I’m a 45 year old involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 11 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
They have all suffered to some degree due to my health, but the older two weren’t strangers to that, since we lost their father to melanoma skin cancer that spread to his lungs and brain. Now I am left being a professional patient, and knowing what my late husband went through. Likewise, I’m terrified to leave the one daughter who won’t have a parent left, alone in the world.
I have learned which family isn’t family, and which friends are, and I do feel hope and confidence in the few people who already care about her, and I know she will never be alone. She’s a fighter. Like her dad combined with me, which I’m not going to lie, is a bit terrifying at times.
I was approved for social security disability due to a very rare autoimmune vasculitis, Churg Strauss Syndrome. It is diagnosed in only one out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. In connection with this condition, which often occurs in people who have had a lifetime of allergies and asthma, and been dependent on Singulair and or prednisone, I also have severe asthma with refractory bronchospasms (meaning it does not respond to most medications), hypertension (which becomes pulmonary hypertension during a flair), and most recently, drug induced “pre-diabetes,” if you believe in such a thing. (I consider that the equivalent of being a little bit pregnant.)
It has been an incredible journey, both from the beginning until diagnosis, which took approximately three years, from the time I knew what it likely was. Seven years from when the first symptoms began in 2008, and since diagnosis, learning to navigate the terrifying world of government medical insurance coverage through Medicare, and trying to find qualified physicians who are willing to take me on. i’ve had to learn quite a bit about medicine having such a rare condition, which makes me a difficult patient. But my best doctors are the ones who are not offended by my knowledge, and appreciate that I understand, as well as being willing to help when I want to understand more than the average patient. I asked more questions. I make more suggestions. But I am so grateful to those doctors. They have saved my life more than once. I had four surgeries for my sinuses in 2009, 2011, 2012, and 2015. Whatever the ENT did differently during the last surgery seems to have helped significantly and I have not had another one. I still get the infections, but at least the polyps have slowed their growth. I died once. Many years ago. Due to an allergy attack that turned into life-threatening anaphylaxis. Nobody even told me my heart had stopped. I was looking at medical records later and noticed one said cardiac arrest. It seems like that’s something they should maybe tell you, right?
My condition is sarcastic and ironic. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s).
And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring. Especially when you are in my life, and the adventures that nobody can ever believe happened to me. Follow along, and you will begin to understand eventually. A sense of humor is definitely a requirement. If you don’t have one, this is not the blog for you.
My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can at her school. I can’t get fired from that, and after volunteering one day, I can take another day or two to recover.
Rather than posting novels as Facebook statuses, I decided to take a stab at blogging. It’s always an adventure. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.
Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine.
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.
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.
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.
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.
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.
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!
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!”
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.”
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.
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.”
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.
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.
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.
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.
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?
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 …
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.
22 BLACK LIVES LOST TO GUNFIRE SINCE I ATTENDED LT. DEBRA CLAYTON’S SERVICE WITH MY DAUGHTER IN 2018. THEIR NAMES WONT RECEIVE A HASHTAG FROM MOST OF AMERICA BECAUSE THEIR BLACK LIVES DONT MATTER BECAUSE THEIR BLACK SKIN WORE A BLUE UNIFORM.
LT. DEBRA CLAYTON WAS KNOWN FOR HER WORK WITH CHILDREN AND SHE WAS ADORED BY ALL WHO KNEW HER. SHE WAS WITH THE DEPT THAT PRIMARILY RESPONDED TO THE PULSE TRAGEDY. IT WAS THE LAST LEO SERVICE I’VE ATTENDED.