The Latest

 Quick and dirty list to catch everyone up:

1. Saw the pandemic coming because I read literally everything and caught wind of it early. We locked down and have avoided covid so far. I put everyone in N95s asap. I did not wash my groceries, though. It's a coronavirus...fomites aren't going to be huge. The CDC did a shit job and continues to be shit despite the change in administration. I mostly follow Israel's science...they don't do a lot of spin.

I will say, appropriate or not, I chuckle at the covid long haulers who are just shocked at how bad medicine is. I feel for them, but it's like, where have you people been? This isn't new. You haven't discovered anything we didn't already know. It's like knowing hell is bad and then complaining when you get there. What did you think was going to happen?

Welcome to chronic and rare disease...a physician will be along shortly to tell you it's all in your head.  

I do hope they'll drive some good innovation for the rest of us though. But the fact so many physicians are already defaulting to telling patients it's a psych thing is concerning...says a lot more about the group think and bias in medicine than it does about patients' mental health.

2. Grew a synovial cyst that pushed on my spinal cord and had to be removed. I believe somewhere on this antiquated blog that no one reads that I mentioned a hip injury. Nope. It was a cyst on my spine. A fairly unusual thing given my age and also a very strange looking cyst per my surgeon but biopsy wasn't exciting (see #5 for more on that).

3. Kiddo is showing signs of inheriting some of my crap, starting with PCOS and  the same weird reactions to Metformin. She was also bit by a tick and had Lyme which had a delayed diagnosis making it all worse.

(No. We don't do woo. There's no evidence I can find that the herbs and whatever the alternative quacks are selling work and I'm not willing to experiment on a child. Unfortunately, mainstream medicine isn't much better with Lyme. 

 She was diagnosed at a major international medical center and we did the doxycycline. We followed the science, but even that required me advocating my ass off. Unfortunately, the delayed treatment means we don't really know how much better she'll feel. 

Despite a classic bullseye rash and living in a wooded area, her peds failed to diagnose her even though we asked specifically about Lyme.

As you can imagine, I was furious. This was all preventable.

While chronic Lyme isn't yet officially recognized, if you are paying attention it's clear there's some level of long term something with this for some patients. And now my kid is on track to deal with an illness that is often denied by physicians or used to deem a patient 'mental', in part because of how extreme the woo gets with Lyme.

What a terrible thing to condemn a child to. Shame on the pediatricians. Shame on the woo quacks. Shame on mainstream medicine too. Everyone is failing patients.

I see the nuttiness with the patients too. I had to join all the groups. The group think is particularly...well, ignorant I'm sorry to say. Lyme has attracted a lot of folks who probably do have a psych diagnosis OR another medical issue altogether and are falling through the many many cracks in the medical system. They are the least sophisticated patient population I've come across for some reason, but even so, if you have more than one brain cell, you can clearly see the science is also lacking and there IS something going on.

But medicine uses the Lyme nuts as an excuse to ignore their shortcomings and shirk their duty to care for patients who actually do have Lyme. Do better.)

4. We are living in and DIY remodeling a massive Victorian house. We love it and we hate it. It's been a major life change and because of the synovial cyst, I haven't been as much help as I would've liked. But it's a fun project and it kept us busy during the pandemic. No time to burn out or feel down when you need to gut an almost 200 year old house down to the cladding. You're too busy to worry about much of anything. So there's my mental health pro-tip for you. Buy a gut job. 

5. I finally was referred for genetic testing. I don't know why medicine was such a bag of dicks about it, but four years later, I'm finally getting what should have been done a long time ago. I do actually qualify for genetic testing, and of all things,  VHL is actually possible.

If it surprises you that I was right, you haven't been paying attention. Medicine continues to be terribly fallible. It's really horrifying to see how much fail there is in the science and the system around the science. Doctors don't just gaslight patients, they gaslight themselves into thinking they know everything. Wake up!

If * I * can see the patterns forming, but the doctors can't and * I'm * right, what does that say about medicine? Nothing good! 

And how is it that it's never the specialists or PCPs facilitating my care? You know who has helped me the most? My OB and my kid's specialist. Yes! My kid's doctor is doing more than my own physicians!  It's not the GI doctors or the PCPs or the endocrinologists. It's random folks outside the specialty my problem is in. That's INSANE! 

Again, do better!

I'm tired of dealing with medicine's bullshit. I hate living in a world where I'm somehow more competent than people with way more education than I'll ever see and where the person who will help is not the person who's supposed to help and where it's starting to hurt my child. It's exhausting, and I can never trust anyone to know what the fuck they're doing, and all I can do is tell my kiddo to make sure she knows her science because she can't trust the doctors to.

There are not enough smart AND awesome people in the world. Not nearly enough.

Anyway, I found the VHL diagnosis years ago and was struck by how much overlap there was with my medical history. I knew I needed genetic testing, but until this past week, I didn't know my family medical history qualified me to be tested for VHL. Huh.

Of course I may not have VHL and I can even see the test coming up negative. But testing will tell. It's just interesting to see everything line up for it even superficially.

Right now I'm waiting on a call back to learn what all testing they're going to order.

6. Latest liver MRI was stable. The tumor that was acting up has resolved (thank God). The other tumors aren't disappearing but they aren't getting worse either, which is good. So hopefully I won't need as many MRIs going forward. 

It turns out the contrast is a massive asthma trigger for me--because you know with this body, it's always gonna be weird in some way--and slamming back 150 mgs of prednisone in one sitting was WOWZA. I think I destroyed all inflammation in the known universe for about a week. Yikes. I'd like to not do that very often. Please and thank you.

7. I continue to participate in what medical studies I can for the various things I've been diagnosed with, however, the researchers have their own agenda and don't take feedback from the patient community on what science would actually provide an improvement for us. I really wish there was a way to truly integrate patients into the research side of medicine in a more material way. We are just told what to do and when to do it and no one is much interested in what we have learned on our end of the experience.

For example, there's a possible relationship between PCOS and hepatic adenomas in the patient population. No one cares. The research isn't looking. Correlation isn't causation, but you don't know that until you do the damn research.

And that's the latest. If you or your loved ones are sick...good luck and godspeed.