Medical Trauma (When Failure Is Not An Option) | Where I’ve Been in 2023

Hello my precious Muses. I've been pretty MIA on YouTube this year due to a lot of ongoing medical trauma. I've alluded to it before, but today I want to walk you through what's been going on.

Failure has not been an option for me with this medical goal, but that doesn't mean I don't have a failure story. It's time for some failure analysis as we talk about chronic illness, goal setting and motivation, medical trauma, and where I've been in 2023.

Watch the video at the link below, or read on for the full transcript.

If you're neurodivergent or a spoonie and are looking to master yourself and your time in a compassionate way, this is the place for you to be. Subscribe to my channel and hit the bell to be notified (bell dings) whenever I post a new video.

In my last video, I taught you all about Median Arcuate Ligament Syndrome, otherwise known as MALS and that's because I wanted you to understand what my primary goal has been in the year 2023 and why it's so important to me.

My goal for 2023 was to finally get MALS surgery. So to understand how hard 2023 has been, I want to give you a quick me and MALS 101 pre-2023. So as many of you know, I have POTS and EDS. I have been chronically ill since the year 2000, 23 years so far, and I didn't even learn about POTS and EDS until 2015.

In the summer of 2018, I was watching some of the presentations coming out of that year's Dysautonomia International Conference, I learned about MALS. To say that I had found the answer, (Cassie breathes deeply) like the same way when I learned about POTS and EDS and I went, "Oh God, that's me. That's me," I had that same feeling about MALS. It was profound.

As you can guess, I immediately talked to my doctor about it and thankfully since being diagnosed with POTS and EDS, I now have a pretty good doctor. Whereas if I had learned about MALS 10 years ago, I wouldn't have gotten the right expertise and helped right away, but my doctor listened to me, believed me, and I know how much of a privilege that is, and started me on the road towards diagnosis.

My first test was a simple ultrasound to see if there was a disruption in blood flow, but for lots of different reasons, that is not a gold standard way to test for MALS, but this was in 2018, so we didn't know as much back then. So that test came back negative, and as you can imagine, I was heartbroken, but thankfully my doctor understood and we weren't gonna give up.

The next step was to have a CT scan with contrast, with instructions for holding at end-expiration and stuff. Things like I talked about in my MALS video. According to my doctor, the images that came out of that CT scan were textbook for MALS and I was so happy and so encouraged and then the next step, because at that point in time there wasn't as much knowledge about whether or not surgery would genuinely help, and so the reasoning was we had to do another test to see if surgery would help and that's what a celiac plexus block was.

Getting the celiac plexus block ordered was hard and then I finally had it done, I want to say in February 2019, and it was a deeply traumatic experience, because the initial numbing agent to prepare me for the big needles, the actual celiac plexus block needles, didn't do their job, so I felt the big needles and for a celiac plexus block to work, you need to be awake for it, and also they ended up having to redo both needles.

So I went through the double-needle feeling-it thing twice, so four needles. I don't wanna trigger anybody, so I'm gonna move on from that and then to add insult to injury, years later discovered you're supposed to use more of the block numbing agent to test for MALS.

So A, it wasn't enough numbing agent and then B, I sat up too fast after the celiac plexus block and so kind of how numbing agents at the dentist work for me where I have to be numbed so much that my whole face is numb for my teeth to actually be numbed to be worked on.

Well, what my experience was was that numbing agent that was aimed at like mid-diaphragm for me, it drained into my pelvis. So my pelvis was numb, but my celiac plexus area was not and that was heartbreaking because of how traumatic the experience was, but at that point in time, through other various reasons, we thought maybe I could still move on to surgery anyways and so my doctor sent me to the surgeon, who shall remain nameless because, whew, it was a very traumatizing appointment.

Long story short, they didn't believe me and they refused to take me as a surgery patient. So we were back to square one. That was heartbreaking. And trying to figure out what to do next was difficult, because it seemed that all roads pointed to another celiac plexus block, which, as you can imagine, scared the crap out of me, 'cause of how traumatic the first one was.

For those of you who have been around a while, know I have diagnosed medical PTSD, it is from that celiac plexus block that I got the diagnosis of medical PTSD. I have many other medical things that could probably qualify me as a diagnosis, but that was the example I gave to my diagnosing therapist.

2020 roll around and I'm finally, we haven't gotten anywhere, I'm nowhere near the surgery and I get up the guts to have another celiac plexus block, but then Covid hits and that kind of outpatient procedure is shut down for months and months and also I'm high risk and continue to be high risk, so it wasn't safe.

I didn't actually finally get a new celiac plexus block until last year in 2022 and this one went as it was supposed to. So it was still a not fun experience, but it wasn't traumatic like the time before and then there was enough numbing agent in the block itself and I made sure to just keep lying on my stomach for a long time afterwards to make sure it settled where it should and my pain was gone.

I could eat without pain. I had no idea what that would, what that was like, at the time I was 36 and I had never eaten without pain before. I discovered my threshold for pain for eating is incredibly high and it was just gone. The numbing block wore off after seven or eight hours as I was told it would and the pain came back and I was heartbroken again 'cause it hurt again, but so hopeful 'cause this is how it was supposed to go.

That meant I could finally get the surgery and I thought maybe now with the evidence that we had, that the OHSU doctor that I had seen before might act differently, but my primary specialist doctor said, "I'm not even gonna refer you because I know they're gonna say no, because of your weight," fat phobia, anti

-fat bias strikes again.

It is a very antiquated idea that MALS patients have to be underweight. That is incorrect, but this doctor believes that's true. So we went looking for another doctor and we finally found one in LA, Dr. Daniel Shouhed and if you are in California looking for MALS surgery, he's the one to go to, but at the time last year I was still on care Oregon Medicaid here in the state of Oregon and there was no way that insurance was gonna get me to see Dr. Daniel Shouhed and so I worked with a really kind insurance broker to help me find a really good insurance that in theory would allow me to see Dr. Daniel Shouhed and also continue seeing all of my primary doctors here in Oregon that I see all the time.

I work for myself and this is gonna be an important note for the rest of the story. So I got that insurance and the plan was I had an appointment with my referring physician for the beginning of January, so that way I could be referred to Dr. Daniel Shouhed with my new insurance in January of 2023 this year. So that happened.

In February, I had a virtual appointment with Dr. Daniel Shouhed and he was so kind and so wonderful and I was so excited, but he could have seen me and given me the surgery like a month, to a month and a half later had my insurance agreed to cover it.

My plan for 2023 had been to spend the first half a year getting MALS surgery and recovering and then spend the rest of the year creating the second version of my program, "The Action Navigator," but that wasn't in the cards for me.

My insurance ended up approving the procedure but not Dr. Shouhed, arguing that he was an out-of-network provider. I was then told by the wonderful insurance and billing specialist at Dr. Shouhed's office that the next step was to prove that there wasn't an in-network provider who could safely perform the surgery on me.

So myself and my mom, we researched for a few weeks straight and that was hard calling people and trying to get straight answers out of anybody and we gathered all of this evidence that there wasn't, A, that a lot of the surgical providers that my insurance said could do the surgery, didn't in fact ever do that surgery or they did it open, I need it robotic, I have EDS, I can't have an open chest surgery. I would not heal well from that and it would be really dangerous for me, but it ended up being for naught.

I forgot, the other really traumatic thing about this whole process was the nurse coordinator that my insurance assigned to my case, treated me like absolute crap. Like I cried on every phone call. They were so cruel and the opposite of helpful.

So they had approved the surgery itself so they thought the surgery was medically necessary for me, but they did not approve Daniel Shouhed, saying he was out of network. The important detail there is they did not deny Daniel Shouhed. There was no denial for me to appeal. So there was no way for me to legally exercise my right to appeal this decision.

We were hoping that providing all of that evidence would either, it would move something forward, it would either get me the denial I needed or they would see the light and just approve the surgery and negotiate a price with Dr. Shouhed's office, but nope, nope, nope, nope, nope. This was going on for months.

So we were seriously not getting anywhere on our own. So my mom figured out who to talk to in the state of Oregon. I forget the name of this department, but basically it's the people who call out insurance companies on breaking the law (Cassie laughs) and had a lovely case manager who was so kind and so understanding, because of all the work she did, we finally got an actual denial from my insurance in order to appeal.

When she told me about listening to the recordings of my calls with that nurse coordinator, I forget the specific words she used, but she was livid on my behalf and she couldn't listen to them all in one go. She had to take breaks. They were so bad.

My insurance ended up sending me a, oops, my bad kind of letter saying, but not genuinely apologizing or taking accountability for how I was treated. Just saying that they're aware of the problems with this nurse coordinator and they're gonna offer this person more training.

Ugh, I haven't had to work with that nurse coordinator again since, thank goodness. Besides that we finally got an actual denial from my insurance and then we proceeded to actually appeal the decision and as expected that was also denied and then instructed us to request an external appeal, which is where your case is sent to an external review company outside of your insurance company that in theory would have more objective whatever.

One of the things that really frustrated me is the person who denied my original appeal was a pediatrician. I'm like, yeah, that's an expert in MALS. I'm being sarcastic if that isn't obvious.

Long story short, the external appeal was denied (Cassie breathes deeply) and this is the point at which my mom and I were finally able to figure out why this was such an impossible process and it is because I do not have medical insurance through an employer.

There's something called a PPO here in Oregon and also in the United States, a Preferred Provider Organization and those are only offered through employment benefits insurance because they're able to get group rates and discounts on the insurance. I did not have a PPO, I forget the acronym for what I had, but because I am an individual, individually buying health insurance for me, myself and I alone, I do not have access to a PPO.

I could not get in on a PPO if I wanted to as an individual and because of that, that whole like out of network thing is an impenetrable wall. There is no getting through that. I've been spending almost $400 a month on the premium for this insurance and that is including an Obamacare discount of $200.

I wish I had understood this from the beginning because I would have, my partner and I would've just gotten married so I could have gotten on his insurance and then I could have seen Dr. Shouhed early this year, but no, we all figured this out sometime mid to late summer this year.

This has been such a traumatic year medically for me because of all of this and what we ended up doing was falling back on the only in-network provider that might be able to do it accurately and safely. I am currently scheduled for the surgery in January with that doctor, but I'm scared 'cause he's not one of the specialists that online MALS support groups recommends.

Most of them have never heard of him, but he is who I have access to because of my insurance. It's still robotic. He seems to know what he's doing, but he doesn't understand MALS the way current MALS experts understand it, obviously that kinda scares me, but I can't wait any longer. I need the surgery.

It's been over five years since I first heard about Median Arcuate Ligament Syndrome, five years of needless suffering and reminder that I have been suffering with MELS pain since I was 14 in the year 2000, 23 years, but my partner and I did decide to get married, and we got married as of this recording last week. It was wonderful, and so we are going to get me on his PPO insurance as soon as my surgery is over or heaven forbid it gets canceled, and I need to start over again. But then that way, if I do need a correcting surgery, I'll be able to go to Dr. Shouhed in Southern California.

If your medical insurance has prevented you from getting life-changing and or life-saving medical care, write "It happened to me" in the comments below.

If you are watching this and you're less familiar with how traumatic a year like that and a life like that can be, I want to explain to you why that basically was all I did this year. The only other thing I did than that was coach my precious clients inside of my program because they're the ones who are paying for my coaching and expertise and my attention when shit hits the fan. And I'm out of spoons, they get what little energy I can scrounge up before anybody else.

So that's why I haven't been on YouTube, and that's why the version two of my program has been delayed as much as it has. Because I have 23 years of being disabled and chronically ill and extensive chronic medical trauma, both the kind where a more standard traumatic experience like the bad celiac plexus block I described, but also medical gaslighting, verbal abuse by providers, neglect by providers. When you have 23 years of that in your back pocket, every time you go into a new experience, you're gonna be hypervigilant. So you're already gonna be stressed, and then if that new experience happens to itself be traumatizing in some way, two things happened. You're experiencing a new trauma, and you're being triggered about old traumas. It's a perfect storm of dysregulation.

I have experienced chronic suicidal ideation since I was 14 through all of this, and my ideation has been real bad this year. You just want the suffering to end. Carrying the burden of new traumas and being almost, it's simultaneous chronic retraumatization and chronic flashback being triggered. When you're experiencing both of those in parallel over a long period of time, that is so hard on the entire human being. Mind, body, soul. So the gas tanks, I talk about, cognitive, emotional, physical. It's a recipe for burnout, and I haven't experienced this kind of burnout since my Groundhog day, 10 years that I've talked about in other videos.

I have had some skill loss. It has been a huge struggle, and if it weren't for my partner, now spouse, my cats, my mom, my precious, precious clients inside my program, and a few choice friends, I don't know how I could've gotten through this year. And I'm really hoping that the surgery goes as planned and it does what it's supposed to do, and I recover quickly and I can move on with my life. And maybe be without pain, and maybe my POTS would be better if not cured because that's very possible. I'm really hoping the other side of this is wonderful, and I'm really scared it's not gonna be. Either way, I've got a lot of burnout to heal from, but I also know in order to keep earning money from my business, I have to keep doing YouTube.

So with the help of my wonderful assistant Shay coming back, we're aiming for consistency, but we'll see how that is. I just promise it won't be another like four to six month gap in between videos.

I opened this video talking about failure. In part it's for the SEO right, algorithm, but if you have even experienced 1% of what I've been through in your own way or you've experienced more than what I've been through, in this context of medical stuff, when failure is not an option and all you're facing is failure, it's a nightmare. Not giving up becomes a choice you have to make every moment of every day, and I'm glad I haven't given up, but boy, the amount of times I've wanted to over the past year is something else. I'm closer than I was before, but 2024 has the potential to be a rollercoaster for me again. I'm really hoping it's not. I'm really hoping that the end is right around the corner, but as some of you will understand, I don't want to get my hopes up.

So in order for me to move forward, a number of things have gotta happen. I'm gonna be, once my surgery is over in particular and I have recovered, gonna focus on restructuring my days and my time because the way I originally structured my time in the genesis of this work years ago, no longer meets my needs and I have to change it. I know part of that will be leaning more heavily on my wonderful assistant, Shay.

Shay is going to be taking over the weekly reset calls inside of my program. Sometime in the first quarter of 2024, Shay is going to be taking over all of the discovery calls for my program, and those are the free Zoom calls where you, and it used to be me and Shay, but it will eventually just be Shay, get to know each other and see if I'm the right person to be helping you. It's like, seriously, those calls are no pressure whatsoever. Shay's gonna be taking over those so I get more time back in order to work on version two of the program, stay consistent here on YouTube, and then hopefully have more time for the wonderful clients inside of my program to give them the attention and support that they deserve. That's the plan. (chuckles) So there you have it. Where I've been in the year that was 2023.

I mentioned my signature course, "The Action Navigator." It's packed to the brim with tools and techniques for mastering your time, getting organized and offering yourself radical compassion as a neurodivergent spoonie. Version one has changed so many lives, which is why I'm proud to continue offering it until I have the spoons to finish creating version two. It's a lifetime access program though, so that means if you join version one, you'll automatically get access to version two when it comes out at no additional cost.

If that sounds like exactly what you've been looking for, use this link to learn more. In case you missed my video explaining MALS, here it is again, and if you liked this video, hit that like button and subscribe and be sure to share it with your friends. I'll be back soon with another video. See you then.