It’s funny how you can sometimes be surrounded by people who love you and still feel all alone. Every diagnosis is a trauma that comes with residual physical issues, and no matter how many people want to help and support you, in the end it’s your body and all the decisions and their impacts are yours.

I have been reminded recently that when you are a chronic patient, one of the most dangerous feelings you can have is that you are all alone. I am lucky. When I got my latest diagnosis, I felt that way, but it was brief, simply because I have gone through the process so often.

In my experience, there are two main ways that feelings of isolation as a patient can get bad.

I’m tired. March is always difficult. Most of the worst things that have ever happened to me occurred between February 26th and March 28th of various years. Maybe it’s all the worst things, depending on how I feel about the ranking of events in my head. And my birthday is somewhere swirling around in the middle of that giant swamp of emotional baggage.

This year, I spent three days in a row in the same bathrobe. The doctor whose appointment broke the cycle told me that his office was an equal opportunity sartorial office and if I wanted to come in my bathrobe next time, that was fine. I wish he hadn’t told me that. It exponentially increases the risk that next year, it will be five days. At least I was still brushing my teeth.

Adding to all that was my realization that the work I have been doing might not be getting through, as indicated by the fact that I have to keep saying the same things at every webinar and conference I attend. This is not news to my fellow patient advocates. They have been doing the same for years and years longer than I have. To them, I am a relative newbie at five advocate years old. This year, it’s the cherry on top of my annual Month of Depression.

OK, ok, time to stop procrastinating. I promised to start talking about the hardest patient part, so here we go.

I was actually in a pretty good place before my diabetes diagnosis. Over the six years since I had started walking again, I had recovered from meningitis and paralysis to a point where my residual weakness was invisible. I wasn’t popular – I was never popular in school – but I had good friends. I wasn’t particularly athletic, but I was good academically. And as tweenagehood began, I lost weight, which brought with it a certain kind of attention I had never received before. Already sensitive about my body from having to be in a wheelchair and relearn to walk in public spaces, it gave me a new kind of self-consciousness, but I liked it. It was warm and positive in a way I never thought I would feel about my still-slightly-impaired body.

Of course, I didn’t know that I was effectively starving.

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.