I wrote an article for URevolution a while back and was paid in the form of a T-Shirt via a $30 gift card. As my weight fluctuates I always need new clothes, so I welcomed the opportunity to amp up my wardrobe. The designs URevolution has are also cute and minimalist.
I ordered a 2XL, and it fits me like a T-shirt dress, which is what I wanted. I especially like this shirt due to pride month.
When I was in high school, in my tiny rural town, I had a gay friend, out of the two gay people in that entire village. His dad found out and he had to run away. He’s doing great now, but at the time I was really upset and full of righteous indignation.
If I write for URevolution again, I plan on getting this shirt:
I really like URevolution’s disability focus and intentional inclusivity of all types of disabled people across races, genders, and sexual orientations.
They are new and a little disorganized, but they will communicate with you should you have a problem receiving your gift card like I did. I found them to be cordial and kind.
URevolution also ships fast. I had my shirt in 3 days.
If you’re interested in branching out and getting your first paid gig, I recommend writing for URevolution.
Disclaimer: there are affiliate links in this post. If you click on them, some money may go to me, at no extra cost to you.
I love acupuncture, but with the current state of the world I unfortunately can’t receive it. My pain flares are ever changing and varying in experience – for some I will be crying in bed, others it’s sleeping all the time, and still others I will be functional but unable to move very well.
In the past I heard about acupressure mats, and recently saw a functional medicine doctor who recommended an acupressure pen. The pens are more expensive than the mats, and so to get out of my current pain flare I ordered the ProsourceFit Acupressure Mat & Pillow. It’s $15 if you follow the link.
It came in the mail today, and I was beyond excited to try it. Admittedly I was a bit worried about how it would work on my hard stone floors, but I had no problems. With the acupressure mat comes a manual, and I started out at beginner – 10 minutes. I could have gone longer, because it was so relaxing!
I focused on my back, neck, and shoulders. The manual that comes with the acupressure mat provides different positions for different kinds of relief. There is even a way to use the mat while working in a chair! My lower back is in pain all the time, so this provided needed relief.
This mat feels like a rollercoaster of soothing sensation, which is kind of how real acupuncture is. I could feel the tension relief sensation move around my body.
After the 10 minutes, I found I was very chilled out, like after getting a good massage. As someone who would get weekly massages, but can no longer due to budget and dystopian America, I highly recommend this for fellow fibromyalgia folks (or anyone with chronic pain, especially sciatica) for that nice “ahhh” pleasant sensation.
I highly recommend the ProsourceFit Acupressure Mat & Pillow for anyone needing relief on a budget.
This product will make you sleepy, so I recommend using it at night before bed, instead of starting your day with it!
While writing my book, Wedding Planning for Spoonies, I realized how ableist I was despite having a disability. Even the subtitle of the OG cover shows that.
I have had a debilitating mental health disorder for 17 years, and chronic pain for 1 followed by extreme GI issues for 4. Each night I would vomit. But the doctors all said that nothing was wrong.
Because I had experienced discrimination throughout my life, I assumed I wasn’t ableist. But I slowly recognized, especially in the past few months, how I had internalized that prejudice and let it define myself and others.
For example, the word “crazy.” I had always adopted this moniker to try to mask my severe mental health problems instead of addressing them. I very badly wanted to be a “normal” person. Later I realized that disabled people, mentally ill included, are normal. We are our own normal. Disabled people are human beings like everyone else.
Maybe I never stopped to question what a human being was. It isn’t someone who drives a car or has a career. I was so focused on achieving that I never stopped to think that all people get sad and angry sometimes. We all get hurt. Maybe we don’t all have identical experiences, but we all feel the same feelings. There isn’t a person on this planet who never felt anger or grief.
In this regard, perhaps I was lucky to end up disabled. I had to slow down and reevaluate myself and work hard on myself to change bad thought patterns that blinded me to fundamental truths. I’m not saying I don’t want things to change – I would love to be healthy again – but this season of growth was spurred by losing total control of my life.
Perhaps when we are forced to “let go and let God,” we find ourselves and others in the eye of the storm.
You know those pain flares when you end up crying? Yeah, I just pulled through one of those. I think it was the Saharan dust storm. But I don’t want to just complain. It’s more of an explanation of why I’ve been gone for so long, in case anyone noticed.
I became a Super Contributor for The Mighty and had my resume forwarded to the CEO of Junebug Weddings. Both are paid positions, and I am extremely excited.
When I talked to The Mighty about being a Super Contributor, I explained I was elated but confused, as most of my articles hardly have any likes on them. They explained that it was more about my persistence and creativity that they wanted to make me a Super Contributor. I have somewhere around 12 articles written with them.
Persistence means a lot, friends. If you’re struggling, don’t give up, and maybe read a book. That’s where I’m at with my book writing – I’m reading other wedding books right now for inspiration, and it’s helping a ton.
If you read this I’m sending you love vibes from my part of the universe. Thanks for reading.
As an experiment for my DIY home spa, I wanted to shake things up a bit for my foot soaks. A few of you know I have edema and swelling in my legs and feet. Green tea is anti-inflammatory, and I wondered that if I soaked my feet in a giant Tupperware of green tea, my swelling would go down.
Step 1: Giant Tupperware
Simply find a bucket or Tupperware, something easy to clean and big enough for both of your feet to comfortably rest in. I do not recommend anything that is glass.
Step 2: Kettle of boiling water
Boil 1 kettle of water. Just one.
Step 3: Steep 4 bags of green tea in the boiling water.
Steep the tea bags for 3 minutes. Set a timer and locate some peppermint essential oil or some peppermint leaves. Add the peppermint to the mixture to scent preference.
Step 4: Pour 2 cups of room temperature water to the mixture.
This will cool off the hot water so you don’t burn your feet.
Step 5: Soak your feet for 20 minutes.
Set a timer and enjoy yourself. Bring a towel so you can dry your feet off and some lotion. At the end of the 20 minutes, towel your feet off and lotion your feet up. I found after doing this, my feet were much smaller in size and were in much less pain.
For those of you suffering from swelling, I hope you find this useful. I will try a variant of this on my hands tonight as they also swell, and report back later.
Everybody has an evil little voice in their head that tells them they’re a piece of shit, or that something nice that happened to them was really sinister, or a good friend is out to get them. Many people name their evil little voice. I never have, but lately I’ve been thinking “anaconda” or “Brenda.” Mainly because my anaconda don’t want none unless you’ve got buns hun, and Brenda sounds like an annoying girl name. Like the Karen memes, but for a 14 year old. A blonde, cluelessly destructive 14 year old.
My Brenda anaconda (this is getting weird I know) likes to distort memories. Sometimes I wake up in the morning and she is flat out screaming at me that I am a horrible person and I should just… well… not deserve to live and I am an idiotic piece of shit how dare I take up space?
Brenda is not fun and she is basically a dick.
Brenda’s anaconda likes to blame other people and bite me into becoming a victim which is way not cool because other people have their own damn lives and I am a fucking person too.
So fuck off, Brenda. I don’t want none of your anaconda. CONSENT BITCH.
My psych meds are literally killing me… and I can’t get off of them. Yet.
I have medically-induced lupus, which can be cured once the person is off the medication that is the culprit. However, each time I’ve tried to taper off, something insane has happened. Running away from home, suicidal ideation. I miss the days of binge shopping. It was a bad habit but much more harmless than sneaking off in the middle of the night to try to make it to Marfa.
Recently I talked to a family friend of my dad’s who is around my age. We played together as little kids (think preschool), but I never really hung out with him. He was accepted to Stanford and moved out to California. I knew a little bit of his mental health struggles, and I was desperate to find a way to get through grad school. Because I knew he did it, I called him up and we had a long conversation. I was probably too negative and stole his vibes, but he was kind to me and talked about tapering off meds and healing. It was a bit of an awkward conversation due to us not really being friends for 20 years, I’m sure, but he handled it well.
He suggested I go on a retreat into the desert while I went off the medications, once I had a plan in place. Which sounds really cool but also scary to me, considering how wild I get during withdrawals.
After our conversation I did some research and discovered The Withdrawal Project, a non profit, pharmacist-vetted, FDA approved resource dedicated to guiding those withdrawing from psych meds. I also reached out to a research neurologist who had previously said she would refer me to a research psychiatrist at the medical school.
I have had fellow friends who were diagnosed as kids who tried getting off their meds and ended up developing epilepsy and needed to get back on their meds. I am very afraid of this happening to me, as we take similar bipolar medications.
Right now I am typing up a plan, called the Freedom Itinerary, to try to roadmap out of here. Hopefully I come up with something that works and I can stick to it.
I have been taking steroids in order to walk around without a mobility aid. Somehow I can get up at 6AM and do yoga, but after that I have difficulty moving. A big problem is that my legs and feet are as big as water balloons. They constantly itch and burn, and it’s hard to put any pressure on them at all. Imaginably, this makes walking almost impossible.
This past week, I had to go into town for a doctor’s appointment. I had my cute pink mask on, and the only pair of shoes I could get my feet into – some Franco Sarto Chelsea boots I had gotten as a Christmas present. While sitting in the passenger’s seat, I had to peel off the boots 3 times because of how badly my feet were swelling.
Eventually, my husband, family and I decided that I needed to get some high quality shoes that would be versatile in Texas. My mom has owned and worn a single pair of San Antonio Shoemakers, SAS, sandals for 35 years. She bought them right before her wedding to my dad. The shoes are handmade in San Antonio and I discovered when I walked into the store it was the kind of place that didn’t have prices listed anywhere. Fancy.
I settled on a pair of straight-up Velcro sandals fairly quickly by asking for help (as I was in my boots, I needed to get out of those things and be assisted while sitting down). They were the Cozy Slide Sandal in a double wide. This time in stores they were on sale for $114, the shop keep told us – if you click the link, you’ll find the full price.
The Cozy Slide Sandals are really, really comfortable – and they do their job in assisting me in moving around without a mobility aid. I wear them all around the house because they feel like walking on clouds. This adds a layer of fluffy but structured cushion between me and the floor, making it easier for my feet to hold up to individual steps.
The sandals might not be the most fashion-forward, but I was so relieved and proud of them that I took a couple of pics of them on my feet. (These will not be shown, because, well, I don’t want to end up on a google search for fat feet. I have sick feet, not fat feet, thanks.) I purchased the matte cream color that still sparkles a little in the light. The versatile color and the fact I’m in Texas means I’ll be able to wear these 2/3 of the year with basically any outfit. And for the price, I will probably be wearing them with all of my outfits.
I used to tease my mother about her SAS sandals, because to my young self they looked like old lady shoes, but I totally understand now. Hopefully these last 30+ years. I’m not much of a shoe person, but nothing quite feels like a brand new pair of shoes. With the addition of my neuropathy and swelling, shoe buying has a new layer to the hunt. Knowing where to look certainly helps.
I’ve been off the internet for a while trying to figure out good ways to care for myself as I went through my latest pain flare and manic episode. With the help of my EMDR therapist, I came up with a daily routine, scheduled by the hour, for about 4 different tasks I could do, excluding morning quiet time hour.
I’ve been practicing a rough version of the routine for about 4 days now, and it really helps when the anxiety kicks in. Knowing I have something to do at all times is extremely grounding. In the back of my mind I do know I have something to do at all times, but having a printed out schedule for a visual cue really helps.
So, my biggest tip for fibromyalgia self-care is to have a broken up schedule, especially for days you don’t work, or to manage your work day.
Morning Quiet Time Hour
I have about 7 tasks I do in morning quiet time hour. That sounds like a lot, but they’re all in the same vein – spiritual and relaxing.
I begin by putting on some chakra healing music. Then there’s yoga, with a minimum of 5 asanas (AKA poses), each held for 10 breath cycles. After this I grab some water and I meditate for at least 10 minutes, maybe more, to a morning time meditation on gratitude. Then I do intention setting, a type of meditation where you place your hands on your heart and reflect on what makes you afraid, what gives you strength, and a spiritual power. The point is to find a word that comes to mind when reflecting on the spiritual power to center your day around. When you know your word, write it on a piece of paper and place it in a drawer or your pocket, and at the end of the day read what it was. Once I find my word, or intention, I write a gratitude list with the chakra music on and sit in the dark until the sun comes up. Once the sun is up, I grab a coffee and sit on my back porch with a sacred text to read and my journal to reflect in. The point of this last step is to grab the first 20 minutes of sunlight.
I do set an alarm every day to wake up before everyone else. Some might think this is pretentious or impossible, but I really do think with fibromyalgia personal quiet time is key to starting off your day right. Investing in yourself alone and having niches for yourself is paramount to cultivating positive energy that you will need to fight the pain off throughout your day. Sometimes putting in a little more effort at the start results in ease the rest of your day.
The Rough Schedule
7AM is breakfast and more coffee. I mix up writing, laundry and job hunting until 11AM, when I hop in the shower and make sure I’m dressed with my hair and full makeup done for lunch. After lunch, around 12:30 I do “music in the dark” – either chakra healing music or my favorite tunes of the day for thirty minutes to an hour. At 1 to 1:30 PM I start continuing education. I have a few free Udemy courses on web design and writing I’m taking, and I spend this time until 5pm with a few music and writing breaks. It’s time to cook dinner at 5. After the family finishes at 7, I either hang out with a friend over Zoom or read a book and do a DIY home spa. Lastly, I finish the day with a relaxing meditation. I’m done by 9:15, and it’s off to bed.
DIY Home Spa
I’m big on physical pampering to fight fibromyalgia. I like to feel physical joy, and I take pride and pleasure in grooming myself. This is why I put on makeup every day and do my hair. Another thing I like to do is take a large tupperware container, big enough for both my feet to be submerged in water, and put a kettle of hot water (not boiling), 2 cups regular temperature water, 1 cup lavender epsom salts, 1 cup coconut oil, and 10 drops eucalyptus essential oil in it. I have a little space of the house to myself and a comfortable chair. Then I turn off all the lights, light a candle and soak my feet for 20 minutes while reading a light, fluffy book and listening to my current favorite music. If you do the foot soak, be sure to put lotion on your feet afterwards!
The alternative variation of my nightly home spa is a epsom salt bath without the coconut oil and two cups of epsom salts.
Special thanks to @KarenDScotland and @AManWithFibro who made this iteration of the book possible.
I am on iteration 4 of the book. Right now I am awaiting the official MS notes from my editor. But she did send me some more notes in an email. Right now my job is to:
Beef up word count (sitting around 20,000 words which is a bit short after gutting the book)
Make the book more hopeful and peppier
The book’s job is to serve:
the mobility impaired (meaning wheelchair users, cane users, walker users, anything that helps you move, etc)
those who suffer from chronic pain
those who have chronic illness (this is a huge range – and includes those with epilepsy)
I’ve taken a break for a week or two from writing because of various stressors in life and I’m going to take advantage of a calm day of chaos to get back in the saddle again. Thank you to those who have helped me with my interviews and surveys, you are invaluable and amazing.
If you should wish to contribute to the project, email me at email@example.com. The more research the better!