Thank You, Weird Lady

I have been wanting to write for years.

I would see something online, like a post about chronic illness, a thread about allergies, someone asking why their joints bend the wrong way and their heart rate spikes when they stand up and their body reacts to things that shouldn’t be a big deal… and I would think: I know the answer to that. Or at least part of it. Or at least more than what they were getting.

And then I wouldn’t write it. Because I was too busy and the business always needed something. I was chasing my tail- which is a thing I am very good at, and which my nervous system has been using as a survival strategy for longer than I want to admit.

Then I tried to buy a building. We don’t need to spend a lot of time on this. It didn’t work out. It was too expensive not to work out. And somewhere in the middle of that not working out, my body, which had been sending me signals for years that I was very skilled at interpreting in my patients and very skilled at ignoring in myself, finally said: nope.

I have hypermobile Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and Dysautonomia. The hydra. And in 2022, I got COVID, and my already-complicated body became significantly more complicated.

I closed the practice. I came home.

I do not want to say I am disabled. I am still not totally okay with that word, which is its own thing I am working on. What I will say is: I am home, I am in pain, I am trying to figure out how to keep treating patients and sharing what I know from a body that has strong opinions about what it will and will not do on any given day.

Here is what my life looks like right now, because I think you should know before we go any further.

My husband Darren recently broke his arm. He broke it because he will not slow down, which is a thing I say with love and also with the particular exhaustion of someone who has been watching the person they love refuse to slow down for a very long time. He has ADHD. His moods are palpable. They are audible. He says things like “well fine, I won’t touch the dishes again” when he is not well, and I know he is a good man, and ADHD is a bitch to live with- for him and for the people who love him.

So he broke his arm, and I was recovering from a chest cold, and I took on his chores and my chores and tried to get over the cold, and I am still not better. I am in a lot of pain. There is a question I think about sometimes that I don’t usually say out loud: when will the time come that I will not be able to walk up those stairs?

I don’t know the answer. I am trying to make peace with not knowing.

We are also broke. I want to be honest about this because it is relevant to why I am here and what I am asking of you. The building thing, the business closing, the medical costs of being a person with a complex chronic illness… it adds up in a direction that is not good. I am in debt and I am scared. I have been watching my husband’s mother’s generosity carry us further than it should have to, and last night he told me we can’t borrow any more money from her, and I felt the particular shame of realizing I had let that go on longer than I should have. She has a new diagnosis and it is not inexpensive.

Three quarters of my brain is on maybe THIS is the good idea at any given moment. The frozen feeling- the one where you can see exactly what you need to do and cannot make yourself do it- is something I know clinically as a dysautonomia and neurodivergence pattern, and knowing that does not make it easier to live inside.

So why am I telling you all of this?

Because you already know this story. Not my specific details but the shape of it. The slow downslide. The moment you stopped waiting for better and started negotiating with what is. The financial terror that lives underneath every decision. The partner who is struggling too and not always handling it gracefully. The frozen feeling. The question about the stairs.

You know this. And you have been lied to by enough people selling solutions that you have very good reasons to be suspicious of anyone who shows up saying they have answers.

I am not here to sell you a solution. I am here because I have spent twenty years studying this: the connective tissue, the autonomic nervous system, the mast cells, the extraordinary vessels of Chinese medicine that describe the whole system with a precision that still makes me put the book down and sit with it. Plus, I am living it right now, in real time, and I finally stopped waiting for a better moment to share what I know.

There is no better moment. There is only this one.

I am a Doctor of Acupuncture and Oriental Medicine. I have specialized in complex chronic illness for my entire career. The patients who have been everywhere and been told nothing, who have learned to apologize for their own symptoms, and who come in with three-inch binders and a look in their eyes that is equal parts hope and exhaustion.

I was studying connective tissue and its relationship to the autonomic nervous system and immune dysregulation before I knew I had hEDS. When I finally got the diagnosis, everything I had been researching clicked into place in a way that was both a relief and a grief. Oh. It was me the whole time. I was the patient I had been trying to understand.

The call was coming from inside the house. So…

The name of this Substack is now Thank You, Weird Lady.

It is what people might say to me after I trauma dump on them about what is going on in their bodies, and I don’t know how to come back from it. It is the thing I imagine someone saying after I have explained, in more detail than they asked for, why their period makes their POTS worse, or why their joints and their mast cells and their nervous system are all part of the same system, or why the treatment they were given caused harm that the research has since confirmed.

“Thank you, weird lady.” I hear it as a compliment.

I am here because I need this community as much as you do, I have something to offer, and I have been sitting on it for too long because I was too busy and then too sick and then too scared. I am here because I submitted an abstract to a Long COVID conference in Nice, France this morning. A real conference, with a real submission… and I thought: if I can do that, I can write the welcome post.

So here it is. The welcome post.

I’m glad you’re here, and I’m glad we’re both weird.

Let’s figure this out together.

DrNikiNeedles

Next: Series 1: Learn Qigong With Me. We start with Water, because most of us are depleted, and Water is where you go when you need to restore what has been used up. It is a lying-down practice. It takes three minutes, and it is enough to move the needle.