This Post Is About My Hair

I haven’t shaved my head since before we moved in late October. Partly because I have been busy. Partly because the new place doesn’t have a working outlet in the bathroom. Partly because it’s cold in Michigan. Partly because leaning over to shave my head hurts my neck and aggravates things. So I just hadn’t bothered for a month and a half.

Then, on November 21, I got the diagnosis of chiari with surgery as the course of treatment. The doctor’s assistant said something about not shaving my head before surgery, the whole world was already spinning, so it took me a minute to grasp. This was clearly something they tell everyone and they weren’t expecting to be talking to a woman who has predominantly shaved her own head for the past 20 years (a few winters I have grown it out a bit). It is so someone doesn’t knick their head before surgery and risk infection. It is so the doctor can shave only the necessary section.

I decided I would let my hair grow out so that I can get it to a reasonable length before surgery. I know I won’t be shaving my own head for a long time and dealing with that with a 4-6in incission/scar on the back of my head would not be pleasant. When I talked to the doctor’s nurse last week, I asked about this. She clearly wasn’t ready for me to have thought this was funny, buy we came to the understanding that it’s okay for me to get a haircut about a week before surgery. I will got to my local hipster barber, where I get a nod when I come in, so they can trim it up nicely. So, three more weeks of growth here I come!

For some history, I first shaved my head when I was 14 in order to donate my hair to an organization for kids with cancer. I got a lot of flack for that from peers and family and experimented with short styles the rest of high school. I also started studying Buddhism, though have funnily become attached to my lack of hair.

Most people who know me now and see me regularly are surprised when my hair isn’t shaved every few weeks. Wallace is used to seeing and feeling my shaved head, but he also really likes it when I grow it out a bit.

The last time I grew it out a bit, I found a local barber shop where I woul be welcome. I went semi regularly for some queer cuts, which was always an interesting experience as a woman in a male space. (Hint: they got over it.)

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Still Standing

Image from @how.u.feeling

If you ask me how I am, I don’t know if you want to hear the truth or just reassurance that I am still trucking along. I don’t want to seem like I’m whining and I don’t want to always be talking about my health issues, diagnoses, pain, and upcoming surgery. Sometimes I need to talk about it though. Sometimes I just need to be heard and validated and believed. I don’t know how to tell what I need in which moment.

I think it scares people even more when I talk about how this all is affecting my mental health. It seems people have an easier time hearing about the concrete medical things and not so much about how I am struggling emotionally. The few weeks after I got the chiari diagnosis and surgery date, I really struggled. I cried every single day. When I tried to talk to friends about this, I got radio silence or uncomfortable words of support. Then there was my dad who told me to go on medication like him. Once I realized how uncomfortable peoole were with this, I stopped talking about it.

Some of my symptoms hurt a lot and some make me feel crazy. They all come and go except for the constant low deep ache in my body and the chronic fatigue. I get a thrumming in my ear now and then, usually when washing dishes or doing something in that same position. If I overdo it physically, which is way less than even normal me could handle, I have an issue where my left leg stops working properly and it becomes very hard to walk. It’s as if my brain can’t get the signal to my muscles and nerves, so the rest of my body has to pick up the slack, which is exhausting.

I counted 103 migraine days in 2019 and so far 5 in 2020. Sometimes they are more typical migraines with deep thrumming pain on one side. But the chiari ones feel like the claw end of a hammer is digging up into the back of my neck/head. Add to that front of head and eye pain, light, sound, and scent sensitivity, and an inability to focus and find words. Yesterday was a bad one that medicine didn’t touch.

All of this greatly disrupts my life. It also makes me feel hopeless and very negative. When the neurosurgeon asked me if I have pain free days, I said, “in my whole body? No.” Woke up with no migraine so here’s to a low pain day where I can function, have fun with my kid, and have a life.

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MisLEAD: documentary screening on YouTube

I need you to go and watch this now. I will be writing a review, but I don’t want you to wait for that. Here’s the link to Tamara’s site with the link the the documentary. I want you to check out her site too. Go browse. I’m here to talk if you get overwhelmed or if it freaks you out. The documentary is not made in a way to fear-monger, but it’s scary stuff.

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Brain Squeeze

Just as this blog was started to document my journey of single parenting by choice and be a safe place to process it all, I have started a YouTube channel. It is my safe place to share about the process of diagnosis and treatment for chiari malformation.

So far, it is just unedited rambling so I can get my thoughts out there. I have found it helpful to watch videos of and talk online with people who also have chiari so I want to add my voice and experience to the mix. I do hope to learn some editing and create some basic things like a banner, but I also know that when it comes to recovering from surgery that all I might be able to handle are unedited videos.

And ad they say, please like and subscribe! If there is something you would be interested in hearing about or a question, please comment here or there and let me know.

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I need to make this brief as it is late and I have a migraine. I need to stop avoiding this space and to just put it here, which makes it more real somehow.

Last Thursday I finally saw a neurosurgeon. I say finally because it was about 10 months since I heard about chiari malformation and started researching it. I had MRIs done in early summer but the issues were missed and the neurologist’s office refused to give them a second reading. It took at least four schedule appointments with the neurosurgeon and changing my insurance before I could see her.

It then took her 10 minutes to pronounce a diagnosis and a course of treatment.

That is when it felt like the world was expanding and contracting. I had no air and too much at the same time. I had storms of words in my brain and could barely make sentences.

I didn’t make it through the checkout process before I started crying. Then I went to a bathroom and sobbed until someone else needed to use it. I walked though the rain across the hospital campus to my car so I could cry without being forced to look at people. I have cried every day since.

I have Chiari Malformation type 1 and the suggested treatment is called decompression surgery. It might not reverse my symptoms, but it should decrease my pain and halt progression.

Primarily, it is scary as fuck.

It is also validating. Finally someone has figured out what is wrong with me! I am not making it up!

There is a huge list of symptoms associated with Chiari. I also likely have Ehlers Danlos syndrome, there are many types, but because I am over the age of 25 there are no doctors in Michigan who will take me on and diagnose me.

Here is what I deal with.

  • fatigue
  • chronic pain in hands and feet (had arthritis ruled out)
  • neck pain
  • migraines
  • intracranial hypertension
  • pressure headaches
  • tinnitus
  • nystagmus when looking down
  • tremor
  • sometimes one leg starts to give out when I walk
  • orthostatic hypotension
  • numb patches on my back
  • bladder issues (I even had tests done on my bladder, so fucking not fun, and 6 weeks of pelvic floor therapy)
  • popping in my back
  • dizziness/vertigo
  • nausea
  • heart palpitations
  • low blood pressure
  • brain fog
  • word recall (aphasia)
  • sensitivity to sounds, smells, and light
  • pain behind my eyes
  • eyelid spasms
  • pressure in my ears
  • running water sound in my ears
  • burning sensations in my body
  • slurred speech
  • cold hands and feet
  • gas and bloating
  • food sensitivities (this has to do with a nerve that gets impacted)
  • muscle weakness
  • inability to sweat
  • excessive thirst
  • drooling
  • swollen lymph nodes

I’m really good at faking it, hiding my symptoms, and not letting people know how much pain I am in. It has been getting harder to hide from myself and this doctor called me out on it. I do not have pain free days. This tremor is new and my symptoms are getting worse.

I am so scared. But my only choice is to keep going.

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Wallace Said Wednesday 2

“When I grow up, I’m going to live in the wild.”

Morning snuggles. Totally left field, but he had ideas of what he would do living in the wild, like watching birds to learn how to make birds nests to use as pots.

“My electronic eyes did it. I’m hypnotyzing you.”

He told me a math problem and I asked him how his brain figured it out. This is what I got… and he added about how he took out his regular eyes last night and put them under his pillow. Huh???

“I never knew there was corners in this place.”

Looking around in the living room of our new apartment.

“You would look like a teenager with a tiny adult.”

His reasoning as to why I should carry his lunch box and he should carry his back pack on the way into school.

“Pretend I’m a carrot. My “best by” date is March 11th. Hahahaha!”

That’s his birthday. This was while eating. No carrots around.

Me: take it all off.

Him: take it Olaf? Hahahaha

Trying to get him to change his clothes so he can go play in the first snow and he keeps putting something back on.

“Is my name John, John Wilbert Wiggles?”

Yeh, no idea.

“I think your name might be Pocket Watch.”

We were eating dinner. Came out of nowhere.

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First Lost Tooth

It’s been an exciting evening over here! While Wallace was in the bath, he lost his first baby tooth, bottom front left. He said he was biting around the edge of the hat on my rubber ducky and it popped out and went under his boat in the tub. He freaked out a bit and there was some blood and a few tears. I couldn’t hold him in my lap and hug him because he was in the tub.

He calmed down once the blood stopped and was able to get out of the tub. He had some applesauce and a drink of water and I brushed his teeth without toothpaste. He wants the tooth fairy to come and all I’ve got on hand is a dollar, so we are going old school.

A couple of weeks ago I noticed the angle of his front bottom teeth looked different. I asked to see if they were wiggly and 2 of them were, the one that just fell out was the most wiggly. He’s had lots of friends lost teeth alread and I wasn’t sure how long it would take for him as my mom and I were both on the later side.

This is one of those parenting times I wish I had someone along for the ride. Someone who is just as invested in the ups and downs as I am. But that’s why I started this blog so long ago, to have a place to put it all, to process and remember.

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