My Two Loves

For as long as I can remember (and that's quite a long time now) I've had two major loves in my life. Passions really.

1- Helping people

and

2- Art

I remember if there was ever someone in need or who looked "different" I would befriend and help them right away. I choose my best friend in the first grade not based on if we wanted to play the same game, but because she was so physically unattractive she was getting teased. Helping others is something I was just born to do.

A recent bowl of mine waiting to be fired.

I am also a born artist. My father was (maybe still is?) a visual artist and a musician. My mother is also very creative and has an eye for design. My grandfather said he had someone in the family who was also an artist. I love any medium I can get my hands on, but oil paints are my real passion.

I like photography because I always have my camera on me (my phone). Oil paints are both very expensive and very toxic. You have to use a lot of caution working with and around them. It was fantastic when I had a whole studio to work in. Doing it from home is trickier. Ceramics has been a joy. I never have any expectations for myself. I just do what I want and relish the process.

Having these loves you would think I would want to do art therapy with people? Not really. I like being "in the zone" and alone when I do my art (ceramics is the exception). Each requires my full attention. Mixing them feels strange.

So now that I have some strength and energy back, who get's that attention? What do I focus on? I feel pulled to reignite my love affair with painting. But I also want to get back to helping people more. Is there room for both in my future? Or will something else suffer.

I already feel like each day is bursting. Where do I squeeze in the time for my loves? That's a challenge most people have. The answer is to just make it a priority and do it. Just do it. 

I AM

When I became disabled I had a very hard time not comparing myself to my "old" able self. It was constant. If I spent time in the garden watering I would tell myself "Well, you USED TO be able to be out here for hours". See what I mean? Comparisons.

Nothing good ever comes from looking behind. It has taken me a very long time but I feel a shift. I think I finally moved past comparing myself to what I used to be able to do. It has been a huge liberation!

I can't pinpoint what caused it. I've been aware of how damaging it is and unhelpful, but I just couldn't stop it. It literally had tentacled its way into every aspect of my life... just like my disability. But unlike my disability it is something I can control.

What helps is being mindful. Fully present in each moment as they come. Not having judgement on my life and what I can and can't do. Just enjoying it for what it is. Once I made that shift in thinking, I was FREE! Free to enjoy my life and each moment as they came. 

So now I AM a person who:

• Can ask for help
• Lets others help me
• Does my best and lets it rest
• Is MUCH happier
• Is seeing the beauty all around me
• Is more confident
• Is less judgmental of others
• Has a lighter heart

What Saves Me Spoons (and makes life easier!)

I've posted in the past about the things that make my day-to-day life a bit easier. But I'm always finding and trying new things, so I wanted to share my latest spoon savers.

#1) My Panasonic Wet/Dry electric shaver.

I used to use a typical razor in the shower and shave my 6'0 legs. The thought of that now just cracks me up! No way could I stand balanced in the shower and hand shave any part of me. Enter my wonderful, precious shaver. I use it dry about once or twice a week (despite my Italian heritage insisting I use it 5x a day at a minimum.) I use it while seated and as comfortable as I can be. You could however also use it with a shower chair wet in the shower. I just find for me that it works better when I'm dry (and let's face it, just showering is spoon sucking enough as it is!)

#2) Having super short "boy" hair that's my natural color.
I've had very short hair for a while now, but I keep getting it cut even shorter. The reason for that is 2 fold. 1 - My arms tire very quickly when raised up over my head (shampooing, conditioning, blow drying, styling) and having ultra short hair cuts that time WAY down. 2 - I'm growing out my color. Why? Although I love the look of dark hair (Yas Wonder Woman!) I hate the chemicals and maintenance. And again in comes the arm strength issue. I'm embracing my silver strands, but I hate the "two tone" look, so I keep getting it cut as short as I can bare. Which is pretty freaking short!

Me literally right now as I write this blog.

Yup... it's THAT short.

#3) Single serving and pre-made foods.

Yes, you pay more. And yeah... it's worth it! At least for me. I save a lot of spoons in the morning if instead of getting the gluten free bread out of the fridge, putting it in the toaster, finding a ripe avocado, cutting it up, spreading it on my toast, adding pepper flake and sea salt (because I'm fancy like that) I just open up (or even better have my husband open it for me) a small cup of my favorite yogurt. Add a banana and BINGO! Low spoon breakfast. Seriously anything I can do to save energy is worth it in the mornings. 

My favorite brand and flavor. 

If you haven't tried Icelandic yogurt, I highly recommend it!

#4) A HUGE capacity washer and dryer.

Less time back and forth = less energy used. I just bought a massive 5 cubic feet GE washer. I think my old one was 3.5? This one fits a whole basket in 1 load and was worth every penny. I wish someone would have told me that a big washer would save me energy and time. I would have traded my old one in sooner.

Mine is a GE 5-cu ft High Efficiency Washer.

You don't even have to clean the lint trap!

#5) Mobility Aides.

Although these are further down on the list they're the most important tools I have. All of them help me save major spoons, help with pain and allow me to do things I couldn't otherwise do. Hopefully soon I can add "electric wheelchair" to this list. But for now it's enough to get through my daily tasks.

Electric shopping carts

Transport wheelchair

Nordic Pole walking sticks

My #1 used tool the Rollator (with a seat)

#6) Adapting my house.

Making adaptations around my house has been fantastic. I have a small grab bar in the shower, sitting stool in the kitchen, a step stool with a handle (also in the kitchen), shampoo and soap dispensers in the bathroom and a tray for eating when we're sitting on the couch. I'm sure this list will get longer over time, but for now each of these changes has been hugely helpful. 

My cooking stool (with my old step stool)

My bathroom helpers

Patiently Being Impatient

I've become an expert at patiently being impatient. Patience is not one of my many (many) virtues. I've never been a patient person. However, when you're a patient, you HAVE to have patience. When my son was little there was a Sesame Street song that just nails it. It goes "You have to be patient, to be a patient..." Oh Maria, you wise a$$ woman you. 

So here I am. Patiently waiting to hear back from my Rheumatologist about a question I asked her. Patiently waiting for my May 1st appointment with my primary care doctor to explore anything I can do or take that might help while I PATIENTLY wait for my June 27th appointment with my new neurologist. See... that third one got me. I'm out of patience (and apparently can't spell "rheumatologist" to save my life.)

My BFF - the cup cozy for all cold things

And meanwhile back in pins, needles, numb, temperature sensitive, fire-ants-are-eating-me-alive land, I breathe and remind myself to be patient. 

I read this really wonderful quote yesterday from The Book of Joy. "If something can be done about the situation, what need is there for dejection? And if nothing can be done about it, what use is there for being dejected?" -Shantideva

I just adore that word "dejected." YES! I feel dejected! I feel it hard core! To my gut! To the PAIN (a little Princess Bride humor for you there.) And to force myself to instead feel hope, optimism, patience, is no simple task.

The Dalai Lama says that "As we recognize others' suffering and realize that we are not alone, our pain is lessened." I completely agree. I think that's one of the reasons I enjoy reading other people's blogs about chronic illnesses, autoimmune disease and other challenges similar to mine. It makes me feel not so alone. And when I see that someone has similar symptoms or struggles, it feels comforting AND validating.

Most of the time with doctors I feel like I'm trying to describe a world to someone who has no sight. It's just impossible. To share with others who can see what I see and feel how I feel is incredibly liberating. It gives me hope.

Spring is a time for renewal. 

I'm doing my best to join in on the growth!

The Dalai Lama also says that "The way we heal our own pain is actually by turning to the pain of others." I do notice that while I'm at work hearing of other people's deep pain, mine slips away. For that hour I can focus on comforting someone else rather than being the one who needs comfort. It is a very healing experience (hopefully for us both.) I feel very fortunate to do what I do.

I'm working on reaching out and sharing more of my experience with others. Making new friends and opening up more. For today I wish you good health and lots of love and patience.