DOCTOR SHOPPING

“You get a doctor, you get a doctor… EVERYBODY gets a doctor!”

If you have dealt with a serious illness of some kind and you have had to search for a doctor, or change doctors more than once, you have undoubtedly encountered somebody who accused you of doctor shopping.

I used to get very defensive about this. And then one day a lightbulb just went off. So the next time somebody, usually my spouse (now my former spouse) or a family member casually made this accusation, either directly or in an offhand indirect manner (otherwise known as passive aggressive) I was ready:

“How did you get the shoes you’re wearing?“

“Why does your purse match your pants?”

“Who gave you the ring on your finger? Is it stolen? Or did you or someone else pick it for you?”

“What kind of cereal do you keep in your house, and why? Do you have a favorite?”

“Your glasses seem to fit your face. Am I to assume you can get such a great pair of glasses off of Amazon? And they magically fit!? Wow.”

“That’s a nice car you have there. Who gave it to you?”

“Is that health insurance you have? Can you go to any doctor you want? That must be nice. How did you end up with that particular insurance? Have you ever wished you had a different one?”

“That’s lovely nail polish.”

“The highlights in your hair bring out the color in your eyes.”

“What kind of make up do you use?”

“How did you get the house or the apartment you’re in? Does it have enough rooms for all the people in your family? If it does, was that on purpose? Or did you just go out and buy the first house you saw on sale, and just decide to try to fit into it, whether or not it was too small or too big? Or affordable? Or accessible if you had a disability? Or close to a school that you need for your children? Did you just luck out by getting the things you wanted and needed?”

Learning to purchase a home.

“Wait, what’s that? You mean YOU picked your own car, house, dishes, clothes, jewelry and accessories, toys for kids and adults, and in some cases, even schools? But why? You wanted to drive a quality car, wear quality clothes, live in a quality area in a suitable home, and have your clothes and accessories reflect YOUR lifestyle and personality? That’s okay with you? Isn’t that just like doctor shopping?”

What’s the Difference?

“I see it. I like it. I want it. I got it.” ~Ariana Grande

Why is it that you can shop for anything from your underwear to a gift for a colleague, from accessories to the home you will pass down for generations, from the food on your shelves to the school you will go to to get an education that will determine your caree; and you are even advised from early youth and going forward about the various factors you should take into consideration when making purchases? Why are these decisions considered so important and expected to be taken seriously as you enter the adult world and start learning the value and consequences of your choices?

“Are you shopping for the right food? Who decides what food is best for you?”

In case you weren’t familiar with my particular brand of sarcasm, that was a rhetorical question. The answers are obvious. Every time you have the opportunity to make a purchase as a consumer of anything, whether it is a physical item or a service, you have both the opportunity and the responsibility of making an intelligent purchase. You also have the choice of making fun purchases sometimes, which is just fine, as long as you have your priorities taken care of. Why wouldn’t you shop for the best, or at least the most appropriate for you?

For reasons I can’t understand, this doesn’t translate to finding a medical professional for your health care. I have been a patient my entire life, and I’m now what I consider a “professional patient,“ meaning it is now my full time job, and the only one I have the time and ability to do, other than raise my kids. From the time I was a toddler, visiting the KinderCare Pediatric Hospital in Germany, or having allergy tests done in Philadelphia while we lived in New Jersey, or having urinary/kidney issues, in both of these places and in Alabama, during two of my dad’s tours, I’ve been a patient, so I was trained early.

Lately, however, I’ve become extremely disappointed and outright offended by people who accuse people with special medical needs or desires of “doctor shopping” if they go to a doctor who gives a different opinion from another one.

What is the alternative, exactly, that people expect us to do? Just take the first doctor that comes up when you flip open the list of doctors on your insurance and follow the kindergarten rule: “You get what you get, and you don’t have a fit!”? What if your doctor doesn’t have any experience with your rare medical condition? Tough luck?

First Doctor Shopping Episode

“Did you just tell me to watch the Discovery Channel instead of watching my own birth?!”

The first time this happened was when I was looking for an obstetrician to deliver my second child. My first child ended up being born by cesarean section. At the time, I was young. I didn’t know I had choices. I thought when the doctor said it was time, it was time. I didn’t think that meant it was 530 and time for him to go home and have dinner. And maybe that wasn’t the case. I was in labor for over 30 hours. But the point is, I was too young to even ask the right questions.

Later I found out this wasn’t uncommon. In fact, it’s more common in the United States than it is in other countries. I spent the better part of a decade angry because not only did I end up having the surgery, but I missed the first two hours of my first born child’s life while everyone else got to see her in the nursery, followed by my first moments with her being in front of EVERYONE who gathered into my room after they saw me rolled from recovery to my room, and then followed me as they brought me the baby. That was 21 years ago. I was mad. I’m still mad.

So when it was time to have another baby, I was 10 years older, and a lot more educated about the choices I had. One of those choices was the right to try a natural birth. However, the doctors I chose didn’t seem to even want to. I learned through a support group that most doctors would not do one after a cesarean birth. I set out on a mission to find one who would. I went through three obstetricians before I found the right one. It was my husband, who accused me of doctor shopping. Not to say he was the only one, because I know he wasn’t. But he was the most significant, because I was having our child.

The first doctor was a woman who flat out said she would only do a cesarean delivery. I moved on to a different doctor in her practice that I heard great things about. However, he said he would also only do cesarean, and convinced me that no doctor would do a natural (vaginal) birth after a cesarean (VBAC). I had grudgingly settled for this, until about the 35th week when I asked about watching the delivery, maybe in a mirror, even if it was a cesarean. Blood and guts are usually not an issue for me. Growing up with allergy shots and medical procedures, they fascinate me rather than disgust me. He didn’t know this. Even worse, his exact words to me were:

“You don’t want to see that. Just watch the discovery channel.” 🤔

I was so angry, it didn’t even take full effect until I had left the office and processed that he actually said what he said. I was around 35 weeks, so it was a problem. Luckily, I was able to find one more recommendation, and the doctor was willing to see me and take me on at 35 weeks.

Before I left, I went to the appointment I had already scheduled, and I told the doctor I had checked with a discovery channel, and as it turned out, they were not airing my delivery of my child after all. He was completely lost. I reminded him of what he had previously said. He didn’t even seem apologetic. It was one of the only times I have gotten up and walked out of the doctors office and left him sitting in the room rather than the other way around.

Like Night and Day

“A birth story was born.”

Not only did the new docto see me at 35 weeks, and offer to let me do a trial VBAC, but he was the FIRST doctor to look at my records and do a physical exam to determine my chances. In the end, it didn’t make much of a difference as far as a natural birth, because what he discovered was that an accident I had when I was young fractured my pelvic bone and it was at an angle that interfered with natural birth. Now this I could live with. At least I felt like I had tried. And he would continue impressing me.

Obviously, the issue was that I wanted to be involved in the birth of my child. I wanted a birth story. One that I could tell myself, instead of one that other people had to tell me about. He got it. After he opened me, he turned the mirror, pulled her out, but only halfway. He waved her little arm at us and said, “Hi, mommy! Hi daddy!” He then asked if we had seen her before he pulled her out completely and moved the mirror. They did have to give her oxygen for a minute, but then she came straight to me.

I suppose it’s difficult for anybody who hasn’t been there to really understand the significance of what this doctor did, and why it matters. But every doctor you choose should be chosen with the same care and consideration you use when purchasing a home or a vehicle. The same considerations you use when you pick a college. Those decisions are made based on needs/preference such as school districts when you buy a house, gas mileage and payment amounts when you buy a car, what kind of engagement ring you will stun your partner with, and going to a college that offers a degree in your chosen field of study. Even your clothes are picked out according to your style, according to your needs, and according to your body size and type.

That “new car” feeling!
“She said yes!”
Alumnus/Alumna

To shop for your favorite lipstick, underwear, and clothing, as well as your college, your home, and your vehicle, and then to just take the luck of the draw when it comes to a physician, would just be irresponsible. It’s probably one of the most important choices you will make in your life, especially if you have health issues that make medicine a significant portion of your life.

Choose wisely!

I no longer have a problem when people ask me this question, or even insinuate that I am Dr. shopping. I simply ask them how they obtained what they are wearing, carrying, or driving. Then I ask why anybody would be dumb enough to not shop for a doctor knowledgeable about your medical condition, and qualified to take care of you. It’s arguably the most important shopping you should do, because if you don’t have the right doctor to keep you alive, nothing else you shop for really matters, does it?

Things to Consider While Doctor Shopping

To better understand why chronically ill patients shop for doctors, these are some of the considerations we have to take into account, not just because we like it, but because our lives may depend on it:

1. Has the doctor heard of my disease?

2. If he/she has not, or has only heard of it, but has no experience, is he/she willing to learn?

3. Does he/she take your insurance?

4. Is s/he willing to take me on as a patient, after learning about the multiple and complicated medical issues that come with me? (Yes I have had doctors say they cannot see me because they are not sure how to treat me.)

5. Is s/he willing to deal with the insurance company when they have ridiculous requests like prior authorizations, even though we both think it’s ridiculous? Because without it, I will NOT get my meds. Yes I actually did have a doctor who refused to do these. While I understood his point of view, it left me in a no-win situation.

6. Even if the doctor seems qualified, is his/her staff equally qualified and efficient? The best doctor it’s not worth a hill of beans if you can’t get to him or her unless his or her secretary, receptionist, or office manager deems your need worthy of even asking the doctor.

7. Is he/she a team player? Unlike cancer patients, who have oncologists who serve as a sort of “primary” doctors for purposes of treating cancer, and regularly deal with teams of various specialists for different parts of the body and different treatments, people with autoimmune conditions have no such specialist. Our treatment comes through other specialists, or sometimes, a rheumatologist. While rheumatologists are supposed to be able to deal with autoimmune issues, many of them are much more focused specifically on rheumatoid arthritis and/or other osteopathic/arthritic issues. This has resulted in having to travel two to three hours to get medical care from a specialist in my particular disease. It is critical that my doctors communicate with each other and are not battling with each other over ego problems.

8. Do they have privileges at the hospital I go to? Because of the issue raised in number eight, I have found this to be key in getting some kind of a “team” effort. My two most important specialists are both the heads of their departments or the entire hospital where they work. This means they can access each other‘s records, they know who each other are and respect each other, and they communicate with each other about my care. Just to be clear about how important this is, I spent 10 days in the hospital with other doctors trying to release me against my doctor’s orders, even when he was the medical director of the hospital I was in! Had I not been more vocal and a stronger advocate for myself, I would’ve probably checked out without getting what my doctor needed to get my diagnosis confirmed. Therefore, having doctors with privileges at the same hospital ensures that we are all on the same page. It also protects me as much as it does the doctors.

9. Is the doctor for or against something that is controversial, that will influence his or her ability and/or willingness to care for you? For example, if one doctor puts you on medical marijuana, and you have to find a specialist, is that specialist going to provide the same quality care if they do not support the use of medical marijuana and they know I use it?

10. Does the doctor recognize you as a qualified person to participate in your healthcare? Don’t laugh. This is probably the most important question. It is also probably the most difficult one to find in a doctor. Just like in my own career as an attorney, I have found that when it comes to professionals, there are two kinds. The kind who believe they are there to do their job, and your job is to fill in the blanks and say “ok” to every cookie cutter question and answer, or the kind who believe nobody knows more about your body than you do, and without your input, their knowledge is not often going to be enough. This is both practically true, and psychologically true. If you don’t feel heard and valued, it’s not the right doctor for you.

Do and Don’t

DO NOT be bullied into believing that you are not worth shopping for when it comes to your medical care.

DO NOT be silenced when you want to participate in your care.

DO NOT be afraid to ask questions. Be afraid to NOT ask questions. Be afraid if your doctor doesn’t like you asking them.

DO NOT be afraid to walk out and not look back. Whether you are insured or not, you are more than likely paying this professional for his or her services. If they don’t meet your expectations and standards, know your worth, and walk away. A degree is only a degree. It is not a certification about any professional’s humanity.

Do your research!

DO your research. Is the doctor board-certified? Where did here s/he go to school? Where did they do their residencies and fellowships? (Does that seem like an unnecessary question? Try telling a doctor about a bad experience you had at a tertiary care center, only to find out the doctor did her residency there.)

DO ask direct questions. Ask the uncomfortable questions.

DO offer information that should be helpful, and make sure the doctor is receptive to information you provide. (I’ve seen doctors glance at documents and stick them in the back of a file without even looking at them. I have also seen doctors review them and discuss them with me. These doctors are still my doctors. Such a significant difference. It can mean the difference between life and death.)

DO respectfully challenge things you are uncomfortable with, while also recognizing that just as a medical expertise is useless without the patient part of the equation, your own knowledge is simply that. Different patients have different levels of knowledge about medicine. While you are an expert on your body, the right specialist is an expert on how to use that information in conjunction with his or her medical expertise to obtain the best result for you.

Am I Asking Too Much?

Know your worth.

Does it seem like I ask a lot? I do. Is it fair? Absolutely. My career choice is also a professional one. While I am currently medically retired, and don’t know if I will be able to go back to practicing law at all, I know that what I expect from my doctor is nothing less than the standards I held myself to as an attorney. I was good at my job. I was great at my job. Because it wasn’t just a job. It was a career, and it was my passion.

Therefore, I know what I brought to the table as a different kind of attorney than what people were used to. I surprised other attorneys and judges with my candor and professionalism. Because of that, I will not shy away from expecting the same level of professional responsibility from other professionals in my life. I am asking for nothing more than the same work ethic I put in for my clients. Additionally, I assure you, I often met with and represented clients who had previously interviewed or been represented by another attorney. I guess they were attorney shopping. Somehow, I never heard that term thrown around the way I hear, “doctor shopping.”

If that’s a problem, I’m afraid I will have to plead guilty as charged! I have always and will always shop for, and choose any medical professionals I deal with based on my needs and their qualifications. If you ask me why I am doctor shopping, don’t be surprised when I respond with, “Of course I’m doctor shopping; the real question is, why aren’t YOU?!”

The Surgical Weight

I lost my husband to metastatic melanoma skin cancer, which eventually spread to his lungs and brain, taking him from his two amazing daughters (and the rest of us). While it’s likely he got the cancer after a bad sunburn when he was 16, he never had the spot checked out. One day he was with me in one of MY appointments, and my doctor looked at him and told him to get that checked out because it was cancer. Needless to say, I got him in to a dermatologist within a couple of days. That’s when the nightmare began. He lived with the diagnosis from early 1997 through December 3, 2000, around 2:45 am.

During those four years, we did a lot. There was a surgery to cut the spot out of his cheek. This one was scary. His parents and I were there all day, and finally decided to go eat, after the waiting room rep urged us. We were not too happy to find out the doctor had come out to speak to us, we weren’t there, and she was not able to tell us what he said. It would be another few hours before we learned it had spread to his lymph nodes, and the incision went much farther than anticipated, leading to the extra hours of surgery.

The next major surgery was to remove a tumor from his brain. This one went well. Which is not to say it was easy. It’s never easy. You have to give up all control, lean on your faith, and pray those who DO have some control are successful, and guided by God’s protective hand.

Knowing you are helpless, and at the mercy of the grace of God and the doctors.

I remember he was in the room one of two local police officers who had been shot had just previously been. His older daughter was six at the time, and she didn’t want to leave him. I still remember sitting on the steps outside the hospital, crying with her, waiting for her to calm down before I would drive home with her.

Whenever someone I know is experiencing things like this, things I can identify with, things that trigger my own reserves of anxiety about the situation, I feel almost as if I’m going through it with them. The same is true when someone loses a spouse. I went to a funeral for a woman I had never met, because our spouses were married and I went with him. I remember crying at the funeral as I watched the husband and kids being greeted by people, and nobody understudying why, since I didn’t know her.

What people don’t realize is this kind of trauma doesn’t go away. It stays with you. During those tears, I wasn’t mourning her death. I was looking at the people in front and thinking about what they felt at that moment. And just before. I locked myself in the bathroom before my husband’s service, and friends had to talk me out. I didn’t want to go. I don’t know why. I just didn’t. And when I saw our stepdaughter wandering by with tears, I snatched the opportunity, and took her to her room, where I stayed with her until it was over. Again, crying with her. She didn’t want an angel daddy. She wanted the dad who took her to school on his motorcycle. She was six years old. She doesn’t remember most of this, because she has blocked it out.

So I knew how much this family desperately didn’t want to be where they were. I also knew they wouldn’t want to experience the next few weeks. Or the next few months. Or the whole first year of firsts, or the even more traumatic second year, when it’s not expected to still be so significant for you. But also the moments where you realize, this is never going to be over. This is your new normal. This is forever.

The grief cycle is not kind. And the grief attacks are much more frequent in the beginning years than in later years. All of this, I knew was in their future. I knew what dad was walking those kids through and a lot of what lay ahead for them. I cried for them. My heart broke for them. I still put flowers on her grave at the cemetery my grandparents are buried, since it’s a distance and we don’t get to go often. I can’t leave without stopping by the other one to acknowledge the mom of these kiddos and send them a picture. They didn’t want a mom in on a headstone in a picture. They wanted the mom who was alive. But sometimes, the part of someone who is no longer alive has to live through you instead of for you.

Today a friend had to play the surgery waiting room game while her very young granddaughter had open heart surgery. I can’t explain it. Once you have been there, you can’t dissociate from what you know they are experiencing. I mean, you can, but like all things we dissociate from, we eventually have to deal with it in some way or another. I held my breath all day, imagining what the mom and dad must be going through at every passing hour. I watched the page they set up for prayers, waiting for an update, and praying with all I had that my friend wouldn’t be experiencing a tragedy in the middle of all of this chaos. It’s just too much.

Nothing is made easier when children are involved.

The thing is, I didn’t realize I was holding my breath. I didn’t realize the level of anxiety I took on, again, not because I knew the child directly, but because I knew what the wait was like. There is nothing like it. It wasn’t until they said she was out of surgery and recovering in ICU with good vitals, that I found myself in tears, and realized I was literally holding my breath much of the day, waiting. I had dissociated again.

I realized there is a part of me that is still grieving my own experiences. In praying for my friend not to experience a tragic loss, I was reliving the waiting room all over again. It’s truly one of the hardest things to go through. You can do nothing except pray and wait. You can try to distract yourself with social media (wasn’t an option for me 20 years ago), or puzzles, or books… but you’re not really there. I sometimes wish they could just put the family to sleep, also, so we can just to sleep and wake up when it’s over.

The waiting room window. Staring at nothing in particular. Just trying to get through the hours.

But this is the part we, as surviving family members, have to carry. How many times had many of us wished we could have traded places with him, to take on his pain, his stress, and his sadness, even if it only relieved him of a little bit of the weight he was carrying. But we can’t. We can only wait, and pray. It’s hard. We want to be strong for our family member, so we hide our tears, and try to smile a lot. We cried in the car when he couldn’t see us. I cried at work. His daughter cried at school. We all cried all the time, but normally not in front of him.

We can’t carry what is someone else’s to carry, even when it’s too much for them, even when it’s not fair, and even when we desperately want to. Hospice helped me understand this was a need by family members who feel otherwise helpless. Helpless and at the mercy of the doctors, of God, of the nurses, and of anyone who extends some compassion when you need it most.

Trying to distract yourself.

This… is the part we carry. For those few hours, they get to go to sleep, and wake up when it’s over. We don’t. It’s the only time in their lives that WE are truly the ones carrying the weight of it ALL. WE are told what to expect. WE are told when there is an update. We are told when it’s over, how it went, and even when they’re in recovery. Sometimes when they wake up, it’s a family member who has to task of updating them until the doctor makes it around, unless he had to leave after the surgery. Then it’s 100% on us to deliver the news typically only given to a patient by the doctor. That is a lot. It’s heavy.

But the thing about it is, this is our only chance to do what we want to do. We want to carry some small piece of the horrific journey for them. This is that chance. In the waiting room. The surgical wait. The surgical weight. For just this brief moment, WE can carry the stress for them. Looking at it this way, it was an honor to carry him for those hours. I would have carried many more if given the opportunity.

Catastrophic or Platinum?

Me, at least one day a week, usually for two hours, and often inolving a minimum of four transfers to different departents that don’t know what the other one is doing, with representatives who don’t want to give you their ID number, but will ask who you spoke with last time you called and “Who told you that?”

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.

If only…

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.

There’s that word. If this is how we feel, how do you think we feel when we are categorized as a “catastrophic” client/customer?

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.

If you want a wake-up call about how the medical and pharmaceutical companies abuse us, request a bill from a hospital stay, or the “actual” cost of your medications. You will be FLOORED. I don’t know how I will survive when I don’t have help from my family.

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.

Being chronically ill and disabled doesn’t mean we don’t work. It means we work every day at things most healthy people take for granted. I work hard to breathe. Think about that for a minute. How well could you do anything else in your life, if you had to take active steps at every moment to ensure your body keeps breathing? When laughing can trigger a life-threatning event? When a simple cough because something went down the wrong pipe leaves you on a nebulizer and unable to complete a phone call, or even explain why? When you can’t breathe, nothing else matters.

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.

The Great Medigasm (Part 1)

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:

1.

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?”

2.

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.

3.

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.

4.

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.

TODAY:

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!

American Genocide?

Are you expendable? If you die, will you just be reported as another Covid death, with the caveat that dismisses your death because you had “underlying conditions,” or were part of a group that was already vulnerable?

Someone please explain to me how inhibiting our access to medical information that can save or endanger our lives is not genocide. When the leader of a “free world” doesn’t like the numbers, so he orders that hospitals stop reporting them, and start using a different system, that will produce numbers he likes. This sounds eerily similar to a proclamation previously made that the reason our numbers are so high is because we keep testing. “So I said to them, slow down the testing!”

https://apple.news/AqitIgLzVRnuFLvKx2FCUEA

I literally plan my level of protection based on the numbers being rolled out. Now I can’t even trust that. It’s one thing to stand on your “stage” and contradict all science and medicine for political gain. It’s quite another to prevent scientists and medical professionals from reaching your constituents, thereby necessarily expediting their deaths, if not facilitating or causing them to begin with. If a doctor makes such a negligent move, he or she can be sued for medical negligence. If a store does something irresponsible that causes medical damage, up to and including death, they can be sued for negligence.

But the President of the United States can intentionally impede the distribution of medical records and knowledge to an entire country, contributing to and or causing the deaths of many, many Americans, and that’s just… What? What do you call that? Politics? Government? What is it that my life is being compromised in the name of? Because I consider taking an act that causes the death of thousand, if not “millions… billions… trillions” of people, the very definition of genocide.

Merriam Webster defines genocide as the following: “genocide -noun-

geno·cide | \ ˈje-nə-ˌsīd \: the deliberate and systematic destruction of a racial, political, or cultural group.”

https://www.merriam-webster.com/dictionary/genocide

We already know this disease affects black and minority people of color more than white, or non-black/minority POC. If I wasn’t sure of this from the studies, I now know 10 different people who have had the virus. Six of them can be dismissed as first responders or people working in the medical field who were more exposed than others, and probably expected they would eventually contracted the virus. Luckily they all survived. Out of the 10, two of them were black or minority people of color. All of them survived. Two of them were hospitalized. One who was hospitalized had underlying autoimmune issues. The other one spent a week in the hospital, and almost didn’t make it. She’s black. I spoke with her a few days ago and she has lost three family members to the virus. In some other countries and continents, this very virus is being accurately referred to as genocide.

https://abcnews.go.com/amp/International/indigenous-peoples-south-america-face-genocide-coronavirus-pandemic/story?id=71256909

Now we have been ordered to open the schools across the country, whether or not we live in states where the numbers exceed 10,000 new cases a day, and where courts and other organizations that are able to take independent action are going back to phase 1 precautions because of the increase in transmission and no sign of slowing. (Ironically, mostly in top state swear political conventions are scheduled to be held, or no mask mandates have been ordered by the state despite drastic case increases in cases and records broken daily.)

This is happening as hospitals reach near capacity and have trouble disposing of bodies quickly enough, necessitating refrigerated trucks and storage spaces to send our corpses. The corpses of the immunocompromised. The corpses of the elderly. The corpses of the obese, whether they are obese due to medical complications or medications, disease, or struggling with weight conditions in general. The corpses of the poor, the disadvantaged, the people with less access to healthcare, and the people who fall into higher risk categories simply because of the pigment of their skin. The people who have been labeled as expendable when making decisions to proceed with the next phase of re-opening, including sending our children in to schools, “or else.”

“Open the schools… Or else!“

Or else: federal funding will be pulled, and the schools will not be able to educate anyone. Families asking to send their children to school are doing so primarily because either they have been led to believe the virus is a hoax, the most irresponsible thing I have ever seen a president do in my lifetime, or because they don’t have a choice because either they are in single income households, or in dual income household they can’t afford to support on one income, and they have children who are either too young, or not otherwise able to self regulate and self monitor enough to do virtual education without adult supervision, and they can’t continue to provide shelter for those children if they don’t go to school. This is far different than a need for childcare.

If a family has to choose between being able to put a roof over their head of their child, and sending them into a building where it is almost assured their child will be exposed to the virus, something is wrong with the way things are being governed. Other countries deal with this virus without families having to choose to be careless about the virus out of a need to survive “the American dream.” For some, the American dream is not the same dream Martin Luther King Jr. referred to in his famous speech. The American dream is a tragedy of epic proportions.

Does the American dream include the right to live?

When I am seeing article after article about people who have already returned to the schools to clean, to prep their classrooms, or to begin music or sport practices, and have had to either suspend those activities or are dealing with active community transmission at the schools already, including a local custodian now on a ventilator, and we haven’t even opened them yet, what business do we have opening schools as a whole, but especially in the “hot spots,” like Florida, which has topped all other states in new cases and broken its own record multiple times, but has ordered all schools to open for the Fall, completely contradicting the recommendations of virtually every heath organization or specialist in existence?

To do so will result in those who are financially able choosing virtual education to keep their children and themselves safe, including the children of most of the people making these decisions. It will also cause teachers and staff who are able to, to walk away from the profession. They are choosing their lives over their livelihood. The educational system will suffer. What will be left in the schools are the children of parents who think the best thing for their children is to go to school, because their mental health requires school services. Because they are tired of being at home. Because they have to go to work and don’t want their children home alone.

That is the system we have established in America. Schools are set up during the hours parents work, and they are staggered has to start times to help older kids watch younger kids after school until parents get home. It is not childcare. It is a system we have set up so that those who choose to serve society by educating children, or doing so during the hours those children’s parents choose to contribute to society in whatever ways they work. If school was some thing done at home, and there was no other way to care for children, our society would have devised a different plan for childcare.

Those who rely on it because we have establish a system in America where the poorest people have to rely on two incomes, and usually can’t survive on one, and possibly can’t survive one or two months without income. Further, the moratorium on evictions and disconnection of utilities in America is a joke.

What few people understand is that they are not waiving these fees. They are piling up your rent and utilities, and as soon as the orders against evictions and utilities shut offs ends, Americans will be expected to pay back all of the missing rent and utilities immediately, and they will no longer be restricted from evicting people or shutting off their utilities if they are not able to catch up the following month. Since most people have not been earning income during the last few months, or have not been earning the same income, this means as soon as the economy is re-opened, many families will go back to work, but will also face eviction and struggle to get back on their feet. Some will become homeless. Some will never recover. Some will commit suicide. Some already have. Some will eventually make it. Many will be dealing with the unexpected loss of family or friends to the virus. Many will be dealing with guilt, wondering if they exposed people they cared about to the virus. This includes the students who will be forced to go back to school in person.

Is it harder to bury your child, care for a permanently disabled child, or to become homeless with a living child? Are these YOUR choices, or someone else’s? Yet?

Those who worry about their children’s mental health at home, will be shocked to discover how their children’s mental health will be affected by the loss of a teacher or a friend, or the anxiety caused by the precautions that dangle hugs and camaraderie in their faces at school, without allowing them to actually touch or receive what they need from friends, educators and school staff.

An article published by a psychologist addressed these issues, and concluded that the psychological damage caused by returning to school too early will likely be much greater than what would be caused by a few more weeks or months of virtual education and delaying the opening of brick and mortar schools.

Of those who are forced to return because of financial issues, family structure, or educational needs, they will be walking into a school knowingly exposing themselves to a virus that 30% of children tested test positive for. While it is rare, the virus can kill children. It can kill children without underlying conditions. While it may be rare, I don’t think the parents who lose children will take much comfort in how rare they are when burying their children.

Still others will not have to bear the experience of burying their children. But instead, will eventually have to retire to take care of their permanently disabled children, who have developed the rare autoimmune disorder that is much like the one I experience as an adult, but in children. I can barely deal with this condition as an adult. I can hardly imagine a child enduring it.

I pray for the sanity and survival of the parents who end up in this situation, that they don’t blame themselves because of the situation they were forced into. That they find a way for their children to survive in the world if they are not able to care for themselves anymore, and they will outlive the parents who are caring for them. Most of who will not have life insurance policies and other securities many privileged and non-minority groups are more likely to have. Many will not have access to mental health care when they need it the most, in the aftermath of the virus. Some will give up. Some will commit suicide. Some already have. Some will survive. Somehow. And probably be judged for how they do it.

They will not understand how they ended up here, when they followed the directions of their government, and tried to be responsible parents, providing for their children’s shelter, psychological well-being, and education. In short, many minority and poor families will be burying children.

“What do you mean, we assumed the risk? What does that mean legally? Our child is gone!”

I can’t help but imagine these children and teachers walking into the school, and picturing people walking into gas chambers in Germany. I guess it would be more like running through a gas chamber with an exit, and hoping you make it to the other side before you have inhaled so much gas that you don’t make it out.

How many will the America history books say were lost to the 2020 Covid Pandemic? Do you think you will escape without losing someone you know? Someone you love? Have you already?

Of the teachers and staff who survive, we will be left with only teachers who manage to survive the virus, which will disproportionately affect the minorities and black teachers and staff, along with substitutes and poor, single or inexperienced educators who have no choice other than to return to school. Ironically, the reason some of them have no choice is because they can’t afford to lose their medical insurance because of underlying conditions. The underlying conditions that make us insignificant when deaths are reported, and dismissed because “they had underlying conditions.” The translation of this is, “they were fat, old, black, or sick.”

Once we lose them, and those who can’t afford to walk away from the profession, how much better do you think the American educational system will be when it’s over? We weren’t exactly leading the planet with our education system to begin with. We were already struggling. Teachers are already underpaid and overworked. And that is an understatement. Now they are expected to risk their lives like a first responder, but with none of the added securities first responders have that provide for their family members in the event that they’re high risk job leaves their families to survive without them. Their families will be left with nothing. It is unlikely they will recover much if they are left disabled because of the long term affects of the virus, which are still being discovered, and which continue to present as much more long-lasting and permanent complications the more we learn.

So again, I ask, if action has been taken which is knowingly going to negatively impact groups of people, in particular, protected groups of people, such as the elderly, or minorities, or disabled people, up to and including their death, how is this action not the very definition of genocide?

I fail to see the difference.

Just Mercy

Please read the following blog post, written by one of my favorite bloggers. It’s one of the best I think she’s ever done. And I love that she was able to make that point without blaming or threatening a different group of people. Bravo!

George Floyd was murdered on May 25, 2020 and the world hasn’t been the same since. The outpouring of support from the entire world and the …

Just Mercy

Viola! Genius clothing hack for Predsters!

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 am fifth from the left in this picture at one of my largest sizes.

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.

You’ve Been Eliminated

“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.