What Science!?

At this moment, my second cousin, a physician, sits on a ventilator with Covid while his 80 year old mom, brother and sister, wife and young child (along with we, the extended family) are praying he is one of the lucky ones.

Yes, he was vaccinated. No, he didn’t stop treating unvaccinated patients. That’s who he is.

I am angry. I saw an amazing post today that said, “People say they don’t believe the science, and then come to the science to heal them.” This is the result. When we lose the doctors who are giving us the science, who will be left to help the sick?

“Ironic: Hospitals are filling up with patients who don’t believe in science, but go to science to heal them!”

In South Florida this week, doctors walked out in protest of unvaccinated people. Good for them! I posted the article without knowing how close it would hit to home.

Yes, we all have rights. However those rights end when they infringe upon the rights of other people. There really is no excuse anymore. At this point, you have the information. You are simply choosing to kill people for whatever reason you are telling yourself.

I hope you can live with that. I also hope my cousin has the chance to live with it.

Lastly, if you don’t believe the science in front of you and choose not to be vaccinated for your own sake or the sake of anyone you love, just stay home and let the virus run its course so you don’t get put into the secret government conspiracy by your doctors. Don’t come to them for help later and kill them.

The Empty Chair

I hear the stories

it’s hard not to

in stalls like horses

Hooked to machines

Poisoning the poison

That’s killing us.

The people with them

Sisters, mothers, adult kids

“Lovers…” (an elderly couple)

That one made me smile.

And a few who are alone.

With them is an empty chair,

Because they don’t have someone.

But I do. Mine are not gone.

They’re just not here.

I think it’s lonelier to be alone

When you have people

Who could be here

But choose not to be

Or who make it worse when they are

Than to be alone

Because of circumstances

Beyond anyone’s control.

Sometimes I’m okay with

The empty chair.

Context Clues

Recently I went to a medical supply store to pick up a new octopus (CPAP machine). I arrived 15 minutes early. For a military family that’s on time. Admittedly, I usually fail at this. I walked up to the door from my parking space, which was pretty far away. I found the usual collage of Covid signs all over the door. But one of them stuck out. Right in the middle was a sign that said, “Please wait until your appointment time to knock.“ 🤔 Ok.

It didn’t seem so weird. Until a large man opened the door as if he was going to let me in, was very polite, and then asked what time my appointment was. When I said it was at 2o’clock, he said, “he doesn’t let people in until the time of their appointments.” With that, he closed and locked the door and that was that.

I contemplated walking back to my car, but knew that if I did, walking back I would end up needing an asthma inhaler. There was no where to sit. I walked around and noticed the sign and that the place was actually an oxygen supply store.

Really? That’s how they treat people who need supplemental oxygen to live and may be out of it? Wow. I was floored. I decided to go get my walker from the car so that I could use it to walk back and then use the seat in it to wait. Before I sat, I noticed there were two chairs just behind the window and the door in what appeared to be a reception area. Now I was irritated. The bouncer couldn’t even offer me a chair?

I started taking pictures of the chairs and the signs. Suddenly a different gentleman with a completely different demeanor came to the door, opened it, picked up my keys from the floor and asked, “are these your keys honey?” I said yes and he welcome to me in and said he would take care of me and he was so sorry.

I actually didn’t have anxiety about going here because they had already worked out the magical mess that always happens at every doctors appointment or insurance situation with the exception of a few very well run places when we were on the phone, and one of those well run places had to call there and ask what the hell was going on, which they admitted to me on the phone had made me the topic of conversation that entire morning. My machine was a month late, they had the wrong phone number, and they said they had emailed me but did not have my email address.

Then they tried to charge me under a different insurance. I told them I had already passed the catastrophic stage of my insurance and I don’t pay anything. Finally a supervisor came out and said it had been entered wrong and apologized. She said she would fix it. Guess what Mr. Sweet receptionist asked me for when he checked me in? The same co-pay. This is why I need anxiety medication to go to medical appointments of any kind.

When I started explaining their supervisor had to come out and fix it, the receptionist finally remembered and he was actually very sweet and said he knew exactly what I was talking about and would get it fixed right away, which he did. So in the end, most of the appointment went well.

I was just really shocked at how they treat patients given the context of it being an oxygen supply store. I feel very sorry for most of their clients. Especially the elderly ones trying to lug an oxygen tank from handicap spaces that are all the way at the end of the parking lot.

CONTEXT CLUES: CHAPTER TWO

I got to experience a second lesson in context clues that had nothing to do with where we were. For the most part. A gentleman came in and sat next to me who spoke Spanish. He said he was also from Puerto Rico. Then he said he was there to return all of the equipment he had with him because his wife had _______. I’m using a blank here because I’m pretty sure I heard the wrong word.

What I heard, was the following: “ mi esposa falló.” To me this sounds like a word that means “made a mistake.” However, the tone he used and the fact that he was returning all of her equipment. Not just an oxygen tank or a CPAP machine, made me wonder if the word could have another meaning. This is where the comedy that is my family comes in.

I told the man I had lost my husband at a young age. But I was very concerned about whether that would be appropriate or if I had just misunderstood and embarrassed myself. I quickly texted my mother and asked her what the word meant. My mother promptly replied with a voice message.

I texted my mother back and reminded her that I was sitting next to the man and could not listen to her message. She responded with another voice message. I was getting irritated and was asking what she did not understand about the fact that sending me a voice message is completely useless if I can’t hear it.

If I had known what she was saying, I would have known she said that the word meant his wife, “effed up.” To which I would have responded, “Ummm… I think the context here suggests otherwise. Unless he means she jumped in front of a truck by accident.”

Then he went to the reception area where they asked why he was there and he said he was returning all of the equipment. And all of his brilliance although he was very sweet, the receptionist actually asked why. The man said an English that she had passed away.

I was relieved to know I was correct, and also heartbroken for him. I was headed to Puerto Rico in about a month and he’s headed to Puerto Rico in about a week. For completely different reasons. But now I was still stuck with asking my mom with the appropriate response would be or the appropriate thing to say. It’s out of my range of Spanish. I thought.

But having received another voice message from my mother, and when I was called back, I had no choice but to say something. Or to just be rude. So I said, “Cuídate.” (Take care of yourself.)

I would later learn that there are two words in Puerto Rico that mean two entirely different things that sound very similar. “Falló” means to mess up. “Falleció,” however, means to pass away. Thank God for context clues, because the only word I had ever heard for somebody dying was, “Murió.” 

When I got into the car I tried to call my mother to ask what in the world was wrong with her that she was responding in voice messages no matter how many times I said I can’t hear them because the man is sitting next to me. SHE TEXTED BACK, “Call later.”

Me: “NOW YOU CAN TEXT!?”

And that was pretty much the end of my Friday. I won’t continue with the insurance battle that finished off the day. The insurance battles are getting too tense to even talk about.

For anybody who thinks context clues that you were taught in elementary school or not really that important, I beg to differ. Pay attention in school. You never know when it might become critical to know something you thought was irrelevant.

Vasculitis Awareness Month: Day 4

Vasculitis Awareness Month; Day 4:

I couldn’t find the picture of one of my infusions, but this seemed appropriate for May the 4th, as I was on my way to get an infusion and quite irritated, but grateful I had the best doctors who communicated via text, came out from seeing patients just to show me their notes to prove that the infusion department was not correct, and making sure I got my infusions.

Doctors like this are hard to find and I deal with my horrific insurance company for HOURS every week for the sole reason that I choose my insurance based on NOT losing the doctors who have saved my life. They listen, they want to learn and teach, they appreciate questions instead of getting annoyed… one of them even decided to admit me, but first asked me, “I know you have two girls. Do you have someone who can care for them?” I was STUNNED. He is the medical director of Advent Health’s cancer and oncology unit (Dr. Carlos Alemany), and he remembered I had two minor children, and actually cared whether I COULD stay long enough to get answers. (The bonus side note here is he went to the same college as my father for undergrad in PR! So nice to see one of our own so gifted at his work, while maintaining incredible compassion for his patients!)

Because he was who he was, he flat out told me: “I know what you have, YOU know what you have, but your rheumatologist wants a biopsy, so we are going to keep you here until we get one.” Others doctors tried to release me and I refused until it came from his mouth, and each time I said I wanted to hear directly from him or his colleagues, I was correct about what he wanted. I thank God for these doctors every day, because I was on death’s doorstep when I found them.

I saw him because he was a hematologist, but he had done the two fellowships at the Cleveland Clinic, where they study my condition, and he was one of the only doctors who had any experience or extensive knowledge about it. I saw several doctors who pretended to know, and I knew by asking only a couple of questions that they were not being sincere, and I can’t trust my life to a doctor like that. Others simply refused to see me because they weren’t sure how to treat me. I appreciated their honesty at least.

Incidentally, the other one I trusted most at that time, God bless him wherever he moved to, did NOT have any experience with it, but he did NOT lie, he listened, he learned a little bit from me and then hit the books until he knew more than I did. I trusted him with my life as a well.

He knew me so well, that when he was “off” and the answering service said not to contact him, I asked that they just let him know I was admitted and he didn’t need to call back. Would you believe that man was standing next to my bed in less than an hour? He was actually working another hospital and said he knew if I let them admit me, I must have thought I was dying, because I do NOT trust hospitals.

He left the practice and I cried for three days. It’s amazing how your doctors feel like family when your life depends on them. They see you at your absolute worst, and they reassure you when you start thinking you’re crazy, or encourage you when they see you dipping into medical overload/depression. The only thing that helped with that was being moved up to the head of pulmonology at Advent Health Hospital nearest to me (Dr. Daniel T. Layish). He is now, hands down, the most AMAZING doctor I have ever had! He has been at his office as late as 1900 taking his time answering questions, and then apologized to ME for the wait, when I would have camped in a tent to see him if I had to! (Dr. Daniel T. Layish) I could not recommend these doctors enough! Even my 12 year old knows which is which! Another who is both gifted and compassionate beyond belief!

So, after a particularly ridiculous day of struggling with a department that had to be set straight by my medical heroes, imagine my surprise when I was exhausted and over it all, and the elevator doors opened up to this on my way up! Totally changed my mood for that day! Grateful to the nurse who was kind enough to take our picture.

Don’t mess with my doctors…
They have storm troopers! 😂❤️😂

May the fourth be with you!

Vasculitis awareness month: Day 3

Vasculitis awareness month, day three:

If you read day 2, you already know I have been poked and prodded since I was old enough to remember. I still remember allergy testing with a bunch of needles when I was less than 10 years old. Nobody ever believes me that this stuff doesn’t bother me. Usually I watch. I had to hunt for a doctor who would let me see my daughter being born at least during part of my cesarean delivery, because I was still upset about being put out during my first one.

One day I was at the hospital and a doctor came in to see me in the morning. She said she had reviewed my sonogram. I can’t even remember what the sonogram was of. I said she was mistaken and that I had not yet had a sonogram. She went back to check. I was certain. She came back and again said that I had had a sonogram and she reviewed it.

If you don’t know anything about staying in hospitals, you don’t get very much sleep. They wake you up every half hour or so to check vitals, take blood, or who knows what. It’s also an environment that is not controlled by one person, such as when you’re at a doctors office. It’s many different people, changing shifts frequently. No matter how good they are, things get messed. People forget to write something down. And when you think about what doctors are doing, I will give them a pass on forgetting to write something down when they might be saving someone’s life down the hall.

This is one of the reasons I have never left family members in hospitals alone if I could help it. It’s not as much to supervise the staff as it is to be a second set of ears when people are in the room and the patient may not be able to soak all the information up, and to help out so the staff doesn’t have to stop caring for patients if I can help mine out myself. I would imagine it probably also makes it easier for patient to ask a family member for some thing than to ask a busy nurse they have to call with the red button.

Guess what? I was wrong about the sonogram. I would probably have kept insisting, until I looked at my hand and asked why there was a piece of gauze taped to it. When we took it off, this is what was underneath. Apparently, they had drawn blood in the middle of the night as well as doing a complete sonogram, without my ever having woken up. That scared the living crap out of me.

How could I have slept through this!?

Everybody has heard the stories of things getting mixed up and surgeries being performed on the wrong people or the wrong part of the body. I remember being in preop once and hearing somebody in the room next to me saying good morning to Mr. (my last name). He asked how he was doing today. I called out from my side of the curtain and said, “I don’t know how he’s doing, but I know my name is (my last name), so I’m betting his isn’t.“ (Oops, wrong file! 😳)

I do not like being put under. At some point you will hear the story of when I escaped preop before they could give me a sedative. I don’t like not knowing what’s going to happen. And I certainly don’t like not knowing that something did. Nobody told me they were going to do it overnight. The fact that somebody could stick a needle in me, and roll me into whatever position was necessary to do an entire sonogram, without my waking up… and one that was able to leave this kind of bruise, was scary.

But it happened. I believe this is the stay where we were trying to figure out why I was falling, and losing words and my train of thought while speaking. Actually, it would’ve been my second stay trying to figure out the same thing. We’re still not sure. But we got further in that visit then the first one were two different doctors told me two different reasons, and then a third one told me it would be impossible for it to be either of those and they didn’t know why it was happening.

I’m still trying to get that answer. My neurologist has now sent me back to have another sleep study, even though my pulmonologist doesn’t understand why, since I’ve had one before and we know that’s not the problem. Sometimes that’s your only choice. I have to go through whatever steps are necessary until this doctor catches up with the rest of them and stops looking for answers where we have already looked. As somebody recently told me, as annoying as these things can be, at least I’m still on the right side of the grass today. And thank God for that.

Vasculitis Awareness Month: Day 2

Already behind. Day 2 of Vasculitis Awareness Month. This is my daughter and a family friend visiting me at the hospital my last stay.

A dear friend and my youngest daughter visiting me at the hospital. ❤️

For those who don’t know, my first husband passed when my other daughters were kids. My biggest fears are raising another kid without a dad, or leaving my kids without a mom. Every single night in the hospital, I think, “Wherever my kids are now, without me, this is what their life will be like when I’m gone.” I’ve been praying just to make it to this youngest one graduating high school, and we are only five years away!

But those nights are never easy. Planning for when you’re gone is never easy, even when you’re not sick, or terminal, like my late husband and a friend I have now. But it’s something we should all do. It’s just harder when your mortality is so IN YOUR FACE.

I’ve been sick since I was a kid, so I’m completely used to the medical environment. That gloves she’s wearing? Every single time somebody is in the hospital, we blow up a glove and make a face out of it with a mohawk. The thumb is the nose. My dad started this when I was a kid. I didn’t have vasculitis as a kid, that I’m aware of Karen but I have always suffered with severe allergies and asthma and spent my fair share of time at the Kinder Clinic in Germany and traveling to Philadelphia’s Children’s Hospital from New Jersey. I’m used to getting poked and prodded. Remember that for my next post!

I still remember taking pictures of my late husband. Pictures like this are hard. They are bitter sweet. I adore them, but they are also reminders that one day they could just be memories. My late husband had the misfortune and the luxury of knowing what was going to happen. I still struggle with not knowing whether that’s better or worse than a condition that can take you out at any moment without warning. I really don’t think there is a better or worse. They all suck.

So in the meantime, we blow up balloons out of gloves and laugh as often as possible, and when laughing doesn’t trigger my asthma. (Rest assured I delivered home supplies of nitrile gloves to doctors I knew when they were in short supply. Discuss just before Covid. Isolating actually kept me fairly healthy and out of the hospital for an entire year.)

We do the best we can and ignore the people who don’t understand when we have to ration our energy. That’s OK. They don’t have to understand. But it means a lot when people do. Thank you to my friend who took time out of her schedule to bring my kid to see me. It meant more than she could ever know.

Vasculitis Awareness Month 2021

It’s vasculitis awareness month. I don’t have the time and the energy to do live videos like some of these other heroes do. So I decided I’m going to share pictures of my journey. For awareness, and for those of you who like to pretend sick people are not sick if they don’t look sick every time you see them. I will share a different picture every day.

If you don’t already know, vasculitis is already a rare disease. The one I have is even more rare, and was formerly known as Churg Strauss syndrome. It is now known as EGPA, which stands for eosinophilic granulomatosis with polyangitis. (How the hell did Siri get all of that right, but she can’t tell the difference between “our“ and “are” or “except and accept”!?) EGPA is diagnosed in 1 to 2 people out of every million and was featured on the fifth episode of House MD as the first working diagnosis if that tells you anything about how rare and confusing it is, to both patients and doctors. I have seen the deer in the headlights look. I am an attorney. I am trained to recognize that. I have also seen complete astonishing looks from doctors who listened and wanted to learn. I have also had the best doctors bring in students so they could meet somebody with my condition because they never had. Those are my heroes.

The picture below seemed the appropriate one to start with because it was the day I was diagnosed (again) in Tampa. Yes, it can affect any organ including your eyes. I made the appointment on one of the last days of my 10 day hospital stay, and then I waited five months for my appointment with one of the specialist listed on the specific vasculitis page (I was diagnosed in 2015 by my hematologist, who had to fellowships at the Cleveland clinic in Ohio and first-hand experience with my condition, adding that I was a “textbook case,” and then again in 2016 because my first rheumatologist didn’t want to accept the diagnosis.

Second diagnosis day. As it was really just a confirmation of the first diagnosis that my rheumatologist didn’t want to accept. 🙄

By that time, I had dealt with so many doctors that didn’t understand or were afraid to diagnose or treat me, and they had just about convinced me I was just crazy. I was floored when I walked out and told my dad I officially had it and was starting chemo. (A lower dose by a long shot compared to cancer patients. But still not pleasant.)

You might want to just mute me for the next 30 days if you don’t want to see pictures like this one. But I’m putting it out there for other people who may still be struggling for a diagnosis, being told they are crazy, being diagnosed and then undiagnosed, having doctors tell you you can’t have something because it’s rare, as if “rare” means “nonexistent,” and who have lost family and friends who can’t process or handle you being sick, so they abandon you, minimize everything, accuse you of making yourself sick or wanting to be sick, and even being a drug addict, because they don’t get it. (Eventually, you have to cut ties with people like that no matter how important they once were to you, if you want any chance of preserving your mental health.)

Getting extremely ill is the quickest way to find out who your real tribe is. If anybody else out there is dealing with the same things, it is isolating. And it shouldn’t be. I still wonder what it was like for my late husband to struggle with cancer before Internet support groups were available. So for the next daughters, for anybody who just wants to know that somebody understands, and even for those who tried to steal my meds, this is for you.

VasculitisWarrior #ChurgStraussSyndrome #EGPA #EosinophilicGranulomatosisWithPolyangiitis #VasculitisAwarenessMonth #LungDisease #ChronicIllness #AutoImmuneDisorders #PrednisoneMeToo

Modesty, A Collaboration

This is an excellent blog post about something I hadn’t put much thought into, having had many urinary tract issues as a child and being used to being exposed. But it hit home when I read and thought about it.

There is a lot to be said about perceptions and it is incredible the difference when you’ve had the opportunity and misfortune to sit on the opposite side of the desk than you’re accustomed to.

Going from attorney to client, doctor to patient, or even from one profession to another, where you are used to being spoken to, seen and treated with a level of respect, and suddenly find yourself at the mercy of someone else now filling those shoes.

I always tried to go in asking clients what they knew, so I could figure out the best way to explain something. When you’re used to understanding and explaining difficult concepts for a living, and suddenly you know everything you’re being told is being dumbed down, it is infuriating!

I’ve often said the higher you climb, the harder you fall. Nobody ever wanted to be a patient when they grew up. The doctors and medical staff who remember this do very well, and those who don’t could learn a lot from them.

I think every professional should have to spend a week on the other side of his/her respective desk. Just for some perspective and understanding.

Please read the following post, which really explains this idea perfectly.

Recently, I had to disrobe completely for a scan. I was already wearing a hospital gown that I’d been given after I tried to stay in my own clothes …

Modesty, A Collaboration

Valentine’s Day Challenge 2021

As this weekend has approached, I have watched the 2021 Valentine’s Day challenge. I get it. Rather than going out and risking people’s lives, people are sharing pictures of past “dates” and “events.” And with this holiday, we come full circle into a year of Covid.

Valentine’s Day Challenge 2021

However, I wear several different hats. While I am divorced, I am also a previously widowed wife and mom to one of my late husband’s kids, one of our own kids, and one more with my ex-husband. Losing someone at a premature age is not the same as a divorce.

While I see one set of questions being asked on my main social media page, I see a different side of questions being asked in a sub group of women who lost a spouse at a young age. “When did you lose them?” “How long WERE you together?” Some of them have been there as long as I have. 20 years is a long time. But as anyone who has lost a spouse knows, this kind of grief is never completely over. The love never ended. Life did. It’s so different.

I scrolled through some of the posts. There are others who are veterans, like I am. There are some who are halfway as far as I’ve gotten. And there are those who lost somebody yesterday, last week, last month, or last year. Trust me, most of the first three years, at least, remain a blur for the rest of your life.

That’s when I realized something. One of the hats I wear is being a professional patient with a chronic illness and a looming knowledge that I could follow in his footsteps in a flash due to my own medical condition. I’ve lost a friend who has the same condition, as rare as it is. I’ve had friends come close. I’ve helped a friend grieve somebody they lost to Covid. Now I’m trying to support her as she has become a long hauler, sick longer than two months now. And I know people who have lost several family members.

I’ve had to learn how to come to terms with something called disenfranchised grief. losing people you have gotten to know very well, but mostly online, so that you feel like you aren’t part of their real life, and aren’t entitled to grieve. I’ve gotten used to that. Although I have to say, I wasn’t expecting the last one. And it’s different losing them to Covid with a vaccine on the way.

The thing I noticed suddenly tonight is that while I am used to losing members of my medical support groups, I failed to notice that my support group for people who were widowed at a young age has been growing at an alarming rate. It seems like the obvious, but it’s just not something I noticed. Until now.

Valentines and Covid Wreaths 💔

So if you are posting the Valentine’s Day challenge, by all means, do it! Milk every second you can out of your time with the people you love most. Nobody understand that better than we do.

But also take a second, if you don’t mind, and say a prayer for the many people who are spending this weekend alone because their everything, their person, their reason for breathing… wasn’t one of the lucky ones to survive this last year.

Maybe say another one for those who are waiting alone at home, hoping NOT to get a call about a last video with their partner.

And maybe one more for everybody who has lost a child, a parent, a grandparent, a sibling, aunt, uncle, cousin, niece, nephew, a close friend, or other loved ones.

And maybe one for the kids who can’t go back to school without endangering their own parent, and those who have to go back to school, and may have to live feeling guilty for tragic results.

And maybe one more for everybody who has lost a colleague and thought it could have been them.

For those who never got to say goodbye because their parents or grandparents were in a nursing home and didn’t survive.

For all of the people working, whether you are a front line medical worker or mopping the floors in the schools. Whether you are a police officer who has fought the virus, violence and hatred, or a person who is high risk because of race and being disparately impacted, or socioeconomic status.

We are all human.

For those who have been vaccinated and are praying that it works, and for those who are desperately waiting for their turn to get it, and for those who are choosing not to because they are afraid of the risk of the vaccine than the virus.

Whether you are a Republican or a Democrat or an independent or a libertarian, or just fed up with what we have been through politically, especially in the United States, as if a pandemic were not enough.

Just say a little prayer for people struggling through this weekend. I am grateful for the fun day and week I’ve had with my kids. But not everyone was lucky enough to have kids. Some are homeless without their partner in a world where jobs are scarce and crashing with a friend is a much bigger ask than in previous years.

Then… ENJOY THE HOLIDAY! Every minute of it. Even if you can’t go out or do something that has been a tradition. Nobody is guaranteed tomorrow. If the last year taught us anything, it’s that.

Make today count. Make every day count. Before you run out of days to count. You aren’t just doing stuff. You are making memories. Memories that will carry you if you find yourself walking a path nobody should ever have to walk. Keep making them, and then make more! Make them every day until you run out of days, even if you make it to 100 years old together. Never stop making them. Because those memories… the memories you’re making… they are everything.

A Hundred More Years

Memories