Category: Life

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.

Chaos, Confusion and Christmas…..

It’s been a long dry spell between posts, where to begin? Well, since my last post I celebrated my birthday in November, we celebrated a quiet Thanksgiving and I was busy sewing aprons, more on that later. Then I was in a curated boutique at a church, which brought us to all the chaos of Christmas. The normal chaos of Christmas was joined with confusion and deadlines. As I mentioned I was busy sewing aprons, this was something that started the Christmas before. I had made a couple of aprons like my Great Grandmother made and wore for a few friends that cook and bake. Out of that came the suggestion to make them to sell. I decided to name them for my Great Grandma, so I call them Gram C’s Vintage Aprons. I love sharing her apron legacy with others, she was a huge influence in my life. As it says on the hangtag on the aprons, she taught me how to cook and how to wear an apron. Christmas Day I was able to spend time with a very good friend and his family, it was wonderful. So much of the holidays is about family and I don’t have any family. I enjoyed being with his kids and their kids, it felt like Christmas.

Then came New Years, I don’t do resolutions, but I usual have something I am hoping for or hope to do. This year I want to limit the amount of negativity in my life. That sounds like a big goal, but it needs to happen. I am surviving with stage four cancer with a recurrence, the death of my son (my heart), the death of my husband, the loss of my family, agoraphobia, other health issues and my panic and anxiety. I think at this point wanting less negativity is a necessity.

The new year has brought with it more progress on the book, 15 chapters done and I am working on the last three. My hope for this year is to find a publisher. My goal to this point was to finish the book, I didn’t want to leave it unfinished. And now with the finish line is sight, I want to be able to see it published. It’s funny what started out as something I wasn’t sure I really want to do has grown into this huge accomplishment, I am so proud of this project and my hope has always been that it might help someone else.

For more information about the aprons please visit Gram C’s Vintage Aprons Facebook page. http://www.facebook.com/gram.c.vintage.aprons


Embracing Weirdness

I have had several people tell me that I am weird.  At first I was annoyed by this, everyone is different, is that weird?  But after thinking about it I have decided to embrace my weirdness!  I am different/weird, I have never lived a normal life and I am okay with that.  There have been times when I have tried to hide my weirdness, but why should I have to do that?  To make someone else feel better?  I am tired of trying to change so people will accept me.  Well, no more!  I am embracing my weirdness!

I’m sure there are many things that make me seem weird, like my anxiety.  Even though there are so many people who have some degree of anxiety it seems there is still a lack of knowledge and a stigma attached to it.  Then there is my agoraphobia, talk about a lack of knowledge.  And if it doesn’t make me feel weird enough, by the time I try to explain it I want to hide from me.   There seems to be a mindset that when something isn’t understood it is weird or strange or just wrong.

That lack of understanding was true in my life with my son, Robby.  He had problems not easily understood and his behavior was not the ‘norm’.  So people were stand offish with him, when he was little people would even keep their kids away from him.  So I created a life for us and only invited in people that accepted us.  This made us seem weird, but we were happy!

And now I have someone in my life that suffers from debilitating social anxiety, and trust me people think that’s weird.  But I have found that some of the best people I know and love are weird and I wouldn’t want it any other way.

So, try not to avoid people who seem different or weird.  In stead say hi, get to know them.  Their weirdness may just be what you need in your life.  And if you are the weird one like me, just embrace your weirdness, life is so much happier when you aren’t trying to hide it.

images (2)

Sorry

Once again there has been a huge gap in postings, sorry.  Life the last couple of months has been kinda crazy….again.  But I am getting back on track and hopefully I can stay there!!!

Baggage That Needs To Be Packed

I have a chapter in my life that I really want to fold neatly and pack away.  I have processed it, learned lessons from it and want to move on from it.  I haven’t been able to do that because the people involved still owe me money.  Yes, that was one of the lessons from this, don’t loan money!!  So, one of them has chosen to ignore my attempts to collect it.  The other one made a payment arrangement with me and paid some payments (not on time) and now has quit paying.  Now I am left with no option but to file at small claims court, not something I want to do.  So last week I filed the first case, this one is against the person that quit paying.  Next stop…court. Then I will file against the other person, I decided to take them on one at a time.  This has brought back the feelings, the memory of what happened and all my regret that I let myself get into that situation.

I wish that court could be the end, but even if I get a judgement I will still have to try to collect the money.  Some days I feel like this will never be over, but I am trying to hold onto hope.  I have my bag ready to be packed…….some day, some day!!

suitcase3

I’ve Met The Enemy….And It’s Tiny

It’s been too long since I posted here, I’ve been dealing with a new enemy.  I am allergic to mosquito bites.  This summer I have already been bit 16 times, it’s just the middle of July.  This battle has taken me to the ER twice, several doctor’s appointments, lots of steroids, many boxes of Benadryl, lots of tubes of cortisone cream, antibiotics and endless hours with the icepack.  It has caused pain, swelling, inflammation, itching, nausea, hours of walking the floor and many, many sleepless nights.

I went online in search of info about preventing mosquito bites.  I read about all kinds of repellants and found some that are natural, I don’t like to put a lot of chemicals on my skin.  I read an endless amount of advice about what clothes to wear, what colors to avoid wearing and times of day to avoid being outside.  I read medical articles about why some people have such severe reactions.  I also made a request to the OC Mosquito and Vector Control District, I wanted to see if there was anything we could do in my complex to help.  The inspector came out and found what kind of mosquitoes we have; we have the Asian Tiger mosquito.  He told me they are black and white and are only 1/4 long.  He explained that his mosquito can breed in less than 1 ounce of water.  And they are aggressive, yeah-I’ve seen that.  And this kind bite in the daytime as well nighttime.  He found one source, but was concerned there are more, so he made some recommendations.

The ‘side effect’ of this ‘war’ is some backsliding with my agoraphobia.  I am staying home more to avoid getting bit.  But when I do go out there is my friend anxiety waiting for me.  Things I haven’t had any trouble with for a long time are difficult again.  This is not only frustrating, but it is discouraging.  With so much summer left the reality is I will have to be inside more.  So, my thoughts are first, I think it’s good that I am aware of what going on.  Second, I have to find a way to address this, so far I have decided I have to leave the house at least every other day.  It doesn’t matter whether I just go drive or do an errand, just so I leave the house.

I will not be pushed back to where I was by this tiny, annoying insect.

p