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.

I'm melting and I can't get up

Oh LORDIE! Summer is here. We've had weather in the high 90's already. Multiple days in a row. Something I've learned about my mitochondrial disease is that heat affects me in a major way. Too cool and my muscles cramp and spasm. Too hot and I very quickly wind down and have zero energy or muscle strength. Jeeze. win-win. Strangely humidity doesn't seem to effect me as much as it did when I was healthy and able bodied. 

It's not all fun and games when I'm too hot or too cold.

I was just outside talking to someone for about 15 minutes. It's exactly 90* outside right now. I literally felt like I was going to die.

Some great tips to keep cool that I've recently learned are:

• Vicks Vaporub (menthol gel) or peppermint oil on your skin will help you cool off fast when combined with a fan.
• Keep ice or a cool towel over your heart and on the back of your neck.
• Keep an electric personal fan on you.
• Wet a scarf and wrap it around your head.
• Stay inside where it's air conditioned. Hah!

IT BURNS!

I'm going to have to learn to turn people down for outside activities during the summer unless at night or involving a swimming pool. A new area to advocate for myself. And like most things going on with my body, this temperature sensitivity seems to get worse every year.

 

Exertion is sometimes worth it

The older I get the more I like my home environment to reflect where I am in my life right now. My values, my hobbies and interests, my friends and family. 

Last summer I updated my special room. I made an art corner and bought a beautiful desk. Everything in the room is special to me and exactly the reflection I wanted it to be. But now...

Upon my epiphany that I want to commit more of my time to my art I realized my space for my beloved ceramics was woefully wanting. My "art table" had become a "catch all" for everything from future craft projects to things I need to return. Even a bath mat found its way in. ACK! 

Is there even a craft table in there!?

Then I realized that the space (once de-cluttered) would be great for TWO art tables. One devoted completely to ceramics and clay and the other for my other art. Painting and drawing mostly. Then my desk (which I'm at right now) for computer things.

Voila!

But as I said previously, I am disabled, so I need to do this in stages. Something I HATE TO DO! I love to swoop in like a vulture and make the space perfect all in one day. I think this will take me well into the weekend. But I see the vision and it's coming along nicely.

Sweating like a sinner in church.

My "Visible" device telling me to stop. I listened.

Even though I have to stop and do this project in spurts I'm excited for the end result. I have time booked at my ceramics studio tomorrow and will buy some clay to take home. Anything I make they can then fire for me. 

I'm also excited to get some of this clutter out of my special room.

Hey Me! You're Disabled Dummy!

Holy hell. I had a big "aha" moment the other day. 

I needed to complete a certain number of hours of training when I renewed my license. A very large number of hours. I've been procrastinating completing them. This past week I finally got down to work. It took me about three hours, but I finished one course successfully. 

Then I spent the rest of the day exhausted and seeing double from so much reading for so long.

Completing just a very small section of what was being asked of me left me feeling physically ill. Why was I putting myself through this? 

No... seriously... why? The more I thought about doing this 10 more times the more nauseous I became. Was I even this person anymore? Didn't I leave all this behind because I'm disabled and can't do it any longer?

Yes. Yes I did. And no, silly. I don't have to do it 10 more times. I don't have to do it ever again if that's what I chose. Because why put my brain and body through that? I can help people in many other ways.

I feel like I've been in limbo ever since I left work. At first I was too ill to do hardly anything. But the last (almost) two years I've been torn between art and therapy and not really doing either that well.

I've always been an artist. I am an artist. I adore making ceramic pieces, drawing and painting. It's time I drop all the studying, quizzes and shit that makes me ill and get back to creating things. Like many disabled women artists that came before me.

Frida Kahlo

Yayoi Kasama

Lisa Bufano

Emily Barker

Judith Scott

And many many more. I'm honored to join their ranks

Me taking a much needed chill pill

2025 Things That Help Me

Anything in the water is wonderful!

I've lived with chronic illness and disability now for a while. Through the years I've tried many tools to help me with my fatigue and muscle weakness. Many modifications as well. Here are some things I have learned that have been helpful to me.

1. Give in to sleep. I used to fight my afternoon fatigue like my life depended on it. I felt I was "weak" for giving in and resting. No more. Unless it's very important (I'm on a special vacation that I really don't want to miss a moment of), I rest every day. For as long as I need. Typically between 2-3 hours in the afternoon. I always feel better for it.

2. Use a stick. Even if I think I don't need it. I'm very prone to tripping and my stick has saved my ass more than once. 

3. Don't miss a dose. If I miss a dose of my medications I'm in hell. It's a very big deal with incredibly painful consequences. Now I let everyone I'm with know that and I set alarms. I never assume I'll just remember. Especially if my routine has changed and I'm out for the day.

4. I don't sweat "accomplishments." I used to feel huge pressure to "accomplish" as much as possible. To contribute something back to everyone and society. I let that shit go. Now I just do what I can.

5. Don't do standing what you can do sitting. Great advice. I try to remember this one as much as possible. Adding a stool to my bathroom was a game changer. I have low outlets there and a makeup mirror. Now I do all my bathroom grooming sitting down. A huge spoon saver.

6. Don't do it alone. I never go to any appointment alone if I can help it. I will always miss things that were said and the doctor's notes aren't always accurate either. But having my husband or my mom with me can not only help me remember what was said, but they can help advocate for me too if needed. Or help me remember things I was going to ask about (if I didn't write it down ahead of time.)

7. Keep good records. Keeping a list of all my doctors, their contact information and a list of my medication has been useful more than once. If I have questions going into an appointment I also try and send them ahead of time and bring it written down with me. I hang on to "after visit summary" sheets if it was an important appointment, if they gave me a referral or if it have medication changes on it that I need to remember.

8. Say "No." I'm still working on this one. I've gotten better about turning down things when I'm too tired, but I still can feel like a "flake" if it's too last minute. That also goes for modifying what I'm doing as I'm doing it. Leaving early, cutting outings short, etc...

9. Keeping things easy in the kitchen. Buying things pre-chopped (or getting my husband to do that part for me), having a food routine and having groceries delivered have all been helpful "tweaks" to how I used to do things in the kitchen. Also, using a stool when I cook is very helpful. Again... see #5.

10. Not putting pressure on myself. Period. This goes for sex, grooming, accomplishments, sleep, parenting... I tend to be an organized perfectionist, but that doesn't mesh well with the life of a chronic illness spoonie. My illness takes precedent and everything else comes second. It is the biggest part of me and demands to be accommodated. I try to keep that in mind of give myself grace.

Always Trying Something New

I'm always open to trying new things to help me function better. The best discovery I've made recently is my "Visible" device. I did a lot of research before buying it. I read many reviews and watched videos. You wear it on your upper arm. I call it the "Anti-Fit Bit." The whole point of it is to help you track your efforts and energy during the day so that you don't over-do it. 

Ok, so I am the reigning QUEEN of over-doing it. Seriously. I've sent my body into rhabdo more than once. Which is awful. So when I first saw that there was a device to help me pace myself better I thought it might be a good fit for me. It is.

It monitors my heart beat and heart rate variability. HRV for short. I get notifications if my heart rate stays up high for more than 5 minutes. I can set how long. Then it suggests I take a break from what I'm doing so I don't expend so much energy.

Interestingly enough my heart rate goes sky high every time I shower. I always knew that showering left me tired. Now I know why. 

Here's what the app looks like on my phone. Every morning it takes a measurement of my heart rate and my HRV. Then it gives me a score. The score is called "Morning Stability" and it's a guide for how your energy might be on that day. You can get a 1 to 5. The higher the number, the more energy you have. I'm typically a 3. I've gotten a 4 a few times, but never a 5.

Once a month it asks a series of questions related to your health, what you're able to do and what you can't do. How hard things are for you, that type of information. Then it gives you a "Functional Capacity" score. This number reflects my ability to carry out day-to-day activities. 

A "Healthy normal person" is typically a 6. Here's mine for May. A 3.2

But here's what REALLY gets my heart racing...

Besides wearing my "Visible" device and trying to pace myself better, I also signed us up for Hungry Root. It's a healthy meal plan and food delivery company. They send me a weekly box with ingredients and recipes to make. We've only had it 1 week, but I already love it. 

It means giving up a lot of freedom with my food. The decisions are all made for me. At first I found this a bit scary. But now I like it. I can program it for what kind of food I want, how many meals I want, how much I want to cook and other things. Right now my box is set for gluten free, vegetarian meals. I'm getting some breakfast, lunch and mostly dinner. I just added fruit to my next order as well.

The only down side is the packaging. There is a lot of it. But we're also wasting less food and eating healthier, so it's a trade off.

The last new thing I tried recently is a drug called Naltrexone for pain. It's originally intended to help people stop drinking and using opioid drugs, but they discovered in very small doses it helps block pain reception. 

For me it gave me insomnia at night and knocked me out during the day. It also made me really sweaty and gave me a headache. I gave it two weeks and then stopped. It did help my pain a little, but the side effects were too much. Sleeping 20/24hrs is no good.

I think the next thing we're trying for pain will be Ketamine infusions. I'll keep you posted.

Now for my Hungry Root healthy lunch. No Taco Bell today.

The Chronic Fatigue Sled

I've been in a tough spot the last few weeks both physically and mentally. I've been pushing myself really hard physically to try and have a "normal" life. Cleaning my house to have company over, entertaining my sister and baby nephew, cooking for them, cooking dinner every night, walking the dogs, playing with the dogs, feeding the dogs, holding the dogs, doing laundry, cleaning our bathroom, vacuuming, corresponding with friends and family. All of this has led to a series of crashes where I can't seem to sleep at night or get out of bed during the day.

I'm also trying out a new pain medication that could be giving me insomnia and more fatigue. I'm not sure since I always have both pretty consistently. 

Me on an Icelandic Glacier 11 years ago when I was healthy

This morning when I just couldn't get up, even though I was mentally excited to go swimming with my mom and spend the afternoon with her, I had a thought. The weight on my body dragging me into bed feels very physical to me. The way I push myself every day and how hard I push feels incredibly physical and mental. Beyond what healthy people experience.

I realized that I felt like one of those arctic sled dogs. Alone and hooked up to a sled weighed down with boulders. On a regular day I push and push through the snow trying to make progress on a steep mountain. So steep I can't even see the top of it. 

Then I just can't go on anymore and I collapse. Sliding back down the trail. Letting the sled pull me down.

When I've recovered enough I start pushing again. Running up the snow, pulling the sled. The weight of the sled may change depending on what's going on with my body. The only thing I know for sure is that I have this urge to keep pulling it up and that back sliding is un-avoidable. 

Days like today feel like that. Like the weight of the sled was just too much and it pulled me back into bed as time slid past me. Well into the late afternoon I was finally able to get up. I feel the pull of needing to accomplish things. Anything. And I push again.

I think what I need to learn to do is pull a little and rest. Pull a little and rest. I need to implement my vacation rules. No more than one big thing per day. 

And if there are days where I just stay in bed and rest... that's ok to.