Category Archives: Uncategorized

To Open or Not to Open…

What does that thing say again?

“We, the [Parties], of the United States, in Order to form a more perfect Union, establish Justice, insure domestic tranquility, provide for the common defence, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.”

The Constitution for the United States of America

What? Is that not what it says? Wait… It’s “We the PEOPLE,” not “We the PARTIES”?! 🧐

We live in times where nothing can be discussed or decided without making every issue a blue or red issue. Left or right issue. Rich or poor issue. Have or have not issue. Privilege or discrimination issue.

It should be no surprise to anyone that there is a debate about opening the states back up, and different states are going at different paces, with a definite leftist/blue identity leaning towards staying closed, and the rightist/red identity leaning towards reopening.

I have been exhausted by political parties for years, and I left mine to become independent for that reason. This pandemic and the reaction to it has been all of the evidence I need to know I did the right thing. Until people stop looking at this as a political issue, and start listening to the people with medical degrees, since we are discussing a medical issue, it’s like we are in kindergarten and we are being taught to read by being given numbers.

Information/Transparency

The medical opinions should be provided. And they should be provided independently of any concern about the financial well-being of the country. Working from that, the government needs to do whatever it needs to do in order to try to manage the financial devastation. The fact that there is financial devastation does not change the medical facts.

Here, in America, that’s not how it works. Instead, we remove medical professionals from meetings, remove them from their jobs, remove them from public sight and earshot, while everybody screams and cries and stomps their feet at the other side making wild accusations, usually directed at a political official from a different party.

The struggle is real… For everyone.

It really seems like there’s only one way to resolve everything when it comes to reopening. Here’s what we have.

Some people think it’s time to re-open and some people don’t. Those who think it’s time to reopen fear for the collapse of the economy. And for the losses of their income, homes, and life’s work/careers. Some worry about mental health issues, and that being quarantined for too long it’s going to result in increased suicides. I can’t argue that fact. These are valid concerns. I’ve seen some measures put into place to help for people who need help due to depression and anxiety caused by this.

Asking people to stay home to protect everyone else, especially elderly and immunocompromised people, poses a very real risk of financial ruin, depression and suicidal inclinations for some people.

But asking elderly and immunocompromised people to go back to work too early, poses a very real risk of death or permanent disability.

Those who don’t want to return yet fear for their lives, and the lives of their children, their loved ones, and even people they don’t know. If they are forced to return to work, they return to an environment where we have seen report after report after report of people who simply don’t tell people they are sick because they don’t want to be quarantined. We take the biggest risk we’ve ever taken, and some of us will lose that battle, and each time, another family will grieve someone before they should’ve had to. That’s not a small ask.

So is there a viable solution? I think I know of one.

Why can’t we do both? (Test Run)

It doesn’t appear science is going to answer the question. But maybe we’re just not applying science in the right way. Some people are very hands-on. Maybe it’s time to let them try a lab experiment. Some people are very hands-on. Maybe it’s time to let them try a lab experiment.

So let’s try it. By volunteer basis only, everyone who has complained about staying home because they need money, and don’t believe in socialism, (at least at times like this, when it is necessary to implement some socialist concepts,) should volunteer to return to work on a temporary basis.

Those who choose not to, should continue to be allowed to stay home while we try this experiment out. There are many jobs to be had, because as long as a significant portion of people are remaining at home, there are delivery services galore, and lots of services being used in order to work from home. Just like there are child care services being provided for children of essential workers, people who are against staying closed can take their children to childcare centers run by other people who are against staying closed.

That can be our test run. It doesn’t require anyone who is not willing to be at risk to put themselves at risk, but also doesn’t require people who don’t believe there’s anything to fear to stay home. They can go live their lives the way they would if everyone had returned. They should feel safe, because I’m sure there are no people who will ignore the regulations and recommendations.

Reevaluate

Then evaluate the situation after a month. After a bunch of people have re-joined the workforce. see what the numbers look like. This is mid May. If we find out by mid June what happens if we open up right now, we find out on a smaller scale, and only those who chose to go back are risking anything. Nobody is required to risk their lives to find out if it’s safe. Only those who choose to be out there.

If it proves safe, the rest of us can re-join society with those assurances and feel better about it. Maybe provide one more stimulus check for this month, and those who choose to go to work and be our test cases get the check as well, so they get a bonus for being a test case. Meanwhile, nobody who has to stay home because of their health, age or other risk, goes without basics.

If it proves not to be safe, whether it’s because the virus is too strong and we just moved too quickly too early, or whether it would be safe, but for people who refuse to wear the masks and follow the rules, and even play games by licking bottles of sanitizer or purposely coughing on people, then we scale back, but hopefully this would mean we could do so before the potential disasters, such as overwhelming hospitals, becomes too high.

If we have the space now, to handle an increase, this would allow us to test that theory, but on a smaller scale than if everybody went back all at once. If we moved to early, hopefully with part of us still not going out, we could still handle the influx of new cases. But having part of us stay home will keep it from becoming the disaster it could be if everybody goes back all at once.

This could also potentially save the lives of people who are at increased risk, who might be otherwise required to return to work or lose their jobs, by giving them a few more weeks to find out what happens, and to feel safer about returning to work if it all goes well.

We can’t have a draw.

My instincts tell me this will never happen. Because somebody has to win. There has to be a clear winner and loser. We will continue scratching each other’s eyes out until there was finally a date declared when everyone can go back to work. The date will be too late in the minds of many, and too early in the minds of others.

For the sake of every person living in America, I pray whatever date that is proves to be the right one. That we find out the measures we have taken have been effective, and we never reached that terrifying point we were worried about, where hospitals reach maximum capacity. I pray they are right.

I also pray for everyone who is in a high-risk category, and dreading the idea of going back to work before you believe it’s safe. I have been in the position of having to choose not to work because of health issues. It was a nightmare. I have the scars to prove it. But I also know that it doesn’t matter if you have a job, a home, a car, and food… if you’re dead.

Is that a whistle I hear out there somewhere?

“May the odds be ever in your favor.”

Sunshine and Shit

Perspective…

Today was an adventure. Somebody met me through a mutual friend on Facebook, and began talking to me, after looking at my Mother’s Day cover photo that had five generations in it. I was holding my baby in the picture, and that baby is now 21 years old. Which tells you how old the picture is. It very clearly said Mother’s Day. I thought it was obvious.

But as we were talking, I noticed questions that I knew were headed in the direction he was not likely intending with who he thought he was. Then he said our favorite words ever, which was unexpected coming from someone who was the son of a doctor, and I met literally through one of his dad’s patients, from the office where he worked. (It’s unusual for someone in the medical field to still not know not to say something like this. But then again, I am reminded that doctors have said it to me, too.) Incidentally, the mutual friend was my daughter’s fourth grade teacher. I had already said she had turned 21. He was not doing the math. 

I finally decided to let him off the hook easily and asked if by any chance he was looking at my cover photo, because that was the reason I didn’t look sick. I wasn’t. Because that was 20 years ago. Indeed, that’s what he was looking at. “Surprise! You catfished yourself!” I told him to look back a few pictures for the other half of me, and that he didn’t have to worry about trying to reel it back in, because I don’t date. 

We still had a pretty interesting conversation. He’s a really nice guy. I hope he finds what he’s looking for, and maybe we will end up with a great friendship out of it. We continued chatting for a bit, and he got to hear some of my other shocking and amusing life stories. And then I reminded him to just take care of his own health, because when you lose your health, you lose everything. 

He said I had a really good attitude about things. And I reminded him that I really didn’t have a choice. My life has had so many loops in this roller coaster ride, that the only way to survive it is with a sincerely huge and sometimes inappropriate sense of humor. And Xanax. And medical marijuana. OK, so maybe I’m not that great at it after all. But I know how to fake it well. 

I sort of ended the conversation with a little bit of a metaphor that I didn’t realize at the time made perfect sense. I said life is full of sunshine and shit. You can’t have one without the other. I wasn’t even thinking about the connection between fertilizer and sunshine. But if that isn’t the perfect description of life, I don’t know what is. 

Those of us going through the medical journey that leaves us with either a high probability of immediate/sudden death, or a promise of guaranteed imminent death (terminal), understand that if we hadn’t lost everything we’ve lost, we wouldn’t know how to appreciate what we have left. Everything we value has more value now than it ever did before. Every hug, every good day, every good morning, every lock of hair, every walk to the mailbox, and every school event with our kids… means 1000 times more than it did before this journey.

I’m sure all of us would trade it for the lives we had before, but we probably never would have appreciated a single minute of it the same way we appreciate every single minute now. And that, in itself, is something to be grateful for. Some people will never get to experience the magic of really LIVING in a moment with such fierce intensity. We are determined to suck every drop of life we can out of what we are given.

And that, my friends, is how you turn shit into sunshine.

Mask Fail #3

“You can’t make me! I doth protest!” 😂

I’m doing this in Star Wars order. In other words, I’m starting at number three and I have no idea where I’ll go from here. I know I have at least two mask fail stories I could share. Maybe three. But we’ll call this number three. In honor of yesterday being Star Wars day.

Not long ago, they delivered about the fourth notice to the apartment complex residents advising about all the measures they were taking to keep us safe, including using PPE.

However, when I went to check the mail, just after the notice was delivered, I noticed the employee in the golf cart was sitting in front of me without a mask, as a resident, also not wearing a mask, was leaning into the golf cart talking to him. No effort to social distance at all. I didn’t say anything right away.

I rolled my eyes at everybody I saw out without one. And I was very pleased when I saw people wearing one. Until I drove past the same guy and saw him laughing at two gentlemen wearing masks and walking about 7 feet apart. If I hadn’t been afraid of the fact that he wasn’t wearing a mask, I would’ve rolled the window down and handed him his rear end on a platter. But there was no way my window was coming down anywhere close to him.

This time I didn’t let it go. I wrote the apartment complex an email and asked that they please not deliver any more notices to me about how they are taking everything so seriously if they are not going to wear a mask or gloves on delivering said notice to my door, and possibly delivering the virus with it. Especially while I am sitting here two weeks in with a fever I still can’t get rid of.

They apologized and said they had just received their masks, thanked me for offering to donate some if they needed them, and said they would be wearing them from now on.

I thanked them, and true to their word, I have seen them all wearing a mask ever since that day. However, that little man is definitely not a fan of them. I had previously seen other employees wearing one sporadically. But never him. And never social distancing for him.

I almost lost it today when I drove past him and saw the way he had the mask on. Clearly, he is irate about having to wear it. He was literally at the dumpster, where people would usually appreciate wearing one even if there was no virus. But he had it on his forehead instead of over his mouth and nose.

I’m not going to lie. I started laughing so hard I couldn’t even be mad. Maybe later it will be less funny, or if I keep seeing it, I will comment again. I don’t want to become the pariah of the neighborhood. But I definitely thought you all might get a laugh out of it. I suspect we will see more and more covidiots circulating as the states reopen prematurely. Get ready to laugh. A whole new series of Memes is about to emerge. In the meantime, enjoy the angry little old man that doesn’t want to wear his mask.

This New Dance

My newest bruise, which I attribute to prednisone: my FWS: Friend with Sideefucks*
[*Stole that term from someone. But it fits!]

The ways life has changed aren’t many to some of us. I’m sure you’ve heard it before. “Welcome to our everyday reality.” But nobody is immune from SOME changes and surprise issues.

In the last two days I have discovered one of them. In the past, if I fell and injured myself, I could take medication for it. Not a big deal. However, I wouldn’t have even known I had a fever if my daughter hadn’t also been sick with me this past month. When she got sick, I decided not to take my cough syrup because it has Tylenol and might be masking a fever. I had a nightmare that night that involved not being able to breathe and not being able to get up out of bed. My daughter heard me and almost woke me up thinking I might be having a nightmare but she was worried I would get upset that she woke me up. I will have to explore that. But I did wake up with a fever, higher than hers. And off we went for testing.

We tested negative. I was very grateful. Until my appointment with my pulmonologist, during which he expressed concern that I still have a fever after over a week, and on antibiotics. He said 20% of the negative tests are coming back as false negatives. Fantastic. It seemed he wanted me to go test again, but since I was on antibiotics, he told me to wait until I finished and if I still had a fever, then go and test again. And of course if I have trouble breathing more than usual, straight to his hospital.

I’m wondering if they are treating me as if I am positive, because I’ve never been prescribed azithromycin at the full first day dose, for 21 days. Not a big deal. That’s also something I’m used to. I’ve been through eight rounds of antibiotics to try to get rid of one infection. Taking an extra round or taking them for longer than normal is not that weird.

But 2 evenings ago, I fell. I didn’t trip. I just stood up to walk and my leg didn’t work right. It was like it just folded on top of itself. And I folded on top of it.

I almost broke my leg. My entire leg is very painful, and my knee is aching badly if I put any pressure on it. I’ve got a nice big bruise on the inner side of my leg that I don’t even understand how it landed there, and I’m almost certain I broke my little toe, which is buddy taped to the one next to it, because I would rather give up my toe than go into a hospital or a clinic, especially knowing they probably won’t do anything more than tape it to the other one themselves. So, no way will I take that risk on catching the virus if I don’t have it, or giving it to other people if I do.

But now I have a new conundrum. I have medicine I can take for pain. I’ve been really lucky to not need it as much lately, in part due to prescribed medical marijuana; but after this fall, I certainly need it. Here’s the problem. I’m trying to monitor my fever. The hydrocodone syrup has Tylenol in it. This means I have to wait for it to completely stop working and I’m in full blown pain again to know the Tylenol is no longer affecting me, so I can take my temperature and discover I still have a fever. Every. Damn. Time.

In the grand scheme of things, I know I’m lucky. People are in much worse positions than mine. I pray for them every single day. So I know it’s not that big of a deal. I’m grateful I did not actually break my leg. That would’ve been holy hell at a clinic or an emergency room, with a fever, and only being allowed to be seen by people in what my friend so appropriately described as “space suits.” http://nohalfmeasures.blog/2020/04/01/medical-treatment-during-a-pandemic-part-i/

But it’s annoying. I don’t understand why the fever is not going away. I can’t imagine I have the virus with underlying vasculitis (Churg Strauss Syndrome/EGPA), general hypertension, (sometimes rising to the level of pulmonary hypertension), pre-diabetes, severe allergies, severe asthma with refractory bronchospasms, and constant tachycardia. It seems like I would be the first person to end up in the worst case scenario. This is why I’ve been so proactive from day one when I heard about this becoming an issue. This is why my daughter laughs at the measures I take to keep us safe. This is also why I’m baffled that we were able to get any kind of flu or virus, because however we got it, we could have just as easily contracted COVID-19.

I have confirmed I still have a fever. Fabulous. At least now I can take some medicine to calm down my leg. And go back to sleep. Which is all I’ve done for approximately the last 36 hours. When will this get better? I know it’s not going to end. But it has to get better eventually. Right?

The Thing We Don’t Want to Do

Living wills/advance directives, among other things.

I’m going to say something people don’t want to hear, and want to do even less, myself included. But if you don’t have one, and even if you do, you should create or review a living will and/or an advance directive, assign a health surrogate, make sure they know who they are and what your wishes are, and of course do a last will and testament.

It’s not fun to do. But think of it as the greatest gift to your family. There is so much evidence of the nightmares that can happen to families when they fight over the last wishes or the property of loved ones who have passed. Having something in place that makes it clear what you want also takes the burden off of whoever you put down as a health surrogate, so that they are not having to make the decision, but rather, they know they are doing what you want and they are just making sure it happens for you.

If there has ever been a time more appropriate to do this, it’s now. You don’t have anything better to do, most likely. If you do have something better to do, it means you’re more at risk because you’re probably going to work. In which case it’s twice as important that you do this. If you have life insurance, make sure somebody knows it exists and where to get it. If you want someone in your family or anyone else to have access to social media or anything else, I would recommend making sure there is access to passwords somewhere that can be provided upon your death.*

This is one of those things you hope never to need, but if you need it, it will be a godsend to the people who benefit from it. kind of like vehicle insurance. You hope never to need it, but you always want to have it just in case. And if you end up needing it, you are grateful you had it.

Just my thought for the day. Clearly a rainbows and sunshine kind of day. 😂

But seriously folks, just take a day out, think about what your wishes would be, and do it. Look up a list of important things to consider in an advance directive. And I really don’t recommend assigning a health care surrogate without an advance directive. That seems so unfair to me. It’s a lot to put on someone. and remember that if you have an assigned a health care surrogate, somebody will still be assigned that job for you, and without an advance directive, unless they already know what you want, you are still leaving that burden on them.

Just do it. And then be happy that when your time comes people will be able to focus on themselves and getting through and not having to worry about petty arguments. And trust me, there is one in every family.

*One idea is to put your passwords into an app, and if you have a trusted friend, especially who doesn’t live in the state, give that trusted friend the password to your phone/computer, and that specific app, and have them contact your loved one upon your death to give them these passwords. They can then use them to access all of the other passwords. This will save a lot of headaches.

There is also a legacy option on Facebook, so that upon your death someone can take control of your account, but then it becomes a memory page and I’m not sure for how long. I don’t like that, so I just keep the password in my app so someone can go into mine and let people such as my support groups know. There are people I value greatly, that nobody in my life would know to contact if something happened. This is the age of the Internet. We have many circles. These were was just a couple of ideas. Explore others. Do what’s best for you. But do something. Because doing nothing is also a choice, and it is one that comes at a great cost to the family you leave behind.

Social distancing Fail, Episode 2.

It’s low, but enough that my doctor didn’t allow me to come in for an “in person” appointment.

I have a fever. I have been sick for a little over a week, along with my daughter. We had to do the Covid test, but Thankfully, it came back negative. However, I still have a fever, and my pulmonologist said I shouldn’t, and that 20% of the negative tests are actually false negatives. So after I finish this next round of antibiotics, if I still have a fever, he wants me to retest. So I think I’m fine, but I’m not entirely out of the woods. Whether or not I have the virus, I have something, which we have assumed is some type of flu.

I went to check the mail, which I have to do since my medications come that way, and I wore my mask. I didn’t wear gloves because gloves are even less helpful than a mask depending on how they are used. Once I touch anything outside of my car with them, including the mail, the gloves are potentially infected. I can’t touch anything until I get them off, and then I will still have to mail, and still have to go through the doffing procedure before touching my face, or anything else.

I was starting to get the mail as another car drove up, and I was reminded of the incident at the bank. At the bank I didn’t put in my card because I predicted accurately that the idiot behind me would not follow directions, so I moved to the waiting area myself and let him go first. I decided to give this guy the benefit of the doubt. I was mistaken.

He got out of his car as I was nervously trying to pull my mail out as quickly as possible so I could get in the car just in case he walked up next to me and not to the other end of the mail box section, which is where I hoped he was going since he was getting out of the car. He was not. He was going to the very next section, 3 feet away from me.

To his credit, he was wearing a mask. But I was still upset that he was standing so close to me. I decided to tell him, “Just so you know, I have a fever.” He said, “Oh, thank you for telling me, because I have a lung condition.” (Facepalm)

I said, “So do I,” and we parted ways.

But that’s not what I was thinking. What I was thinking, but not saying aloud, was the following:

“You, sir, are a complete moron. You are wearing a mask to protect yourself (and/or others), because you have an underlying lung condition, which makes you highly at risk. If you know that, why in the name of all things holy, would you walk up to somebody else wearing a mask three feet away? Why? Why not just wait a whole 60 seconds or so, for others to get their mail without exposing themselves to you, or being involuntarily exposed to you

He got into his car and drove away, and I got into mine and just shook my head.

Guys, this is not poker. You can’t just check or raise. You have to be ALL IN. Otherwise, I don’t see why you even bother taking any other precautions. It’s like walking around a body of water that you know has an electrical current in it, and deciding to stick your toe in it for just a minute. All of the steps you take AROUND the water are not going to help if you stick your toe in it, even once.

Please, if you are going to engage in safe practices, be all in. Get it right. This is one of those things for which you simply CANNOT cut corners.

Stay safe, people! 🙏🏽🌎🙏🏽

Telemedicine

Our new normal: Central Florida Pulmonary Group engaging in telemedicine.

Today I am grateful for technology and doctors, More so than usual! I was not looking forward to going into my pulmonology office today, especially after taking the steps we took to obtain and administer my own Nucala with auto injectors. However, when they confirmed the appointment, I didn’t realize I would wake up today still running a low-grade fever. Very low grade, but apparently enough that they would not have been able to see me in the office.

I spoke with somebody who was able to confirm they could change my appointment to telehealth. Although pulmonology is a difficult area to practice by telehealth, since a significant part of it is listening to your lungs, this is absolutely fine for me! Being a chronically ill patient, I have a lot of experience with, and am pretty good at, accurately understanding what my lungs sound like based on how I feel.

The last person on earth I want to get sick right now is my pulmonologist. I’m so grateful for technology throughout this entire ordeal. (My general practitioner called in antibiotics, since I still had a fever after an entire week. I don’t know why I still have one. My daughter and I were both sick at the same time, and her fever went away entirely yesterday. Mine, however, seems to continue to hold steady at 99.4.

I called the office to confirm their procedures and to advise about the fever, which I’m glad I did because they said that was high enough that they would not have been able to see me in the office. They changed my appointment to telehealth.

That said, I was impressed by the procedure they had in place for the appointment before I realized I STILL have a fever, and finding out they were willing to change it to telehealth.

To check in for this office appointment, you call a certain number/line they give you, and you wait in your car until a room is ready for you, so that you go straight to a room without coming into contact with other patients. It’s not 100% fool proof, of course, but nothing really can be, other than what they are doing via telephone. I haven’t seen any other office do this vehicle waiting room thing.

(When I got the message to call a certain number upon arrival, I was wondering if they were actually going to come to the car window to do the appointment. LOL)

Two offices I have to really tip my hat to are this one, Central Florida Pulmonary Group, and Jewett Orthopaedic of Winter Park, used for the kiddo with her broken arm. At Jewett, they do a temperature check outside, they squirt sanitizer on your hands or gloves, and as soon as you enter your assigned room, they stand there while you wash your hands and then wash their own in front of you. 👏🏽

Both of these offices have put efficient and strict policies into effect to protect their physicians, staff and patients. That’s all you can hope/ask for.

I hope by sharing this, someone else will benefit from the ideas, and maybe put them into place for their own businesses or organizations.

Also, I can attend in my pajamas. 😁

#SilverLinings #PajamaDayEveryDay #Telemedicine #LivingMyBestLife