Wedding Planning For Spoonies: Now With Actual Spoons! 🥄

It’s time for book talk! I’m back to almost 20,000 words after getting the book down to 16,000. That’s quite a feat for a week. And now I have this adorable cover!

It probably is a bit cisgender – but I wanted the rainbow background for a reason. Please give me some #feedback for fun!

For those who don’t know, this is a wedding planning book for the chronically ill and disabled that covers LGBTQ+ as well as cisgender weddings.

Wedding Planning for Spoonies: Inspiration & tips for the chronically ill and disabled

My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.

I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.

I do think this book could be a game changer if I work hard enough on it.

I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.

If you’re interested in helping, email me at spoonielifestyle@gmail.com.

Keep Fishin’

Usually, no matter how bad my pain flare is, I wake up at 5am at the latest, do Tai Chi, have a blog post out by 9:30 edited a few times with a graphic, have eaten breakfast and downed 3 cups of coffee by 10am.

Presently I’ve been in a stress-induced pain flare. The pain has been worse than when I’ve first been diagnosed with fibromyalgia, when I would scream at night, sob while I read the bible, all because of the physical pain I was in. It was a nightmarish experience. Once I started the meds and began to get better, I thought that would never happen again.

The past 3 weeks I’ve had horrible insomnia, which has been a plague for me on and off for about two years. Last night I slept 12 hours.

Normally, this would not be a problem. But I’ve been applying for virtual volunteer positions, and I had an interview at 10am, and woke up at 10:55am.

Well, I may have missed an opportunity to make the world a better place, but my body feels much better and I may actually be able to do Tai Chi today.

What I mean to say is, for anyone else going through this, don’t give up, or as my favorite band Weezer would say, Keep Fishin’:

You’ll never be
A better kind
If you don’t leave
The world behind

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

You’ll never do
about:blankThe things you want
If you don’t move
And get a job

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

Waste my days (Waste my days)
It drowns aways (Drowns aways)
It’s just the thought of you
In love with someone else
It breaks my heart to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

You’ll never be
A better kind
You’ll never be
A better kind

Waste my days (Ohhh)

Keep fishin’ y’all.

(Yes I know these are super lazy posts but I’m trying to still crank something positive out every day. Wait, that wasn’t a positive statement. It’s okay. I’m doing the best I can, me.)

2 Traditionally Bridal Things I Didn’t Care About As A Chronically Ill Bride

Bride with sequin shoes. sign overlay 2 Traditionally Bridal Things I didn't care about as a chronically ill bride spoonielifestyle.com

When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.

To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.

I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.

1. Losing weight

At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.

After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!

Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.

In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.

2. Having perfect skin

I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.

Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.

During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.

Are you a fellow spoonie bride?

Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.

I Got Cinderella’d and It’s Not All Great

My husband and I come from two different worlds. He comes from a different stratosphere than I do. I don’t get along with his family, even before I ran away twice. They mistreated me while we were just dating, and I never really understood why until I looked at class differences and ableism.

I can understand not liking me after what happened in January, but the hate I received before my wedding day didn’t make much sense to me. I was threatened with a letter from a church to stay away from my husband because I was “depressed.” Not to mention all the snide remarks about me being a bed warmer and my husband needing a vasectomy.

Unfortunately most of this was communicated to me through my husband, so it was all secondhand information. But it took me to the point where they have to ask permission to come into my house (which I usually do allow because I was raised to be a hospitable southerner) and I will never, ever voluntarily go into their homes.

In rich families, children are investments. Not in a way that children are investments for the future, but in that they can make money for the family. Who they choose to marry has a direct impact on how much cash the child makes for the family and how much of a financial burden they will be.

I was developing fibromyalgia and lupus symptoms while dating my husband. Most likely I was seen as a money pit. My husband told me his family was afraid I would drag him down.

Let me stop right here with this gosh darn ableism. An able bodied person can drag any slooshin person down. Anybody can drag anybody down. I have some friends I cut out of my life who were nightmares. And dragging someone down is cyclical. I most likely will reintroduce those negative friends again once I feel I can. We’ll start out positive and go back down the negative gravy train eventually, then it’ll get too much. But a marriage is commitment. Part of commitment is saying, “I will love you even when I think you suck.”

People fall down and then they come back up again like a dolphin out of water, complete with sex for pleasure and all.

Rich people tend to hide these basic life lessons from their kids by controlling them with gifts that come with invisible strings only made visible when the kid steps out of line. Basically, rich people scare me.

5 Tips For Reaching a Diagnosis

Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?

That’s because the journey to a diagnosis is a long, hard one. If you’re reading this I can guess you’ve been on WebMD self-diagnosing yourself with everything from leprosy to cancer. You may have even come across fibromyalgia by this point, and you might want  to ask your doctor to test you for that. Don’t do that. Fibromyalgia is a diagnosis of exclusion, to be explored in later blog posts, as this is a somewhat controversial statement depending on where you live. It’s basically what you end up with after about a year of tests for everything but fibromyalgia. But there is a way to streamline your diagnosis journey.

For example, I have a severe form of fibromyalgia. It developed over a series of 3 years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde pretty twentysomething with a mental health record’s complaints as valid back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.

  1. Know what pain is.

I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my booboos. Even when I developed endometriosis at age 14 I thought I was just sick to my stomach, light headed, and bleeding like crazy. I could describe what was going on poetically: “Something is clamping on me,” “this burns,” but I never thought of it as pain, because I was taught to ignore, belittle, and never admit pain from a young age. If you can describe what you feel in metaphors, think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” Answer “yes” when the doctor asks you if you are in pain if you can pass the metaphor, movie, or hurt test.

2. Keep a log of symptoms.

Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.

3. Exercise

Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.

4. Food

Log what you eat, when you eat, in your symptom journal. Your symptom journal should be written chronologically.

5. Clothing

When you write your date in your journal, record what clothes you are wearing and when. Make sure you write down the fabric type of the clothing. This can be found on the tags inside your clothes. This can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers 2, 3, and 4 are good things to do post-diagnosis as well.

This 5 step list is great for any diagnosis journey, no matter what the diagnosis may be. Remember to be patient and kind to yourself, because most diagnoses take quite some time. It’s okay, many people have been there before, and get off of WebMD!

3 Mental and Spiritual Ways to Cope With a Pain Flare

When you’re stuck in a pain flare, it’s hard to envision the light at the end of the tunnel. Here are some small (albeit unorthodox) ways you can keep your head above the pain for perhaps a little while.

I’m keeping this list short due to the nature of pain flares. Some of you might be frustrated with all the multitudes of things you think you have to try to get out of a pain flare. I will tell you that some of these might help for only some of you, but these are generally good practices. There are no magic wands to make pain flares go away, but there are ways to make us feel more comfortable.

Why I’m Using Spiritual and Psychological Techniques

Generally, pain flares affect your mood, and your mood affects your pain flare. It’s like a dog chasing its tail that catches it and devours itself. Without cultivating positivity, escaping your pain flare is postponed.

Using Your Mind and Spirit to Escape a Pain Flare

  1. Write down (or tell Siri) 3 things your grateful for.

Each day you’re in a pain flare, take out your journal, your phone’s notepad app, a video or voice recording app, or if you can’t move, tell Alexa, Siri, or Google Assistant 3 things you’re grateful for. Pain flares are tiring, and 3 is all you need right now. No need for pages of gratitude to cultivate it.

2. Read your favorite book with a character you relate to the most. Let yourself cry.

If you relate the most to Jane Eyre and her suffering, read it. Relate to how tragic her life is. Throw a pity party and sob. You need the emotional release, but above all else, you need to relate to someone on an intimate, internal, mental level. Your friends may not understand, but you can make a fictional character understand.

3. Connect to a higher power.

This can be your version of God, the Buddha, Jesus, or the Universe. Connect with the energy around you with meditation, prayer, bed yoga (you can find videos on YouTube), coloring mandalas on your phone, or reading holy texts. Knowing there is something bigger than you gives you the peace that you are taken care of and that the pain flare will go away.

This is a little list, and I wanted to keep it small – pain flares can be overwhelming, and someone on the internet screaming at you to do 12 things might make you upset because you can’t get out of bed. You’re most likely phone surfing from your bed. But pain is cyclical, and this too will pass. Hugs to you.

Writer’s Block and Chronic Pain

For the past three weeks, I have been writing and revising a book. During this time the book was all I cared about. I didn’t eat or sleep – I could even ignore pain. Did I hurt like hell? Yes I did. But I put in 12 hour days working on my book in search of the holy grail of literary perfection.

I even hired an editor, who I start with in a week or so. But now the creative flow has ended, and my pain has hit me like a drunken bus driver with a load full of bricks. The stop sign was open, but he kept on driving straight into my measly Honda.

OUCH!

There’s nerves about the book. This time around I’m seeking to be professionally published. I want to know I can do it and there’s no guarantees. This is the bus full of bricks.

I also want my medical leave to be successful and I can go back to school when it’s appropriate – that is, when I have more answers and can manage my pain better – and also write this book to its polished shininess. AAAND this is the bus full of bricks slamming my Honda.

But if there’s one thing Disney movies have taught me is I can have it all, I just have to align the pieces in the balance of life. I don’t doubt Disney, y’all.

Preliminary Ebook Covers

Those who have been on this blog for any amount of time know that I suffer from PTSD. I also believe that it is the root cause of my chronic pain.

There is a lot of evidence that if one has untreated trauma, it explodes into fibromyalgia, and later other diseases. The therapist I work with now specializes in people with chronic pain and their trauma. I am blessed to have found her.

The year following my trauma I began writing poems. I have written poems since 2013 up until today. When I was in DBT I made a writer acquaintance who shared her writing resources, one of which was Scrivener. I got into the program and wanted to see how easy it was to publish on Kindle Direct Publishing (KDP).

It was very easy, however, there were some blunders. I will need to get better and this poetry book is my guinea pig book. Printed in a PDF it’s about 72 pages. I’m still figuring out how to create a print book through KDP.

Anyways, my poetry book It’s Okay, Magic Happens is on the Kindle store. I’m only not linking to it yet because I’m still trying to figure out cover art.

The magical cover
The blue Cover
The glitter cover
The flowers cover

Comment/tweet/contact me with your favorite cover (tell me magical, blue, glitter, or flowers) so I know which one to use.

Thank you so much and I hope you have a wonderful quarantine.

Fibromyalgia Comfort Wear Wardrobe

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.

If you’re anything like me, not long after you were diagnosed with fibromyalgia, you searched for answers. From everything from diet to treatment, to bras to footwear. You soon discovered that your body was ultra-sensitive to fabrics and you’ve probably ditched a bra by this point. I’m here to share some Holy Grail products of mine that I’ve found work like a charm.

The products below are enough to give you an entire wardrobe of comfort – I even included a bra! All of the items included come in multiple colors and patterns, so you can order multiple and mix and match for instant Spoonie Style, my Fibromyalgia Fashionistas.

1.Old Navy Jersey Knit Swing Dress for Women

This essential T-Shirt dress comes in 10 different patterns and colors. When I was first diagnosed with fibromyalgia, my mom took me to Old Navy and gifted me 3. I later thrifted 1. These are comfortable enough to wear without a bra. This is my favorite Fibromyalgia Fashionista find on this list.

My Pick: Old Navy Jersey Swing Dress for Women

2. Old Navy High-Waisted Leggings 2-Pack for Women

These are my favorite pair of leggings – a pack of one black and one gray, and there’s a plus size version too! My weight fluctuates with fibromyalgia and I am bottom heavy, so finding leggings to keep up is difficult. I find these are the Elastigirl of leggings at a great price.

My Picks: Old Navy High-Waisted Leggings 2-Pack for Women

3. Juniors’ Joe B Paperbag Waist Wide Leg Pants

Now I will admit, these Paperbag Waist Wide Leg pants aren’t for everyone, but they will snazz up an outfit. These are for real Fashionista Spoonies looking for Spoonie Style! They’re fresh, they’re funky, and they’re soft as yoga pants with more breathing room and style. The Paperpag pants come in multiple colors and patterns from Kohls.

My Pick: Juniors’ Joe B Paperbag Waist Wide Leg Pants

4.Amazon Brand Daily Ritual Women’s Jersey Short Sleeve Open Crewneck Tunic

This soft tunic available in multiple colors is long enough to be a dress on some people – if you’re under 5’4″ – but makes an extremely comfortable shirt. Comfort like this is perfect for Fibromyalgia Fashionistas. Nothing scratches against your chest and it makes excellent street clothes or pajamas.

My Pick: Amazon Brand Daily Ritual Women’s Jersey Short Sleeve Open Crewneck Tunic

5. The Genie Bra 3 Pack

For those of you with fibromyalgia who cannot go without a bra, this is for you. The Genie Bra is comfortable, breathable, and supportive. However, use the sizing chart and order one size up as it runs small in the band, which is a no-no for costochrondritis and rib cage pain. As long as you order one size up, you will have perfect Fibromyalgia Fashionista comfort. The Genie Bra is a type of sports bra and you will have to pull it over your head, which I can still do. Unlike many sports bras, it is a low V-neck, making wearing low-cut shirts possible. Look out for a full review from me on the Genie Bra soon.

My Pick: The Genie Bra 3 Pack

On Footwear

Your mileage may vary depending on what your symptoms are. If your fibromyalgia involves swelling like me, you may find yourself living in boots all of the time. I always wear high quality Chelsea boots, right now my brand of choice is Franco Sarto. Others have fallen arches and must wear orthotic shoes – I used to do this until my feet became too swollen.

For most Spoonie Fashionistas, I would recommend something soft with arch support, like a running shoe specifically fitted to your foot at a running store, or high quality boots that are expensive. Spend at least 30 minutes in the store trying on the boots. The boots should have a low heel, low height and have a zipper. If you’re in Texas, cowboy boots could work fine – take it from a Texan. However, your leg could get stuck in the boot if you swell while wearing the cowboy boots.

Mix and Match to Build Your Wardrobe

Have some cardigans laying around pre-chronic illness? Pair it with a tunic and some leggings for some cute laid back street style. Add a beanie or beret for some artistry.

Pair the tunic of a corresponding color with the Paperbag pants for an instant Fibromyalgia Fashionista “wow!”

The little knit dresses go with everything, especially the solid color ones, so have fun with those, Spoonie Styler!