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.