Things are going well with the continued treatment for my chronic illnesses and the mental health problems that come with it. I’m on an effective treatment that keeps me moving, strong, and in less pain. I’m able to manage pain well without drugs because the VA finally covers massages. This journey through the U.S. Healthcare System is filled with bridges, trolls, and mountains.

Before COVID, I was being treated with Remicade. Things were going well. I just did the math with my fingers and I’ve been using Remicade since 2007, it’s been fourteen years. The reason I stopped is because a large calcinosis rock the size of half an egg broke through the skin on my leg and took eighteen months to get out.

It sounds crazy to me too, and it was my own leg. When it began to come out, I thought it would just fall out, but this rock had been accumulating for years and it was a bunch of smaller rocks that made one big rock. My skin didn’t open as fast as I thought it would and surgery Was a no-go because this was happening on my shin and there surgery would be an even bigger risk of losing my leg, so I had to ride it out.

My leg became infected often because Remicade is an immunosuppressant. I was stable so it only made sense to drop Remicade until this rock cleared. So eighteen months pass and I was doing well off of my medication. I remained off any immunosuppressants until a few months ago.

I don’t believe it was a mistake not to start Remicade. Fourteen years is a long time. I was hoping that if symptoms showed up, there would be something that works better and of course, I was right.

2024 was a crazy year. There were a few close calls, and for months my immune system kicked pneumonia and Covid’s ass. Unfortunately there was a side effect. With those life-threatening infections gone, my coked-up immune system turned on me.

I like to think of my immune systems as a battlegroup of ships. (Go Navy) These ships deploy fighter jets known as antibodies. Antibodies fight harmful bacteria or viruses. I have autoimmune chronic illnesses. Yes, that’s illnesses plural. Chronic illnesses are like potato chips, you can’t have just one.

What happens with an autoimmune illness is that the pilots in those fighter jets aren’t quite right. Instead of pilots like Maverick in Top Gun, mine are more like pilots who never left the rave. Instead of working out, eating healthy, and sleeping; the pilots of my antibodies are doing keg stands, cocaine and Molly on the flight deck between missions.

After pneumonia and COVID, these pilots kicked up the party a notch to celebrate victory. Antibodies got to antibody, and my pilots don’t know when to say when. They went on a blowout mission to celebrate by killing healthy cells like little Al Pacinos in Scarface. They fired non-stop killing everyone they loved, screaming in tiny microscopic voices, “Say hello to my little friend!”

Antibodies gone wild are called flare-ups. I’ve had my share of flares, but this one was for the ages. My muscles were so weak I had trouble standing. Moving was nothing but excruciating pain. It took me four hours to get ready every day. I could not see myself coming back from this one, but my doctors at West LA Veterans Medical Center and my outside specialist once again pulled me from the jaws of pain and misery.

It took a few months. First we had to figure out if the flare is sarcoidosis, scleroderma, both, or something new. They share symptoms called an overlap. Rushing to prescribe could do more harm than good. Prednisone is a go-to for inflammation, but not with scleroderma. Then, something wonderful happened, eye pain. Glorious eye pain.

My eyeball hurt like a mo-fo. This was new. It’s not great to have new symptoms, but adding medication for this kind of pain is a big move. It’s beyond difficult to be patient while waiting for diagnostic clues, but I have grown used to it.

That fresh hell of eye pain was just the diagnostic clue my outside specialists needed. Eye inflammation or uveitis isn’t (usually) a symptom of scleroderma. So he prescribed prednisone- which is often contraindicated for scleroderma.

The next day, I. Felt. Amazing. Instead of laying around for hours waiting for the ibuprofen and Tylenol cocktail to work just so I can take a shower. I jumped into the shower and bounced through my day. A few weeks later, I saw my doctors at the VA and they renewed me for one more round of prednisone while everyone figured out the next step. Prednisone works, but it’s no long term medication. The mystery took a few weeks to solve and we started with the hard data from diagnostic tests.

One CT scan, PFT, echocardiogram, and vials of bloodwork later, I had all the information needed for my outside specialists. Not to flex, but I am lucky enough to live near one of the best scleroderma specialists on the planet. He is also a colleague of my rheumatologists at the VA, teaches at UCLA and around the world. (Damn right I have a team thanks to Medicare and Veterans Healthcare. I’d be dead without it.)

At the office of my outside specialist, went through the new information and compared it to the same tests results through the years. There was no progression in my lungs. My heart looked good. I was definitely in the middle of a flare which might lead to more pulmonary fibrosis. We needed to get in front of it like yesterday.

Then my specialist said, “I’ll be right back.”

He’d done this before, gone to his computer to check the latest data on NIHS. There is data published every week. Research doesn’t stop once a medication passes the FDA human research requirements and released into the wild. By that time thousands of people have been tested, variables accounted for and side effects treated.

You see, research is done in studies with variables identified. When it goes out to the public, that’s when variables can’t be corrected for, the research has only begun and it’s never ended.

One example is famotidine. It’s the active ingredient in meds like Zantac. You might remember seeing lawyers advertising to sue due to cancer. However, as time passed and research continued, it became clear that cancer occurred while on famotidine, but was not the cause. How do I know? My outside specialist told me when he prescribed a while ago. He ran out to look over thew most current data.

When my specialist returned to the room, he told me that the research regarding the medication he wanted to prescribe once showed a higher occurrence of blood clots, however over the past few months the research is showing that side effect is occurring less and less. He told me he was comfortable prescribing it based my data and history of twenty years as his patient. I was comfortable with it because of my history as his patient.

I began the new meds in the fall of 2024. It’s February and my sedimentation score, or inflammation rate, has gone from 75% to 26%. I’m here because of the non-profit socialized Veterans Healthcare and Medicare. Everyone should get the healthcare I do. We only hear about Veterans Healthcare when something goes wrong. United Healthcare has an even worse record, but VA Healthcare doesn’t have that sweet sweet PR and advertising budget private insurance companies enjoy. When you take money off of people at their worst, loyalty is to shareholders is a priority over patients, no matter how many times they claim their patients thrive. We are only seeing what insurance companies want to show us. There’s no objective oversight committee to stop waste fraud and abuse. Insurance is the grift that keeps on grifting.

Bet you didn’t think this post would lead you here, but treatment and diagnosis are only part of the story when it’s someone’s job to deny care based on profit.

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