Not Surprised Anymore

What’s surprising is the amount of sheer ignorance I have to deal with in respect to doctors. I’m still trying to find out if it’s intentional, or if this is how it’s always been.

Wednesday was IVIg. I felt worn down. Beaten. Tired. As the nurses came, the usual thing happened. Do fluids, draw labs, then IVIg. Susie is probably one of the most patient nurses I’ve ever met. She’s smart. Has a personality, but above else, she listens. She documents. She’s the same nurse that was coming out during the Lyme treatment. Infusion went fine, just another infusion. Nothing to write home about.

The typical labs that get drawn are CBC/CMP/IgG. So that Sarid can keep an eye on things. The week prior, my labs that were drawn at infectious disease showed promise, everything was actually in range for once. But the results of this lab, doesn’t surprise me at all. As the notification came in, I half expected it to look like shit again, I wasn’t wrong.

WBC is back up to 16. Neutrophils elevated. The typical shit I’ve seen for the past what, 3 years? The medical term for this is Neutrophilia. From a lab perspective, this means my body is fighting an infection. These aren’t numbers you can fake, or make up. But this is the common theme. Since 2019, I’ve yet to ever see 3 months of normal labs. Whether it’s high WBC, CRP, ESR. The point I’m trying to make is that all these labs are fact, proof.

What’s it proving? That my body is fighting. Constantly. Time and time again, my labs indicate that there is an infection. What’s the response from doctors? You guessed it, nothing. The more I look at my labs from the past 3 years, doctors just clearly downplay them. Oh it’s nothing. There is a reason that labs have established “normal” levels. Typically most of them are a range. But the consistency that I see, is I’m always outside the normal windows. Yes. I’m not normal. I’m sick. Throwing weird fevers, night sweats, pain. Pus coming out of my face, in my mouth, behind my ears. Yes. I’m still pissed at Quest for losing the cultures that Dr Lupo took. Why? Because it would’ve helped prove what I’ve been screaming at doctors all along.

It started with that idiot dermatologist that took out 8-10 cysts on the left side of my face. Of course she fucked up the lab orders. But to make things even worse, after the procedure, was when something woke up in my face. I’m sure she spread the infection more.

When I returned to their office to complain about feeling ill and sick, they immediately backpedaled. Oh there’s nothing wrong. Everything is ok. It’s not. My heart is racing. My left ear really hurts. Fuck, my whole face for that matter.

3 days later, I was admitted for sepsis. As I explained to the Dr, showed him my face, how swollen it was. My left ear just pulsed with pain. I’m pretty sure what she did during the procedure, is what pushed the infection into my parotid gland, and my mastoid. The infuriating let down became more apparent when I called their office, demanding the results of the cultures and biopsies. “Oh the Dr didn’t fill out the correct forms, placed the specimens in the wrong container, so everything that was sent in was rejected”

I sat in dismay for 10 seconds. But same theme. Ignorance. I’m surrounded by it. Why can doctors be doctors if this is the “treatment” they provide. But their mistakes are always forgiven. There’s no accountability. No remorse. As I pushed this Dr, she immediately turned me to the actual doctor. Who quite frankly tried to dismiss everything. Again, downplaying the mistakes. Attempting to misdirect that this was my fault. As I say in her office I just became more frustrated with “the process”.

When she started talking about the psychological aspect, it was quite clear that she was covering up her physicians assistants fuckup. And that’s what this is. Doctors covering other doctors asses. That’s the one thing that has always stuck out since I got sick. Trying to explain their actions in a way that in the end, they always try to spin it back on the patient. Because heaven forbid people make a mistake, and be held accountable for the fallout. At the end of the day, it’s me that has to deal with the fallout, not them. No remorse. No apologies. Sweep it under the rug, make the patient feel like they caused the problem. Repeat. I’ve seen and experienced this time and time again.

Had she not fucked up the pathology, the cultures, or just removing the cysts, I probably wouldn’t have gotten so sick. But here we are. 5 years later, still dealing with the fallout. Same thing with Quest, and losing the cultures. That could have been a huge piece of this puzzle. But as I talked to Dr. Lupo, he knows that it was there. He removed it. He documented it. But he was accountable. He documented it in the record that he did pull this yellowish pus out behind both of my ears. And that quest in fact lost the cultures. That’s more than what the other place did, because to them, if they documented it properly, wouldn’t have to look like a lunatic when I tell doctors that this happened.

Think of it as a custody of “information”. But this custody doesn’t remain with me, it’s what should be in the medical notes. Hey x happened. Because when questioned, just go read the notes. It did happen. It’s just like when during one of my “allergic” reactions, we went to the ER. That’s when the nurse royally fucked up and injected epinephrine directly into my IV, instead of in my leg like he was supposed to. I made the Dr document it in the medical record. That this happened. And yes, it’s there. When I bring it up, or talk about it. They can go look at the note and see that I’m not making up what happened.

It should be a medical professionals #1 thing, is to keep the medical record as accurate as possible. That way the next person who looks, sees that this happened. It’s not the patients responsibility to have custody of this information, this is the job of doctors. But the reason why they don’t document things the way they should, is because of accountability. If they write it into the record, that holds them accountable. So if something went wrong, or there was a finding that wasn’t desirable, let’s not document it. Because this might come back to haunt them.

Why is it so hard to just document fact. What happened. No, instead. Let’s preface false narratives into the record so that when it comes down to accountability, it’s my word vs theirs. It’s just like when I went to UC Health after all that happened with my face, since it wasn’t documented properly, the doctor treated me like I’m crazy. Yup I’m making all this up. Oh all this pus coming out of my face, the bumps, the pustules, “it’s just a little acne” and you’re overreacting.

The reason why I’m overreacting is the amount of gaslighting, ignorance of doctors, lack of accountability, and clearly the medical record I have has been positioned in a way so that nothing can spin back to them. And I’m just tired of dealing with this at every appointment. My word vs theirs.

Since when pathology, labs, fact, evidence just become someone’s uneducated opinion on “what it is”. There is a reason medical research exists. There’s a reason applied sciences have taken a backseat. It’s a simple answer. It’s not big pharma, it’s insurance companies putting their interests, and the interests of their shareholders above what really matters most, patient care. The more I think about it, the American medical system, is just quite simply rigged against the patient. On multiple levels.

If you’ve been following along with me on the blog, you can clearly see that I’m somewhat using the blog as my medical record. I’m not lying. I’m not making things up. I’m documenting fact. I’m being accountable for what this is, and ensuring that I have something to look back on to see what happened this day. Because when you become chronically ill, everything begins to blur together at some point. Because at the end of the day, it’s my word vs theirs. Everything that’s happened, that I’ve written here, has happened. No embellishments. No narrative. Since 2017, it’s just been a literal tailspin. This all started back around 2010. That’s when all the weird shit happened. I just wish I was smart enough back then to do what I’m doing now, documenting everything.

I did return to work this week, and it’s been an uphill struggle. Going from where I’ve been, what I’ve gone through to this point , and what I’m still having to deal with on a daily basis with respect to my health. For the most part, from what I can tell, people who haven’t walked a mile in my shoes, they have no idea how hard this really is. They never fully understand nor can relate because it’s not them that’s had to go through all this. Being chronically ill, it’s literally a second job in itself. Finding the balance between where my focus lies has changed. I’m concerned about my well being, work can wait. Ever since I moved to the new group, it’s enabled me to focus really on what matters most. Me.

I’m grateful that this new group shows compassion, understanding, and above all else patience when it comes to what’s going on with me. Because they all realize that this is real. This is what’s happening. Not just discarding it as “oh you just need to take better care of yourself” mentality.

Up until this point, I always put myself last. But now that I’m putting myself first, a little selflessness is necessary. I’ve always put my needs behind the needs of others. Yes, you could consider me as a selfless person. Always willing to help others, when in reality, I should be focused on myself, and my wellbeing. I’ve learned to listen to my body, I’ve learned to understand the warning signs that my body has been throwing out for far too long. I just ignored it. Always thinking that someone will take care of me, or the problem. I’ve also learned to advocate for myself. Be assertive. Be annoying. Why? Because that’s the only way you can get others to pay attention. But as history has shown me, the wrong people are paying attention. The past year has taught me to not back down. That I won’t accept “this” as the new normal.

I just have to stay diligent keeping those people responsible for my healthcare to stay focused on science-driven fact. Not taking opinions into account. The false narrative that causes people to think a different way, rather than a direct approach of what do we do going forward. The past is the past. It happened. But what they don’t understand, is that years later, I’m still dealing with an illness that nobody has really wanted to solve. It’s because they don’t live every day in this body. They don’t feel the pain that I’ve gone through. It would be an amazing medical advancement to be able to snapshot symptoms, offload them to a usb drive, and plug it into a doctor, so that they can experience 30 seconds of the literal 10 years of hell I have been through. Basically transfer it to them temporarily, and they would quickly realize what it’s like to be chronically ill. To have to go to the lengths that I’ve had to go through to get where I am today from a health perspective. Maybe years/decades down the road, this will become a diagnostic method.

Yes. There are people out there that consume a doctors time with made up symptoms. People who are drug-seeking, people that have a mental illness which causes psychosomatic tendencies. Which in the big picture of things can wear people down. But the one thing that they lack is proof, evidence.

Where I differ, is I have data for days. I can prove beyond a reasonable doubt that this is all real. But that just leads me to the unknown answer to the question, that I ask myself all the time, which is:

“How can I communicate this effectively to doctors?” “How can I get them to just do their jobs?”

The voriconazole is definitely starting to work. My face feels much less swollen. Even inside my mouth. The cysts that I could feel on the left side of my face have started to reduce in size, so that tells me this is the right thing to be on. That’s what my body is telling me.

Other pieces of real data that I can share, is that over the past 5 weeks since Hepworth’s surgery, is that my heart rate overall has made a significant improvement. Before, my heart rate would be all over the place. It would constantly speed up, slow down, race for no reason, and when I was at rest, it felt like it was just in marathon mode.

Since the surgery however, my heart has slowed way down. Almost as if that was a warning sign in and of itself. Whereas before, my sleeping heart rate would average around 100, now? It’s 65. When I’m up and moving around, previously my heart rate would be between 120-150, whereas now, I’ve yet to see it go above 110. So that’s a measurable difference. I’m really glad I got an Apple Watch, because this just only proves things and documents everything for me without having to manually look/check. At minimum, my watch would warn me 10-15 times a day that my heart rate was out of control. Again, since the surgery, it hasn’t gone off once.

The next biggest difference that I’ve noticed is my blood pressure. Before the surgery, my blood pressure was always high. 160/120 etc etc. Now, I’m sitting where I should be. Before my ivig, it was 117/82. Where it should be.

You can just see the amount of stress my heart was under due to the infection. But since the surgery, everything is starting to trend downward. Which is something I’ve been looking forward to for a very long time. It’s almost like the high-alert status that my body has been throwing out over the years, is finally starting to go from Defcon 1, to at least a 3. And I’ll take that.

From a sleep perspective, I’ll be honest. 2 years ago I would average about 3-4 hours. Tops. Constantly waking up. Literal insomnia. With the pain being the number 1 driver, as well as just the constant worry of “am I ok” would just keep my body awake. I never felt rested. I would always wake up tired. Since the surgery however, sleep feels more fulfilling. Like I am actually at rest when I sleep vs the “always on” feeling that I grew accustomed to.

Sleeping is extremely important, but if you aren’t at real “rest”, your body cannot repair itself. While you sleep, your body does take the time to repair itself. But if you don’t get to that “restful” state, your body can’t do what it’s supposed to do. Prior to the surgery, while sleeping, my heart rate would just sit around 100. It wasn’t stress, it wasn’t anxiety, it was the obvious infection my body has been dealing with for a very long time. Typically when you sleep, you get a dip in heart rate. Where your heart should slow down when at rest. Only problem is, is that for the past 2 years, there was no dip. Just a flatline. But since the surgery, at least for the past 2 weeks / since I started the voriconazole, every night my heart is finally dipping down.

I’m even breathing slower too.

So you can clearly see, that my body was in absolute trouble. If I look back 6 months ago, everything was elevated. Everything wasn’t normal. If this doesn’t prove the amount of hell I was enduring, I don’t know what to tell you. But his should tell you to listen to your body. It’s the one source of truth you can rely on. It will tell you what’s wrong, where it is. The only things it can’t tell you, is what it is, or how to fix it.

Yes my face still hurts. Jaw still hurts. But it’s nowhere near what it was 6 weeks ago. I’m pretty sure that the abscess that Hepworth pulled out of me, was probably driving 90% of what I was going through. Having your body spun up for so long, and feeling the way I feel now, it’s night/day.

I wish that I could say that this is over. I wish I could tell people that I feel fucking amazing. I wish I could talk about SOMETHING ELSE for a change. But we aren’t there yet. Hopefully this week when all the rest of the labs come in, will be convincing enough so that I can prove that the antibiotics/antifungal is the right approach. As I told Dr Kaufmans assistant, I don’t want to be back here again next year having the same conversation. I would give anything up to never have to deal with the bullshit that I’ve had to deal with. I want to hit this from all angles. All at once, the final push.

Maybe by this time next year, things will be different, I do remain optimistic, however, with how things have gone in the past, I’m not going to count on it. I still need to listen to my body, and advocate to the doctors that the problem isn’t fixed.

Time will tell. Sorry for the rant, but this to me is all necessary.