I had the distinct pleasure of experiencing the total loss of a home due to fire last year. It was my father’s home, not mine. However, because I lived with him for a period of time within the last few years, and because I’m currently living in an apartment where storage for extra belongings is limited, I did have some belongings in it that were lost to the fire. It’s a weird thing to experience. You can’t begin to remember everything you had, until you remember something you need, and think to yourself, “Oh, I need to go get that from…” “Oh yeah, it doesn’t exist anymore.”
My father was put up in a long term hotel, which was pretty nice considering it was summer, and they had a nice pool, as well as daily breakfast, and dinner five days a week. It had an extra sofa bed in the living room, and since there were circumstances that involved the safety of my daughter and me, we stayed with my dad at the hotel, which was nice for the kiddo and for me, because it was almost like being at a resort for the entire summer, which is how long it took to investigate and process the claim. Thankfully, he had the best insurance around as a result of his military service. They pay quickly, and substantially when there is a valid claim.
While there, I registered to use my phone with an account to access the doors, rather than keep track of a card. Because I had to stay logged in, I noticed the account go through stages as our stay was extended. First bronze, then silver, then gold, then platinum, and finally diamond. With each new level, came a few little perks, like being able to “gift” one of your free nights to someone, or getting a free room upgrade, or other little goodies. It was nice. I felt like I was “seeing how the other half lives.” I imagine this is much like the “miles” people collect when they are frequent fliers. I am only a frequent flyer at medical facilities and through medical insurance.
Today I spent one my usual hour-plus long calls with my medical insurance company on the phone. Insurance is one of the ugliest beasts anyone with a chronic or serious medical condition has to do battle with, in addition to all of the other battles we face, aside from the actual medical condition itself, which we barely have time to deal with while dealing with all of the other gifts that come with it. Insurance should technically be considered a “side effuck” of our medical conditions.
Because of the pandemic, I began having my meds delivered, rather than spend the hour-plus I used to spend sitting at the pharmacy, where I’m on a first name basis with every employee and they have my information memorized, as well as my medical condition and many of my medications. In fact, my particular local pharmacy is excellent at catching things before doctors even catch it. I’m so grateful for them, and I’m certain they have saved my life on at least one occasion. Before I found out they were starting to deliver locally, I transferred some of my prescriptions to my insurance company’s mail order program. When I found out they could be delivered locally, I let them do the rest, as I really liked the service provided by my local pharmacy.
Today we’ve been trying to sort why the mail order service through my insurer has sent me varying “co-pays,” depending on whether it was texted, stated verbally by a representative, or run through the local pharmacy, all producing a copay for a medication under an insurance plan that is supposed to require no copays for necessary and “formulary” medications. (Formulary in this case means it is covered under a list of specific medication formulas.) While doing so, they explained this concept they have where patients/clients/members are regular members, and after a certain point, they are covered under “gap coverage,” which is supposed to require them to pay a little bit more of their part than the regular member. However, if you pass yet another level, you fall under “catastrophic coverage.” Under this tier, you don’t pay any copays. They cover 100% of your medication expenses. As long as they are under their formulary list or considered medically necessary after you have shown you can’t take their preferred formulary drug.
I have to say, it was a little bit of a shock to be discussing my case as being “catastrophic.” It got me wondering who came up with these names, and why. These are the little things that make people like me question our existence and the value it has to society. Why not treat us like loyal customers? Because really, we are. We are the MOST loyal customers they will ever have, as we don’t really have a choice about needing insurance. Most of us, anyway.
What if instead of becoming a catastrophe, after I passed a certain level, I was considered a “gold” level customer or client? And it came with a free box of tissues or a $5.00 coupon off of my next “purchase”? And what if the most loyal customers, those with severe chronic, terminal or otherwise extreme medical conditions, were given the top tier of platinum or diamond level members of our insurance plans? With a free item from the OTC items worth $25 or something?
It would give me just one way of not feeling like a complete drain on society, on my family, and on the very companies I support due to my health condition. I recently read a fantastic article about changing the way race is viewed in history books by changing the word “black” to be capitalized when referring to race: “Black.” It was brilliant! Words have meaning. Sometimes even though they are being created to reflect the business they are engaged in, sometimes they forget the reason their business exists is because they have “customers.” Without people like me, they wouldn’t even exist. We carry them. My $10k medication delivered, refrigerated, to my door monthly, helps carry them.
I am currently awaiting a return call to see if the last representative I spoke to, who is probably somewhere between the 11th and 15th person I’ve spoken to regarding resolving this matter, to see if he was able to resolve it by constacting my local pharmacy and other resources. Everyone agrees it should be covered, but nobody can figure out why it isn’t. This is no surprise to me, but I am reaching the level that is unconscionable to me, where my mental health takes priority and I have to agree to spend what little money I have available on disability paying for a medication I know I’m not supposed to be charged for. Because it’s easier to pay and deal with the financial loss, than to keep letting this affect my stress, which in turn, triggers flares and makes my health worse, making me even more dependent on this poorly oiled machine that does not work in favor of its best customers/clients. We deserve more.
So from now on, when I hear “catastrophic,” I will equate it with “Platinum.” With a capital P. I will also reward myself. It’s not the same as being valued by the company I’m supporting, but I deserve it, and giving myself credit for things when nobody else does has become a necessary part of living with a chronic illness that affects every part of my life.
So let’s raise a glass to all of the Platinum members of our medical insurance plans! May we raise a glass, raise our standards, and raise our value! We matter, too! We are NOT expendable.
Not so many years ago, I was in the depths of despair, dragging myself from whatever bit of legal work I could do, to one appointment after the other. Appointments with doctors, appointments to get imaging done, appointments to get lab work done, appointments to get this scan and that scan, sprinkled with random emergencies and hospital stays. And let’s not forget a lot of specialists with no diagnosis.
If got so bad that after one point I had to take a Xanax just to go into an appointment with a new doctor, and sometimes even with established doctors. At every appointment, I was prepared for the following events to take place, whether one at each appointment or all in one:
Doctors would need medical records. The first appointment would be spent filling out forms for record requests from other doctors. Every appointment ended with the same sentence: “We will request records from your doctors and go over them at your next appointment.” By the next appointment, if I was lucky, half of the doctors had sent in their records. If I was even luckier, the doctor would actually look at those records, and ask me one or two questions about them.
Eventually I was able to cut down on this by taking notebooks with me, at one point filling a briefcase, with all possible records I could keep in my possession. I had one binder for medical records and notes, and a separate one for labs, scans and imaging. Some doctors laughed at me. The best ones thanked me and complimented me.
“Have you ever had a DEXA scan done?” “Sure. Do you want the one from last year only, or the one from three years ago and the one from last year?”
“What has your highest eosinophil count been?” “That was with Dr. E, on this date. Here’s a copy.”
“Have you had any surgeries to deal with the sinus polyps?” “Four surgeries. Would you like a copy of the surgical reports?”
I may have a list of several issues. I will leave and write those issues down. I will not be asking or receiving an answer to most of those questions. If I am lucky, I will get to ask one or two of them. I will always have the one that is most urgent circled, and the next most important/urgent underlined, just in case I get lucky.
Whether or not I get to ask my questions depends on whether the doctor is even interested, or even looks at me during the entire appointment. If they bother to give me an opening to ask a question, I will go with the most important question in case I don’t get another chance. If the question is answered quickly or brushed aside, I may as well go for another one. At this point, I may be able to go through multiple questions if they are being brushed aside, although I will usually stop asking if this is the sense I’m getting.
Unfortunately, this is the result of many experiences including some that are traumatic, during which I was actively bullied for asking too many questions, or for asking questions that were “above my pay grade.” In case you’re wondering, patient is the lowest pay grade in the medical field. In most places, you are both the reason that institution exists, and the least important part of it in practice. Hospital records, statistics, professional egos, fear of litigation, and many other things come into place long before the patient’s own sense of well-being.
It is actually possible to get a clean bill of health from a doctor based on all of their criteria, but to remain chronically, or even terminally ill because they didn’t think you should ask additional questions or they should investigate certain issues. In my case, it only took three years to get a diagnosis. Some patients I have spoken with across the world with this condition, have taken 16 years or longer. I’m grateful it only took me three. And that I’m still alive to complain about it.
My Xanax and my temper has to remain in check. I have been treated in such ways that they have elicited both fully blown meltdowns, with me just sitting there in tears, not having a clue what I should say or do next, as well as erupting in anger when I have had the confidence and clarity (and the right, or should I say wrong, buttons have been pushed), to allowed me to tell someone exactly what I think of their professionalism and competence. I have to be ready for anything.
But what’s strange is that I don’t know what is more important, professionalism and a bedside manner, or medical knowledge. Often you can’t have both. This is what I strive for, so inevitably, I’m let down because the doctor I get has either neither of these, or missing one.
Usually it’s professionalism. Of my best three doctors, two of them were previously knowledgeable about my condition. One of them was not knowledgeable about it at all. However, all three of them took the time to learn more about the condition when I became their patients. The one who didn’t know anything about the disease was a pulmonologist, and he was fascinated. He was Harvard educated, so he recognized that it was a rare condition, and that he was lucky to meet somebody with it as a medical professional, because it would give him experience many doctors don’t even have the opportunity to learn about.
On the other hand, competence is also sometimes an issue. I went to an experienced doctor, and he performed a blood test. When I went back for my second appointment, he looked at the blood test and said I could not have the condition I thought I might have, because I tested negative on a specific test. The thing is, I was already educated enough to know that 40% of patients with this condition test negative on this particular test. I never judge based on one mistake. However, not long after, I played a portion of a seminar that had taken place six months earlier, discussing the fact that even the best allergists don’t know a particular fact about my condition. This Allergist said to me, “That’s just a researcher. I’m a clinician. I do hundreds of these a year.”
Game over. This particular researcher is one of three who studies an underlying condition I have, which I was first diagnosed with, and which carries some of the same diagnosis criteria for my main diagnosis. In addition to her group, which studies this condition exclusively, at a Harvard learning hospital, she has actual patients, in addition to continued research and studies with patients who have been diagnosed and register with her across the world. She actually responded to a message I sent, and we spoke for an hour when I was initially diagnosed. One of the nicest doctors I’ve ever spoken with. In fact, she was the person who recommended Nucala to me to begin with. Which is still the primary drug I am using other than chemotherapy to manage my condition.
In any case, it is a miracle for me to find a doctor who is both competent, knowledgeable or willing to learn about my condition, and is not insecure and walking around with some kind of superiority complex that keeps him from being able to discuss my medical condition with me like I am a human person. Capable of understanding English words. And believe it or not, even some medical ones by now. I take what I can get.
Then there are just the doctors who are abusive, and it doesn’t matter if they are knowledgeable or not, because their ego is bigger than their desire to practice medicine. Period. End stop. The same can be said for any profession. Including attorneys.
However, I took the time, in my opinion, to make my clients feel valued, and would sometimes stay in the office very late, or work overnight, trying to help someone because I knew they were in the depths of despair in their life, and I had the power to make a difference. Of course, sometimes this was abused, and I had to set boundaries. However, most clients had a decent understanding of boundaries, and had a great sense of appreciation when they knew I was going above and beyond. I am still in touch with some of those clients. I have watched their families grow and succeed as a result of, in some small way, the work I did to help them. Nothing gives me more joy than knowing this, other seeing than my own children grow.
I don’t expect doctors to give me any more than what I gave my clients, and I understand that they are human and perfectly imperfect. I just ask that they be honest and fair. And if they don’t have time for me, or are not interested, that they are honest about it and let me move on to find somebody who is. I’ve been blessed to find three doctors who have fit this bill. One of them moved suddenly, and I lost him. But I was moved up to his boss, who was even better. But it took many years to find the two doctors I credit with saving my life, who I choose my insurance around making sure I won’t lose. Because when you’ve had some of the nightmares I have, those doctors are more important than family members.
I had two experiences I have trouble even thinking about because they were so shocking. They are long stories, but they are good ones. Unfortunately, they are for another day. When I’m up for a trip down that particularly thorny memory lane.
Fast forward from 2016 to 2020. I am now post diagnosis. My symptoms causing most of the most life-threatening issues are somewhat under control. Those that are not under control are managed and monitored aggressively. However, my expectations from doctors have dropped dramatically.
I only think of the most annoying symptoms now, and try to figure out how I can try to work them in if I’m not given the opportunity to ask questions. I usually can’t find my records. I have issues with memory and cognitive decline, and I’m seeing a neurologist to find out if it’s only related to stress and other external issues, or whether there is any additional physical cause other than white matter changes to the brain that were found in November.
I do have a folder in my dropbox with all of the documents that contain records used to diagnose me. I still encounter doctors who seem to not believe my diagnosis, so I print these out before every new appointment. They contain two separate diagnoses of the same condition by two separate doctors. The first is the medical director of oncology and hematology at a local hospital. However he did two fellowships at the Cleveland Clinic and had first hand contact with the rare condition I have. So he clearly diagnosed me, but wanted me to follow up with a rheumatologist because he is not a rheumatologist. He’s primarily an oncologist and hematologist. However, he stuck with me and assisted my pulmonologist when he realized my rheumatologist was leaving me out to dry.
Being the medical director, he was able to keep me in the hospital to get the biopsy and medical records necessary for my doctor, even though after I gratefully accepted the resignation of my then rheumatologist, who had an Inferiority complex that impeded her ability to practice medicine, and I left the hospital having made an appointment with a specialist in vasculitis at the University of South Tampa, listed with the organization for my particular condition on the national website. I was going to the best of the best for a final determination. I was sick of the guessing.
In fact, by the time he diagnosed me, I was in the same state of shock I was when the first one diagnosed me. I had been convinced I was imagining it, that he was going to confirm I did not have it, and I would have to start over. I still remember walking out and telling my dad he diagnosed me and I was starting chemotherapy. I still didn’t believe it. I also remember when I showed up, I was bloated, I was still having the life-threatening daily asthma attacks, and was having a conjunctivitis eye flare that looked as if I had smoked the fattest blunt I had ever seen just before going to the appointment. I was scary in the mirror.
I lost that doctor when I got divorced and lost that insurance. Although he could have taken me at a different hospital and I believe he didn’t because during my divorce, my former husband challenged my diagnosis and was not going to accept it unless my doctor came to court from Tampa, canceling other patients, who like me, had waited five months to see him. I cried and cried the night before our trial as the doctor was trying to get out of the subpoena, and I desperately wanted to allow him. Ultimately, I just settled so we didn’t have to deal with interrupting that doctors practice. Unfortunately, he didn’t get the message in time and he came to Orlando anyway. I still lost him. It’s been three years without a rheumatologist, with my pulmonologist doing the best he could to manage my rheumatological issues and meds.
If I’m being honest, I have become so careless and my expectations are so low, that I didn’t even know if this doctor was board-certified, had privileges at the hospitals I was referring to, or even where he went to school. I knew nothing more than he was a rheumatologist, he took my insurance, and he was willing to see me. Everything else, I put in the hands of God. I didn’t even take a Xanax. I was beyond caring if I melted into a puddle of tears. If I did, maybe he would understand what I had been through. I was just ready to be disappointed, honestly.
It started much like any other appointment these days. It was raining outside and a call to confirm they had my referral that morning resulted in finding out they didn’t. My pulmonologist’s office swore they sent it already, but they sent it again. They are my heroes. They come through at a moments notice. And they deal with my high maintenance issues. With Grace. Always. I never tire of singing their praises.
I was almost hoping they wouldn’t get the referral in time so I could reschedule, because as usual, I wasn’t ready. I didn’t have the records I wanted ready. So as I was showering I reprinted my diagnosis documents for probably the 20th time. I grabbed a stapler so I could staple them in the parking lot while waiting, or in the waiting room. I didn’t realize I grabbed a stapler with no staples. So my records were in a crisscross manner, the way I would sort records before stapling when I worked with multiple records. I was a mess.
As if things couldn’t look any more promising, when I finished my paperwork, I went to step out of the office and hand it to the front desk, but the hallway was intimidating. They were twice as tall as the doors, yellow, and the corridors were long. I was reminded of the kind of scene you see in horror movies set in psychiatric wards of a remote hospital. I don’t know if this was some kind of psychological manifestation of the experiences I was used to having in new medical offices, or if there was really something creepy about the hallways. Let’s just say I decided to turn around and go back and wait in my room.
As I sat there, I realized this seemed to be an overreaction, and I questioned if I was losing my mind a bit. I felt unusually uneasy. In fact, I felt as if I was high. I thought back to when I took my daytime medical marijuana, and the fact that I take a daytime one that does not affect my ability to function, and a nighttime one that helps me sleep. That’s when it hit me. I had accidentally taken my nighttime dose. I was high as a kite. Fantastic. I finally get an appointment with the rheumatologist, and I accidentally get high before the appointment. Things were lining up to go even worse than I was used to them going.
Enter the doctor.
He was wearing blue jeans and a button down shirt. He walked in and gave me an elbow bump. From that point on, it was like I was in a movie. I’m still questioning whether I was just so high that I have some alternate recollection of what happened, and it wasn’t actually the virtually out of body experience I remember it to be. I’ll list the things he said to me, and explain briefly why each one was shocking. All of them affected me. I just kept thinking over and over again in my mind, “Is this guy real?” I’m not sure at what point it happened, but at one point I just sat there thinking in my head, “I think I’m having a medigasm!” I have never used the word before, and I don’t think I have ever heard it. But I will be damned if it wasn’t exactly the correct word for what I was experiencing.
When I left the appointment, I had a message waiting from a friend who I had asked for advice about an unrelated medical issue. She knows my history, so I shared my excitement with her, along with my new vocabulary word. She is a fellow grammarian, a colleague, and a terminal cancer patient. I have definitely noticed that in addition to many shared experiences, despite different diagnoses, we also have a similar love of the human language, and a need to express ourselves. We also have a need to be treated the way we treated our clients when we practiced law. We expect nothing more than we expected of ourselves.
She was very excited about my new word. (And my new doctor. She knew the feeling.) I was so excited about it I almost told the doctor. But I didn’t want to take a chance on scaring him away. Looking back, I get the sense he would have just laughed. But I wasn’t willing to take that chance just yet.
All of what I’ll share with you shows why I think I will soon be able to make a joke like that without him finding it offensive for thinking it’s anything other than what it is: jovial satire to deal with the inhumane, but common experience, of being disregarded in the medical field, and the subsequent shock to the very CORE when this is interrupted by a rare doctor who seems to be “all in.”
I’ll share the words that either mean I have found the third member of the holy Trinity of my medical care team, or that he is trained or studied and well-versed in psychology and how to make someone feel heard, seen, and empowered. The question about whether he is the real thing is whether he will remember everything we discussed next time I see him, and whether he will actually have reviewed my records like he says he will. I have seen the dog and pony show before. I have gotten excited before. I have been disappointed before. Too many times. So many times, that I have learned to take every success with a grain of salt, and with significant doubt, waiting for the other shoe to drop, and knowing that when something seems too good to be real, it probably is.
Nevertheless, all of the following things lead me to believe I may have struck gold. I don’t want to look a gift horse in the mouth, so I will wait a bit before I confirm whether he is board-certified. And all of the other things that I now just consider luxuries when looking for a doctor. They used to be dealbreaker criteria. I had to let that go. I’m willing to settle for what I think I may have found today. If you’ve experienced half of what I have, you will completely understand why each of these things was a miracle on its own, and why together in one hour of an appointment, they caused a new term to be born.
Stay tuned for details about the life-altering experience I had in part two of The Great Medigasm!
Ladies, and men if you’re so inclined, (and anyone other than those, as I don’t mean to exclude anyone): I have finally discovered the solution to a problem I know many of my fellow prednisone victims, and many other people who suffer from health issues that cause weight fluctuations from either disease or medication side effucks (I will never tire of that word), are just sick and tired of.
If you are anything like me, you have about four closets full of clothing in various sizes. Some, you have not fit into for years. Some may have fit you last week, but don’t fit you anymore this week. Some you grow in and out of. But most of them could fit you on any given day of the week, for no reason at all, or based on your level of prednisone dosage this week.
You can’t throw them away, because as soon as you throw away one size, that is the size you will need. When you have to squeeze into the smaller ones, not only do they look weird, but then you can’t wear certain shirts because you have to wear the shirts that will cover up the top of the pants. Or longer shirts that will cover the rear end so you don’t look like a street worker at your kid’s school PTA meeting.
If you have already figured this out, please let me have this. Skirts. Don’t run. I know. If you’re anything like me, the most comfortable sounding thing in the world to you is a pair of jeans and a T-shirt. I’m not talking about the kind of skirts you wore to work. Tight skirts with zippers. Skirts you have to wear heels with. And pantyhose. The ones that require an accessorized bag and matching jewelry.
I’m talking long flowy skirts. Not made with weak material that will tear easily. Cotton skirts. There are a few different fabrics. See which ones work for you because some people are sensitive to certain types. Also, if you live in Florida, like I do, you have to look out for plaid and other styles that can be thick, hot, and uncomfortable.
There are so many of these available for very affordable prices, and sometimes even a steal, on Amazon. Even more of a bargain are some of the dresses that are just as comfortable. Lots of T-shirt style dresses. I bought a couple of dresses from there for going out, but I noticed not only do I look nice for going out, but I’m just as comfortable lounging around the house in some of them.
Then I noticed the most important thing about them. The ones that do not button, with elastic waists, or that are just looser fabric, ALWAYS FIT! I can gain a few pounds, lose a few pounds, gain a lot of pounds, lose a lot of pounds, and most of these things look relatively the same. Or at least they always look presentable. And the long ones make it so you are not having to cross your legs all the time like you would in the kind of skirts you might’ve worn as a professional, or a young hot 20 something. (Hey we were all there once.)
I just ordered seven skirts and three more dresses from Amazon for less than $200. Once they arrive and I confirm they all fit as comfortably as the ones I have ordered in the past, I will be throwing out so many pairs of old pants, and will not have to worry as much about shirts because the skirts always hide any kind of shrinking or blossoming shapes that might evolve below the waist. I can even wear a T-shirt with them and it will work.
I don’t know what took me so long to discover or notice this, but I feel like I just discovered bottled water! It actually gave me something to write about at a time when I have been largely unable to write about anything because I am so overwhelmed by so many things happening in the world. So here’s to hiding belly bubbles, baggy skin and visible bone structure, unless you want to flaunt it. I am also totally behind just owning what you have and not being ashamed of it.
I hope this helps somebody other than me. If it makes even one person’s life as easy as I think I’m about to make mine, it’s worth it.
Love each other. Be kind to each other. Nobody is OK in this world right now. The last thing you say to anybody could be the last thing you ever say to them. Make sure it’s worth remembering (and not in a therapy session about regrets). Live and love the hell out of every moment you get to keep breathing. If you’re still breathing, your work here is not yet finished.
“With a heavy heart I’m writing to let you know that *Amy passed away Monday morning peacefully in her sleep.”
Name changed for privacy
You know those reality TV shows, where there is a picture of each member, and as they are voted off of the show, one of the pictures turns gray every week?
It seems like such a ridiculous comparison; being booted from a TV show for entertainment, and someone losing their life to a ridiculous and heartless disease. Nevertheless, the connection is there.
I’ve already lost count of how many of these messages I’ve read. It’s the message that comes up in your support group when someone is taken from us too soon. No matter how many times it happens, you’re never ready, you’re never expecting it, and you’re always shocked.
I’m pretty sure everyone has the same reaction. It is grief, after all. It has a pattern. A cycle. If you’re familiar with it, you know that it doesn’t really end. You cycle back through it. Rinse, wash, repeat. It does get a little bit easier as you process the same loss over and over again. I tell people who ask that you will never forget. It will never go away. Anyone who tells you it will is lying, in my personal opinion. What will happen, however, is it will get easier. You will start to remember with more joy than tears. It won’t punch you in the gut as often. It’s a little less violent.
After seeing a version of this reflected in a humorous way on the show, Jane the Virgin, I am convinced many of us go through a full mini-cycle of this when we learn about these kind of deaths on a consistent basis.
The Kübler-Ross model of grief represents five stages of grief: denial, anger, bargaining, depression and acceptance. I think this leaves out one initial stage. It leaves out the stage of shock. It seems like a rather important one to me, because it describes what you’ll later refer to as a trigger. That first moment when you learn of a death, and the world stops for just a moment.
It’s not like anything else you hear in a day. Someone’s life is over. Many other lives are affected. Some more so than others. When it comes to illness, especially a shared illness among people in a support group, it’s not just someone. It’s someone like you. It could have been you. So the world stops. You stop.
For a moment, sometimes a very brief moment, and sometimes for a lot longer, there is nothing. Only shock. Only the words. You don’t process them. You just understand what they mean. I learned in therapy that the word for this is dissociation. At least, this is my first reaction. And I suspect this is the reaction people describe as shock.
It’s the same feeling you have when you have a grief attack. That’s what I call a Moments when all of this bubbles to the surface and it feels like it just happened. Even 20 years later, it can feel like yesterday. It just takes a trigger. Something that reminds me of that moment, and it’s like I’m transported there. It’s the same feeling of shock every time.
I recently received news that somebody who is critical in my life was diagnosed with a very dangerous disease, that could end in death. I knew I was not reacting correctly. But I went about my business, took care of some of the related issues, and it wasn’t until that evening, at least 12 hours later, that I broke down and the reality of what was at risk hit me. I wanted to call my old therapist and say, “I get it now. I understand dissociation now. To the point that I know when it’s happening.”
Today when I received news that someone in my support group had passed away, in my mind, I saw the name fading. Knowing people through a support group, especially when it’s for a terminal illness or one that has no cure and can become terminal at any moment, means you get very close very fast. You learn to trust people you have never met in real life in a way that you don’t trust anyone in your “real” life. Which makes those people very real.
Sometimes you don’t even have a face to associate with a name, but you know the name very well. You get used to seeing the same names responding when you post about serious and complicated issues. You start to associate those names with a feeling of being cared for. Of being understood by somebody who gets it. For me, my condition is only diagnosed in one person out of every million per year. I’ve never met anyone else in person that has my disease. So the only people who “get it” in my life ARE those names for whom I have no face to connect. Other than a profile picture or pictures shared since I met them. (This might be a good time to mention that sick people don’t often like taking pictures of themselves. So it’s probably not a surprise that most of the profile pictures are not actually pictures of people.)
After hearing or reading that somebody has passed, I sit in disbelief for a minute. However brief, even if I don’t recognize the name at all, I still experience that numb initial moment of shock and disbelief. I question whether I would’ve been ready if today had been my day. What if I’ve been meaning to do that I still haven’t done? This many people later, why haven’t I done them?
Then there is, for at least a moment, a feeling of denial. No matter how many times it happens, there’s a little person inside of you that screams, “NO!” Every single time. Stage one of the five stages. Or stage two if you’re counting my extra one.
And then it’s sort of feels like I experience the rest of them all at once. Anger, bargaining, depression and acceptance. It’s almost as if we live in a constant state of grief once you enter this world, and each time you learn about another death, it’s just a surge of all of these emotions. But somehow, still always, shock.
That moment where we realize one of the people who entered this game in reality just got… eliminated from the game. There is silence. We all entered together. We’ve all had a core experience in common. It has gotten real many times. We’ve seen this happen before. We all know this is going to happen. And happen again. And again. And again. And still again. We all know the next one could be us.
And then we have to go back to life. Knowing that some people are not getting to go back to life after this. We have to keep moving as if everything is OK. Please understand that we carry those gray pictures with us. And they pile up. You start with one, then you have a few, then you can’t remember how many you have. But it’s a wall. It’s a wall in your mind with profile pictures fading away… much faster than they should.
If only it was a reality TV show that would end with the players back in the game of Real Life.
“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.
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.
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.
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.
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.
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?