Coming Back to Yourself

Since my fibromyalgia diagnosis, many terrible things have happened.

I’ve lost my job, I’ve lost most of my friends, I’ve lost my apartment and two cars. But I’ve found I’ve gained a lot, too.

I may have lost my mind but my heart’s come on pretty strong. The things I’ve loved have never left me. My closest friends are still here, as is my family and fiancé, no matter how many times I go Dr. Jekyll/Mr. Hyde at them.

My dream of going to graduate school came true. I read all the time; it’s my biggest solace. There is yoga every morning, a dog in my lap, a sketchbook on the table, a notebook in my purse, my collection of odd lipstick and my wearable glitter. I have, honestly, gone out in green lipstick and glitter on my face to the falafel stand. My fiancé has agreed to help me dye my hair purple after our wedding.

The love is all still there. It never went any where. It just takes some eyes to see it.

This love is what makes living with chronic illness possible. The yoga, the dog, the glitter, and the books are all coping mechanisms that help me block out the pain. Without me I would live in a rainbow free world in black in white where all I could feel is sorrow.

So when you see the things that bring you joy, take a little snapshot in your mind. Let the world know how grateful you are for dogs and books and glitter. Be annoying about your love. Let it overflow, because without it there is desolation.

This is how fibromyalgia brought me back to myself after a huge disconnect of trying to fit into corporate America and “the man.” I was forced to listen to no one but myself to live my life.

Is this a positive? Definitely yes.

Let the love flow through you, y’all.

And now, a recap:

Pocket full of starlight: all the positives in my life are all still there and some have come back to me in the wake of my illness.

Pocket full of darkness: my computer crashes every 5 minutes so all my posts are written on a smartphone. That’s why this sounds like this was written by an 11 year old.

Painsomnia, Worry, and the Dark Side of Fibromyalgia

These past three days I have been unable to do much of anything, even sleep. It’s turning to the close of the semester and I have deadlines coming up for a website I manage. The smoke of worry from the pain fire in my abdomen is rising and choking my lungs.

Chained to an armchair, I try to remember aspects of my identity, or who I am outside of my chronic pain. The things that make me up that aren’t the 16 pills I take, the IUD my body is rejecting, the flames in my esophagus, the knives in my shoulders, or the tension in my feet. I can’t ignore these awful things. My mental powers are not that strong and I would be jealous of anyone who could. Perhaps, I would think to myself, this person is kinky. Maybe they have more secrets they’d rather keep secret to cope with the pain they naturally find themselves in.

But when I am in involuntary armchair mode (which, yes, is way better than involuntary bedridden mode but more guilt inducing) from nights of not sleeping, I think of Harry Potter and the Chamber of Secrets.

In Harry Potter and the Chamber of Secrets, Harry obtains the sword of Gryffindor, fights a basilisk in a gross sewer, and is rescued by Fawkes, the Phoenix.

Right now as I rest in involuntary armchair mode, I know that my body is in some gross sewer under Hogwarts, being manipulated by Albus Dumbledore, fighting the basilisk of fibromyalgia.

All of that sounds pretty bad.

However, I am a true Gryffindor. Once I said “not Slytherin” and I have the sword of Gryffindor. My body will slay the basilisk and I will make it out of the sewer of this pain flare. And if I retreat to my bed, I will rise like Fawkes.

With that, a recap:

Pocket full of starlight: if you can’t find the starlight today that’s alright. Maybe you don’t even like stars or shiny things. You could be a Death Eater. Today is your day for involuntary armchair mode.

Pocket full of darkness: although I’m not generally for conversion therapy, being a Death Eater is generally a Bad Idea. Supporting genocidal demagogues is Literally Evil. Check yourself before you wreck yourself.

How Acknowledging the Good and Bad Helped Me Cope With Fibromyalgia

Have you ever been told “focus on the positive, eliminate the negative?” Do you have a problem following through on that advice?

That saying is almost like trying to ignore a tree that fell through your roof and now it’s raining. It’s also freezing outside, and outside is now inside your house. How are you to ignore the hole in your roof, the tree blocking your way, the rain on your floor, and the freezing temperatures, while somehow making it go away by focusing on the fact that at least the tree didn’t land in the master bedroom?

This is how I often felt when people told me to focus on the positive when I expressed being in pain after my fibromyalgia diagnosis, or the years of suffering leading up to it. I believed I had to acknowledge my suffering as well as the happy parts of my life in order to be productive.

After all, how are you supposed to get out of the freezing rain and turn your house warm and cozy again if you cannot admit that a tree fell through your roof? No one wants a hole in their roof caused by a fallen tree, but if it is ignored, it cannot be helped.

Growing up, I often felt deep emotions. Soaring happiness, rapid excitement, hollow darkness, and deep sadness. I had the entire spectrum of feeling. Usually, no matter the situation, I had complex emotions that confused me. At my grandfather’s funeral, I attempted to help serve food, set up tables, and had no idea I was supposed to sit with my grandmother. Her sisters were there, and as she never saw them, I thought they would be a bigger comfort to her than me. As someone who frequently helps at funerals, I had only rarely been part of the grieving family to be supported. I did not cry when my grandfather died, even though I missed him and loved him. The night before his funeral, I saw a silvery image of him come to hug me as I tried to fall asleep. My grieving process is still going on, and he died five years ago when I graduated college. After the initial numbness passed, I was greeted by regret, anger, and questioning.

This is just an example of how I experience emotions. Another is disaster planning. I have a bad habit for looking at a situation, seeing what could go wrong, and planning for the worst proactively. It’s not an entirely bad trait. But sometimes I will be excited about an idea, will have already run my disaster planning algorithm through it, only for my mother to shoot it down with extremely shallow disaster planning that was, well, preschool disaster planning, telling me I don’t think through things and proceed to forbid or simply kill my vibe. If I’m honest I think the fact that I am expressive and have more of an emotional ecosystem than my parents lead me to believe they think I cannot be rational, so when I am excited, I must have a bad idea.

The truth is, we all have emotions. Some people simply wear masks, like my parents. I am a bit too honest for facades and my feelings give me intuition that I operate out of. It also gives me a holistic approach to situations.

Growing up and today, disaster planning while feeling a positive emotion and not experiencing a total eclipse of the heart when tragedy happened prepared me (somewhat) for my fibromyalgia diagnosis.

When I was first diagnosed, I knew that not everything made sense. I fought for answers, found community, and researched coping skills. My previous posts outline some of these.

However, my greatest teacher for managing fibromyalgia is the yin-and-yang concept.

There is some good in the bad and some bad in the good. The light side and the dark side complete the whole.

Basically, imagine walking into a lit room with a couch in it. The light casts shadows in the room and on the couch you go to sit on.

Your depth perception as you walk to the couch and how you see the couch would be way off if you couldn’t see the light or the shadow. You may not possibly be able to make it to the couch!

When it comes to chronic illness and chronic pain, it is ridiculous to ignore our suffering. However we will not make it out alive by merely focusing on the shadows.

This is why I typically end each post with “pocket full of starlight” and “pocket full of darkness.”

With that said, a recap:

Pocket full of starlight: darkness has a friend, it’s name is light, and they rely on each other. For every pain you feel there is something lingering within waiting to shine on you.

Pocket full of darkness: in order to take the good, you must take the bad. Sometimes even with all the disaster planning in the world we cannot avoid disasters.

How to Make any Man Think You are Irresistible in 12 Easy Steps

Ladies, have you ever dreamed of a man who simply stares at you and says, “wow,” every time he sees you? I know I did, and it happened to me. I’m here to reveal my feminine wiles to you so you too can bag your dream man.

12 Steps to True Love, by Dr. Spoonie Love

1. Be yourself.

2. Develop a debilitating chronic illness that erases all of your precious hard work and goals.

This is the super fun part where people who don’t know you at all may start thinking you’re some poor dumb lazy loser who didn’t achieve the thousands of things you accomplished. You will need to remember these people are idiots, but at this step in the process you have amnesia. The idiots have stolen your brain. It’s not your fault.

3. Make sure you gain 100lbs. Really turns those men folk for a ride.

4. Become so inflexible you cannot scrub your tub or clean your shower.

5. Lose the ability to shower and remove those unseemly leg hairs.

6. Make sure your hair looks like a poodle on a muggy beach.

7. When your hands start to hurt applying makeup, this is perfect, as men prefer a natural woman. You will never have to worry about swimming dates again.

8. Begin to worry about swimming dates due to lack of coordination.

9. Experience an influx of extreme emotions as you realize you have developed a chronic illness and will never be deserving of love or a swimming date.

P.S. You are very wrong about this, which is the point of this ridiculous listicle. xoxo

10. Sit back as the people who already love you continue to love you, and attempt to explain things as needed using any method but interpretive dance.

Should interpretive dance be forced upon you, quietly excuse yourself to a nice couch and use one of your spoons for self-defense.

11. Realize that some people, especially yourself, aren’t going to leave you.

12. Understand that things will be okay, and you are worthy of the people, male and female, who love you.


Going against all common sense, I cut my hair into a curly pixie this past weekend. Stranger still, my fiancé stares at me in awe and breathes “wow.” I think it’s because I followed my 12 step program. Fellas, am I right?

The Beginner’s Guide to Positive Thinking

A positive outlook is a skill. Some people master it at three seconds old, three years old, or thirty years old. I like to think of it as a martial art with many different disciplines. There’s the classic Kung Fu and TaeKwonDo, great at destabilizing assailants of negativity, the slow and poetic Tai Chi, perfect for artistically overcoming your inner demons, and the energetic and strategic Fencing and sword arts, suited for those who love to victoriously skewer their suffering on a pointy metal object.

Some people never enter the martial arts studio, some enter later in life, some stay as white belts, some make it to the sparring levels and stay there, some practise swordplay and bloodily dash their issues gleefully and goreily, and some dedicate their lives and become masters. Gifted folks have a natural talent. They may naturally gravitate towards self-defense and fighting arts, and know maneuvers without even stepping foot inside a studio. Many may ask mom for lessons at age two after running around pretending to be a Teenage Mutant Ninja Turtle or Batman, or mom may sign her child up after noticing disruptive behaviors with other children.

Hi, my name is Spoonie Bard, and I was the white belt, Ninja Turtle, Fencer who tried hard, but never got it. 

Oh, and I had disruptive reactions too. Like feeling overwhelmed when my chronic illness appeared, numbness upon the deaths of close family members that confused me, and bitterness at the unexpected path my life took despite my hard work and integrity.

These came with disruptive behaviors, like crying, spending too much time thinking, complaining excessively, messiness, and neglecting hobbies I once loved, such as music and art.

First, I will say that these are natural reactions to life events. It’s also called depression. Depression is actually expected when a trauma occurs in a person’s life. If your pet died tonight and you weren’t sad about it, I would probably think you were a monster. Most people would! That’s a silly example, but think about it. When bad things happen to people, it is rational for us to assume we would have a negative emotion to accompany the event.

Okay, so sadness and negativity is normal. Where does positive thinking fit into this?

Let’s first examine my definition of what life is all about.

  1. Life is not about eliminating what’s bad, or all of our life’s problems.
  2. Life is about reaching our full potential.
  3. How we reach our full potential is by investing in ourselves.
  4. We invest in ourselves by spending time on things we like, knowing what things we like, and ultimately knowing who we are so we can be ourselves.

Life is not about solving problems

Think about it. What are problems? Why are they problems?

There are obvious problems like “I need to put a roof over my head” or “I am experiencing serious pain.”

Let’s examine the markers that go with each of these two major problems.

What if needing to put a roof over your head was not a problem to be solved?

What if you still needed to put a roof over your head, but instead of it being a problem to be solved, it was an opportunity to be met with your full potential? Not necessarily a passion of yours, but your abilities? 

What if this problem of needing to provide was a blessing? So many people cannot provide for themselves. They cannot work, are unemployed, or are at the mercy of someone else controlling them.

Next, “I am experiencing serious pain.”

This is hard for me. I admit I am still working on this one a little as a white belt, but this is what I’ve worked up.

Try to turn this problem to be solved into a relationship with your body of affection and compassionate curiosity.

Engage with a dialogue with your body. Please seek medical care if you can. But when you’re not at the doctor or taking medications, practise talking to your physical self. Close your eyes and breathe deeply. Ask your body where it hurts the most and try to sense if there is an emotion there. Keep asking the places where your pain is questions. Get to know your body and the pain it harbors. 

Your Full Potential

The term “potential” always bothered me. As I grew up, people always told me I had so much potential. In this post I am not referring to monetary or physical success. I am talking about personal fulfillment.

Investing in Yourself

This is the key to positive thinking.

We spend so much time running around with self-help books, diets, exercise, so concerned with the person we need to be, the person we were told we should be. These are all actions that take away, or subtract, from who you are.

Let’s talk about adding to yourself.

When was the last time you sat down and did something for yourself, even if it was small, like listening to an audiobook of your choice on your commute? Or instead of scrolling through social media before bed, you read up verified sources on a subject you’re passionate about?

Passion and curiosity are the soil and water through which the roots of a grounded, healthy self grow. From here the flowers of a positive outlook blossom and your happy little person plant is sturdy enough to make it through the aphids and the pesticides of life. 

The big lesson here is that instead of working so hard on subtracting negative traits from yourself, instead focus on adding to positive things you like about yourself. 

Knowing Yourself

When you have a solid identity, it isn’t easily shaken. True, identities change and fluctuate over time, but being in a relationship with yourself and allotting time to seek yourself out regularly buffers this a bit. 

If you can like yourself because you do the things you like, you can charge your positive energy batteries for the storm of life. Here, you can begin to sense the inherent value all human beings are born with. 

Remember: you have your own light and it is already on. You just have to remember to take your sunglasses off inside the sanctuary.

I hope this was helpful, and I wish myself and you all out there on your journeys to positive thinking. Remember that positivity is not about ignoring the bad, never feeling sad, or invalidating your dark experiences. It is a path to wholeness in our somber, embarrassing, and painful moments.

Ultimately, positive thinking is an equation. Sadness + gladness + investment = positive outlook.

A recap:

Pocket full of starlight: positive thinking can be learned, and you have all the tools already inside of you.

Pocket full of darkness: there wouldn’t be positive thinking without negative thinking. Honor your journey and the journey of others. No one knows anyone else’s struggles. You can be in the dojo, on the playground, or trying to stick a straw in someone’s ear in the school cafeteria. 

The book of love

It’s almost a month left until my wonderful, creekside spoonie wedding, and I’m left with some thoughts.

Photo credit: Tauni Joy photography

Communication is hard. Love is hard. It can be scary. Love is a literal battlefield, but as long as you and your partner are on the same team fighting for each other, it’s worth it.

Photo credit: Tauni Joy photography

To take someone as they are every day is a blessing and a challenge. My fiancé has Aspergers and cannot smile on command, as seen in the photos. He can smile in real life. When these photos were taken a few months ago, he was coming down with shingles and feeling sick.

Photo credit: Tauni Joy photography

He tried his best to smile. The next day when the shingles appeared I drove him to the doctor despite my own illness showing up and not being able to drive very well. But I cherish these precious photos – the colors, the lights, the way we accidentally matched.


I ordered my engagement photos dress from Chic Wish, which I was initially afraid was a scam. But the dress came in, and it fit! It was the most unique thing I had ever seen, and matched my fiancé’s seersucker and khaki ensemble. Plus it made me feel beautiful.

It can be hard to feel beautiful in my new body. I looked through my old photos of selfies over the years and I looked at my model days. I look sicker than I do now – face all hollowed out, giant under eye bags.

And with that, a recap:

Pocket full of starlight: loving yourself and someone else is worth it though not mutually exclusive.

Pocket full of darkness: all the things they tell you about love aren’t really true. The truth you find comes for your own self.

Photo credit: Tauni Joy photography

Beauty can come late

Pink roses with pink text "Beauty can come late"

I have a jar of wilted roses in front of my happy light. It’s a wonder my office doesn’t smell like roasted roses, because the happy light has been on for about 12 hours. By the way, a happy light is artificial sunlight, and if you don’t turn it off after 30 minutes, it can catch fire. Maybe it’s the cold or maybe it’s luck, but my flowers (that I’ve had since August) haven’t caught fire yet. Or my house. It’s all right, it’s all good. Have a good time.

And I think about my roses not catching fire, and what it means from a metaphorical standpoint, because I catch on fire frequently. Right now my shoulders and right knee are on fire. But it’s all right, it’s all good. Have a good time. I guess. As far as mornings go this isn’t too bad even though my dad broke the coffee pot. I guess it’s a penny arcade.

But I guess if you’re a rose, even when you’re really dead, long dead, you’re beautiful. And I think about all the times I’ve felt dead inside for years, such as wasting my childhood and teenage years feeling empty inside – and not in the emotional sense. I couldn’t feel anything. Until I took yoga in college for three semesters, I couldn’t see anything. I wasn’t aware of the world around me. It was like having tunnel vision. What I saw was a laser focused object right in front of me in order for me to move. Other times, when I didn’t have an object, it was all a gray or black blur.

See, the beauty was still there for me, even after I came back to life and gained my vision back. The wilted jar of roses is still beautiful, though not socially acceptable, although my fiancé has not said anything about it.

I’m on The Latest Kate’s emailing list and today’s illustration really struck me. It was a pink dragon (!favorite! thing!) that read “Sometimes all we can focus on is making it through the day. And that is enough.”

Just make it through today and you can still have your unburnt jar of dead roses that are still somehow beautiful, and make it to the next morning to have a pink dragon cheering you on (and a plethora of other blessings).

So, a recap:

Pocket full of starlight: there’s lots of beautiful things to see in this world, even if you arrive late.

Pocket full of darkness: you might set your house on fire in the process.