Don't Just Get Clean

I was watching an episode of Queer Eye the other night and a topic came up that resonated with me. One of the people on the show said something to the effect of: When you're showering, don't just have the intention of "getting clean." Rather see it as a time just for you. Honor yourself. Make it an experience and take time to connect with your body.

Since I view my body as a betrayer, this is very hard for me. Medical trauma is very real. I thought about what I had heard. The person on the receiving end of this advice was also a big giver to other people. I reflected back on what I think of my body and how I have treated it since becoming ill and I saw something interesting.

In the past I would shave my head because it was easier to just not think about or fuss with my hair. (Or because I was too weak to shampoo my hair.) I don't wear makeup often because I don't like the feel of it. I didn't wash my face (outside of a shower) because my complexion was clear. I just stopped spending time on my looks. This all coincided with my illness.

Yes, I would go back and forth on coloring my hair. I wanted to go natural, but then I would feel like I looked old and sick and I would switch it up again.

But something recently changed.

I can't pinpoint it exactly.

Firstly it could have been my wonderful birthday party. Being around such magnificent women and being restored with feminine energy. It really was a magical evening.

Secondly it could have been me learning about animal testing and the cruelty in the beauty industry. Everything from our shampoo, deodorant to my face products were from evil companies. I vowed to do better this year.

Slowly I made a shift. 

I started by learning more about what "mature" skin needs and the changes that happen with age. I'm growing my hair out again (though I'm done with color... for now.) I tried out a brand that I'd used a few of their products in the past and liked them. They are local, woman owned, Vegan and cruelty free. I'm super happy with what I've bought so far.

Next I made a new skincare routine for myself. I do it every morning and every night. It is some special time just for me to relax and meditate. I'm trying to take extra good care of my eyes to prevent future styes.

I have a very simple makeup routine that doesn't feel gross on my skin. Again, using natural cruelty free brands.

I'm trying to "feel into my skin." Not just dissociate and "get clean." 

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. 

Feeling Powerful

Hair is a topic I talk about a lot here. Along with weight loss. Apparently I'm just a typical American woman.

I shaved my head again a few months ago because I thought I was done with color. At least for a long while. But then I saw pictures. And then pictures of other women in my life with natural hair and I thought "Hmmmmm... I don't like the look of that." You know what it looked to me? It looked like I wasn't "POWERFUL."

These are times where it's good to look and feel as powerful as possible. 

My mom has brilliant red hair. Like Crayola crayon red. I love it. She gets stopped everywhere we go and people comment on how great it looks. Partly I think this is because it does make her look like a super hero.

She looks POWERFUL. She also IS powerful. A force of nature. As am I. You don't f*$& with the two of us. But my salt and pepper hair just wasn't conveying how I felt inside.

So I decided to go with a classic. Blue/black. Did you know that more comic book super heroes had blue/black hair than any other color? They were also all fair skinned. Why? Because there's something mythic and powerful about that combination.

Me in LA 2017 with black hair. Post TB and right around when my muscles decided to lose their shit. Age 44.

Pre-coloring. Cute, but not fierce.

Oooooh yeah... That's better!

This is my favorite go-to black dye. For experienced hair color'ers only. This stuff stains like crazy and you for sure don't want to get it on your new white sink. (But if you do, a little swipe with some nail polish remover will get it right off.)

I already feel refreshed. And yes... powerful.

Time to shave my head again!

Hair is such a big deal for women. And men too. It's a symbol of a woman's sex appeal. Her virility and sensuality. Women spend insane amounts of time and money on their hair. I bet you could buy a house by the time the average woman dies with what is spend on hair care. Men do too of course, but really not to the extent of women.

Me right after this picture was taken.
"Mooooooom. Will you shave my head for me?"

Some of it is cultural of course. The hair salon becomes a sacred "Third Space." Especially if you're having a very long process done like a weave or braids. I can't think of a time in history where women weren't plucking, dying, shaving, braiding, fucking with their hair. I wonder why? Did you know ancient women used sharp sea shells to shave their hair? And Roman prostitutes bleached their hair blonde with donkey urine.

Different hair colors also have different meanings. Right? The flirty, ditsy blonde. Serious, mysterious brunette, fiery temperamental red head. Fascinating.

Post swim and shave

I have enjoying playing with my hair in the past. Different colors and looks. But frankly now that I'm older I just feel so over it all. Over the time, fuss, money, energy, supplies... all of it. 

I really love the look of a buzz cut. To me it "means business." I find it so sexy when a woman has a buzz cut, no matter the age. Men too. There's a Viking sex appeal to it for me. And oh my God is it easy and cool. Feeling the breeze on your scalp is a pleasure everyone should enjoy at least once in their life. 

Speaking of. I love to rub my hand on a shaved head. So do most people. The most common question I get when I buzz my hair is "can I touch it?" And if I know you, then sure! Rub away.

The A/C hitting my head during the summer heat feels AMAZING!

A woman with a shaved head says "don't fuck with me." She's a bad ass who doesn't care what people think. Even if it's from chemo or alopecia, that woman is a warrior. She's down for a battle and is fighting every second.

Whoa...

Maybe that's one of the reasons I do it? Maybe I'm showing people that I'm fighting every second of my life. That my mitochondrial disease has forced me to be a warrior. I had no choice. It makes my invisible battle visible in a way. Hmmmmm. I'll have to think on that some more. While I rub my "fuzzy chick head" as my husband calls it.

Confidence

My self confidence has always been sky high. Mountain high. Olympus high. Not in a bratty way, but I have a history of feeling good and getting what I want. Or making what I want happen. All of that went out the window when I became disabled.

I thought I knew what my life would be like. Or at least a big part of it. Then it all changed. I felt and still feel the impact of that. A lack of control. In a good way it shows up as mindfulness and a lack of attachment that the Buddhists talk about. In a bad way it shows up as my confidence being shaken.

Not feeling sexy.

Sometimes this can look like not feeling sexy enough for my partner or myself. Because of my intense pain I have limitations. This can make me feel guilty, upset, depressed or angry. Lately I was looking at pictures of myself and seeing an "old sick woman." This isn't the first time it's happened either. I talked about it openly here. And here. And here. I definitely I have a "thing" with my hair.

My mom reminded me today that my hair has always been an outlet of creativity and self expression that I've been messing around with since I was 13. Always different colors, lengths, styles. It's just something that I do and have done. It's healthy for me.

So here I am once again coloring my hair. What am I hoping for? That I will feel more like "my old self." My "healthy" self. Even if it (obviously) won't cure me. I'm hoping I might feel a bit prettier and sexier. There are many things I can't change, do or help with my body. But there are things I can.

• What I wear
• How I'm intimate
• Hair or no hair
• Hair color
• My sexuality
• Mobility devices (Yes! I consider them an extension of my body) 

Although it may just look like hair color to an outsider, to me it's much more than that. It's body autonomy. It's my "look." It's me.

Weapon of choice. Very close to my natural color.

I also think it's time to start wearing bras regularly again. Hah!

Hair One Day, Gone the Next

I have always been a chameleon with my hair. Ever since I first bought my bottle of Sun In and bleached it to a bright orange as a young tween. I treated my hair like another accessory. Like Jewelry. I had fun mixing it up. Short, not so short. Red, black, natural. Bob, pixie... 

But don't take my word for it. Here's some head shots from the last four years.

Box dye brown

No dye bed head

Shaved off post brain surgery head
(I did it myself)

Sweet henna head

Wonder Woman black, longer (for me) hair

Irish red hair

Up, down, head scarf, hair clips. I loved to play around with my hair. 

I haven't colored my hair in over a year now. I miss it sometimes. Just the fun of changing things up if I want. But I don't miss the mess, cost or smell. I also don't think I could do it now.

The way my muscle disease works for me, reaching over my head while sitting or standing is the hardest thing I can do. So shampooing, blow drying, all of those motions cause me a lot of pain. My arms fatigue very fast.

I wanted to grow my hair out again, but the styling involved with long hair has just become impossible for me. I can shampoo and do a quick blow dry, but that's it. Forget all the products and cute styling. Flat irons, curling irons, hair clips, bobby pins. It's all out for me. 

Instead of all those distractions I'm trying to embrace what's important in life. To stay focused on the things that really matter. My hair does not matter. As my husband says, "You're beautiful and sexy no matter what!" Having it short and natural saves me loads of energy, which is the most important thing.

What's New Pussycat? (Oh whoa whooooa whoa...)

There are many new things going on with me creatively, medically and in my home. One of the bigger things is I finally have my BiPap machine. 

At first I was given a CPAP which has continuous air flow. It didn't work for me at all. It was like drinking from a fire hose. It took me about 6 months to get a BiPap instead and I hope it was worth all the work. (A BiPap has less pressure going out and more going in.)

I'm able to tolerate it all night, but learning to keep my mouth shut is still a huge challenge for me. Yup. I'm a big time mouth breather. I have noticed that my lungs feel much better in the morning when I use my machine then when I don't. I can breathe much easier and don't feel as asthmatic. I did read that a BiPap is supposed to be helpful for asthma. 

A non-medical thing I'm doing that's new is watercolor painting.

I've always loved oil painting. But it's very hard to do in your home. It also requires a lot of chemicals, so I stopped doing it when I didn't have a student studio anymore. Acrylic painting is fun, but not the same as oils. But with watercolors there's far less setup and cleanup. It's much easier on my muscles too. It's challenging and new, so I've been having fun with it. 

My garden is really going all out now. We have this beautiful orange-ish sunflower out front that's just perfect.

I love spending time out there when I can.

We're doing a major remodel of our front area right now too. We're excited to have it all finished so we can enjoy it. We're getting new fencing, a new driveway and a new bigger front patio with a water fountain! It's actually more like a small waterfall. I'm so excited to see it done. 

I've been finding the contractors and coordinating as much of it (including the design) as I can. Then my husband jumps in and takes care of the financing end. We're a great team and so far things are moving along. It's a challenge to deal with contractors, let alone 4 of them, but I can do it.

So that has been taking a ton of my time.

And then there's my weight. I hit an all time high about a month ago and am working on reigning in my eating. But it's very hard.

I honestly feel like I don't eat a ton, but then I have to remember that I also don't get very much exercise. The pool is about it. And although it's good for me, it doesn't help me lose much weight. In fact it makes me hungry!!!

So that's an ongoing struggle and something that's on my mind a lot.

I'm also always researching migraines and trying to find something that will help me more than the tools I already have. 

Although I already have pink tinted glasses, I thought maybe they aren't tinted enough? I got the darkest pink that I could at the time. I love that you can just try out a theory by finding a new pair online. I ordered these last night with a darker red lens to try out. Many of these companies take returns too, so if I hate it I can get them re-done in a dark pink similar to what I have now. 

And of course you might have also noticed that I colored my hair red. Actually my mother helped me to color my hair red. As in I told her how to do it and she paid for the supplies and did it for me. What a mom. 

To go from blue/black to flaming copper red is no easy task, even for a fully trained hair dresser. But 30+ years of coloring my own hair taught me a lot! And the few times I did go to the salon for a color I paid close attention. 

It took her a full day, but she managed to get as close to what I wanted as was possible. I've been having fun being a redhead for a change. 

I'm trying to make time for friends in all of this, but my health has been really awful lately. I've needed a lot more rest and down time than usual (which was already a lot). Just making time for family and the house project is about all I'm good for right now. I'm counting the days till my next Botox shots for migraine (still a month away). I'm putting myself and my needs first, which is still hard for me to do.

Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.

January 2020 Update

It has been a while since I checked in as far as how I'm feeling. How I'm actually doing symptom wise. What I'm trying medication wise and how things are going. So (insert drum roll please - and maybe a didgeridoo just for fun) here's a January 2020 update!

Here's the meds I'm currently taking and why

Prescription Meds

• LevoTHYROxine 125 mcg AM (taking for my hypothyroidism. I've had that for 17 years.)
• Lyrica 75 mg BID AM&PM (taking that for my stocking glove peripheral neuropathy. I've had that for 5 years since treatment for the Latent TB. Likely caused by the treatment. It keeps me from feeling like I'm being eaten alive by fire ants.)
• Cymbalta 60 mg PM (taking for joint and muscle pain. Also it helps for depression. I recently tried to wean off and was rewarded with severe pain. It's a must take.)
• Baclofen 20 mg Three times a day(TID) AM – 12 – PM (a magical pill that helps with my muscle cramps and spasms. This is a muscle relaxer commonly given to people with MS. I found it on my own after researching treatments for muscle cramps and spasms after my neurologist told me my only option was CBD. Hmmmm. Nope. The Baclofen is wonderful.)
• Topiramate 25mg BID AM&PM (This is "Topamax" that I just started for "migraines." Both my new neurologist and an ENT Dr told me I have migraines. This was suggested. It's an anti-seizure med but is supposed to work for migraines. We'll see. So for it has a lot of side effects.)

“Mito Cocktail” for Mitochondrial Myopathy

• COQ10 Enzyme 1,500 mg total daily (300mg 5x a day)
• L-Arginine 500mg daily
• Vit. D 2,000IU AM
• B-2 400mg AM
• Magnesium 360mg AM – 500mg PM
• Feverfew 100mg AM
• Wild Alaskan Fish Oil 1,400mg BID AM-PM

(The first two are amazingly helpful. I'm honestly not sure about the rest.)These are all recommended for anyone with any kind of mitochondrial issue. It's the first line of defense and often the ONLY "cure" for mitochondrial disease of any kind.
-gulp-

PRN - Take as needed

• Albuterol Inhaler PRN (apx 1x daily)(I take for asthma. I've had increasing problems with breathing last year)
• Acetaminophen 500mg +2 PRN (apx 2x per week) (I take this for pain. It works better for me than Ibuprophen) 

Yes! All those drugs are really helpful. Well, almost all of them. But what makes a world of difference for me is rest and sleep. If I get enough of it I can function ok... usually... till around noon and then I start to get tired. 

By 3pm I REALLY need a nap. Then I nap from 3 or 3:30 till 5:30 or 6. That's what my body really needs. If that doesn't happen I feel super punch drunk all day.

I like to be in bed no later than 9pm. Yup. That's WITH a giant nap. Then I sleep from around 10 till 9AM. My sleep is usually pretty interrupted with having to pee a lot and drink a lot. Even with a cool mist humidifier right by my face I have dry mouth pretty bad at night. If I'm at all sick that gets worse times a thousand for some reason. 

I stopped shaving my legs and arm pits.

Here are some recent changes I've made to make my life easier and save spoons.

I'm a pretty fuzzy chick by nature. My family didn't give me the nickname "Little Bear" for nothing. And chasing my leg and armpit hair multiple times a week was fricken exhausting. I tried everything. Regular razors. Sensitive razors. Shaving cream. Razors with shaving cream built right in. Electric razors you could take right in the shower with you (so I could use them on my shower stool). 

But hey! Being six feet tall with legs to the sky (as my pictures can attest to) that still took forever and literally all my spoons for the day. I threw in the towel at the beginning of the year. And you know what? I actually don't have as much leg hair anymore as I though. I think after so many years of shaving many of my follicles have given up the ghost.

No more coloring.

I'm also going back to my natural hair color. 

Although the henna was fun and I did have one last dance with the box dye devil... none of it is ME. It all takes time, money (something I'll get to in a minute) and is just a cultural construct of beauty that I really don't need in my life. Again, it also takes spoons that I'd rather spend on other things like time with my family, art, writing, etc.

Sticking to my budget

We have a family budget and now that we bought Pablo it's VERRRRRRRRRYYYYYYYYYYY important that I stick to it. Like 100%. As in no more buying myself a little shiny bauble. But come on... it was my birthday and they're natural sapphires, miner cut set it platinum, real vintage from England... how could I resist!?!? Well... obviously I couldn't. But that's it! Last hurrah. I'll be good now honey, I promise.

Ok, back to symptoms.

They're the same really. I'm up to the full dose on the Topamax after two weeks which is 25mg 2x a day. I feel even dizzier, more tired and out of it than before. I'm hoping that's temporary. I'm willing to give it a month because trying to be as healthy as possible is my full time job.

Even though I meet almost every criteria for a Vestibular Migraine I'm not completely convinced that's what's going on with me (despite two wonderful professionals telling me it is). Why? Because I have these symptoms all of the time. They don't "come and go" or "trigger". They only get worse and very rarely get better. 

What makes them worse is physical exertion or a major visual trigger like flashing lights or staring at contrasting vertical blinds for more than a few seconds. Rest does make it a little better, but it is never, ever "gone". 

This feeling of dizziness, foggy headedness, constant exhaustion, forgetfulness and chronic pain is why I was no longer able to work. It had nothing to do with my lack of mobility. I can always work around that with my job. But not being able to track in a conversation or having my vision blur out or suddenly being exhausted, that I can't just "work around". That was a deal breaker.

So that's where I am. I very rarely drive and if I do it's super short distances. My mood is ok. I have bouts of feeling in limbo still because my permanent disability isn't secured yet. But I am on temporary disability for 7 more months and my student loan dismissal based on disability was approved, so that's a very big deal. I do feel I'm making some progress in my life as Pablo shows. He's like my personal boat taking me off into my new future and I appreciate that a lot. 

I appreciate my family, my medical team, my good health care and insurance, my puppy, my home, my wonderful healthy food, my plants that make me smile when I see them, my delicious coffee, the lovely town I live in. I am a very lucky woman in so many ways. 

My husband is the love of my life and my best friend. I'm so lucky to wake up with him every day. So I like to notice what I have instead of what I don't and what I have is a LOT!