppler told me to get dressed like I was going somewhere to create a mindset of going. So, I tried that now, I got up, showered and got dressed. Some days I still did not do anything, but I figured at least I had gotten dressed, I took that as progress.

I became scared that my years of hard work and progress with my agoraphobia would disappear, I don’t want to start over again. I tried to reach out to a couple of people that had provided me with motivation before, but no luck. I am alone and that wasn’t helping either. I had tried being busy, I switched my small business to making fabric face masks, that helped some. One day I realized I was basically living in my bedroom, this reminded me too much of my agoraphobia. All I knew was I needed to figure out why this was happening so I could hopefully find a way to deal with it.

Obviously, coronavirus is affecting my anxiety, as I have mentioned before I am immunocompromised, I have primary immune deficiency. I was given information from some of my doctors about precautions I need to take and how to protect myself. I was also told that if I get this my chances of surviving are not good. Another contributing factor was the isolation, I have used social interaction to motivate me with my agoraphobia, now that is gone. Just like when I was stuck in my house, I feel like life is passing me by, this time I worry if I can catch back up with it. Then there was the question I asked my infectious disease doctor, I asked how long these precautions would be necessary for people like me. She said till at least March 2021, but she feels it will be extended till later in the year. That felt like getting hit by a truck. I again found myself non-functional. Adding to the anxiety now is the spike in cases of Covid-19.

So, as of now, I am experimenting to find things that might help. I have increased my daily exercise. Normally I do 1 hour at home and 1 hour at the gym, but of course the gym is off limits for me till maybe next year. I have found that exercise really helps my anxiety. I am trying to do better about being productive, like working, cooking and cleaning. I am still filling mask orders, but I am also back producing the regular products for my business. I am limiting my outings, which I have tried to do all along. I don’t go out until I have 3 or 4 things I need to take care of. I get dressed most days, whether I am going out or not. And some days that includes accessories, something that I love and something that feels normal. I have pushed myself to eat meals at the dining table or at least not in my bedroom. I have started some creative projects like painting. I am still struggling with motivation and focus, but hopefully that will get better.

As I type these words, I can feel the anxiety, panic and fear in them. I will continue to share how I am doing. It will be like journaling, that will give me a much needed outlet to talk about it. And if any of you are dealing with increased panic and anxiety please feel free to share it in a comment. I am holding on to hope that there is a way to get through this; holding on to hope has gotten me this far.

To Mask or Not to Mask….

I have been watching the debate over mask orders, which seems to include death threats for health officials that make the orders regarding mask and claims of a loss of freedom and constitutional rights. This issue is close to my heart as an immunocompromised person. But I am going to take a open minded/unemotional look at this issue.

First some general observations, I will use my county in California as my example, but I may also refer to my state as a whole. In the county where I live the health officer issued a order changing masks from recommended to required when businesses started to open. This was met with anger, protests and death threats against her. She ended up resigning, and then the order was changed back. Mind you every business, medical facility, restaurants, hair salon and nail shop require people to wear mask. This is not only their right to do, but is included in all the recommendations for reopening; CDC, state and local. Just about a week ago the governor issued a mandate requiring masks in response to the spike in cases we are experiencing in the state and specifically in certain counties, including my county. This has refueled the mask debate.

First lets look at the constitutional rights argument. I will try to look at the amendments that might be applicable in the interest of time. As for freedom of speech and freedom of assembly, I think that the very fact that people have gathered and protested the mask issue means there is no loss of freedom of speech and assembly. The press had covered this, as well as the other issues regarding coronavirus, so we still have a free press. And I can’t figure out how a mask could interfere with someone practicing their religion. Now some people may argue that a mask is cruel and unusual punishment, I’m not sure that would stand up in court, but I’m sure someone will try.

The other argument has been that the mask orders are an overreach of government. Since states have broad powers to protect the health and safety of the people, it would seem like a mask order would fit into that power. Lets look at the back story, researchers have been looking into the science of masks. Their studies have been focused on whether a mask protects the wearer and/or the people around them. At the beginning of the pandemic it wasn’t clear if it did offer protection, there was actually a lot of confusion on the topic. But as more has been learned about Covid-19 scientists and doctors agree that a mask does offer protection and is one of the few things you can do for protection. I’ve heard some doctors refer to wearing a mask as a sign that you respect and care for others.

I will close with my own conclusions about masks. First, I understand that no one wants to wear one, neither do I. For me I weigh it against the risk of getting Covid-19 and I feel like it’s a no brainer. It’s only a piece of fabric and it’s not forever, although it may be for those of us immunocompromised. I’ve heard some doctors compare it to the argument regarding seatbelts, that seems like a great analogy. Both are required for the purpose of protecting your health and safety. Seatbelts have certainly saved lives and severe injuries. In time I think masks will be shown to have saved lives. I will leave you with a question, what if we all wear a mask and this virus gets under control and we could get on the other side of this pandemic?

I don’t usually use this forum to take on issued like this, but it has become such a controversy and like it said it’s close to my heart.

Pandemic Pandemonium

It’s been about three months since I posted, and so much has happened. I have been struggling with my panic/anxiety. I’ll start with some quick updates from my last post, first the hoarding is better, but not completely gone. Toilet paper and paper towels are still at times very hard to find. Grocery store shelves are still not full, antibacterial wipes and cleaner can be nearly impossible to find be found. I did finally get some hand sanitizer, I felt like I won the lottery! Grocery shopping has become a cross between hide and seek and survivor.

One of the biggest changes is that the economy is opening up, which for people like me that are immunocompromised is scary and doesn’t include us. Under the CDC, state and local guidelines we are still to stay at home. My infectious disease doctor told that these precautions for me will last until at least March of 2021, and she believes it will be extended past that. This has been hard, I feel cut off from people and life. I have used social connections to help me with my agoraphobia, but now that is not an option. It’s funny, when my agoraphobia kept me at home I felt like my life was on pause. But as I could rejoin life I had to deal with the reality that life continued on without me, I felt like I had been left behind. I have continued to deal with that feeling. And now, with the reopening I find myself feeling that all over again. People are going out shopping, getting their haircut, complaining that they can’t get their nails done yet and more. And once again life is moving forward without me.

I have found that the majority of people think that only old people, especially in nursing homes, are the only people at risk, that is not true. There are a lot of people like me, not old, living in our homes but with various conditions that put us at risk. For me it’s two conditions that put me in that category, as I have written about before I am a stage 4 cancer patient and I have Primary Immune Deficiency. I have dealt with my immune problems my whole life, I have learned how to be ‘safe’ and still be able to live a mostly normal life, until now. I think one of the biggest threats to me with the coronavirus is I don’t make antibodies, I never get over anything on my own. My doctors have told me that if I get Covid-19 I probably wouldn’t survive it, that’s a big dose of reality.


Losing Faith In My Fellow Man….And Woman

I have both seen and been in the middle of chaos, insanity and a loss of common decency over the past few days. As everyone is aware there is a pandemic named COVID-19, better known as coronavirus. I have been out trying to purchase some groceries and supplies, as have thousands of people. The difference for me is that I am not hoarding food and supplies and I have tried hard to maintain a pleasant attitude and show some human kindness. I wish I could say the same for my fellow man and woman. I have witness people’s anger, frustration and impatience. I have seen people pushing, grabbing, yelling and being beyond insensitive. As I have written before, I use a wheelchair when I am out. I have been cut off, blocked and intimidated. Yesterday I was even pinned twice against the shelves in market, unable to move in any direction. I don’t expect special treatment, but I would like to be treated humanly.

I see these people just grabbing things off the shelves, I wonder at times if they even know what they are buying. Then there is the battle for water and of course toilet paper, I don’t understand why the obsession over toilet paper. From what I understand about the coronavirus extra toilet paper is not required. And they aren’t going to stop producing toilet paper, and when you need to buy it they always have it at the store. I have not been a part of the toilet paper drama, I already had enough. The store I was in yesterday there was a limit of 1 package of toilet paper per person. One of the times I was pinned in the aisle was when they were stocking the toilet paper and as I was leaving the store there was a fight starting because a woman had about 10 or 12 packages and was laying on them while she was on her phone calling her friends and family to come get them. By the way, it was so bad at this store yesterday that I gave up and left.

I have primary immune deficiency, I’m sure I shouldn’t be out in this craziness, but needed some groceries and it’s not like you can get everything you want at one store. My immunity deficiency brings up another issue in this insanity, people hoarding hand sanitizer and antibacterial wipes. These are things that I use every day, 365 days a year, not something I buy in mass quantity out of fear. Again, like the toilet paper, these are products are still being produced. The person who manages to hoard the most doesn’t win a prize, but people like me pay the price. I can’t even go to the gym in my complex, something I do every day, because I can’t buy antibacterial wipes. I use them every day, with or without coronavirus, to wipe down the equipment I use. These product allow me to participate in normal life, but now I can’t. I know I am not alone, there are many people that for various reasons are at a higher risk. My brother-in-law sent me an article about 2 guys that hatched a plan. One guy drove all over Tennessee and part of Kentucky in a U-haul truck and managed to buy 20,000 bottles of hand sanitizer. They also purchased thousands of packs of antibacterial wipes. The other guy stayed home and prepared for pallets of even more wipes and sanitizer that he had ordered. They started listing them to sell on Amazon, they posted 300 bottles of hand sanitizer, they all sold for between $8 and $70b each. The next day Amazon pulled their items and thousands of other listings and some of the sellers were suspended and many others received a warning. Now my question is why weren’t all the sellers suspended, it is wrong to make a profit from a pandemic. Ebay followed prohibiting any U.S. sales of masks and hand sanitizer, you’ll notice no mention of antibacterial wipes. On Ebay there are many listings for wipes and the prices are insane, a 4 pack of wipes that on a average day sells for about $12 is being sold on Ebay for $89 and up. I finally purchased a single container of 35 wipes on Ebay, but instead of about $5 I paid $20.

The guys in Tennessee are sitting on all that hand sanitizer while people, including me, search in vain for it. The one guy says he doesn’t know where he’ll sell the other 17,700 bottles. He says first he was in a situation that was going to help his family financially and now he doesn’t know what he is going to do with all of it. To me the other appalling part of this is one of the guys in this story is a former Air Force technical sergeant, who has been selling on Amazon since 2015 and has managed to make it into a six-figure career. After the article was published the state attorney general’s office sent an investigator to his home and gave him a cease-and-desist letter and are now investigating this case. His defense is that he was not price gouging, that the extra money was to cover his costs, like postage. He added that he was just fixing inefficiencies in the marketplace, because some areas of the country need these products more than others and that he is helping send the supply towards the demand. He went on to say he feels like it’s a public service. There was an update to this story, since the story came out and they have been scorned by the public, they have decided to explore ways to donate all the supplies.

I remember when people took care of what they needed, but also made sure they helped each other. Neighbors would look out for other neighbors, especially ones that might need some additional help. There is a devastating loss of compassion, I have seen it over time. But what I have seen in these past few days has caused me to lose faith people. I always try to see the good in people, but apparently that is another casualty of the coronavirus.