eosinophilic granulomatosis with polyangitis

The Great Medigasm -Part 2

In part one, I spoke about the medical experiences that have led to clinical PTSD and anxiety about medical appointment, especially when meeting new doctors. I probably expressed how if it all possible, I always take a second adult with me to medical appointments because there will always be more than one of them, but it’s so easy for them to say you hurt something wrong unless you have a witness present. But this time I expressed that I met a new doctor who gave me what I described as as a new term: a medigasm.

Even as I finally finish the last of the labs on the last possible day I can do them before my appointment, after putting them off since March because of fear of going to a lab among the virus, I at least am able to take a little bit of comfort in knowing this is my new doctor, and now I can see him virtually. Finally, a rheumatologist is on my case. With a neurologist. It’s like medical Christmas! Now prayers that nothing happens to the insurance and all of these doctors remain on the same or another plan together. I’m starting to just have anxiety about losing doctors now.

Below are all of things he said that, each on its own was shocking enough to rock my world, but together, left me speechless and wondering if I was about to wake up from a dream. I felt as if someone had told him all the right things to say to make me think I was crazy, or that I was on candid camera. If you’ve experienced all that is the world of a professional patient, you will understand each one of these statements and why they are shocking. Imagine getting them all at once.

1. “I have several patients with your condition.”

What? I have never even met anyone else with my condition. My pulmonologist has one other patient with it. That’s the extent of people I even know exist in the area with this condition. It is diagnosed in 1 out every million people, so many doctors don’t even meet someone with it, and it isn’t in their norms wheelhouse unless they’re done a felllowship at the Cleveland Clinic, where this condition is studied, as my hematologist did. But even the rheumatologists I met had to admit they did not have any patients with this condition. So hearing that this doctor has several, while also hearing very clearly that he understands this disease the way you would imagine doctors understanding medical conditions without having to research them. That alone was enough to shock the conscience.

2. “This is not about my ego, it’s about your health.“

I’m sorry can you repeat that? Louder for the doctors in the back.

3. “I’m an expert in medicine, but I’m not an expert in your body. You are the expert in your body. I need your expertise to be able to do my job.”

OK, now you’re just poking fun at me, aren’t you?! If not. I have a liar of doctors who could use your guidance!

4. “I am never going to treat you like you’re crazy.”

I am not sure that’s entirely medically responsible. If I wasn’t crazy before, I am most definitely crazy now, after dealing with a bunch of doctors who are not you. I am heavily medicated for your protection. You have been warned. But thank you for giving me the opportunity I wish others had given me to try listening.

5. “I get the sense you can hold a lot. I can tell you are in more pain than you are telling me. I have a feeling by the time you get around to asking me a question, it’s way out of the spectrum of what is normal and I need to listen.”

🥺🥺🥺 I have said these words to people, trying to get them to understand my pain tolerance. How did he know? I didn’t tell him. But this has happened repeatedly, to the point that most people who know me enough to know anything about my medical condition have probably heard about this issue. It has been repeated in many settings. The most telling was the one when the kiddo‘s father went after the nurse to explain that my tolerance for pain was much higher than normal people, including his, and that if I am crying, that means something is wrong. Got to give the man credit there. 🙃 He was not wrong.

6. “If you’re telling me something is wrong, I don’t care what the numbers say; it means we need to keep looking to find out what is going on.”

Holy shit. I mean, just holy shit. Excuse my language, but there is no other thing I can say at this point that expresses my shock that this guy would actually pay attention to something if the labs come back showing that I am healthy.

7. “I’m so sorry a doctor treated you that way. What an awkward situation to be in.”

OK I’ve heard that’s weird. I’ve heard a sort of stunned silence because the doctor didn’t know what to say about what would happen to me. I’m sure as a professional, they were wondering in the back of their minds if I did something to provoke it. But this is the first doctor who actually acknowledged comprehending how completely uncomfortable my experience would have made ANY patient. He actually recognized the emotion I would’ve felt in that circumstance.

8. “Thank you for bringing me these records. These will help a lot. They’ve given me a lot of background information to work with.”

He said this while actually looking at the records and making reference to what they said! To be contrasted against the many doctors who say thank you for bringing them records and stuff them into the back of the file, never to be seen again. And he actually understood why they were each significant and why I brought those specific records and not every record I have. This showed me that he understood my disease. That is a rarity in itself.

9. “Oh you came from this doctor? I love him! I work with him all the time. I love working with him.”

One of my dreams is that all of my doctors will communicate with each other the way my late husband’s doctors communicated with his oncologist at meetings to discuss his treatment plan. This doesn’t happen for people who have an autoimmune disease covered by a rheumatologist, who is usually primarily set up to treat arthritis type diseases, and only sometimes deals with other areas like vasculitis. I still don’t understand why there is not a specific position to deal with autoimmune diseases like an oncologist, and we are left to see specialist after specialist and try to get them to communicate with each other, which sometimes leads to inferiority/superiority/insecurity issues and may even cost you a doctor. You would be surprised how many doctors operate like teens or young adults when it comes to inferiority/superiority complexes, and will not hesitate to put something in your medical record out of spite, that will hurt you when subsequent doctors review it. You can tell me this doesn’t happen, but as a retired professional, I know this happens. I would hear about previous attorneys, and I would carefully evaluate the client to try to find out if the other attorney was actually a bad attorney, or if it was a bad client and likely to be a repeat. It’s a valid concern. And a very irresponsible and immature way for a doctor or other professional to respond. It was such a relief for this doctor to understand and acknowledge how Trumatic it was to go through that experience when I was already going through a Trumatic medical experience to begin with.

10. “You’re on this drug? Already? I was one of the first doctors do use that drug when it was released.”

😳 Are you serious!? 😳 It turned out he had been trying to figure out how to get his patience on the auto injector, which my pulmonologist had just gotten me approved for. He was very excited to know there was a way to do it, and was very excited that I was already on that treatment because that would’ve been his recommendation. He knew extensive information about the studies, and from there on, his knowledge surpassed mine. That’s the way I like it.

There were so many wonderful things he said, that I’ve decided to make this into a three part blog. I have written a lot of blogs and posts complaining about doctors, and they have taken a lot of space. But never have I had so many good things to say about a doctor that I ran out of space twice. But this is that time, and I’m willing to give it the time and space it deserves. Because I’ve noticed good doctors have no idea what other doctors treat us like. And we deserve better! So demand it! Wait for it. It took me 3 years. One step at a time!

Stay tuned for “The Great Medigasm! Part 3”!

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.

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.