The Chronically ill Creative

My life as a creative with fibromyalgia.

  • Art is NOT an indulgence

    Watercolor art by Miranda Gargasz, based on a piece by Lacey Walker

    I was the oldest of three kids in a dysfunctional family. From an early age, I “learned” that my wants and needs were secondary to others. As an adult, that lesson became so ingrained in my sense of self that I gave up drawing and painting and any other form of art because I viewed it as an indulgence–something I not only didn’t have the time for because I was also a wife and young mother, but something I also didn’t deserve. Add to that the opinions of others who felt my time was just being frittered away because I should be doing more significant things like working to help my husband (despite my health issues), and my creative side nearly died.

    My views are changing.

    When COVID shut down the world, I took my first art class online (I had taken one class in college, but my pursuits were career driven. I had no time for fun.). It was a class by Dyan Reaveley all about using art to aid your mental health. Prior to this class, I was making a living as a freelance writer and indie author. My anxiety got so out of control that I could no longer think in the way I needed to write. Couple that with fibromyalgia’s brain fog, and I was nothing short of a fingernail-biting, heart-palpitation-suffering, eyeball-popping, unemployed mess.

    My entire world opened up.

    I noticed PHYSICAL relief from applying paint to paper, glue to collage pieces, and doodling. My mind, usually a warp speed tornado, suddenly quieted. Imagine being in a room with hundreds of people talking and the room suddenly goes dead silent. THAT. That is what art did to my mind.

    Art provided order to chaos.

    The more I created, the more I realized I had physical evidence that I am more than just someone’s wife, someone’s mother, someone’s caretaker, someone’s whatever. I am an artist.

    Art obliterated my feelings of meaninglessness.

    The way COVID was handled made me think America had lost the plot. Consuming news on a 24 hour cycle ramped up my anxiety after that initial class was done. So, I took another class by Dyan Reaveley all about doodling while listening to audio books and BOOM! Suddenly, I could sleep. I could quiet the endless strings of repetitive worry before bed because I created in quiet and could suddenly rest.

    Art provided a sense of calm.

    Fast forward to the second election that now makes me think America has left the planet. I stopped consuming the garbage that can be social media and news. I canceled subscriptions to live TV. Instead, I journal. I learn watercolor from artists like Andrea Nelson and Lacey Walker. Instead of watching and consuming all the nastiness humanity has to offer in abundance these days and slowly chipping away at my soul, art became something new.

    Art became rebellion.

    I spend so much of my time now journaling, painting, doodling, and creating in every way possible. I have literal boxes full of memory planners, creative journals, art journals, paintings and drawings. Physical proof of a life lived.

    So, art is legacy.

    When I am no longer here, my sons and their children will have so much to go through, so much that says Mom and Grandma lived. Her thoughts are still here. Her heart is still here.

    Art is the little piece of me that my kids can still cling to when they need me after I’m gone.

    According to the Mayo Clinic, art has many physical effects on the body. It reduces blood pressure, soothes anxiety, increases serotonin levels, and increases blood flow to the brain.

    Essentially, art is medicine.

    I encourage you to create art in any form that makes you feel physically and mentally better. Art is self-care at its finest.

    Go create!!!!

    ***As an aside: It has come to my attention that there has been difficulty commenting on my blogs. I am working on it. I promise. Please feel free to DM me on Instagram @miranda_gargasz if you can’t comment here.

  • Finding Myself Again

    Photo and watercolor painting by Miranda Gargasz

    Photo and watercolor painting by Miranda Gargasz

    It has been nearly two months since I had to shut down my stationery shop due to my health issues and personal stuff. I felt lost, a ship without a compass, adrift at sea, my destination forgotten.

    I realized that it had been nearly a year and half since I had done any painting or art journaling. I no longer played with art the way I used to. All my creativity had been poured into products. Make the money, lady. Hustle, hustle, hustle. There’s no time for fun! You gotta work!

    I think I burned out a bit.

    I found myself thinking about how social media makes our lives so noisy. The constant desire to be plugged in, not missing out, was eating at me. I needed to stop the constant chatter and the “Look at me!” call of the internet.

    So, I disconnected.

    Facebook? Nope. Instagram? Not really. Discord? No. Messenger? No. YouTube? Once.

    In the last eight weeks, I’ve been clawing my way back to myself. I spent a lot of time grieving yet another thing that fibromyalgia took from me in my business. I cried. I slept. I became mired in an awful depression. I finally accepted that, sometimes, what my brain wants, what my heart wants, doesn’t matter because my body doesn’t care. My body says, “Nope. Rest and recharge. Don’t push your luck. If you do, I’ll remind you who is really in charge here.”

    I started putting my focus in different areas of my life to be of use to my family in new ways. My youngest son was only just diagnosed with Autism Spectrum Disorder at 22 years old–a diagnosis that was masked by his giftedness in school. I started, and continue, to learn more about his neurodivergence. My training as a teacher is only good for identifying children who may need testing. In none of my classes in college was I ever taught about the twice exceptional child. So, a lot of my time has been devouring all information I can to help him succeed in life. He’s stumbling. A lot. Mama Bear won’t let that be the final answer, though. I’ve got his back.

    I started trying to take something off my husband’s plate. He’s had a tough year so far. While I can’t always do the housework because of pain, and I can’t always make dinner for the same reason, what I CAN do is organize our finances and put us on a workable budget–something he has stumbled over due to his own struggles with depression in the last few months.

    And I started to paint again. I broke out my watercolors and decided to play. I am not that comfortable with them. Water is an unruly medium, and I struggle to get it right. However, that painting of my Katie up there turned out really good. I’m proud of it. I started a small watercolor sketchbook and am excited about being in the studio again.

    I reached out to my friend Pixi in England. We’re going to start a Wreck This Journal together to create memories even though we’re an ocean apart. I cannot express how excited I am about this new endeavor!

    And I’ve been thinking about this break from social media. Other than Messenger (it’s the only way I have to communicate with my British friend) and a post here and there on Instagram, I’m not really planning on diving into social media in the way I had been. I may still film once in awhile as the desire strikes me, but as far as posting regularly . . . I don’t see it happening.

    Sometimes, you have to make the world stop spinning. You have to get off. Remember who you are, or were, without technology. I know I exist there. My happiness exists there.

    Social media’s noise drowned out the good stuff for me.

    Time to turn down the volume. Regroup. Find myself again.

    I’ve missed her.

  • The Problem with “Dire Wolves”

    We’re about to delve into some science opinions here.

    Photo by Eva Blue on Unsplash

    While my interests are widely varied when it comes to the arts, I, like many well-rounded humans, also have interests in other areas like science and technology. Not so much the technology, but for sure when it comes to biology.

    When I was young, I had begun my college career on the pre-veterinary medicine track. This is not a shock to anyone who knows me, because I tend to like animals WAY more than humans. I developed an interest in wolves at a young age. When I was in college, I sponsored a wolf from the Sawtooth Pack that was reintroduced into Yellowstone National Park. His name was Amani, and his sponsorship remains something of which I am truly proud.

    Their reintroduction into Yellowstone had huge environmental impacts, from regulating prey populations, to restoring ecological balance, increased biodiversity, and healthier ecosystems overall. We see that in the changes in elk behavior. Fewer elk and the wariness exhibited in those that remained caused changes in grazing patterns. Those changes affected vegetation growth. Stabilized vegetation growth along river banks made the rivers more stable by reducing erosion. A more stable river system positively affected the fish, birds and other mammals like beavers. Given that wolves leave carcasses behind to be eaten by other predators like bears, eagles, and cougars, those species began to flourish, too. Reintroduction of an apex predator to a system provides much needed balance. Given that wolves were hunted out of existence in Yellowstone, as humans we had a duty to fix what we broke.

    Which brings me to Romulus, Remus, and Khaleesi, the “dire wolves” who were recently “de-extincted.” If my quotations are of any significance to you, reader, you’ll know exactly where I fall on the spectrum of people who think this was a wise or even good decision moving forward.

    First, let’s talk about the “dire wolf” and “de-extincted” phrases. The DNA that was manipulated in this instance came from gray wolves. Gray wolves share 99.5% of their DNA with dire wolves. That .5% seems small, but that leaves something like 2 billion pieces of DNA unaccounted for. Scientists chose just 20 changes in 14 of those genes to create what amounts to a designer gray wolf with dire wolf traits. That’s not the same as a dire wolf, no matter how much you want it to be.

    Second, let’s talk about why dire wolves no longer exist. They were a predator that lived during the ice age. Their existence was wiped out by climate change. That change in climate shrunk their food supply. Their dwindling food supply put them in direct competition for food by other large predators. The birth of new canids, like the gray wolf, also caused their numbers to dwindle because they couldn’t mate with them. Life did what life does and they, sadly, perished.

    So, how does this differ from the reintroduction of gray wolves? First, no one created a new species or one with specific genes expressed that weren’t prior. They simply moved a pack from Canada to another place that shared the same climate, wildlife, and flora that we knew they already lived in. A reintroduction differs vastly from what is being attempted here with the “dire wolves.” Given what we know of how that reintroduction changed things in Yellowstone with KNOWN variables, what does that say for these hybrid wolves whose variables aren’t known?

    We can make highly educated guesses about these designer wolves’ environment and food sources and how they may change, but we can’t be 100% sure those guesses are correct. We’re literally playing in the genetic sandbox here. Forgive me, but I believe there was a movie made about that level of irresponsibility a couple decades ago. The theme of that movie was stated in one line: “…your scientists were so preoccupied with whether or not they could that they didn’t stop to think if they should.” There could be unforeseen consequences to this choice in genetic manipulation. Even placing them on their own land may not be enough to sustain these three wolves’ lives. We have no idea how their existence will change the ecosystem in which they live. And, before we even know what the consequences of such science are, Colossal, the company that created the wolves, is working to bring back woolly mammoths, dodo birds, and Tasmanian tigers. Just the thought that scientists think they can control any aspect of this “experiment” is colossal arrogance, in my opinion.

    Now, don’t get me wrong. The science involved here is useful for animals who are endangered like red wolves. I don’t have a problem with conservation efforts that fix what we as humans destroyed out of hubris, in the name of development, or just plain stupidity. However, I approach this level of gene manipulation with a great deal of caution and worry. Even though we know the science of DNA has been around forever, it is still a relatively young and burgeoning science . We didn’t start using it to solve crimes until 1986 in the UK and 1987 in the USA. It is advancing every day and scientists are making breakthroughs at breakneck speed.

    However, much like Ian Malcolm, I believe that life finds a way. It is the height of human arrogance to think we are in control when it comes to many things, and I think these wolves are a good example. Colossal believes they have de-extincted an animal that nature eradicated. Whatever is on the horizon, for good or ill, we need to tread VERY cautiously. There are consequences to everything. We don’t know the consequences to this.

    I guess we do as Ray Arnold advised.

    Hold on to our butts.

    Leave a comment

  • Fibromyalgia: More than just a pain in the….

    Look at how many fingers she has! What in the AI craziness is this???

    I was very ignorant of just what fibromyalgia was before I was diagnosed. In my ignorance, I thought it was just that folks with it hurt when you touched them. So, as long as you kept your hands to yourself (as you should!), they would be ok.

    No. Not even a little.

    I had no idea that fibro is what I had the day I was diagnosed. I had called my doctor, who had recently diagnosed me with Hashimoto’s Thyroiditis, an autoimmune disease of the thyroid. It causes massive fatigue. We’re talking 16-hours-of-sleep-and-still-exhausted level of fatigue. After being medicated for that, I was still having bizarre symptoms. I had pain in my joints, but which joint changed every day. One day it was my wrist, the next day my ankle, the next day my hips. When I called my doctor, she said, “You could see a rheumatologist, but I think it’s just age related.” I was 45.

    I made the appointment with my rheumatologist. When I went in, I was in a wheelchair because walking distances from just my car to the exam room was too much. My legs would give out after just a minute or two of walking. My old doctor said that was due to damage done to my spinal cord from a prolonged period of low B12. I was diagnosed with that at 44. My health RAPIDLY declined that summer, and I went from waking unaided to needing a rollator and wheelchair in the course of just 1 month. Every blood test you could imagine took place, and it all turned up nothing.

    When I explained all of this to my rheumatologist, he said, “I think what you have is fibromyalgia. Unfortunately, people with a severe case of it lose their mobility.”

    Oh.

    Yay.

    And the hits, they kept on coming.

    Here is the list of aches and pains that are common with fibromyalgia, in my case.

    Persistent, widespread joint pain, joint stiffness (especially first thing in the morning), sensitivity to touch, brain fog, slowed ability to communicate (like your brain needs a few moments to make the words come out of your mouth or think of the word for simple things like “spoon.” I usually stumble through with, “You know? The thing you use to put food in your mouth. Not the pointy one. The round one.” Circuitous, but it gets the job done) migraines, muscle weakness, muscle spasms, costochondritis (pain in the cartilage and tendons that support the rib cage), interstitial cystitis (painful bladder spasms), intolerance of temperature extremes (the changing of just 20 degrees in a day is enough to trigger a flare up), skin pain and redness if exposed to the sun (even through my clothes), fatigue, memory problems (I can forget whole conversations I had just minutes prior, but can tell you what my best friend wore on picture day in ninth grade), inability to regulate body temperature, IBS, Reynaud’s Syndrome, blurred vision (there are days that I can’t see much at all), loss of balance, loss of my voice, insomnia, overstimulation when it comes to noises or the sounds of my environment, depression, anxiety, dizziness, clumsiness, and numbness and tingling.

    I’m sure I’ve forgotten some, but you get the point. It’s a lot. And, contrary to anything Dr. Google tells you, fibromyalgia does get worse over time. It won’t kill me, but it will continue to make my life miserable. Medication slows it quite a bit, but it doesn’t cure it. It just makes the pain bearable. Mostly.

    To combat all of this, I play little games that are supposed to help keep my brain healthy. I have braces for just about every joint in my body, including walking casts for when my feet hurt so badly I can’t put weight on them. I even have a neck brace for when my neck decides it can no longer support my head. The last time my neck did that, it took three weeks for the muscles to stop spasming and do their job. I still have a rollator that I use when I am out and feeling strong enough to walk short distances but there are no options to sit down where I am going. Daily, I use arm crutches to get around most places as long as the walk isn’t lengthy and there are places to sit and rest. I have the wheelchair for everything else. I can drive on good days, but I won’t drive if I don’t feel it’s safe for me to do so.

    I never know from one day to the next what I am going to feel like. Keeping a close eye on the weather can help me plan for the possibility of a flare up of symptoms, but it doesn’t always help. If I did too much housework the day before because I was feeling okay, I could be out of commission for three days regardless of the weather or temperature. It makes planning anything a challenge. Almost every engagement with me comes with the caveat that I might not be able to hold up my end of the bargain, and I won’t know that answer until the last minute.

    Flare up days are the worst for me. They can last from a couple of hours to weeks long. I can’t do much of anything except lay on the couch. That makes this creative absolutely stir crazy. I need to DO things. My housework suffers because I can only tolerate so much movement in one day without triggering a flare up. My relationships suffer because I am not always able to be present for birthday parties, school programs, or even holidays. My mental health suffers because I had dreams that are just not able to happen because my body has betrayed me. I feel like a burden to my family and friends because I sometimes can’t make my own dinner plate, shower on my own, or help out with much. It’s a tough day when your husband has to bathe you because you need your hands to hold up your head. He assures me that this is what he promised the day we married, but it doesn’t erase the shame and uselessness I feel because he has to. It doesn’t erase the shame and embarrassment I feel when my relationship with my adored nieces suffers because I’m just not there a lot of the time. It doesn’t erase the shame I feel when my own adult children have to step up when mom can’t wash the dishes, run the vacuum, or potty the dogs.

    But, through it all, I try my damnedest to not let fibro get me down. Some days are easier than others.

    To sum it up, fibromayalgia is a pain in the ass.

    Literally.

    Leave a comment

  • Welcome!

    Welcome!

    Welcome to my blog, The Chronically Ill Creative! My name is Miranda, and I am so happy to have you here!

    That image up there is generated by AI, but represents the style of art I create. It’s whimsical and fun, and not at all representative of my real life! LOL!

    I live with fibromyalgia, a devastatingly painful and unpredictable “condition” that rules every aspect of my life. I never know from one day to the next how I will be feeling, whether that will be minor pain I can ignore, or pain that leaves me on the couch under a heated blanket with my dogs and moving only when absolutely necessary.

    Regardless, at my heart I am a creative person. I MUST create. I have no clue how there are people who aren’t driven to express themselves in some creative way or another. My interests are widely varied. I paint, draw, collage, write, journal, crochet, knit, and love creative planning. If you don’t know what any of those are, you’re in luck! I’ll be sharing them here.

    I recently closed down a stationery business I had called Miranda Has Plans. I created cute, whimsical stickers based usually on my dogs and whatever interest I had at the time. Fibromyalgia robbed me of that endeavor. I just couldn’t keep up with it. It required much more of my time and energy than my body could consistently maintain. It threw me into a deep depression.

    This blog is my way to climb out of that.

    Thank you for reading this far. If this sounds like something you’d like to read, give me a subscribe. Let’s connect about all this stuff I call a creative life.

    Love,

    Miranda, The Chronically Ill Creative