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.  

 

 

learn from the animals

To say that life has been stressful lately is an understatement. We're in a war against Iran. We're lead by an insane, murdering nazi, prices for everything have gone beyond sky high. Now we're in the stratosphere. From food to gas, most people are struggling. Women and LGBT people are actively being targeted, assassinated and having their rights taken.  

I feel angry, fearful, panicked and heart sick. 

But I can't feel that way all the time. Like the bombed Lebanese smoking a hookah amongst the ruins of what used to be their home. Or the teacher playing music inside the remains of a destroyed school. Art, music, laughter and love will always drown out the hatred of evil.

So I have been...

Making art. Making time for friends. Taking care of my body. Keeping up with my medical appointments. Loving on my puppies and trying to help people I love not feel overwhelmed.

My son is constantly stressed to the max. I think COVID really broke him. Now he shuts everything down with a "no." He struggled emotionally before all of this happened, but it has really become worse. His anxiety and depression don't seem to be at all touched by his medication anymore. 

After a recent breakup (where she broke his heart.) I took him to a town close to us for a break. I found this beautiful park with a massive pond and we just sat there and watched.

 
As I soaked in the beauty of the spot I could feel my shoulders soften from up around my ears. The tightness in my chest relax like a rope being untied. My breathing become deeper and more fulfilling. Changes that I wasn't even aware I needed.

Nature is a tonic for these times. And I need to remember that. Hug a tree. Swim in a lake. Look at birds. Go slow with my dogs. Nature is the best teacher of all. She can be vicious. But there is also a lot of love. She is slow moving. Slow growing. She takes her time when she's healing. 

The animals teach us as well. They too go slow. Enjoy the little things (like eating the same food for breakfast AND dinner.) Make time for play. Show each other new things. The old teaching the young.

Spending time in my garden has also been helpful. I think of it as an "earth detox." Where I just pour out all my stress and worries into the soil where it is composted like dead leaves. 

I realize I'm very privileged. I can afford the things I need. I don't live in a country that's being constantly bombed. The people I love are still alive and well. I'm not rotting in an ICE detention center. I'm in a healthy, loving relationship. I have a lot of resources and options. I'm a rare minority in the world.

I can hold both things. Both can be true. I can be sensitive and aware of the horrors of our time. While also healing myself in art, nature and love. I can take care of myself with food and movement and also be aware of my tremendous privilege. I can morn the lost rights of women, the disabled and people of color, while also laughing with my friends. 

It's not easy and it comes with practice. I think my background as a therapist is hugely helpful. But every day I try. Luckily I have my two beautiful puppies to lead the way. 

 

New Diagnosis

I saw my new migraine neurologist yesterday. He's changing one of my migraine medications. He's also hopeful that I can keep on my current medication and just add Botox back into the mix. He's trying to get it approved with my insurance right now.

He also said that he thinks I'm having "silent seizures." That was big news. This past year I'd been having a problem where I smell cigarette smoke and I'm not around any. It lasts days, one time it lasted about a whole month. I haven't had it happen since September, but I still brought it up.

He said given the location of my craniotomy and my symptoms he thinks it's seizures. He said it's quite common due to the scar tissue and brain injury. No one told me about that. I looked it up when I got home and he's right. It is fairly common, even 10+ years after your craniotomy. 

He ordered an EEG and wants to start me on Keppra to keep the seizures from growing. He said it's like a little forest fire that we want to contain before it gets out of control. 

I had no idea that's what was happening. My husband was skeptical and thought he might be seeing something that wasn't there. But he was positive enough to get me started on Keppra right away. 

This weekend is my mom's big 70th birthday. We're going away to the city for the weekend with her girlfriends. I'm very excited about it. So I haven't really processed this news.

Looking back on my blog I've had many diagnosis through the years. A few of them even stuck! Mitochondrial Dysfunction, Brain Meningioma and now this. Thank the Goddess I didn't really have Rheumatoid Arthritis. I think there's plenty going on.

I don't think it will feel real until my medical chart is updated with the records and a new diagnosis. Meanwhile, I started the Keppra. Don't want that fire to spread

ENOUGH Lemons Already!!!

I've always really hated that saying "When life gives you lemons make lemonade." How about "When life gives you peanuts, make peanut butter." I've been making lemonade and peanut butter all week. But yesterday a really big challenge came my way. My new job that I've been at barely a month let all the staff know that the agency is closing. They might be bought out by another agency (one I don't care for) or they may just close. I was crushed.

I hadn't even been on my RA medication for 1 week and now I have to job hunt all over again. I know I'll find something else, but it will take every spoon I have and then some. I'm also very sad to have to leave my clients, people I had just started to get to know.

As devastating as all this feels, it's helpful to remember a few important things.

1. It's ok if I don't make much money for a little bit. My husband's a hard worker with a good income. He busts his butt to support us, so that's a bit of pressure off. We won't starve and can pay our mortgage. 
2. Maybe this new job will be an even better fit?
3. The Plaquenil is helping and I'm feeling better than I was even when I was job hunting a month ago (and I'm sleeping much better, which makes a huge difference.)
4. I have love, encouragement and support of family and my husband.
5. I have some very good leads. My supervisor gave me 4 people to contact in my town about a job and I found another promising one on Indeed.com this morning.
6. I've done incredibly challenging things in the past and overcome a lot. I know I will in this case too.
7. I still gained good experience and met new people, even if I wasn't there as long as I'd hoped.
8. It sounds like I'll still have my job for about a month, so I still have a little money coming in. Not a lot, but it's better than nothing.
9. I was worried about working full time AND my body adjusting to the new medication all at the same time. Now I think I'll have a little bit more of a gap to adjust to the medication before working full time hours.
10. I have faith that everything happens for a reason. That's a comforting thought. I do believe there's a plan for all of us and that suffering comes when you try and figure it all out. Sometimes you just need to trust and be willing to do your best (while letting the rest go.) I've absolutely done my best and this situation is no reflection on me personally.

Try and have some faith and trust.

One more thing worth mentioning...

I honestly believe there's no such thing as a "horrible week" or even a "bad day." There are challenging moments and easier ones that all come and go. Even though this week as a whole felt especially challenging, it did have its bright spots.

My mom sent me this double orchid plant after I told her about my RA diagnosis.

It was a bright spot in my week.

A dear friend sent me this notebook with art that she did on the cover.

When I feel loved by those in my life and thought of it can make a world of difference. A text from my son can brighten my moments. Having coffee in the morning with my husband can start my day off right. All these things give me spoons and are so important when feeling overwhelmed by life.