Keeping My Identity With Chronic Illness: Good Day Oatmeal Cookies

With my recent breakthrough in positive thinking after my diagnosis with fibromyalgia, I realize at the core of it is maintaining an identity, or keeping myself centered on who I am outside of my illness.

It’s easy to be swallowed up whole by fibromyalgia. When this happens I become bitter, depressed, and at my worst, angry.

Fibromyalgia anger, or painger (the experience of feeling anger because you’re in pain) is something that scares me. When I have painger I irrationally lash out at loved ones, the people I want to hurt the least. Painger takes my nastiness to a 12 on the Richter scale. It could destroy a continent.

In fact, it was for this reason that I started this blog, so I could have a space to talk about my illness, figure out ways to cope, carve out a community for myself, and maybe help others along the way.

Going back to identity and painger, part of a person’s identity involves the positive things they enjoy doing. Investing in positive aspects of your identity can help with painger.

I grew up in my family’s kitchen. The kitchen was the center of our home. When I was six and my sister was two, we tried making our first recipe. We had been left alone in the kitchen (no, I am not a boomer or gen X; Millenial here) and proceeded to destroy it by trying to make our own custom cake. My sister crawled around on the countertops at age two as we used a hand mixer from the 1950s, boiled noodles, and did something awful to the microwave. At the end my sister and I were covered in splatters of chocolate, and the kitchen was splashed in it. Dad came in and yelled at us, but we did it again. We were just successful the next time.

In this positive addition to my identity, I am exploring something I have always loved: baking. Mixing with your bare hands and pounding bread is a great way to alleviate painger and all kinds of negative emotions!

Vegan Oatmeal Cookies

Ingredients

– 2 cups white sugar

– 1 cup vegetable oil

– 2 tsp vanilla

– 2 Tbsp soy milk

– 2 cups all purpose flour

– 1 tsp baking powder

– 1 tsp baking soda

– 1 tsp salt

– 2 cups oatmeal

– 1 tsp pumpkin spice

– 2 Tbsp molasses

– 1 cup raisins

Directions

Preheat Oven to 350 degrees

Wash your hands and combine wet ingredients

Add in oatmeal and dry ingredients

Wet your hands and use a spoon to make rounded balls of cookie dough. Place the balls of dough on a greased cookie sheet and bake for 10 minutes.

My baker chronic illness warriors, may you have good moments and days ahead to live your identities. Remember even if you can’t, you are still you. There are other ways to find who you are.

We all are, chronically ill or not, learning how to live with what we are.

And with that, a recap:

Pocket full of starlight: the negative feelings that come with chronic illness have remedies. There’s almost nothing a warm cookie can’t fix.

Pocket full of darkness: sometimes our negative emotions can’t be helped. It’s okay if you can’t stir a spoon right now or if you just yelled at the cat. There are thousands of yous waiting on the horizon of life.

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.

Midnight Hour Darkness With Fibromyalgia

It’s been a long week of insomnia.

My head is spinning. I’m getting married in less than a month. I am going to likely miss major deadlines this week. I feel like a pulsating object sending electric shock through my body. This insurmountable equation seems like an impossible mountain of dirty laundry in a filthy, neglected room managed by a debilitatingly lazy person with low self-esteem. This room is my room and the person is me.

This is self-judgment. It is my pain. But it is my pain and my own to keep. I do not wish it on anyone else nor myself. I cry in the darkness of my room and I want to keep the lights off, especially my smartphone. Each article heightens every emotion I feel that maybe I do not belong on this planet. I am an alien with a defective body. Everyone else is a functioning, normative human body. In this moment I am consumed by these defective thoughts and I know I am using the improper psychological terms. But it is midnight and I know I need my Epsom salt bath or else I will not make it to tomorrow. My body has been too exhausted to change clothes, wash my face, bend over to run water and get in the tub. But I know if I do this I will get better.

It is hard to make the choice to get better. Mind puzzles our brains play on us keep us trapped inside our ailing bodies, keeping us from living our best lives. A choice as simple as getting in a bath tub turns into rocket science when my emotions have been taxed by relationships and how exactly one single person can change the world.

The truth is, no one person can change the world, not the entire world, alone. This is how I begin the process of forgiving myself for allowing my body to deteriorate to its current state, and also enable myself to arrive to the point of recognizing that it is not entirely my fault. I have a legitimate chronic illness. Despite anything I do, how many baths I take, how regular my yoga routine is, my supplement intake, my body has a mind of its own. It is 1 degree outside. Yes, there are ways I can help myself, sometimes. But this is preventative care. All the preventative care in the world cannot prevent a sleepless night and a pain flare. This is the way things are. Chronic illness does not have a magic get well quick formula, especially if you are treatment resistant with a complicated diagnosis like I do.

Pocket full of starlight: We are all different, our pain is all different, and yours is valid. If you are hurting tonight, it is not your fault, even if you did not do all the things today.

Pocket full of darkness: Sometimes we judge ourselves too harshly. Please don’t judge yourself for judgeing. You’ll only start a vicious concentric circle within a circle.

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?

Linguistics, Identities, Marginality, and Chronic Illness

Recently I had a class in which I looked stupid. This is normal for most people but as an introvert who hung out in the back of the class in class sizes of 300 people I usually didn’t have to talk, being put in the spotlight was never something I was used to. I am a graduate student now and my average class size is 10.

My class centered around interviewing the author of a social justice work book we read for the course, and I was very excited. I loved the book, and as someone who was a communicator for a church and trying to empower women and people in general in the chronically ill community, I had a lot of questions for her.

I am not articulate, so I wrote my questions down in advance. It had been a while since I finished reading the book and I wrote my questions that day so this was my likely faux pas. My questions to her centered around racial and gender identities and how they related to chronic illness and disabilities. I explained I was working on trying to make a positive difference with a somewhat girly chronic illness blog about personal identity, self advocacy, and empowerment. The author retorted that tutorials on how to look pretty for doctors appointments and individual activism was not how we overcome systematic injustice.

I have a few thoughts here. First, it is correct that individual activism is not how the chronically ill and disabled overcome systematic injustice. We must all share our stories honestly and openly with bravery. This is how we can seek each other out and join forces. However, I do not write tutorials on how to look pretty for doctors appointments. This blog does not exist to make a chronically ill or disabled woman conform to societies standards, it is to help her remember and have her feminine identity, if she identifies as feminine, be accessible within her new body. It exists to let those with real physical pain and limitations know they can still express themselves, just with some changes, and still accept themselves whether they have a buzz cut or want to learn how to maintain their hair that they love (not that society loves).

A diagnosis or disability is a traumatic life event that can make a person feel as if it is their only identity. I did not feel I had the time during class to explain that many chronically ill and disabled women wish to maintain who they feel they truly are after their diagnoses.

During the class I mentioned that it felt strange to me that I had to identify, or claim my identity as, a chronically ill person. I explained that I knew I had to use this language in order to find others like me to join forces and educate, and I believed it was the English language that forced me to use these labels. I also feel it is the medical system being controlled by pharmaceutical and insurance companies that pushes me into labeling talk and a lack of holistic care. I have noticed that other countries with other languages and cultures have different ways of seeing and talking about people of different abilities, genders, illnesses, and sexuality.

I know from a sociological standpoint an identity is not the personal identity from a more psychological standpoint I work from on this blog. Here I try to provide avenues to deal with the trauma of an illness. Even if society were different, the physical ramifications of illness and the emotions that come with them are things that no one outside of the group understands, even advocates. This is not something often talked about: trauma, self esteem, feeling worthy of accessible spaces and healthcare.

This large part is crucial to social change because in order to have change the community must be united. Within the chronically ill, mentally ill, and disabled communities, people are prejudiced against one another within their own groups and there is a lack of unity. People finding worth and confidence in themselves may help them find the same for their fellows. Their paths and struggles may hopefully produce the understanding needed to lift each other up.

This is just my theory. Feel free to disagree.

You Are Not a Problem

You are not a problem, and life is not about solving problems. Life is not a house full of broken appliances and you are the addled, busy head of household tasked with fixing them and juggling work and family. No one is a fixer upper. We all simply are.

It took me a long time to get to this mindset. I found myself in a doctors office at age 12 because I was being bullied for my hair. In an attempt to appease the bullies and even embrace my natural hair texture, I asked my parents if I could have hair gel and conditioner after purchasing a book on curly hair. They refused. Next I flat out demanded a $12 Conair straightener next time we went to the pharmacy. It did not work on my fuzz of a mane.

To most women reading this post, this seems like a very normal middle school experience. Makeovers and getting attacked with beauty products is part of what turns a human being into a woman. What made mine abnormal and traumatic was that my parents assumed I was lying about being bullied and took me to a psychiatrist.

I did not want to see a psychiatrist. Too many times I see kids on the internet saying they have such and such a mental health disorder and need medication. Sometimes I feel like telling them they are just teenagers and need to wait it out. Meds are serious and can ruin your body. I have been on 10 different medications at the same time for mental health since I was a teenager because I was deemed a complex case and treatment resistant. Now my liver is ruined because of all of these meds, that surprise, I did not need because I was not mentally ill.

Recently I saw a research neurologist and we came to the conclusion that my diagnosis as a child was incorrect and I was wrongfully overmedicated. My talk therapist concurs and has for years. I frequently talk with her about the trauma of not being listened to as something as normal as childhood bullying and being slapped with a stigmatic marker at a young age.

After my childhood diagnosis, I shut down. I became depressed and no longer took pleasure in anything I used to love. I lost the ability to talk to people and hold a conversation.

I have faced real life prejudice from my childhood diagnosis. Parents, before you drag your kid to some doctor looking to make some cash off of writing prescriptions, think about what actually might be happening in your child’s life. Be rational from a life standpoint. Don’t jump immediately to the DSM-5 and neurotransmitter information you read on Wikipedia.

Understand that I am not saying that mental illnesses are not real. But I am saying to exercise caution with childhood mental illness, especially medication.

If you feel your child needs help learning coping skills or has a behavior problem, try therapy first. It may take longer, but a pill will not teach your child how to manage and befriend their emotions. Teenagers believing they have a problem, therapy is a viable option too. Many teenagers do suffer from depression, self harm, and suicidal ideation. I want to encourage you to seek help from a certified therapist. But I want you to also know that your experience is normal in the sense that so many people live through it and come through the other side okay. I am not trying to diminish your very real problems, I merely want to let you know that things can get better, and you don’t have to other yourself.

You are not a problem. Parents, your child is not a problem to be fixed or a riddle to be solved to win the magic prize of life or simply leave you alone for five minutes. Find out what you like. Find out what your kid likes. Invest in one another.

Is this hard? Is it more time consuming? Yes. But it’s worth it down the road. It is an investment. You put the effort in and see the payoffs later, knowing that things may or may not work out. One thing I do know is that therapy and spending time with yourself and your child will not damage your child’s physical health down the line.

Life and people are investments in that rather than focusing on eliminating the negative, we should focus on, put time in to, and celebrate the things we like about ourselves and our circumstances. Instead of focusing on getting rid of the zit on your nose for your wedding day, think about how much fun you’ll have DIYing centerpieces or tasting wedding cakes. Research the centerpieces. Read and experiment about and with them.

That is not to say we never acknowledge the negative. It’s just simply there, like a person sitting next to you in a movie theater, while you’re watching the main feature of the movie. You are also sitting in the movie theater. We’re all part of the good and bad. It’s just that neither takes center stage. It just is.

There are times when we must bring awareness to the negative person in the movie theater, such as when they kick our seat or talk too loudly. Tell this negative part of your life how you feel and deal accordingly. This can take time, a long time, as long as you need. But remember to keep watching the movie on the screen, and don’t forget the person gently holding your hand next to you.

Time for a recap:

Pocket full of starlight: you are not what you think your negative traits, situations, circumstances, and diagnoses are.

Pocket full of darkness: you may not be your negativity, but there may be negative times in your life. Remember the movie theater of your life, and pop some popcorn. It’s not all good, but it’s not all bad either.

My Busband, My Husband

Photo credit: Tauni Joy photography

My fiancé came over to comfort me, as is his good fiancé custom. He truly is a blessing. When it comes to words I can only say that I am the luckiest.

We are two quiet, nerdy people, who enjoy art, animals, and nature. Together we sit and play with the dog, each knowing that the other is there, and even though there is not a fire burning in the fireplace we feel a warmth. This is love.

Love found me at the strangest of times. It found me when all the mom advice and rom coms in the world would tell me it shouldn’t. I was not at the top of my game. Not crushing it at work. I was entering into my health crisis and the fight of my life when I met my fiancé.

When I first met him at a vegan burger stand, I had been throwing up every night for two months and generally feeling a malaise. I hadn’t wanted to come to the date. He was an internet stranger from a dating app. I was nauseous with a fever and hadn’t slept for a few weeks from vomiting all night. In order to meet him we had to go to a halfway point that was 20 minutes away and I was driving a 25 year old car. Before I had bought a new car after graduating college, but that had been totaled 6 months prior.

Instead of cancelling, I changed into grey leggings, a knit coral V neck and my nice grey winter jacket. It was raining and I had just gotten my hair done earlier that day. I tossed on a beret and eased my way down my apartment stairs.

When I got there, I saw a nervous looking dude in thrifted khakis and a polo beneath a street light. He was curled up against a pillar and it looked like he was soaked from the rain. The light made him glow a strange jaundice yellow, and when I approached him there was fear in his eyes with a gentle sadness. Trepidation, a fear of a repeat date. Being that guy again.

I took it as extreme shyness and smiled my biggest smile. At that moment I decided I was going to make him feel comfortable, no matter how silly I looked. Now I am extremely shy, horrible at conversation, but I decided to find a common subject and talk on it. He revealed he went to church, so we talked about Christianity. I know, I know. Bad move. But he apparently liked it.

We went to an art supply store next. I pointed out some tools I used in art school, which brands I thought were best, and we had an intelligent conversation. There I noticed something remarkable. The yellow light was gone, and he was glowing white as a lion’s star, like the beacon of happiness had landed on him. He had a gentle essence about him, and I knew this meant he was a good, kind person. Call it stupidity or call it intuition. I will call it intuition, because he has been nothing but kind to me.

We decided to go shopping at the mall, but on our way to our cars, I began to feel as if I would vomit. I was almost afraid I would not be able to drive home and would need to call an Uber. Apologetically I turned to him and explained I was sick, and that I liked our date. I asked him to text me when he got home, and to be safe driving. He smiled, and said he would in a triumphant yet sad voice.

I drove home, feeling miserable, anxious about the wet roads and my nausea. When I got home, I noticed I had a notification. This man had actually texted me that he had arrived home.

What.

Me, pessimist that I am, figured he thought I was trying to get out of a bad date, which I wasn’t. He had some form of hope that I was not and believed I actually was ill. Our first trust fall was our first date. This is how it began, and this is how it is.

Now, a recap:

Pocket full of starlight: people who say you have to have your life together to find a good person or love are flat out wrong. You are deserving of love even if your ducks in a row are a bunch of angry geese.

Pocket full of darkness: expect to be judged for your angry geese.