how am I- it’s complictaed

I have not been very able to do much but it’s not through inactivity, but also it is. One day can cost me a week or more, and that’s exactly what happened.

It’s one of the more frustrating aspects of the particular form of Rheumatoid Disease I have- it is set off by activity, the very thing both medicine and our social narratives says is good for me.

Don’t get me wrong, inactivity has a toll. But my RD is never fully in remission. The kind of remission I have is chemically induced and maintained, and never actually gets my inflammatory markers low. But as there is a feedback loop between damage and inflammation it can be a very tricky balance.

On top of that I have nodules. These are essentially the same process but inside my skin. They do not start with damage and I have not noticed a pattern leading up to them.

But they start the size of the head of a regular pin, then they expand like the crest of a wave, staying the same width but stretching out as the center collapses and forms a scar.

They last for years too. I’m lucky they never get so big that they need surgery, they do eventually collapse, but I think I’ve finally got one on my scalp.

Tomorrow I get a chest xray. This is related as nodules can appear in lungs, they can also appear on other organs, but it could also be other lung involvement because yay.

“In fact, it is estimated that 1 in 10 people with rheumatoid arthritis will develop ILD over the course of their disease, making it as deadly among people with RA as congestive heart failure”

Two of the biggest risk factors are irrelevant to me, which again makes it very difficult to get diagnosed and to figure it out and to treat.

But it’s not likely an x-ray alone will be able to pick up on anything. It might take a CT scan.

“Pulmonary rheumatoid nodules are rare and their prevalence ranges from <0.4% in radiological studies to 32% in lung biopsies of patients with RA and nodules.”

So that is a massive leap between xrays and biopsies, it could be down to the severity of symptoms- I am pushing for that CT if the xray doesn’t show anything but only because the limits I am dealing with are now intolerable even while I am quite tolerant of a quiet life at home.

So for it to be intolerable for me means it’s something I am putting at the front of my care, rather than keep telling myself to wait out another month. Especially if I am seriously considering my chances with a biopsy, as further to this is the fact that surgery is something I avoid due to risk of infection.

But I need to have the xray first and I will be trying to point out my nodules as I do have a nice little collection, and the radiologist will then have an idea of how small the ones I grow are and that if I have any in my lungs they will also likely be itty bitty things.

Anyway. I was not able to walk even a few houses away until late last week, not due to inactivity, but inflammation. I had to have prednisone a few days in a row before I could consider trying again. Luckily I seem to be slowly regaining a bit of the endurance I lost. That is what I mean by inactivity still taking a toll. It doesn’t matter that I’ve had to lower my activity in order to protect my joints, my muscles still are muscles and need their thing.

But I also know to not push this. All it does is maintain inflammation while also burning through resources making fatigue worse.

It’s a basic principle of recovery though. You don’t force yourself into more harm, you do what you can, while you can, using what supports you need to, and build up to more activity.

Today I did walk and my feet are hot, most people can understand this, but my hands are as well. So again, it’s not at all logical based on much of what we know. But is absolutely on brand for some variants of Rheumatoid Disease.

In spite of all this, I’m mostly staying ahead of stress. It’s not easy. And I very much did have a few days of grief because of all of this, and it needed more than a decision to feel better, it took some additional health management steps.

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