Sunshine and Shit

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

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

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.”

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

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.

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! 🙏🏽🌎🙏🏽


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

Drug deliveries (and a plea for hope) through COVID-19

I’ve never been so happy to see drugs in all my life! Sam’s Club Pharmacy (one of the best pharmacies I’ve ever dealt with, for two decades and counting now, even in different locations with different pharmacists) delivers now. I also know CVS is doing the same. Check with your pharmacy if you need this service.

On the table from my most recent “drug deal,” still in my decontamination zone:

Xyzal (or levocetrizine), an antihistamine);

Zyflo (previously not covered by my insurance, and with a $600 price tag per month, which makes this an $1,800 delivery for that one alone) for asthma;

Prednisone 🤮 (Satan’s TicTac’s, a necessary evil);

Nasal sprays (one anti-histamine spray and one for post nasal drip to try to avoid sinus infections becoming respiratory infections); and most coveted right now…

Xopenex (levalbuterol) because Albuterol is in short supply as it is being used for Covid patients, but would be catastrophic to many people like me if I didn’t have it, so I’m grateful that albuterol stopped working for me years ago, and I was moved to levalbuterol (xopenex), which is just a slightly different formulation from albuterol, but enough that it works for people in a different way and people who can’t use albuterol for some reason can often tolerate Xopenex.

I’m almost thankful for everything that has happened in the last few years, because as much as of a nightmare as it’s been, it has caused me to be prepared for this nightmare we are experiencing in ways I never could’ve imagined being prepared. All the way down to having changed to an unusual drug just at the right time when many asthma sufferers are about to go through hell and die…. because they can’t get their inhalers… because there aren’t any left or they’re being saved for Covid patients.

If you depend on albuterol, refill it immediately if you can, because you may not be able to do so when you need to. However, if you do OK without it, or one inhaler lasts you a long time, please don’t TP the inhalers!

(I know of one mom of two boys who already passed from asthma during all of this. Wasn’t even a personal friend, but it still broke my heart because someone I care about was very close to her and her family, including her kid who was best friends with one of her kids, has been devastated by it. And it happens to be someone who does an astronomically big dose of good in the world, and carries a lot of grief and hard emotions for other people. The last person I would have wished grief like this on.)

Don’t play around. Don’t take chances. If you are feeling ill, get tested. If you are struggling to breathe, go to the hospital. Don’t shrug it off. As one doctor connected to me said, this is a very unfair and undiscriminating virus. There is no rhyme or reason as to who does well and who doesn’t. The mom who passed was young and healthy, but an elderly friend with many underlying issues survived a 7 day hospital stay. I’m grateful my friend survived. But it just goes to show there is absolutely no telling who this will become catastrophic for. Fill your meds. Take care of your health. Try to avoid situations that cause asthma, that exacerbate hypertension, nip it in the bud if you have early signs of an infection.

And do all of the things. It’s not a joke. It’s not funny. It’s not political. If you play this game like politics, you may as well be going to a casino with the chances you are taking. Or going to your governor or senator for them to administer medical treatment when you get sick. Definitely don’t go to your doctor, if you’ve been slapping your doctor in the face by saying, “Let’s open the world,” with every true medical expert saying that doing so it’s going to create exactly what we avoided, ultimately overcrowding the hospitals where physicians and hospital staff are already depleted and struggling, physically, emotionally, psychologically, and every other way possible. Still without enough PPE. I have witnessed it myself, I have seen other people witness it, and I have delivered some of my own supplies to help. The medical community is struggling in ways you couldn’t even imagine.

  • Social distance. And for the love of all things holy, don’t post pictures of yourself out in public without a mask. Many people are losing all respect for you, many who will never tell you so directly.
  • Wash your hands excessively. For a minimum of 20 seconds. Look up the correct way to wash them, the same way doctors wash theirs. (i’ve also been told by people in the medical community that people are always shocked in medical school when they learn how much bacteria remains on their hands when they don’t wash correctly or for the right amount of time. Trust that without this medical school “hands on” lesson, your results are the same. Use soap that foams.
  • Use sanitizer if you can get some, when you can’t wash your hands. But wash your hands when it’s available as an option.
  • Cough or sneeze into your elbow.
  • Stay home if you can. Do the best you can if you can’t.
  • If you have disinfectant, use it. Often. Decontaminate your mail and packages. Especially prescriptions that have been touched by pharmacists who have had contact with a lot of sick people. It seems ridiculous, but do it. Even with all of these measures, I got sick.

The information is out there. Everyone has heard the information. It’s your choice whether you protect yourself or not. It SHOULD not be your choice whether you risk other peoples lives, but unfortunately, it is.

If you are one of these people, please know that I have zero respect for you, and more sadly, I have ABSOLUTELY ZERO trust in you to care about me, and don’t believe your “thoughts and prayers” for one minute when I post that I might have the virus. Because your actions show otherwise.

Even if I care about you. I do not respect you. I do not trust you. And I don’t really even care about your thoughts and prayers. Sometimes the truth hurts, and unfortunately, the world has created a situation where my filter has been removed.

For those of you following all of the recommendations, and most especially if you are not even in a high-risk category and are still doing it, know that I see you! I have cried watching you learn to sew a mask, or even rigging one out of whatever you have in a sincere effort, teaching your children to sneeze into their arms, teaching your children to wear a mask, social distancing and staying home…. because it shows you care about others more than yourself. It is unselfish and the greatest act of love I have ever seen. This too, must be shared and acknowledged. ♥️

Stay safe, people! 🙏🏽🌎🙏🏽