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

Who Am I?

How would you describe yourself to someone who has never met you before? What defines you? Makes you... you?

I would say I am a woman who enjoys art and other creative people. I adore my two miniature pinschers and my Autistic son. I've been married for almost 30 years to my best friend. I am a licensed psychotherapist, but I haven't been working for the last five years because of my health. I struggle with serious chronic illnesses, mitochondrial disease and migraines. I am tall with very short salt and pepper hair. I am average size for American women. I wear red glasses (sometimes) and have blue eyes. I am very white. 

I love conversation over high tea, any music but acid jazz and generous people. I have a love and respect for Polynesian culture and that's reflected in my eclectic home. My husband and myself are potters, so yes. I would call myself an artist. I also enjoy photography in a very beginner way.

I love food and travel. I could live in the ocean, especially tropical waters. I'm a water person first then a forest/nature lover. I adore sharks, mermaids, rays, whales, otters and most things that live in the ocean.

I'm a Capricorn and have lived in the same home for 22 years. I have a wanderlust spirit that conflicts with my home-body. I'm also a maximalist with an un-voiced minimalist living inside. I'm a social justice warrior, a liberal, pro-choice and a feminist. Scratch that. A feminist first. 

Oh yes! And I'm 51 years old.

And you?

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

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.