A little more than six months ago, I wrote about receiving my thirteenth chronic diagnosis, plantar fasciitis. I did not expect that I would be writing so soon about the next one.

And yet, here we are – adenomyosis – a condition where uterine tissue grows into the muscle. It is similar to endometriosis, but the one symptom I have is only related to adenomyosis. It’s common, especially in women who have had kids (I have not), and right now, it is no more serious than my other nuisance conditions. It causes me to make minor accommodations but does not interfere with how I live my life. This could change if it causes my intermittent anemia to become more present.

But it’s hitting me hard. Maybe harder than it should.

We’re Turning Five!

I never thought I would be able to keep a blog going this long by pulling stories out of my head. It’s pretty close to 250. That’s a lot of stories. (Don’t worry, there are plenty more.)

To be honest, I never thought I would put my medical life out there for public scrutiny. What happened was a complete (and quick) 180. Given my extreme risk aversion, these kinds of quick reversals are not usually on the table, and they are definitely not things I am comfortable with. ut it seemed necessary at the time.

Here’s how it started.

I stumbled across this again recently. Photographer Josh Rossi and his wife, Roxanna, transforming kids with serious illnesses and disabilities into their favorite superheroes. There’s a lot to ooh and aah over, and it’s definitely a feel-good story. At the end of one interview, the Rossis talked about how happy it made the kids during difficult times.

But it’s more than that.

Kids who are sick, whether it’s chronic or acute, don’t have the luxury of childhood the way most people experience it. They become aware of their own mortality, and their identities- how they see themselves - will forever be impacted by their experiences as patients. Perhaps they don’t understand mortality in the fullness that adults eventually come to experience it, but they know that the world isn’t entirely safe.

The short answer is better outcomes and lower costs.

Last week, I wrote about the role my GP plays in my personal medical circus. And it really is a circus. When I am giving a presentation, I always have notes because 99% of the time I will forget at least one or two conditions. Betcha my GP knows them all.

This week I want to talk about why GPs and family doctors (and nurse practitioners!) and primary care practices (ladies, this includes your regular Gyn care) are important in a larger sense.

Funny story. For a long time, I didn’t have a primary care doctor. I just went to my endocrinologist. Eventually, he got tired of treating every cut or sniffle and gave me the name of his. If the guy was good enough for him, the doctor I trusted most, he was good enough for me, right?

I agreed to see him, but I never said when. Turns out I waited so long, he had retired. By the time I actually needed a primary care doctor, I was stuck. When I called the practice, they had already hired someone to replace him. I went ahead and saw that doctor because I had to. It was a good decision. I am still with the guy over 15 years later, and he is so good, I will travel a couple of states over to see him.

But why does it matter, especially for chronic patients? Don’t we get everything we need from our specialists?

Well, no, not really.

I was watching the Netflix Dear White People series recently. Actually, I binged all four seasons in two days. Without giving anything away, the last season involved a lot of 90s music, including the New Radicals Song, Get What You Give. Oddly enough, it struck a chord about caregiving.

I, as so many of us are, am a part of the “sandwich generation”. At some point we will find ourselves caring for both our children and our parents. But my sandwich looks a little different. My care giving overlapped with my care getting when I was young. It was lopsided then, and I didn’t think about it as caregiving then, but it definitely drove how I approached my mom’s cancer diagnosis, and how I felt when the opportunity arose to even the score.

It’s hard to know how to start this post. I was never a joiner. I have had opportunities to be in support groups. Mostly I didn’t accept. The one I did attend caused more harm than good – they held me up as an example to minimize other patients. A sort of, “if she can do it with all that’s happened to her, then you can, too.” I suppose it was meant to be inspiring? I was young then and didn’t realize how damaging that could be, so I allowed the therapist to continue doing it until my mom’s death gave me a reason to stop going.

Still, there is something special about having people in your life with the same condition(s). You can spend time with them and not mention patient stuff at all, but you know that you will never have to explain why things are hard because they already know. The hardest one for me is meningitis. There are so few who get it, and before the vaccine, a significant percentage of those people died. I met someone in an elevator once who had recovered from it, but her circumstances were very different from mine, and we only had about three minutes to connect, even after we got off the elevator. Even so, I was excited.

There aren’t a lot of silver linings to the pandemic, but one is the increased visibility of, and discussion around, mental health. It’s hard to ignore or stigmatize something when literally everyone is struggling with it. I suspect that there is no corner of the Earth where people haven’t been affected by the anxiety and fear inspired by COVID. Even for those of us suffering from COVID fatigue, that sense of apathy that has developed as we stare down our third year of variants, restrictions, and uncertainty, is a mental health issue.

I am glad that mental health is clawing its way out of the shadow as a major health concern, but one thing I find confusing when I read articles about self-care or mindfulness is that the logical next step – the connection between mental health and physical health -- is missing. In my experience, they are always intimately entwined. You just can’t have one and not the other and be considered healthy.

Do you ever have one of those moments when you realize how absurd your life has become? I had one a few years ago as I was walking down an airport concourse and with every step I took, I could hear the pills in my carry-on rattling in their plastic bottles. It was an international flight, and I was not willing to risk being without my meds if the airline lost my bags. For a moment, I was self-conscious. It was a loud sound and made me feel like a walking pharmacy. But then I realized that was exactly what I was, and kept on walking.

I recently had a similar moment sitting on my couch.

I hope you all had a wonderful holiday break. I spent one week catching up and in the chaos of family and one week basically in my pajamas binging HGTV. It was awesome.

But there was one slightly sour note. As I was watching an early episode of one of the remodeling shows, a couple was arguing about whether to change the house they had or move. The person who wanted to stay loved the house, but had a medical condition that made its functionality far from ideal. They thought updating the house would solve the problems. The other half of the couple wanted to move because the medical condition made the house difficult for the spouse.

That was a “wait, what?” moment for me. Was the healthy person actually telling the one with the condition what to do because they thought they knew better than the one with the condition what would work best for the one with the condition??? That spouse, who had never had to live a day with the pain and limitations of the condition, had never felt how the comfort of a familiar, nested space that you love can ease that pain and lessen fear (rationally or irrationally) was presuming to make decisions for their patient partner. The healthy spouse gave no other reason to move.

Watching that, ooh, I was mad.