My Fight Against Bias in Medicine: How to Fight the Medical System like a Businesswoman and Gain the Respect of Your Doctors in the United States

Yesterday I went to a neurologist at a research hospital about an hour and thirty minutes away from home.
They specialized in Multiple Sclerosis, which I knew I didn’t have, but I was desperate to see this neurologist.

Back in July 2019, I woke up screaming and writhing in pain. All I could do was lay in bed while my fiancé fed me by hand and covered me in ice packs and microwaved towels. Eventually I was taken to an urgent care where I was told I could have nerve damage and needed to see a neurologist and rheumatologist. Thankfully, they told me I was not a liar and I was clearly in pain, but they could not give me pain medication.

I waited five days to go to urgent care. This was because I had been unemployed for eight months due to not being able to receive proper medical care for my gastrointestinal problems which I had believed morphed into widespread pain. What really happened was I was now aware of the pain. I had always had very high pain tolerance. The truth was I had been in pain for years while I was vomiting daily, but once the vomiting stopped for a minute, I felt the ruins of my body cave in. So, this paragraph is to say, I was out of money and begging for it from my family, who was 12 hours away, did not believe I could be that sick at age 26, and after five days of phone calls and my fiancé also pleading with my parents, I was allotted $100 dollars to go to an urgent care. I spent all of it on one appointment.

Let’s talk about the years I spent not receiving proper gastrointestinal care. At the time, I was a pretty, slender, blonde young woman with a fake tan who dressed to the nines everywhere she went, including the doctor. My health was not as bad as it was now, but things were still bad. I always went to older male doctors. I am not saying all  older male doctors are bad doctors for women, as some female doctors can be prejudiced against their female patients. In fact, most doctors are biased against women, especially women of color.

John Oliver does a great, sad, and humorous job of explaining bias in medicine in his video. It’s sad because it’s true, and it’s funny because of the delivery.

In the video, John Oliver suggests bringing a white man along with you if you need help. This is actually true, as I have brought my fiancé with me to some doctors appointment. However, he is a sweet little engineer, and works very hard around the clock. This means I don’t often get my white man to speak up for me. I’ve included a few tips on how to speak up for yourself.

Patient Advocacy: How to Talk to Your Doctor

  1. Purchase a cheap tablet off of Amazon

No, I am not endorsed by Amazon to advertise for them. However as someone with a chronic illness I find their evil empire useful, as I can use Alexa (something I don’t have) or my smartphone (something I’m on all the time) to order anything I need. Ease and convenience is key for a spoonie when we need to hunker down and get some stuff done. Please note, you do not need an iPad. I bought my Amazon Fire tablet for $40, and it’s a gem.

  • Use your cheap tablet to create PowerPoints for each and every doctors appointment.

For each appointment, put the name of the doctor, their specialty, and date. You can copy PowerPoints to create others. Include complaints, symptoms, updates from all of your other doctors whether you believe they are related to this doctor or not, questions, a medication and supplement list, and thank-yous (if you have any). Important: create a slide full of things you are doing to help yourself mentally, physically, and emotionally, such as meditation, exercise, hobbies, and social activities.

Find a funny pain scale graphic to include in the PowerPoint to refer to. Doctors like patients who have a sense of humor.

Create these for every specialist you have, from your talk therapist, psychiatrists, rheumatologist, neurologist, dermatologist, family doctor, gastroenterologist, and OBGYN. Anybody. It will help guide the conversation, fight brain fog, and ultimately make you appear intelligent, organized, and worthy of respect.

  • Once you have acquired the tablet and created the PowerPoint, go the appointment and each time you are there hand the tablet to the doctor.

If you say “I have made a PowerPoint I want you to look at,” you doctor may be confused. Instead, say, “Please look at my tablet. I have prepared a PowerPoint with medical information for you to look at to help our communication and for you to better understand my case.”

Tell the doctor it is okay for them to hold the tablet, or you can set it on a flat surface to scroll through the PowerPoint with them. Tell them to ask you questions as they read.

2. Obtain and create a medical records binder. Take it to each appointment.

This is the hardest part. Some doctors will charge you through the nose to get your own information. The best thing to do is at the end of every appointment, to ask for a write-up of each appointment. Contact the labs where you get your work done and get copies of your lab work. Put it in the binder. Get hard copies of your radiology. To do this go directly to the imaging centers. Gathering your records will take the longest amount of time and many phone calls, but it is worth it. You never know when a doctor will doubt you on the spot about a condition you have in the room and you will need your binder of truth, your sword of justice, to whack some sense into them.

Please note that not all doctors charge money for records.

 How My Tablet and Medical PowerPoints Saved Me

On the Amazon Fire Tablet, Amazon has a Doc app native to the tablet, where I make my PowerPoints. Note that I do not make them fancy. Please do not make your medical PowerPoints fancy, it takes too much time.

I had a copy of a rheumatologist PowerPoint that I was editing. It had been months and I still could not find a neurologist on my insurance. Everywhere I called said they would not take my case. A friend suggested I try the medical school. Perhaps I wasn’t clear on the phone, but each receptionist I talked to there gave me a different answer. I decided to email the Dean of Neurology one of my Medical PowerPoints hand tailored to communicate with the medical school, including the slides I outlined above.

Not expecting a response, I worked on school and general life things. Surprisingly I received an email from a physician’s assistant at the school, saying there was a neurologist interested in my case who had seen the PowerPoint. I just needed to fax over my medical records.

Because I had my exhaustive binder, I merely faxed over copies of my medical records binder. I had an appointment in a week.

Other Tips for Communicating With Your Doctor

If You Do Anything But Be Sick, Mention It!

When you have a chronic illness, it’s important to build positive rapport with your doctor. This is because you will be seeing each other a lot! Do you have a dog? Do you write? Do you blog? If you do blog, don’t mention the name. Do you collect cat pictures or memes? Did you have a spa day? Are you in school? Did you get a good grade on something? Anything positive that you do, mention it. Doctors are surrounded by negativity. Please understand that I am not saying to not tell your doctor what is wrong with you. That’s the reason you’re there. Just add some glitter to the appointment. Bring some tinsel but don’t get your tinsel in a tangle!

Do Not Look Pretty for Doctors Appointments

There’s a fine line here. Wear clean, unwrinkled clothes if you can, but do not do your makeup. Make your hair reasonable if you can. Do not wear full makeup. I made the mistake of looking my full fancy self when I first started my journey and the doctors could not see the beginnings of my illness through all the contouring and bronzer.

Of course, if you’re coming from work, you may not be able to help this. That’s okay.

I hope this  helps some of you.

Now, a recap:

Pocket full of starlight: thanks to technology, there are some ways to fight the system.

Pocket full of darkness: why should anyone have to fight so hard to be seen and heard?

Style for Spoonies

Style for Spoonies

Please note that this post is intended for personal empowerment, not to push anyone into a mold. Style does not equal fashion, as will be discussed later in this post.

My goal is to let everyone know there are parts of themselves they can still have fun with, even with chronic illness. I hope I do not miss the mark.

I am a certified Girly Girl ™ and Chronic Illness Warrior Queen. It is my duty as a feminine chronic illness warrior to have some fun and write about something that tickles my fancy, which is how to develop a personal style post-diagnosis.

What is style, and what does it have to do with chronic illness?

Paste Magazine outlines style as a sort of essence or tone  to a person or thing, like food or writing. When a person becomes chronically ill, it is easy to lose their essence. So much of how daily life is lived must be changed. Everything from food, speech, walking to clothing choices must differ due to health conditions. But the essence of who a chronic illness warrior is, who you may be, dear reader – must not change. It must adapt.

Why should people with chronic illnesses care about style?

Firstly, a person with a chronic illness does not have to care about or prioritize style! I certainly don’t 5 out of 7 days out of most weeks. 5 days is a good week. However, when I do have the spoons to waste on style, I do feel better, and I am all about feeling better. I would like to make other chronic illness warriors feel better too. If you, as a person with a chronic illness, believe you would benefit from a silly cathartic article written about style for spoonies, please read on.

Types of Spoonie Style

The Lounger

If you are a certified pajama queen and live strictly for comfort, go you! You are putting your health first. This is good! No need to feel shame here, spoonie fashionista.

The Yoga Pants

There’s a lot of fun you can have with yoga pants. Yoga pants are basically the new blue jean. Once again, you’re practically street style honey.

The Leggings and Flowy Shirts

This is a definite style many musicians and bohemian ladies rock. Nothing to be ashamed of here, my chronic illness warrior princesses.

The Big Dresses

I don’t know if it’s just me, but hey soul sister if you’re reading this! Do you suffer from rib cage pain? Is your stomach and lower body in too much pain for yoga pants or leggings? Welcome to the Dress Mess tribe!

Everybody Else

Of course, this list is not exhaustive. There is no one way to describe the many ways women with chronic illness dress, and it’s usually function over form. This post aims to put a little form to the function, acknowledging form is less important than function, but can be used at times to add some style, or fun, AKA essence.

The Fab Fibromyalgia: My Chronic Illness Makeover

Exhibit A: Myself, the Spoonie Bard.

I had always been into rockabilly and retro fashion, a bit of a throwback if you will. My street style had always been a bit dark, glittery and rock and roll. Lipstick was always my cosmetic of choice as I had eye allergies.

Before my illness, I wore ripped cutoff booty shorts, complicated lace and tulle black structured blouses tight under the bust, combat boots, dark wash skinny jeans, a full face of makeup, thrifted motorcycle jackets, clear contacts, and a short pixie haircut I blow dried with a hair dryer and straightened with a flat iron every day. Each morning I showered, shaved, and applied fake tanning lotion. My hair was always colored.

At the core of my look was an essence, or style: edgy that said “I’m here. You can see me and judge me immediately so my anxious mind won’t go on a worry trail imagining all the mean things you’re saying in your head. I know you’re noticing the purple hair, the fake bake, the eyeliner, and the combat boots.”

Now, let’s look at me after  chronic illness.

After chronic illness: pixie haircut styled naturally curly or straight with a hot air brush, natural brunette hair color, tortoiseshell vintage cats eye glasses, loose fitting T-Shirt dresses in darker colors from Old Navy, vest cardigans, tall chestnut riding boots, ASICS sneakers, grandpa sweaters, an investment black pleather Guess jacket with gold details, knit polka dot dresses and shirts, flowy knee length skirts, and a bold lipstick color. I am currently pale as a ghost and hairy as a horse.

The current essence screams 1950s librarian to me. A librarian that one day, in January, hopes to have purple hair again. Still, it’s different – wearing my hair curly makes me look like I have hair from the 1920s and barely an inch long. The call of “look at me so I know you are first” still stands. I still have an essence, even if I can’t wear pants anymore. Despite chronic illness, I still have a style.

How to Develop a Style After Diagnosis

  1. Decide what you want to say when you enter a room

Is it “You saw me first and I know what you thought?” Are you daring and bold in this manner?

If so, experiment with a bold lip color or eye shadow. Which one of these you choose depends on if you have eye problems like I do (I suffer from ocular migraines and every allergen imaginable).

If you want to tell someone you are glamorous, invest or thrift for good accessories. A luxury handbag, jacket, jewelry piece or scarf can go a long way to dressing up yoga pants and a T-shirt.

2. How trendy are you?

And, generally speaking from experience… Trendy clothes are far less comfortable.

This determines what era you’ll set yourself in, and how up-to-date on fashion trends you’ll be. It also helps determine a budget, because if you’re trendy, you have to buy clothes more often!

Going for a more classic, timeless style means buying less clothes over time, unless you suffer from body fluctuations like me. However, generally knowing what you like makes it easier to shop online or at a thrift store once you know whether you’re more dramatic or low key.

Trendy vs. classic helps determine what type of fabrics you buy. I like to thrift for Old Navy knit dresses. These are rayon cotton or jersey knit dresses with a polyester blend. Generally I find these fabrics are gentler on my skin than the tulle or lace I used to wear. I aim for different patterns and polka dots in different colors. However I am a polka dot and not a stripe, and you may be a stripe; do as you wish girl.

Always choose fabric over looks. That sequin shirt is going to really rub you sore. But I guarantee you a jersey knit top with the right pattern or embellishments that do not stick up will treat you right.

3. What are your limitations, and can you have fun with them?

Do you use a mobility aid? Do you need to wear glasses? To wear pants or not to wear pants? Can you only wear pants?

If you use a mobility aid such as a cane, consider something elegant or antique if you’re female. To find one of these, I suggest eBay. I recommend The Disabled Diva’s Six Stylish Canes to Keep You On Your Feet for more direct references. If you’re partial to Ireland or Irish folklore, I once used a shillelagh as a mobility aid. They are available on Amazon.

As for glasses being trendy these days, there are so many options to appear on point. I prefer cat eye because they make me look more sophisticated and slim my face, and I cannot wear contact lenses. Now I will refer you to Zenni for an affordable range of glasses frames to help you find the right pair. On Zenni you can upload a photo of yourself and do a virtual try-on.

Assess whether you can wear pants. Pants are a nope, even leggings and yoga pants in my case. I can wear yoga pants around the house, but I can’t even go out my front door to get the mail. However, if you pants the pants, you pants the pants, and this is well and good. Pants the pants.

I am not anti-yoga pants or leggings by any means, however, I cannot personally wear them. I do know that folx that can wear jeans should check out Maurices. They are the only jeans I can wear when the temperatures drop waaay down low. Maurices comes in a wide range of sizes, are incredibly soft, and do not press on my hips to aggravate endometriosis pain.

Do you need to wear sunglasses? A spoonie guy or gal can really have fun with this. Designer sunglasses or sunglasses that look like a million bucks for cheap off of Zenni to create an ensemble can really help create a wardrobe in and of itself.

4. What is your hair texture, and how can you live with it naturally?

I recommend going to a highly rated barber shop in your area for help in regards to this matter if you need a haircut. Curly and wavy hair can look good short in the hands of a skilled barber even if you are a female spoonie. It’s also easier to take care of. Be sure to pay attention to how they style it at the barbershop and ask questions, such as “What are drug store dupes for this product?” if and when they try to sell you a salon product. Be persistent if they try to tell you there aren’t any. Believe me, there are.

In general I am more in favor of short hair for female chronic illness warriors because it is less likely to become matted in the unfortunate event of poor hygiene. If you find yourself going a few days without a shower and aren’t getting second or third day hair, beanies and other cute hats are your friend.

For tips on how to care for your hair with a chronic illness, check out my post, The Spoonie Girl’s Guide to Personal Care. These are good tips for men and non-gender conforming as well.

Conclusion

It is possible to cultivate a personal style post diagnosis if a spoonie so wishes, but it should not be expected nor should it be prioritized. I wrote this for fun as a silly girl post, though folx not identifying as girls are welcome to use this as well.

Now, a recap:

Pocket full of starlight: You can have fun with your spoons if you so wish.

Pocket full of darkness: Fun costs spoons.

Use your spoons wisely!

Grief

Grief is such a nebulous term.

Some people ascribe it to everything in their life – grief over losing their job, grief over childhood bullying, grief over a chronic illness, and grief over loss of an identity. It is often used to write off anger. While these are all valid uses of the term grief, none of these are what this post is about.

As a minister’s daughter, grief is an old companion of mine. My dad serves a small congregation and naturally, when someone passed, my family was all hands on deck to try to serve the family of the person. Sometimes things blew up in our faces, and we were met with anger. To this day my father is haunted by the times he could not fully serve those around him, and works diligently for each next time someone will, inevitably, leave us.

This past week there was a death in the congregation. I am not taking it well, my sister is not taking it well, my parents are not taking it well at all. It is especially hard for me this time, because I cannot attend and serve at the funeral. Yes, today I baked pumpkin chocolate chip cookies to be delivered to the church. However I don’t have a car, and I managed to get an appointment with a research neurologist downtown, over an hour and a half away from my residence, a month ago. My  mother does not want me to miss the appointment. Today we cooked for the grieving family so mom could drive me downtown, and we will both miss saying our goodbyes and not help my father.

Oftentimes when I was a child, I would wake up at night to a black room. Maybe this does not sound odd to most of my readers, but I slept with a nightlight on. I could not see anything but the silver outline of a person. As an adult whenever I was told a person passed and their funeral was to be held at my father’s church, I would see such an image while walking to the bathroom around midnight. I like to call this my own way of grieving.

Sometimes I wonder if holidays like Día de Los Muertos have it right – introduce and embrace death young, so you know your dearly departed are not truly departed. Remove the shroud and mystery of death.

During this time I was asked to help sort pictures. As I did so, I was astounded by what a life this woman led, and how beautiful she was in all of the pictures. How even though time had passed, I could still pick her out in a photograph from years ago, and others in her family that I knew.

Anyways, dear Sister in Christ, you know who you are, and I miss you dearly. To your family, I can’t say any words. But please know the cookies I made were made with love.

The Spoonie Girl’s Guide to Personal Care

Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

This is a basic guide of products I use as a woman with chronic illness to help keep myself looking 2% decent, instead of 0% decent. Some of these products have saved my spoonie life. In this blog I talk much about body image and self-esteem, so I decided to write a post about how to cultivate that with easy things I do on good days. These are the bare minimum steps I do on good days when my chronic illness lets me. I will include links to Amazon, because what chronic illness warrior doesn’t love Amazon?

First, please acknowledge I have oily skin and short, curly hair cut into a pixie. I typically wear the pixie natural so I will include ways to wear your hair natural and ways to straighten it (the easy way!).

1.Jinri Hot Air Brush

Jinri 1inch Hot Air Brush

A hot air brush is basically an electric hairbrush that acts as a hair dryer, straightener, and brush. I use the Jinri because it is 1 inch around the barrel which is good for short hair. All you need to do is get out of the shower, brush your hair with this, and your hair will be silky smooth like a salon blowout. If you have longer hair, I recommend the 3 inch Revlon Hot Air Brush

The Jinri is about $35, while the Revlon is around $55. Those of you immersed in the beauty word may be familiar with Dyson and Drybar, but those cost hundreds of dollars. Spoonies generally are short on cash with all of our medical expenses, so I want to make this list pocket-friendly.

2. Cantu Shea Butter for Natural Hair Double Combo Shampoo and Conditioner

Cantu Shampoo and Conditioner

This is only for ladies with curly crazies! As a curly haired vixen, this is what I use on my hair every day. It’s great whether I want to use my Hot Air Brush or wear it natural, which I will give a tutorial below. If you want to find this in person, the Cantu Shampoo and Conditioner can be found at Walgreens and CVS.

3.    Cantu Shea Butter for Natural Hair Leave In Conditioning Repair Cream, 12 Ounce

Cantu Leave-In

I always put the Cantu Shea Butter Leave-In Conditioner whether I use my Hot Air Brush or not. Because I have a pixie, I use a dime’s worth on one finger and run it through my hair. This stuff is powerful! When I want to wear it natural and air-dry, I use the same amount, and run it through my hair. Then I brush it while wet. Next, I take sections of my hair and twirl it up into twisted sections with my fingers to hang loose in defined locks. When I do this, it looks like dread locks when it is still wet. Then I let it air dry, and I receive perfect ringlets. Just make sure you don’t use too much of this – if you have chin length hair, it’s okay to use two dimes on two fingers, shoulder length, a penny. Beyond that never use a glob because I haven’t had shoulder length hair since 2005.

Another tip is that if you don’t want to twist your hair and need to go to bed, is to use the prescribed amount, brush your hair while wet and wear your hair in braids while sleeping.

4.    Neutrogena Oil-Free Acne Stress Control Triple-Action Toner, 8 Fl. Oz

Neutrogena Oil-Free Stress Control Toner

When I get out of the shower, I use this Neutrogena toner on a cotton pad on a good day. A very good day. It helps keep the acne under control. Now I’m no beauty superstar. I use this maybe once a day, twice a week, but it helps.

5. Pan Oxyl Pack of 5

Pan Oxyl Face Wash

Pan Oxyl was recommended to me as a teenager and it’s the only thing that does anything for my acne and body acne. This is for my oily skinned chronic illness warriors. Note the price tag on this – but it’s a pack of 5 Pan Oxyls, and they are really hard to find in real life. The only place I’ve been able to find them is some CVS. I used to apply this with a sponge, but I recommend simply using your hands. Sponges can hide bacteria.

6.    Neutrogena Oil Free Acne Facial Moisturizer with Salicylic Acid Acne Treatment Medicine, Pink Grapefruit Acne,4 fl. Oz

Neutrogena Pink Grapefruit Moisturizer is the only moisturizer that works for my spoonie oily skin. Yes, oily skin needs a moisturizer. Now I won’t claim to be high functioning enough that I do all of this every day – this is just for good days. Below I will show you how to accomplish these self-care tips with some chronic illness hacks.

7. Sit Down, If You Can, To Get This Done

Without purchasing anything, if your toilet is near a shower or a sink, sit with the lid of your toilet closed while you apply toner, moisturizer, or shea butter.

Vanity Mirror to put on a flat surface when using hair tools outside of a bathroom

If there are outlets near a chair or your bed, use your hot air brush there and place a small standup mirror where you can see it. Who says you have to use hair styling products in the bathroom? It’s dangerous and frankly, I never did before I became chronically ill.

If all else fails, and you need help brushing your teeth, consider a Sonicare and a backed medical stool to use in your bathroom if it’s large enough. The closed toilet seat hack still applies if you need help brushing your teeth (such as not being able to stand for any period of time) and cannot afford the medical stool or lack space.

Again, let me say that I too have days when it’s hard for me to get out of bed, brush my teeth, or shower. I hope I don’t sound preachy, these are just ideas for good days – days that are almost in the normal range, but us chronically ill girls don’t want to push it too hard and send us into a pain flare.

If you have any more tips, please comment below.

And now, a recap:

Pocket full of starlight: You are not your body, and you are not who you look like.

Pocket full of darkness: Looking good can take too many spoons.

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

Working through the pain

Work is therapy for me. Or rather, graduate school is. I wake up around 4am to 5am and throw myself into a school project. School projects are generally more relaxing than wedding planning crap because those are stressful as hell and I never wanted the big formal wedding I’m going to have. The man, yes. The hundreds of people and logistics? No. I am bad at logistics.

When life gives you lemons, it’s okay to make a website about lemons.

However I love creating. Whether it’s a piece of writing, a new website I’m building, or some new graphics (from looking at this website I’m sure you all know I’m not good at that) but I like taking a stab at it and making something from nothing.

In my foundations class in graduate school the point is to teach ourselves a technology. In 2011 I built my parents’ church their first website. As a kid I learned creative technology for fun. I know, nerd alert! But I fell into a deep depression and lost all of my knowledge of photoshop, HTML, and CSS. So I’m taking it all back. It’s been a fun, rewarding process.

The biggest part of work therapy is that it gives me a sense of accomplishment. I’ve been unemployed for over a year now. It left me with a great sense of unaccomplishment and lack of pride. However getting back into virtual, computer work – I know for sure I can work from home as long as I’ve got an internet connection. This gives me hope.

So, a recap:

Pocket full of starlight: when life gives you lemons, make a website about lemonade.

Pocket full of darkness: when life gives you lemons, it’s okay to make a website about lemons too.

Continue reading “Working through the pain”

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.

Fibromyalgia pain and loving yourself

Your fibromyalgia body still loves you. Please love it back.

After pushing myself hard last week, I found myself in a fibromyalgia pain flare. Thankfully it lasted about 6 hours instead of a few days, at least that I can tell. Fibromyalgia is pesky in that it’s nearly impossible to tell how it will jump ya.

My fiancé and I were checking on our new house, which is undergoing renovations. We hired a contractor from my hometown to replace the carpet with tile floors. No way were we renovating ourselves with my fibromyalgia! By mistake one of the workers busted out the fireplace. Fiancé and I took this as a great opportunity to replace the builder grade tile that was there with mock marble. We will have a very classy house by the time renovations are done.

When we arrived at our house, we could tell that the garage door was broken, and the vent above the garage that leads to the attic was knocked out. My fibromyalgia pain level was manageable, but I was freaked out – had someone broken in? Our packing boxes were inside.

After going inside and finding the packaging intact, my fiancé climbed into the attic and nearly fell through the ceiling into the garage. I about died. My dad was about to go up there after him. My friend had come over with us to see the house expecting the renovations to be done, so we took her car to go to the nearest grocery store to buy duct tape so my fiancé could duct tape the vent back to the attic. I quickly developed fibro fog, so it took a while to find the duct tape even though the grocery store was less than 5 minutes from our house and about a block away.

Once we got back with the tape, I sunk into the couch with my friend. I hadn’t noticed it, but my fibromyalgia pain had crept up during the car ride over to the house. Currently my fiancé and I live in separate cities – when my fibromyalgia pain became severe, I left my apartment in the city and stayed with my parents. My father is a minister and very old school. Despite my fiancé and I being engaged with my father’s approval, he insisted that we not live together. My fiancé, the sweetheart (sometime too much) that he is, respected my father’s wishes as he wanted no bad blood. He is, after all, paying for the wedding.

Which brings me to another point. The wedding.

My fiancé helped me off the couch after he and my dad worked on the house for a few hours. On the car ride home, my fibromyalgia pain was so severe that I had to lean the car seat all the way back. The town I’m living in is 45 minutes from my new house. It’s a doozy with fibromyalgia pain.

During the last year, my fibromyalgia has taken from me something I never thought I had: my beauty.

I had once been a model for a photography class and a size 0 for all of my life until this past year, due to fibromyalgia and fibromyalgia medications. As I am a lady I will not disclose my size. Once I searched for plus size wedding dresses on Pinterest, only to find trolls commenting on beautiful women saying they were stuffed sausages, or too well fed, or that they ate too much. As someone who went from a size 0 to a size whatever, I can say it was not because I stuffed myself because I felt like it. My precious metabolism disappeared and the fibromyalgia drugs packed the weight on. And can all of us with fibromyalgia say pain eating is real?

But even when I was the social norm for beautiful, I never felt beautiful. I feel wretched looking back on how I didn’t love myself as a model, didn’t love myself as an Audrey Hepburn lookalike…

My biggest fear is that I will look at my wedding photos and cringe at how I looked. I am afraid of looking the worst I ever looked on the most important day of my life because of fibromyalgia.

But I know I have to love this body, this painful, plus size, chronically ill fibromyalgia body. It has carried me through so much. Even though I wasn’t aware of this before, it has always been there for me. Maybe I don’t register this, but my body doesn’t want to be sick, it wants to be healthy too, and it’s in this battle with me. She deserves my love and respect the way I deserve love and respect, whether I have fibromyalgia, a pain flare, a fit body, or not. Because we are not our bodies, and that includes me.

So, a recap:

Pocket full of starlight: Your body still loves you, even if you hurt. It doesn’t want to hurt you, it hurts too.

Pocket full of darkness: You and your body both hurt!

Looking Back on Fibromyalgia: One Day at a Time

Believe in the sparkles and look at this nice graphic I made of leaves.

With the winter winds coming into my neighborhood, I was struck by how unpredictable Fibromyalgia can be.

I was diagnosed less than five months ago. In these five months, I’ve discovered that it takes about 5 hours for me to wake up every morning. This is after my daily yoga routine, which I have admittedly neglected. My goal for yoga is 45 minutes, and I usually only do 15. Then I throw myself into a combination of wedding planning, school work, and website management.

The more I work, the better I feel. But around 8pm, I am a raving, ranting, screaming hot mess. I think of myself as a molten lava monster – my pain is in the 6-8 range, and my irritability is at an 11. But I have wonderful Epsom salts, and a 30 minute soak in the tub usually manages things.

Throughout the day, I do have “jumping pains” and “lava snakes.” These unpleasant sensations teleport around my body like an extremely unfair alien in a bad science fiction movie, but as long as my mind and emotions are engaged in an activity, I can cope. At least that is today, and yesterday, and the day before that.

Earlier in my fibromyalgia journey, I was a ten-thousand foot tall volcano every day, all day. My pain was at a 72 but my anger was more like a 7. I’ve often wondered why the irritability still lingers despite my body holding up with the cold weather. Because I’ve generally suffered from Seasonal Affective Disorder, I assumed winter would kill me with fibromyalgia. But the summer months wrecked me fiendishly. I haven’t been bedridden in a month, back when the temperatures were still in the 90s.

Someone explained to me about living with chronic pain, is even when you find relief and things get better, it’s like living with a horrible person. You know anytime they could come home and ruin things, so you’re constantly on edge.

As I’ve suffered through this grieving process of dealing with chronic pain, it’s nice to know that for once, some of my emotions are justified. Validation is a good word to use here. I find validation in other people with chronic pain, and in my family who deal with the sick, grieving, and disabled.

Let’s recap:

Pocket full of starlight: I’m not alone, and neither are you, whether you’re in pain or sparkles.

Pocket full of darkness: sparkles are generally not biodegradable and they can stab you in the eye unpredictably if you don’t have the cosmetic grade kind, like fibromyalgia.

You Spoonie Bard!

There is an old Final Fantasy meme that comes from a translation error. In every Final Fantasy game, a character uses the insult, “You spoony bard!” The internet took off running with it, and so did my fiance when I was first diagnosed with Fibromyalgia in August 2019.

I was suffering for months and losing hope. Once, in one of our stay-in dates, we talked about what we would do if we could design a videogame. I suggested we create one about a girl whose power was music. In the beginning of the game, she loses her powers, but not her voice. The goal of the game is for her to take down an evil ogre and receive her powers back.

When I was diagnosed, my fiance suggested I start a blog called “The Spoonie Bard” to cheer myself up. When I asked why, he showed me the Final Fantasy meme on Know Your Meme.

Christine Miserandino’s famous “Spoon Theory” essay, in which Christine, diagnosed with Lupus, teaches her friend about life with a chronic illness using spoons at a restaurant. The friend was given twelve spoons, and for each action a spoon is taken away. It’s an excellent illustration for those recently diagnosed who wish to explain their new predicaments to their loved ones.

The Spoon Theory is where the term “spoonie” comes from. Spoonie refers to a person with a chronic illness. So my fiance, upon learning about the Spoon Theory from Jenny Lawson’s funny books, applied the meme to my situation – the falling star he had put in his pocket was applied to my starless night.

So, welcome to my blog, where I, the Spoonie Bard, offer you my pocket full of starlight, and all of its darkness too. Because let’s face it, chronic illness is hard.