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

I Do What I Want

I'd been wanting to shave my head again ever since my last dye job. It came hot on the heels of two bleach jobs and two other dye jobs. When I can't get a color just right, I get frustrated. When I get frustrated with my hair... well... out come the clippers.

My mom is having a huge birthday this weekend. She's turning 70. But even her please of "Please don't shave your head till after my birthday" fell on ADHD ears. When I get something in my head it's almost impossible for me not to act. It feels like an itch I can't scratch. Awful. 

And (insert drum roll please.) I really enjoy having a shaved head! 

I love the feel of it. My husband calls me "little chick." I love the lack of work, how fast and easy it is. I can just roll out of bed and not fuss with my thin, unruly hair. I like to keep my scalp nice and moisturized, something harder to do with more hair (without looking like an oil spill.) I like not spending time or money on dye just to get a color I'm not happy with.

I like how shockingly feminist it is. Once associated with a punishment of women, now reclaimed as a powerful look (thank you Sinead O'Connor.) I get more compliments on my shaved head than any other style I've had. Quickly followed by "Oh I could never have my hair like that, I'm not brave enough. But I love it."

The late, great, Sinead

I'm not "brave" for shaving my head. Heavens no. I'm brave for a million other reasons, but that's not one of them.

I adore a shaved head on other women. How surprisingly stark it is. How de-feminizing. A woman's "worth" used to be, and in many places still is, judged by having long hair. The thicker and more flowing the better. To consciously opt to have none is a big "fuck you" to the patriarchy who invented these arbitrary rules. My husband doesn't have a six pack. So why should I feel the need to conform to cultures rules about beauty?

I should do what I want.

I always used to say "If it wasn't for my husband preferring longer hair I'd shave my head all the time." Well, I realized just how stupid that is. I need to please myself first. I love and adore my husband with all of my heart. But I don't need to conform to any male gaze, even his. The only gaze I need to please is mine. 

Anyways, he says I'm gorgeous no matter what I do. So there we are. 

Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

SLOW THE F*%& DOWN!

My mom says a lot of very true, on-point things. One of the things she is always telling me (has always told me) is to SLOW DOWN! I rush through everything. Even getting out of the car. She laughed the other day and said I'm just like the dogs (or are they just like me?) Always ready to jump out of the car before the brake is even on.

In my efforts to go slow I made a few changes.

I love the smell and warm glow of candles.

One has been reading at night rather than being on my phone. I'm not 100% perfect, but it has been really wonderful. I'm enjoying large print saucy reads and sleeping much better because of it. 

Total smut. But oh so fun!

Another change I made is switching from my Nespresso pods every morning to slow drip coffee. I read online someone doing this in an effort to have a slower morning. I thought it made good financial sense as well.

I bought this little 5 cup machine on eBay.

The other thing I've been doing for a while now is turning on the live feed from one of my favorite places in the world... Monterey Bay. I bet you thought I was going to say Hawaii? Well, that's number 2. But to see the otters and seals in real time. That stormy sea so alive. The people-less beaches. Well, it's a magical way to start the day. I pretend it's my window as I watch.

After my slow coffee by the bay I walk the dogs (if I have the energy.) And that's my easy morning. I know what a luxury it is to be able to indulge like this. I remember hitting the ground running when I worked full time. Then "luxury" time was my commute when I sang out loud in my car or listened to the news. Yeah... this is better.

Max, Margo and Mom. Living our best lives.

Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

Addicted

I've recently been trying to learn as much as I can about my disease. Science is an ever changing, ever evolving beast. Especially when it comes to mitochondrial functioning and its role in multiple disorders.

One thing that stood out to me was the emphasis on sleep. How getting a good night's sleep is vital to good immunity and mitochondrial health. To say I don't get good sleep is an understatement. But that's in big part due to my phone. It is glued to my hand from the time I hit the sheets till around 2AM. Not healthy at all.

She doesn't look like a siren, but she is!

So last night I decided I'm changing that bad habit. I made my bed all nice, turned off all of the lights. Even my little nightlight and closed my eyes to sleep.

The urge to pick up my phone was insane. Partly due to my ADD brain wanting to look things up, add something to my Target cart, or check in with people I don't even know. Damn. I am completely addicted and I didn't even realize it.

"You knowwwww you want to shop. I bet someone is having a saaaaaaale"

It felt exactly like when I left Facebook for good about eight years ago now. I deleted my account and that was that. I didn't notice how much it had tentacled into every facet of my life until I quit cold turkey. I felt a physical pull to get back on it that was terrifying. I had been so completely addicted to it and I didn't even know it.

The fact that last night was so incredibly hard for me and that I felt that same magnetic pull to get on my phone just validated that I did the right thing. And just like Facebook, I didn't realize that I was addicted. I thought it was a preference or something I enjoyed. Not that I would feel the loss like a tooth pulled.

"I bet that comment you left is up to 5K likes now. What's your friend in Australia doing? I bet she's up."

I stayed off of it and fell asleep after a restless 30-45 minutes. Not bad. And I slept very well. Hmmmm. Coincidence? 

Oh yes. I also read a real book for the first time in ages. Bridgerton. The first one. Saucy. I felt like someone from Little House on the Prairie. Laying in bed reading. Wow! What a novel idea. Something I did all the time before the iPhone. 

Substance

I watched the bizarre movie The Substance yesterday. Although I can say I absolutely hated the ending, I did like the political commentaries that it brough to light. 

The beautiful Demi Moore and very young Sarah Margaret Qualley in The Substance.

The invisibility of women as we age (a good thing in my opinion.) The pressure on women to keep looking as young as possible. The self hatred that our beauty based culture can inflict on women. The disgusting men everywhere, seemingly endless amounts of them, who objectify women. "Beautiful girls smile" leers one man to a young girl, trying to get her to smile. An experience I had in my youth more than once.

A powerful scene where Demi Moore wipes away the makeup she just spackled on.

I enjoyed how powerful and decisive the main character became as she aged. No spoilers here, but the movie dug through the old myth of the maiden, the mother and the crone in a unique way. 

As a crone myself I found that very empowering. To own your "crone-ness" and to hell with everything and everyone else. Men don't like us because we now know all their tricks. How vapid and lurid most of them are. Not all men of course, but that's the general vibe honestly. And when a man's partner turns into a crone I think he becomes a bit fearful. Not a bad thing. Keeps him on his toes.

Disability is another challenge that makes one invisible. Although those who do see us are shockingly helpful and friendly. I realized the other day as I used my wheelchair how much people try and go out of their way to be friendly to me. Not when I use my rollator strangely enough. Then maybe I'm just an "old woman" instead of a "disabled woman?" It feels strange to transition between these worlds at will. 

I'll be honest. I do miss my grey hair. I feel ready to embrace my crone-ness and start kicking some butt.