Many times during the pandemic, it’s felt like my hold on reality was tenuous. My body has been hurting, and it keeps getting worse. My brain was overloaded with the daily onslaught of requests. It is literally burning right now, right around its outer membrane.

After a particularly hard week, with major parenting struggles in addition to the regular parenting demands, I was teetering on the edge of not being able to cope when I walked into my new rheumatologist’s office.

I didn’t want a new rheumatologist. My other doctor abruptly moved out of state. He seemed a distracted the last couple of times I’d seen him – He mentioned a few things that were going on with him. It was like he didn’t know where the Universe was asking him to go and he was treading water until he could figure it out. Nothing he’d said made me think he would just leave. But that’s what he did.

On this visit to the new doctor, I had a kid in my car that I couldn’t leave home unsupervised. It was snowing and another car almost hit us on the way there.

Another kid was being offered cash to babysit during school hours, something that had happened sometimes multiple times a day this week. Besides my own appointment, there had been a number of others –  several for my struggling kid, one for my kid with braces.

It had been a very long week with daily strife. My kid would be left in the parking lot with a book for the duration of my appointment. Part of my brain was in the car with that kid, hoping that a book would be enough entertainment and that the car battery wouldn’t die, that it wouldn’t be too cold. Another part of my mind was home with the others, cared for by a stressed sibling who was sick of babysitting.

The doctor swept into the room with sharp, inquisitive eyes, and direct questions that caught me off guard and had me stumbling over my words.

When do I have pain? How bad is it? Where is it? Was I happy? That question made me laugh humorlessly. And then cry. He asked about mood issues. He asked me about brain fog and short-term memory loss. Wasn’t that mom brain? Was there a cure for that?

And he asked about fatigue. I struggled to tell him how many hours I spend on the sofa each day because lately it’s basically every minute I’m not doing something else. I lose track, and it doesn’t feel optional most of the time.

Then the doctor scooted his rolling stool over and told me he was going to do a physical exam and that I should let him know as soon as I felt pain. Then he grabbed my forearm and stuck his thumb in, and bent my arm back and forth. I gasped.

I have trained myself not to yelp every time someone touches me because I get jostled by my kids and it often hurts. But until the doctor started poking I hadn’t realized how terrible I felt. Everything he did hurt, and it hurt from the moment I was being touched, before he even dug his thumb in.

I was in tears when he finished, and I still wasn’t at the place where I could speak up the moment he hurt me, although he was watching me shrewdly and heard me gasping in pain.

At home, almost no one ever touches me on purpose anymore unless I’ve initiated it. That’s the way they’ve been trained. Most physical touch that I don’t plan results in pain. I mostly don’t cuddle. I don’t like sudden moves. I hate being patted or bumped.

The doctor asked if I had trouble sleeping and I’d said no… but then I realized there is only one position I can sleep in these days in order to be comfortable. Internally I refer to it as The Corpse: Lying flat on my back with my arms and legs extended straight, or with my arms curled up like wings. That is the position that hurts the least.

It hasn’t always been like this. Winters are always worse than summer. And this moment in time, with family life strained with kid struggles and grown ups trying to hold things together and cope, stress is building up like a fungus and covering us with fuzz till we can’t think or move quickly anymore.

As I had toggled my meds around with the other rheumatologist, I would get better for a little while. I was meditating every morning. In the summer I was walking every day,  although I cringed every time I tapped the crosswalk buttons with my elbow because it hurt so much. I wasn’t sure there was anything more we could do for me.

I even went in for an extra visit to the old rheumo in the fall because the pain was getting unbearable. School had started and I was drowning. With the increased stress came pain. He added a new med which it seemed like it sort of helped, although it was a once a week dose, and the last three or four days before I took it again were rough.

The new doctor eyed me over his mask. “I’m not convinced you have RA. Your pain is consistent with overuse injury, or osteoarthritis, but you’re not old.” He did what my other rheumo had done when I first saw him, just to give me a break – and it was the only time I really felt good. He prescribed steroids.

They haven’t made me feel better yet, but I remember from last time I was on them, despite gaining weight, I felt the best I had felt since before college. I felt good. I hope that happens again, because I could use a break. But I also now wonder what other options I have after this little oasis. Steroid have long-term consequences. I don’t want to be on them for any longer than I have to be.

The doctor arranged a follow-up plan. After that, who knows? He mentioned a couple of other conditions he was considering. Fibromyalgia. Psoriatic Arthritis.

When I read the notes from my visit, I saw a third diagnosis I don’t remember him mentioning allowed. It’s called CPS or Central Pain Syndrome. As I understand it, that’s when your body is OK, but your brain is freaking out and translating everything as pain. If my pain didn’t respond to the steroids, it would probably point to something like CPS. I resisted going further down the internet rabbit hole.

I’ve seen the commercials for medications for those illnesses. I’ve heard the list of side effects – compromised immune system, fungal infections, and a host of other unpleasant things. I’ve heard Fibro defined as the illness women are diagnosed with when they complain of pain and the doctor doesn’t know what’s causing it.

Many doctors have to do their own exam and their own diagnosis, and they can’t just trust the others that have treated the patient before them (Three other doctors diagnosed me with RA after several invasive procedures and expensive blood tests. But I’ve never had a treatment plan where I felt good for long periods of time. So maybe they were all wrong?)

After the appointment, I went out to my car, to my kid who was waiting. I sat in driver’s seat and I cried.

I have no idea what comes next. But we’ve been calling the pain I have RA for long enough that if that isn’t it, it’s going to be an adjustment to call it something else and do something else to fix it.

I’m at the point that whatever this new doctor wants to try, I’m game. I haven’t been sewing, or creating, or anything more than occasional walking – really anything I love, because it’s all I can do to run the house and do school. I rarely make meals anymore. There is no energy for things that bring me joy.

I don’t know if a pain-free or less-pain life is a sustainable goal. And this doctor also proposes to fix my brain fog? It’s a bit much, but I can’t keep doing what I’m doing now. The emotional pain seems deeply connected to the physical pain. I’m not sure there’s a medicine for that. At least, not one that’s legal in the United States.

My little girl doesn’t know the cultural significance of tin foil hats, but after the time we’ve had at home and in the world lately, a tin foil hat seemed a timely craft project.