The Epilepsy Files

 

 

So...

This happened last week.

It is a thing.
A new diagnoses to add to the delicious layered hamburger that has become my life. 

Kidding. 

It's more like a tiramisu. 

I hate tiramisu. 

 

I went to a new neurologist to get a second opinion. My new migraine neurologist (when he daned to meet me back in December) told me that he thought I was having seizures. He started me on Lamotragine right away.  

I thought he was wrong and totally nuts. But I took the Lamotragine anyway. I talked to my muscular neurologist who has been seeing me for years now for my mitochondrial dysfunction. I asked her what she thought and if I should get a second opinion. She said that she felt seizures were possible, but supported my getting a second opinion. She made the referral for me to see a specialist neurologist. 

Humor helps me get through hard news. 
I did get the Chinese food I wanted. 

Fast forward many many months and I finally got in to see her. She asked me a slew of questions. Taking her time and being very thoughtful. They conducted a neurological exam on me. And wanted to know more about my memory problems, "blanking out, zoning out" and me smelling things that aren't there. 

 

This resonated with me in a MAJOR way.

At the end of her check up she declared "You have epilepsy." That's a big, scary word for seizures. In fact the first, migraine neurologist had said "silent seizures" which makes it sound even better. Like comparing a tiny sweet dog to a slathering doberman. Silent seizures vs Epilepsy...

She then rattled off a very long list of things I need to do and can no longer do. No driving for a minimum of four months. Until I'm stable on medication and seizure free. Completely seizure free. No baths. Showers only with the bathroom door open and someone home. (Good thing I don't live alone!) Cooking on the back burner of the gas stove only. No going on ladders or high places with no railings. No swimming alone. It just kept on going. I felt like I was trying to get a sip of water from a fire hose. 

She said I need an ID bracelet saying I have seizures. So I treated myself to a new pretty one. You have to treat yourself, right?

I've given you the facts, but I didn't say much about how I feel. I guess I'm still processing it? I know I'm far from the only one in the world blessed with stupid health. But it can also feel lonely. Almost like one more thing to put a wedge between me and my husband (who is relatively healthy and very able bodied.)

I also feel like now all the symptoms overlap so much that I can't tell what caused what. What's the biggest problem? The one screaming the loudest? If they're all screaming in one body, how can I tell.

She said that the types of seizures I'm having directly correlate to where my brain tumor and surgery were. She said that it's likely scar tissue that set it off. 

 

The left temporal lobe. These are post-surgery MRI scans. The new seizure neurologist wants me to do a new brain MRI since I haven't had one in three years now.

2018 to 2026. So even though my surgery was eight years ago, it is still hugely impacting my life. My migraines, pressure sensitivity and now seizures. Oh yeah! And I can't scuba dive either. Well, I couldn't do that anyway because of the plates in my head.

This is getting hard for a mermaid who wants nothing more than to go back to the sea. Luckily she said nothing about snorkeling.  

 

 

Happy Mother's Day

One thing about parenting an Autistic person that no one tells you about is all the holidays you will miss. I never had my son wake up at the crack of dawn thrilled to open his Christmas gifts. Or hear the crinkle of cellophane as the Easter Bunny creeps into his room with a massive basket. It's not that we didn't do lavish gifts that an only child experiences. It's that he didn't notice and didn't care that much about it.

My sweet boy. 
I knew something was "different" about him even at this age. 

When he was little, Daddy took over the job of making him do my card and a gift for Mother's Day. But now that he's 32 that's gone with the wind. Don't get me wrong. My husband still treats me like a QUEEN every day and especially on Mother's Day. Because he knows that's something I'll never get from our son. Not for a single day. Not my birthday, not Mother's Day. My mother also always gets me a Mother's Day gift because she knows I'm a good mom and that my son won't do anything to mark the day.

 

 He still is this brave. 
I am proud of him every day. 
Well... almost every day.
 

There will be no "taken out to lunch" by my son. No flowers. No card. Maybe he'll remember and I'll get a text saying "Happy Mother's Day." But that's if I'm lucky. 

My sweet mom and amazing husband do their best to fill in the gap, but it's still a loss that I feel every year. It's one of the glaring moments that shine a light on the challenges of being Autistic. I honestly feel worse for him than I do myself. He's missing out. Missing out on the closeness that other's take for granted. It's just him. Alone. In his own world.

When he was little I once told him that I constantly feel like I'm holding onto a rope that's tied around his waist and I'm pulling him back to the "real world" for fear that if I let go he will completely slip into his own dimension in his head. He agreed that that's exactly what it felt like for him too.

 

Monterey is still his favorite place. 
We need to plan a trip and go soon.

His novels actually explore that theme very well.

But again, it's all about him. 

You share a life when you have a child. Not to share that life, but to still have them physically there is both odd and upsetting. I do a good job of trying to always see things through his eyes. But once in a while that is hard to do. Like on special holidays.

Now that he's an adult I never expect him to participate in family events. I let him know what we're doing and make the offer. But usually it's too crowded, loud and busy for him. Even with headphones and his laptop with him. I get it. Again, from his point of view. But as a mother, of course I would love to have my son there. I'm proud of him. He's an amazing person. I wish more people knew just how amazing he is.

But I'm the one holding the rope. In reality it's always been just him and me. And I'm sure it will be that way until the day I'm no longer here. 

No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.

2026 Has Been Rough

Last week my mom was in the hospital for her heart. She seems to have a medical crisis every year, but this one was by far the scariest. Well, that's not true. In the moment they are ALL terrifying. But this one was the closest to death I think she has come. I was sure she was going to die. I'm not ready for that yet. Not ready to lose her from my life forever. But will I ever be? I'm sure no.

This year has been crap for me medically as well.

 

 Eye infection in January. Starting the year off with a BANG.

 

Bad pink eye in February. Yes, it spread to the other eye. 

 

Urinary Tract Infection (UTI) in March. The fun just keeps coming.

Hives that pop up after compression, touching grass, hay or my dog's claws. Or just because.

 

My fingernail strangely lifting up off my nail bed (2 of them.)

In April I had another round of pink eye. But I didn't take any pictures this time. This will have to do...

Now it's May and I woke up with thrush yesterday. Fuck my life. 

This is a great reminder for me.

 

I had some labs done recently since I told my doctor I've been obviously have immune problems. 

She's referred me to a rheumatologist. I haven't seen one since 2018 (when I also had positive labs) and it wasn't a great experience. They thought I had Rheumatoid arthritis (RA), but it ended up being Mitochondrial Myopathy. I was put on medication that just made my symptoms much much worse (plaquenil) for RA. So needless to say I'm nervous about it.

 

Next week I'm seeing a neurologist for the second opinion about my "silent seizures." Does she agree that I have them?

 

Then comes the ENT to review treatments for my right year that likes to plug up on me for days on end when the pressure changes.

 

Also the gynecologist to talk about possible HRT to help my post-menopausal symptoms.

 

In the meantime I'm hoping to get my referral for Botox for migraines. I've been fighting with them about that since November. 

 

And people like to ask what I do with "all my free time." The answer is I don't have any. 

I feel like I don't even have enough to do art, When I'm not doing all this I'm trying to keep up with my precious pups, the house or with the people I love.  Of course I also spend a huge chunk of my day unconscious.

 

So yeah. 2026 has been kicking my butt.