I’m a 46 year old mom to 3 kids and grandma to one, a military brat, a music lover, a widow, and an involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 12 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
My condition, Churg Strauss Syndrome (CSS), or Eosinophilic Granulomatosis with Polyangitis (EGPA), as it is currently called, is sarcastic and ironic, just like I am. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring.
It is diagnosed in only one to two out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. It is most evident for me in the way it made my asthma go from completely controlled to uncontrolled, no matter what we do.
I’m currently on a low dose of chemo and a biologic in addition to prednisone, and trying to wean off.
My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can.
People always tell me I should write more, so here we are. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.
Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. (When it doesn’t cause a deadly asthma attack.)
I went to the bank. I probably would have had my neighbor do it, but I was delivering another supply box to one of my doctors, so I figured I would just make a deposit on the way home. I have all my PPE.
Except, I arrived by myself. I went up to the ATM, put in my card, and saw someone pull in behind me in the ATM reflection. I crossed my fingers hoping he would go stand at the little stop sign on the ground that said, “Stand here for social distancing.”
I didn’t even put my pin number in, because I was ready to pull my card, knowing how much of humanity’s IQ has been revealed during this episode of “Making America Stupid Again.” Sure as 💩, he walked right up next to me as I pulled my card and went to the stop sign to wait myself.
He even looked back at me, and didn’t apologize or anything. This is why we are going to spend so long like this. The USA as a whole, and Florida even more so. FloridaMan has already been busy, and will be putting in overtime for the remainder of this apocalypse.
I had a thought not long ago about the way different people have reacted to the current situation with the COVID-19 pandemic. One of the things I noticed, or that I have come to believe, is that certain people have been able to handle the changes and the uncertainty much better than others. when considering the reasons why, there are three for me.
Chronically Ill Patients:
First, I am a professional patient. One year ago when there was no suspicion of COVID-19 being an issue, I was wearing a face mask to protect against pollen because it could cause an allergy attack that would become a sinus infection, and subsequently reach my lungs where it would become a respiratory infection sometimes requiring up to 8 different rounds of antibiotics and prednisone to beat it.
I have a bottle of sanitizer next to my bed, one in the living room next to the couch, and another on the counter in the kitchen. I always keep sanitizer in my purse. The two bottles in the living room and kitchen are approximately a half gallon each. I already had Lysol wipes and Lysol spray, blue nitrile gloves, at least one N 95 mask, and approximately one full box of disposable surgical masks such as the ones they used to give out in hospitals prior to rationing them.
I also had established accounts with Uber eats, Publix Instacart, and even Amazon grocery delivery. I have been meaning for months to transfer my prescriptions to mail order, but have not done so yet and I had relied heavily on my father and daughter to pick meds up for me when I was not feeling well.
As a professional patient, I was already used to washing my hands a lot, and anybody who has spent significant time around me has witnessed me jumping back on moving across the room if anybody coughs, sneezes, or even has a horse voice. Since I am immunocompromised, I am terrified of even a simple cold. A simple cold for somebody else that ends in a couple of days can take me out for six weeks at a time. If I’m unlucky, it results in a hospital stay.
My mother is a teacher. One of many in my family. Had I not become an attorney, I’m pretty certain I would have become a teacher or a photographer. One thing about teachers that has certainly been ingrained in me is to be ready for anything. There is just never a shortage of surprises and things you could never imagine when you put a bunch of kids together in a classroom. If you’ve ever seen the meme that says, “I know what you did last night, and so does the rest of the class,” rest assured it is true.
The thing I believe has prepared me the most, however, is the mindset of a military brat. I thought maybe this was just my own personal opinion, but several other people have mentioned it in some of my military brat groups online, and we have learned that we are certainly not alone in our thinking. Furthermore, being from a family of law-enforcement, and knowing how many retired/veteran members of our military have gone on to become law enforcement officers, I noticed that most of what is true for military families is also true for law enforcement families. Of course, having a father who was a military police officer meant I got a double dose of this particular upbringing.
Among the many things we have learned and picked up as children raised by and in the military (and sometimes law enforcement) world, the following have become clear evidence of how different we are than other people as a result of our upbringing.
1.Chaos/uncertainty. With the exception of first responders, such as police, firefighters and paramedics, Nobody is conditioned to expect chaos and uncertainty better than military families. We are used to it. Not only are we used to it, but this is precisely what our families trained for. When others are running away from danger, we are used to having a family member running toward it. naturally, we pick up some of those habits and many of us are quick to run toward dangerous situations to try to help others. It’s how we were raised. Children learn more by example that they do anything else.
2. Responsibility. Children raised in the military are some of the most responsible adults you will find. Responsibility is one of the most critical things taught to us. We know that the jobs are parents have or had were critical parts of the greater whole. We saw our parents fill a responsibility that often took great sacrifice. The sacrifice was not only made by the family member, but also by the spouse raising the family in the absence of the military member when here she is stationed away from home or sent away on temporary duty. Even the children must pick up more chores and help around the house more than in other families. The value of responsibility is ingrained in us from the moment we are old enough to understand it.
3. Fear. Because we live with the constant knowledge that Military family members may possibly not make it home, just as law enforcement families know their loves one may not make it home after each shift, we are used to living with that constant fear. So much so that it just becomes an accepted part of who we are. As a result, fear does not knock us down the way it does many in similar circumstances. We are simply used to taking fear on and pushing past it. We had no other choice. Now it is habit.
4. Preparedness. Military families are trained for disaster on a large scale. They are trained for survival. Most military families have enough food stored, including non-perishable foods, and much larger quantities than most people. Many of us have memberships to wholesale stores such as Sam’s Club, BJ’s or Costco. We buy in bulk. Sometimes this was because the pay was once a month and that would be when we went to the commissary and loadEd up for the month. Sometimes it was because we simply like to be prepared. In any case, we usually don’t have to do much shopping when there is a warning about a hurricane or something like… A global pandemic. Many of us even have MRE’s (meals ready to eat) on hand at home or in our cars to give homeless people.
5. Survival/defense. Most military and police families have seen some things. Those serving have seen much more, and the families benefit from that knowledge. Many families are taught self-defense, and most family members of military or police have been trained to use a firearm responsibly from an early age, and wouldn’t go without one as adults. Part of the survival/defense instinct is perseverance. We don’t give up easily. Nothing is impossible. Impossible just means somebody hasn’t done it yet. Naturally, we are prepared when we are told to shelter in place, and we know no matter how bad it gets, we will stick it out, and we will likely be the people helping others. It’s what we do.
6. Villages. not many places is it more true than in the military that it takes a village to raise a child. With many families missing a member on a regular basis, military families are completely used to depending on each other and helping each other. Even 20 years after my father retired and I became an adult, I have had veterans pull over to check on me because they saw a military symbol on my car, or a disabled veteran tag because my car was in my father’s name. As an adult, I still have this mindset and am often coordinating with other parents to do things for families or children who need a little bit of extra help.
7. Problem-solving. Because a family member is often missing on a regular basis, we learn how to do things many others in our shoes would not do. Children learn to use tools and fix things themselves at an early age. we learn how to figure things out for ourselves because sometimes we don’t have another choice. By the time we are adults, it’s just second nature for us to be creative and find ways to get things accomplished with or without any help.
8. Positivity. One thing we have no choice in learning is how to be positive despite very negative circumstances. If we walked around acting in accordance with some of the things we experience, we would probably scare people. Many of us use humor as a coping mechanism, and it’s not surprising to see someone laughing and kidding around, even during unimaginable trauma and loss. It’s sad to say, but we are often used to it. It’s not that we don’t feel grief, fear, or sadness. We just know we can’t wallow in it forever. We know how to move on.
9. Adaptability. If there’s one thing every military brat has learned, it’s how to adapt to change. Even when there’s not a crisis or an emergency, military families are always being moved from one location to another. Children attend many different schools and say goodbye to many sets of friends, I’ll need to be placed in a new city, in a new home, with new people. sometimes the new places and people are so different that we have to learn a new culture, and sometimes even a new language. This is something that benefits us throughout life in ways we probably never realize until something like this happens.
10. Loss. while we do remain positive in the face of fear, we must definitely do feel an experience loss. We grieve just like everyone else. However, we understand on a level many don’t that loss is sometimes necessary. Sacrifices are sometimes necessary. We know that sometimes it’s not fair that one family has to make the greatest sacrifice ever so that other families will be safe. There is no greater loss than this one, or one more noble. As a result, we learn to see loss not only as a sad event, but as a necessary part of doing battle, whether it’s on the field in a war, or in our homes during a pandemic.
In short, we have been preparing our entire lives for exactly this kind of situation. While we accurately read a situation and are the first ones to purchase necessary items before they disappear from the shelves when there is an imminent emergency headed our way, we don’t panic buy. We don’t panic at all.
Are we nervous? Yes. Some more than others. Some of us have underlying medical conditions that make us more vulnerable. Are we aware of the many possibilities that are scaring people? Absolutely. We know the dangers are very real, and we know what is likely even when we are being told differently by our government in an effort to avoid “panic chaos.”
What we don’t do, however, is complain about how inconvenient some of the more stringent measures being taken are to our daily lives. In fact, we are often trying to explain to others the reasons for the measures, and how to cope. We are usually the ones reassuring everyone else. Unfortunately, it also means we share information meant to be simply that: informative; however we forget that people not raised like us may take that information and process it in a way that terrifies them.
If you are not a military brat, a professional patient, or in another field that prepares you for chaos and uncertainty, don’t be afraid because we are sharing very real information with you. Pay attention to how we are dealing with it. Pay attention when we provide tips on how to get by. Pay attention when we offer help to others, and don’t be afraid to ask us for help. Pay attention to the fact that despite everything, we are still laughing and living every day to the fullest, whether we are allowed out, or confined to our homes.
Because at the end of the day, even if we were raised to expect uncertainty and chaos, we have also been raised to make the best of any situation, and we know how to navigate chaos with a smile. We know how to say difficult goodbyes. We know how to be separated from loved ones. We know how to give ourselves the best chances of staying alive when staying alive is not the given most of society has been raised to take for granted.
If you are struggling to find something to be grateful for right now besides quality time with yourself and/or family, take just a moment and consider something seriously.
Not so long ago, there was no Internet. Let that sink in. Then remember that at that time, our phones only dialed, and some of them took a very poor pictures. They were just starting to allow text messaging using keypads to spell out letters.
Think about how different all of this could be without the technological advances we have made. No ability to do remote education. No ability to do remote medical appointments. No ability to work from home. And waiting patiently for the news at certain times of the day, or in the mail. Or the newspaper. Only getting a phone call if you wanted to know anything immediately. ￼Do you feel grateful for anything now?
PS If you have ever criticized a person who is chronically ill because they spend a lot of time on social media, consider how much time you’re spending on it, and why.
Does it keep you from feeling isolated? Do you feel connected to others and less alone, especially communicating with people like you, with the same unique challenges at bt his time… be they jobs that force you to be exposed, kids at home with no child care, lowered immunities, separation from your children and custody issues considering one immunocompromsied parent, people separated from loved ones in nursing homes and hospice & worried they may not see them alive again, people fighting to keep their sanity if they are not used to spending many days with young children at home or with their spouses, children in abusive homes that are not getting a break for childcare or school, whose parents are stressed out and taking it out on them, so many many different challenges…
Be thankful for our ability to be in community as much as we can these days, and remember to take breaks and be present, especially if you are with family you don’t normally get to spend this much time with. The Internet will still be here. And a godsend for many of us. But please remember how much you are depending on it during this time and think about why. Remember the same thing applies to people who cannot work and feel isolated at home. Now do you understand? If people understand at least one thing about disabled and chronically ill or terminal people, it will be one positive we can take from this. Just a little bit more understanding and compassion in the world. ❤️
This is an interesting read. It’s OK to have a sense of humor about stuff even when the stuff is serious. And it’s OK if you are healthy and don’t need to worry about COVID even if you get it. However, please do not shame the people who are actually at risk of severe illness and/or death for being concerned, sharing real information, or taking steps you may consider unnecessary to protect themselves.
If you ARE one of those people, pay attention every time you are assured that most of the community is safe. You will never hear it without a disclaimer such as the word “most,” “healthy,” “young,” “normal…” to account for the small part of the population that DOES NOT fit that category and DOES need to worry, and may need to follow different instructions than what is provided for the general public by the CDC.
If you have a specialist such as a pulmonologist or a rheumatologist, you are probably at risk and should talk to them to confirm your risk level and ask how to protect yourself. If you are elderly, you are probably at risk. If you are immunocompromised you are at risk. If you have respiratory disease of any kind, including asthma, you are at risk. Several people in my asthma group are in the hospital. That’s just the group with asthma and not the group with autoimmune vasculitis, where asthma is only a small part of our daily lives and disease.
If you are at risk you know who you are, and you were already at risk prior to this outbreak. More than likely you already have worn a mask to protect yourself in the past. More than likely you have already reacted out of the ordinary when someone coughed near you or even spoke with a raspy voice. Those of you who are not us have seen us react this way. On any given day.
Most of us already had plenty of hand sanitizer at home that we use already, along with washing our hands. We already had extra vitamin C, and some of even had masks and gloves a year ago, before any mention of this virus. And we have used them already just dealing with every day life and things that are not offensive to the general public, but can shock our systems into a hospital or death.
If you are immunocompromised, or otherwise at risk, and you are not taking this seriously, read this article. I am posting Memes and I am laughing because panicking isn’t going to help. But make no mistake: I don’t think this is a joke and people at risk need to protect themselves. I have six family members who are doctors. I’ve seen and posted a pic of one in a full protective suit with helpful medical advice for EM/EMS folks. I am worried about those family members. Even the ones I’m not close to.
You cannot count on otherwise healthy people to keep from spreading it, nor do I think they really can even if they try. So it is everyone’s job to protect themselves according to whatever their risk level is, and to educate yourselves about what to do both now, and in the event you begin to show symptoms.
￼You cannot count on otherwise healthy people to keep from spreading it, nor do I think they really can even if they try. So it is everyone’s job to protect themselves according to whatever their risk level is, and to educate yourselves about what to do both now, and in the event you begin to show symptoms.
If you are lucky enough to be safe, maybe consider offering to lend a hand to those who aren’t so lucky, instead of laughing at them, like my neighbor did within 2 hours of a sign being posted on my door that I wouldn’t be answering and to leave items at the door or call me.
It’s just a thought. Remember that in an instant your life can change and you, your child, your parents, your sibling, your spouse or your best friend can become ill with no warning and suddenly be part of the “at risk” group. Treat everyone you see worried as if they or their loved ones are one of these people. Because to somebody, they are.
So we are at the beginning of what has been officially declared by the world health organization (WHO), a pandemic. The novel coronavirus, nicknamed COVID-19, began in Wuhan, China, initially contracted from bats if my understanding is correct, and spread to various countries, with Italy appearing most affected, and finally reaching the United States.
It began in Washington and then spread to the expected states: New York, California, and now Florida. In Florida it began in Tampa, two hours from me, and then in the southern part of the state, especially Broward County. Yesterday it reached Seminole county, the county I lived in for the first half of my life in Florida and where my mother and in-laws still live.
People have gone insane. The general public should not be alarmed, because even if they get it, they are expected to recover and should not experience anything worse than a flu feeling. However, people who are immunocompromised, elderly, in poor health, or dealing with some other underlying condition or risk, have a lot to be concerned about.
Instead, most of the general public has gone out and purchased all of the face masks, hand sanitizer, and most of the toilet paper, cleaning supplies and many other things such as non-perishable food and water they could find. The other half of the general public is standing with your arms crossed shaking their heads and laughing at the people protecting themselves.
First it was that it wasn’t in the United States. Then it was that it wasn’t in Florida. Then it was that it wasn’t in Central Florida. Now it’s that it isn’t in orange county, and then it will probably be that it’s not in the city, and then that it’s not in the school. It is a little bit funny to watch the rationale change.
The fact of the matter is the virus can live from 2 to 9 hours on plastic, metal, or wood. In my opinion, which is a non-professional opinion, it is pretty much impossible to contain. Even if you were to wear a mask and gloves to a grocery store, if you didn’t disinfect the container of every item you brought home, you could have brought the virus home. Our cell phones are constantly exposed even when we were a mask and if we don’t disinfect our cell phones, we may as well not wear a mask.
I believe people like myself who are at risk are now in a position where it is incumbent on us to protect ourselves. I am making the choice to self quarantine except for medical trips, and for the time being, to my daughter’s school. I should not be taking that risk, but it is a difficult choice to make.
I am also having to ask my adult daughter and her fiancé not to come visit anymore and indefinitely because she works at a theme park and without wearing even a mask, can’t take the risk of her being a carrier and can’t expect her to stop working or protect herself as if she were me when she is young and healthy and it is her sole source of income.
I am hoping this will peter out similarly to when the flu season comes to an end. That would buy us the time for a vaccine to possibly be created before it re-surfaced. That is my hope. In the meantime, I don’t have any choice but to protect myself as much as possible. So that is what I’m doing.
I was recently speaking with a friend, and she apologized for not having responded sooner, when she is dealing with a terminal illness as a young mother. Because I watched my first husband go through a terminal illness, and I am now suffering from a chronic illness that could become terminal at any moment, I understand this better than most.
I told her not to ever apologize to me again, because I know if she is not answering she is busy or resting like she should be, and she should not have to apologize for that. I realized that I do the same thing. Most of us do the same thing. If I’m using any walking assistance or a wheelchair, I apologize for taking too long to get in an elevator. I apologize when I have to take the stairs slowly and someone is behind me if I can’t let them pass. I apologize if I have to interrupt something to stop and take a medication. I apologize for having too many bags and a heavy purse, even if half of it is medication or medical equipment. ￼I apologize because of my symptoms.
Apologies are supposed to be made when you have done something wrong, and you want to make it right. We have not done anything wrong. We did not choose to get sick. We don’t choose all of the baggage that comes with it. Yet, we are always apologizing for it. Even to the medical professionals, whose jobs are literally to help us because we are sick.
This is not limited to people who are dealing with illness. It is also commonly done by women. From an early age, we learn to apologize for no reason at all. This is something I was already familiar with because of studying gender stereotypes. I was looking for a Pantene hair commercial, “Labels Against Women,” from a few years ago that was an amazing way to show how this happens in life.
While looking for that one, I stumbled across another one, which was timed nicely and turned out to be about women NOT apologizing. “Sorry, not sorry.” It was great! As a female attorney working in a male-dominated field, I had to deal with quite a bit of discrimination, along with learning many behaviors men and women engage in, sometimes intentionally and sometimes not, that tend to make women submissive to men.
For example, when women walk down the hall and make eye contact with men, most of the time, they look down immediately thereafter. If they don’t, they have usually trained themselves not to. Men don’t do this. I often had to assert myself when I first met male attorneys, ￼including clarifying my name, and that it was not “Honey” or “Sweetie.” Once I established that I was not intimidated by them, I usually had a good relationship with them going forward.
It’s time for women to start becoming aware of how often they apologize. It’s time for people who are ill to stop apologizing. What are you apologizing for? Did you do something wrong? If you didn’t, cut out the, “I’m sorry.￼” Your voice and your existence in the world is equal to everyone else’s. Don’t apologize for that… Embrace it!
Every November many of us spend the month posting or blogging daily about people and things we are grateful for. It’s always a cathartic experience. It makes other people feel good, and it makes us feel good to see that we made them feel appreciated and seen.
But this year, something guided me to try something different. I don’t know where it came from. But I do believe I was meant to receive the message. Because I needed it. And if I need it, I know there are other people who need it as well.
Here’s the idea. A gratitude list to yourself. I know. It sounds conceited. But it isn’t.
Most of us are often quick to compliment other people, lift them up, help them remember who they are. But most of us are not so good at doing that for ourselves. Like they say, we are our own worst critics.
The truth is that we judge ourselves. Harshly. It’s not often that we give ourselves credit for what we do well in life. And if we do, we usually feel like we are bragging. But it’s usually most evident when someone stops to give us a compliment that is really heartfelt, and it brings tears to our eyes. That happens because whatever it is is something that is not usually acknowledged by us, or anyone. At least not aloud. It makes us see a side of ourselves that we don’t usually pay attention to. A good one. A critically important one.
So I’m just asking you to try it. November has 30 days. Make a list of 30 things you truly appreciate and respect about yourself. If you’re having trouble, ask your child or a close friend if they can tell you one thing THEY appreciate about you. Only one! And you can’t use that one because that’s cheating. ￼Start trying to see yourself through your children’s eyes. Through your best friend’s eyes. Through your parents’ eyes.￼ Through the eyes of your pets!
And then try seeing it for yourself. You will be floored at how much good you actually do in the world, whether it’s good for yourself, good for your children, good for your family and friends, or good for strangers. You will undoubtedly find something about yourself that you never even considered was amazing about you.
My friends, this is a gratitude list you should keep. Frame it. Put it on your wall for the bad days. Because it’s all too easy to see the bad. Seeing the good is hard. But without it, we spiral into depression, low self-esteem, and we forget the good parts of ourselves. The reasons we’re still alive. I always say as long as we are drawing breath, our purpose on this life is not over and there is still work for us to do. When our work is done, our lives will be over.
If you’re reading this, you are alive. You are doing good in the world. What is it?