How Summer's Going

Summer 2025 is more than half over and it's going very well. The less animal products I eat the better I feel physically. I'm also have a lot less pain, especially at night. This is a huge leap from the person I used to be. Someone who would lay in bed at night and cry from the pain. 

I very quickly went from using a motor cart to shop to not even using my handicapped parking. And this...

I haven't seen the dimple in my "bad leg" in at least six years. It's usually always swollen no matter what I do. But now it's almost as strong as the other one. I've been biking and swimming, so I'm sure that combined with my diet is why.

This is how I feel. Like I'm "almost me again." It's the best feeling in the world.

I've been pushing myself, but paying close attention to my limits. I did a mile and a half walk with my husband yesterday and made 10,000 steps for the first time since I became ill.

Right now I eat a vegetarian diet with minimal dairy. And the dairy I do eat is usually fermented, like yogurt. I use oat milk in my smoothie and just eat a lot of Buddha bowls and Mexican with no cheese. The biggest dairy I eat is eggs, which don't seem to bother me.

I've gone from riding my wheelchair to the pool to swim with my mom to riding my electric bike! And yes, I do peddle. 

I work out with pool noodles and water weights about three days a week.

Another accomplishment this summer, no fear of being in the pool alone.

My mom observed that both of us usually feel our best during the summer. I agree. I think I am the most physically active, despite the horrible heat. I also tend to naturally eat a bit lighter and not quite as much.

I have felt hungry almost every night in bed. But I'm down to 281, which is a big deal for me. I'll be so happy to break through the 280's. What a wonderful summer of success!

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.

Feeling Stronger

Back in November I thought I was going to be using my chair 100% of the time by now. Instead I feel like I'm getting stronger. I talked about pushing myself last month. I pushed through a pain threshold that I didn't think I could stand. This showed me that maybe I'm capable of doing more than I thought I could do. Then I started trying to do more physically then I thought that I could.

I'm still doing that. Swimming, gardening, house work and pushing. I'm listening to my body, but I'm pushing it too. Pushing hard like this is new for me. It's painful, but it's working. My strength and stamina are both building.

I explained the pain to my doctor like this. Most people acclimate to the pain of an activity the more they do it. Maybe it only hurts the first few times and then you adjust. For me it hurts every single time. The pain is there and it is constant. And I mean 24-7 pain that would likely put most people in bed. I just push through it.

I tell my husband that if I'm going to be in pain anyway I'd rather be moving and doing things in pain and having the distraction than laying around in pain with nothing but the pain to think about. Even if it causes me more pain to be physical, it's worth it to be stronger.

Pushing to me doesn't mean inflicting something on myself that's impossible or where I'll get hurt. I use my support tools like my walker, back brace, cane, whatever I need. Then I just see if I can do it (whatever I'm trying to do.) Just test the waters. If it feels ok I do more and more. If not then I stop.

Yesterday I was able to walk around our block with my walker. Something I haven't been able to do since last June. Today I took my walker to my medical appointment instead of my chair. I was comfortably able to do it and it felt amazing! I feel very proud that I'm finding my limits every day. Stretching myself to build muscle and do my best.

Magical Mermaid Moments

I've always been in love with water. Well, my mother tells of a brief moment when I was a baby screaming so loud in swim class that they politely asked us to leave. But as long as I can remember I've been in love with the water. Maybe that's more accurate? All water. Lakes, the beautiful ocean, ponds, puddles, rain and my beloved swimming pools.

I was a very fortunate child to always have access to a swimming pool. I spent all summer, every summer in my Grandmother's pool. In high school I was even briefly captain of my swim team. Brief because my math grades were so bad they took me off the team. Horribly cruel. I think anyone crazy enough to swim 2 hours before school and 2 hours after school every day should be allowed to be on any team they want. But I digress. 

Water is my second home. I'm always at peace in her embrace. It's a constant wonder to me even still. Every time I slip in to any kind of water I breathe that sweet sigh of release, of being safe and held. We love each other and I'm never tense or frightened, no matter what form she takes.

I'm most fortunate to still have access to a pool during quarantine. I talked about it here when my Mama and I were first able to go in her pool. Since then we try to go as much as we can. Typically 2-3 times a week. Not only do we swim, but we also love to play around like a couple of kids. We laugh endlessly and it nurtures our bodies and spirits. And every single time I tell myself how lucky I am.

Lucky to still be able to swim. To have access to water. To be able to get in and out on my own. To laugh and enjoy my time. Water has always been one of the biggest blessings in my life. Almost like another mother. So there is something good about summer and all the hot weather after all. I'm able to enjoy the water's embrace on a regular basis. 

Mermaid Time is Here!

FINALLY!!! IT HAPPENED!!! I'm the luckiest mermaid ever.

The swimming pool at my Mama's senior community opened up. The water is perfection. She and I couldn't wait to get to use the pool in her beautiful neighborhood. Covid delayed our anticipated dip, but it also made us all the more eager to be the first ones in.

I adore swimming. I always have. I feel most at home in any body of water. That's why when my muscle disease came into my life two years ago I told people "I'm just turning into a mermaid!" I always knew I was one.

Water is also the very best way for me to get exercise. It's supportive and safe on my muscles. Like all things though I have to be very cautious not to do too much. Which is exactly what happened on the first day we swam. I learned however and adjusted. Now I have two pool noodles. I stick one under each arm and try to just move my hands, torso and legs. Not so much my arms.

The hardest part of swimming is getting out. Not that I don't want to get out (but that too), it's because my body then feels to weigh about 1,000 pounds. It's a serious strain and very challenging, but I just go slow. Even if the pool had a wheelchair lift I don't think I'd use it (*yet). It's a good workout just getting in and out.

In fact... putting my suit on, getting to the pool, unhooking my wheelchair, getting in, swimming, getting out, drying off, getting my suit off, taking a shower, getting dressed again is about 99% of my spoons for the day. It's a serious workout for my body. But it's also one I'll enjoy doing for as long as I can.