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!

Unexpected Interests

I never ever would have guessed that I would become someone who loved Yoga. Or that I could ever DO yoga ever again. But yoga has been the absolute best thing for my body since I regained my strength and energy. THE BEST!

I mentioned in December that I was even transforming our "guest room" (that used to be my "daytime sick room") into my own Yoga Studio. Well, it's about finished. It still needs a few things here and there (like a balance bar) but overall it's great and very usable. I love it.

I printed out and framed a lot of body positive and Yoga messages. Also some poses and routines. Instead of just taping those to the wall I used the vintage looking black corner tabs. Like from old timey photo albums. I love those.

The space has been very rejuvenating for me. It's the perfect size for my yoga as well. It's a space where I can meditate, be creative, make art, relax, read with my dogs or get harassed by them as I try to get my "flow" on. 

Yoga has been so helpful to make me feel strong again. It builds strength, balance, flexibility and helps with my breathing too. It makes me feel more grounded. I also tend to dissociate from my body and yoga brings me back to it in an incredibly positive way.

I used to hate it and not be too fond of people who did it. I thought they were a bunch of wheat grass sipping, no bra wearing, tree hugging twigs. Now here I am hugging trees, sipping veggie juice and getting on my "Namaste." Life is so unpredictable.

What 51 looks like

with no hair

for now

nothing's permanent

I do miss an in-person class though. So this Saturday I'm going to check out our local yoga studio and see if I like it. I think all that education turned me into a "class" person. That's it for now. "The light in me sees and acknowledges the light in you. Namaste."

A Second Teenage-hood

Remembering back to when I was a teenager, this time in my life doesn't feel all that different. I'm not talking about the pimples and stress. But the discovery phase of everything feeling new and exciting. Who do I want to be? What do I want to look like? What are my tastes? What tools do I need for the life I want and for who I am NOW?

The person I was two months ago could not be any different from the person I am today. I am full of energy and ready for an adventure at all times. Strangely enough, my style has also changed.

I shaved my head yesterday. #3 all over. I love it.
Going back to my natural color.

I've always been incredibly organized, but now I feel I'm even more so. The tingling of modernism aesthetics is pulling at my maximalist style. The "bohemian a la mode" that I've loved for so long is going by the wayside to be replaced by Ikea cleanliness. White is my new favorite color for my house (it was orange and teal.) I find myself wanting to purge most of my belongings and start over fresh.

My local Goodwill must be thrilled with all the donations they've been getting from me. Including my BiPap and Cough Assist machines. I have my old blue electric wheelchair up for sale on Ebay, but may just end up donating that as well. I'm keeping my new chair and the wheelchair van for now. 

I'm humored that I most needed to buy good walking shoes along with more bras. I stopped wearing bras 99% of the time when I was so sick because they took way too much energy to take on and off. Then obviously my shoes didn't matter much since I used my chair any time I left the house. Now I need a lot of support for the weaker muscles in my feet. And I actually want to wear a bra. I'm enjoying having this time to explore. It is a real luxury.

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.

Pushing Myself Hard

Spring is here where I live and I have been a busy bee. My Mom's swimming pool is back open and we were the first ones in it again. It felt fantastic to be back in water. There's no other workout like it. From the first day back in the pool I decided I was going to push my muscles.

Still working out with water weights.

I felt like all winter I physically atrophied. I did the basics, but not really anything that pushed me physically. The only way I can keep what muscle I have (or hopefully build on it) is with pushing myself. I'm already in physical pain every day. There's nothing like fresh pain to make you forget your old pain. And boy do I have pain!

But I also think it's a kindove good, almost normal pain. Like the buff girl limping as she leaves the gym. It is also teaching me about my body. I'm much stronger than I think I am. Strength isn't my problem. Stamina is.

Getting the summer garden ready took a lot of strength!

I've also learned that my lower back is the first muscle group to feel the pain and to give out. My back brace is a big help, but it doesn't solve the underlying problem. I'm going to do some targeted exercises in the pool to see if that can help. 

I have my recent MRI to thank for this push. It was incredibly painful to endure laying still on the table. My right leg and back were screaming at me to stop. But I pushed through the entire process. I was able to go much further than I thought I could. To tolerated more pain then I thought. This got me thinking about the limits I place on myself and my body with my mind and my fear of pain.

Now to be clear, I'm not going into Rhabdomyolysis or running miles around the block. I'm cleaning, gardening, moving small things around, re-potting plants (that are heavy for me.) Pushing myself in all these areas of what I usually do. I've been cooking dinner at night as well. These are all tiny things to most people, but each activity leaves me drenched in sweat. Seriously. I can't remember the last time I sweat this much and for so many days in a row. I do not enjoy that part, but I do like feeling stronger.

I masked out where our new TV is going.
This was a ton of work!

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 

When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 

Most Important Part

I'd like you to meet the most important part of my life. My husband of 23 years, my partner for 25 years, the father of my son and the person I couldn't do without. 

I think most people imagine their husband/wife/partner to be a very important part of their life (at least I hope so.) But I know that mine is even more unique.

Other than making me laugh all the time (and laughter really is great medicine), he has supported our family financially, comes with me to every medical appointment and procedure that he can, rubs my back every single night and reads me a story out loud every single night. This was once a loving night time gesture and a fun way to spend time together that didn't involve a screen. But over the past 3 years it has become much more than that to me. It's the highlight of my day every day and the main reason I get any sleep at all. What a guy! Of course he does much more than that, but for the sake of space I'll keep it more focused.

Having a companion in life is the key to good health. Isolation does horrible things to both your body and your mind and any burden is much lighter when shared. Even on my worst day I feel my pain and mood lighten when my husband comes home. 

My superhero of a husband also tends to see the good everywhere. The good in people, in intentions, in situations. He is incredibly trusting, kind and generous. I tend to be much more cautious about who I trust and vigilant with people. He brings out the best in me. 

He's a lot like another man I adore, Mr. Rogers. He's calm and patient. Two things I have to work very hard to be in any way. You'd love to have him as a neighbor. 

I have no idea where the future will take us both. But I know that I can tackle anything that comes my way with him next to me. I also know that I can count on him and that anything I share with him will be heard and taken seriously. I think that makes me very lucky!