Underlying conditions – I'm Still Breathing!

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”!

To Open or Not to Open…

“We, the [Parties], of the United States, in Order to form a more perfect Union, establish Justice, insure domestic tranquility, provide for the common defence, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.”
The Constitution for the United States of America

What? Is that not what it says? Wait… It’s “We the PEOPLE,” not “We the PARTIES”?! 🧐

We live in times where nothing can be discussed or decided without making every issue a blue or red issue. Left or right issue. Rich or poor issue. Have or have not issue. Privilege or discrimination issue.

It should be no surprise to anyone that there is a debate about opening the states back up, and different states are going at different paces, with a definite leftist/blue identity leaning towards staying closed, and the rightist/red identity leaning towards reopening.

I have been exhausted by political parties for years, and I left mine to become independent for that reason. This pandemic and the reaction to it has been all of the evidence I need to know I did the right thing. Until people stop looking at this as a political issue, and start listening to the people with medical degrees, since we are discussing a medical issue, it’s like we are in kindergarten and we are being taught to read by being given numbers.

Information/Transparency

The medical opinions should be provided. And they should be provided independently of any concern about the financial well-being of the country. Working from that, the government needs to do whatever it needs to do in order to try to manage the financial devastation. The fact that there is financial devastation does not change the medical facts.

Here, in America, that’s not how it works. Instead, we remove medical professionals from meetings, remove them from their jobs, remove them from public sight and earshot, while everybody screams and cries and stomps their feet at the other side making wild accusations, usually directed at a political official from a different party.

The struggle is real… For everyone.

It really seems like there’s only one way to resolve everything when it comes to reopening. Here’s what we have.

Some people think it’s time to re-open and some people don’t. Those who think it’s time to reopen fear for the collapse of the economy. And for the losses of their income, homes, and life’s work/careers. Some worry about mental health issues, and that being quarantined for too long it’s going to result in increased suicides. I can’t argue that fact. These are valid concerns. I’ve seen some measures put into place to help for people who need help due to depression and anxiety caused by this.

Asking people to stay home to protect everyone else, especially elderly and immunocompromised people, poses a very real risk of financial ruin, depression and suicidal inclinations for some people.

But asking elderly and immunocompromised people to go back to work too early, poses a very real risk of death or permanent disability.

Those who don’t want to return yet fear for their lives, and the lives of their children, their loved ones, and even people they don’t know. If they are forced to return to work, they return to an environment where we have seen report after report after report of people who simply don’t tell people they are sick because they don’t want to be quarantined. We take the biggest risk we’ve ever taken, and some of us will lose that battle, and each time, another family will grieve someone before they should’ve had to. That’s not a small ask.

So is there a viable solution? I think I know of one.

Why can’t we do both? (Test Run)

It doesn’t appear science is going to answer the question. But maybe we’re just not applying science in the right way. Some people are very hands-on. Maybe it’s time to let them try a lab experiment. Some people are very hands-on. Maybe it’s time to let them try a lab experiment.

So let’s try it. By volunteer basis only, everyone who has complained about staying home because they need money, and don’t believe in socialism, (at least at times like this, when it is necessary to implement some socialist concepts,) should volunteer to return to work on a temporary basis.

Those who choose not to, should continue to be allowed to stay home while we try this experiment out. There are many jobs to be had, because as long as a significant portion of people are remaining at home, there are delivery services galore, and lots of services being used in order to work from home. Just like there are child care services being provided for children of essential workers, people who are against staying closed can take their children to childcare centers run by other people who are against staying closed.

That can be our test run. It doesn’t require anyone who is not willing to be at risk to put themselves at risk, but also doesn’t require people who don’t believe there’s anything to fear to stay home. They can go live their lives the way they would if everyone had returned. They should feel safe, because I’m sure there are no people who will ignore the regulations and recommendations.

Reevaluate

Then evaluate the situation after a month. After a bunch of people have re-joined the workforce. see what the numbers look like. This is mid May. If we find out by mid June what happens if we open up right now, we find out on a smaller scale, and only those who chose to go back are risking anything. Nobody is required to risk their lives to find out if it’s safe. Only those who choose to be out there.

If it proves safe, the rest of us can re-join society with those assurances and feel better about it. Maybe provide one more stimulus check for this month, and those who choose to go to work and be our test cases get the check as well, so they get a bonus for being a test case. Meanwhile, nobody who has to stay home because of their health, age or other risk, goes without basics.

If it proves not to be safe, whether it’s because the virus is too strong and we just moved too quickly too early, or whether it would be safe, but for people who refuse to wear the masks and follow the rules, and even play games by licking bottles of sanitizer or purposely coughing on people, then we scale back, but hopefully this would mean we could do so before the potential disasters, such as overwhelming hospitals, becomes too high.

If we have the space now, to handle an increase, this would allow us to test that theory, but on a smaller scale than if everybody went back all at once. If we moved to early, hopefully with part of us still not going out, we could still handle the influx of new cases. But having part of us stay home will keep it from becoming the disaster it could be if everybody goes back all at once.

This could also potentially save the lives of people who are at increased risk, who might be otherwise required to return to work or lose their jobs, by giving them a few more weeks to find out what happens, and to feel safer about returning to work if it all goes well.

We can’t have a draw.

My instincts tell me this will never happen. Because somebody has to win. There has to be a clear winner and loser. We will continue scratching each other’s eyes out until there was finally a date declared when everyone can go back to work. The date will be too late in the minds of many, and too early in the minds of others.

For the sake of every person living in America, I pray whatever date that is proves to be the right one. That we find out the measures we have taken have been effective, and we never reached that terrifying point we were worried about, where hospitals reach maximum capacity. I pray they are right.

I also pray for everyone who is in a high-risk category, and dreading the idea of going back to work before you believe it’s safe. I have been in the position of having to choose not to work because of health issues. It was a nightmare. I have the scars to prove it. But I also know that it doesn’t matter if you have a job, a home, a car, and food… if you’re dead.

Is that a whistle I hear out there somewhere?

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