I want to believe in positive change, in a better year than last, an easier, graceful year. Wouldn’t mind a fairly “boring” year, I tell myself, anyway. Meditation, writing, research rabbit-holes, art, and lots of music are my simple blessings, along with my loves. I refocus a couple of times a day on building stories, managing my sometimes dicey health with too many strategies to count, surrendering a lot of empathy and sympathy for friends and strangers to Universal Love, and reviving optimism and humor. This feels habitual now. From what I’ve learned, chances are my same ol’ baggage will be with me at the end of the year, maybe a bit lighter. Chances are I will apologize less and love myself more by N.Y.’s Eve, too. Chances are I’ve healed the past… unless my secretive psyche surprises me.
Chances are the stories I have to tell are different this year, and hopefully get better with consistency. I will read interesting and well-written books, and more of them than last year since it is a highlight. This year will be different than last, chances are.
Healing is an ongoing process, seemingly without an end point, a path spiraling upward and down again as life deals hand after hand, a few winning, most reliant on how mindfully I play my cards. In a world where masculine energy is celebrated for achievement, athleticism, and material success, we often yearn for and bemoan a lack of feminine energy-compassion, acceptance, natural beauty and nourishment. While we all possess both Ying and Yang energies, our world is currently brash and incongruous with a surplus of violence, greed and unmet desires for more of everything. The more we want, the more we consume, our well-being sometimes clouded with overwork, frustration and envy. I began learning mind-body practices five years ago and as I made rituals of my own, my mind and heart connected in a profound way which eventually awakened my soul to a richer existence.
5 rituals for Balance and Resilience
Writing/typing a page/note helps me see where my mind is and corral self-defeating assumptions galloping toward triggering situations and people. Words are precious to me; how they can be curated, constructed, or destructed with an intention to relay a feeling or a grand idea is evidenced in quotes we refer to centuries later. Writing has been a purging and healing ritual since childhood.
Cleaning is often a ritual. I use a handmade turtle rattle as well as 432hz or 528hz music to move out heavy or unhelpful energy, and smudge with white sage, incense, or palo santo. I cleanse the front door, my desk, 2 small dressers on the sides of the bed and my altar with distilled water plus a few drops of peppermint or lemon essential oil to both disinfect and purify energy. My bedroom is a sacred sleep/intimate space and keeping it clean is part of Feng Shui for the bedroom.
Lighting a candle and staring into it for a few minutes , or closing my eyes after lighting it and sitting in stillness or meditation/prayer has given me profound insights and often solace. It takes practice for the mind to quiet, but focusing on breathing helps. I have an altar in my office with crystals, bits of nature and female statuary I find empowering. This is a personal choice guided by Spirit, however I know a few practicing witches and do not mind being called one. If I accept any label it is Writer and Friend, who’s interests are varied.
Gardening is ritualistic with it’s seasonal to-do lists, year after year of amendments, new life, relocations, death, and as of last year-food. It’s not a big garden, but every time I water the giant hostas, the pole beans or even the petunias in flower boxes, I feel motherly and grateful at the same time. There is a definite reciprocity and satisfaction to natural law with the ants, the droughts, the storms that have whittled down my sense of entitlement. Every year is different, seasonal rhythms often upset by something happening far away from my home.
Cooking with fresh foods and spices can be a creation ritual, as is making tea. When I was tired and stressed from working at a highly-pressurized job, I admit I didn’t appreciate good food as much as I do now. That’s the thing about being overworked-I spent a lot more on convenient frozen and packaged food only to become ill. Now I know health is wealth. This is also one of my favorite ways to show love.
These are small ways I cope with a busy digital world full of stressors vying for my attention. Rituals have signaled my spirit that I love me; a big difference from 5 years ago. I hope it sparks something for you because each of us adds to the whole, and most of us can use some lightness, a reprieve, however small. Namaste
Professor Fritsche kindly allowed Phoebe to submit both her and Shana’s essays on the topics of marriage, lust, and consequence, as portrayed in Tolstoy’s Anna Karenina. Their deceased parents served the young women’s purposes as bad examples similar in scope to Anna’s, although they had different opinions about her karma. Professor F peered above his glasses at her and mumbled something about, “a waste of talent” and “Hope you’ve started your final despite everything”. He finds the ground under academics more stable than death‘s abyss of unknowns, Phoebe thought later over a cup of peppermint tea as she sat in the grass and pretended to read Mary Shelley’s Frankenstein for the umpteenth time. With her urging, their 19th Century Lit prof agreed to submit a final grade for Shana, minus a final exam essay, if the Dean of the English Department, and one of Shana’s most loved professors, approved. Phoebe simply framed her request as a memorial to Shana, and gave the Dean a copy of her friend’s last and final essay. The Dean found Shana’s ideas about passion versus fidelity especially naïve and moving in light of her suicide. Shana would receive a grade for her favorite class that semester, and Phoebe would remember it as the last course they took together. Classmates gave her shy nods, their sad eyes relaying the words they didn’t find. A few were obviously surprised when she walked into chem lab an hour after being released from Resting Pines, not that they imagined what Phoebe ran up against after her best friend’s painful exit.
Her fists slid off it’s slick stark white scales as a serpent with Doyle’s dark eyes fully consumed her. Phoebe discovered herself a golden serpent who slid across symbols carved on tangerine colored walls within her Grandmother tree, an ancient cedar in the Northwoods of Michigan. The symbols pulsed with heat as if alive, but the Ankh is where she fit her slim viper form. Her head rested in the opening of the key of life and Phoebe finally surrendered all she was before Shana’s suicide. Intelligent and witty, her well-crafted college persona came apart at the seams like a sun-bleached scarecrow, mere stuffing of knowledge, sarcasm and friendship scattered, buried, and carried off by crows. Or snakes. Phoebe dreamed of a snowy white python with hinged jaws thanks to Kazmir, Death’s demon who orchestrated these nightly feasts. Warm blood pulsed and squirted into her eyes and mouth as she yelled out, foot, ankle, tibula and fibula crushed like glass in a grinder with each agonizing swallow. Smothered screams with the last gulp of her skull and then nothing until she opened slits and felt her essence in a snake’s condemned existence. “As low as a snake”, Kazmir whispered as she envisioned her cedar sanctuary finally on the third night. In the Ankh, considered in Hebrew as the “Key of Life”, Phoebe’s essence glided among reeds along a lake’s shoreline, her slim serpent body a ribbon of gold amongst the cat tails and lily pads. She dove and swam along the bottom between weeds that rose toward the light above, rocks risen from below, and an occasional clam, the silt velvet against her tender underbelly. Deeper and deeper into the dark she searched and undulated her length as she came to embody the viper and her eyes adjusted to see every shadow. Unsure of what she sought exactly, Phoebe swam until far away she thought she heard a song one only ever sung for her, in private. Ahead, a blushing glow grew and beckoned with a sad melody where only friendship existed before.
“Some say love, it is a river that drowns the tender reed. Some say love, it is a razor, that leaves your soul to bleed.” Shana sang Bette Midler’s The Rose for Phoebe not long after their blood sister ritual at the end of 7th grade in 1985. She’d sang it to her countless times over the past seven years, when Phoebe felt like anything but a rose, and it served as a soothing balm. Although she’d never been able to express how special it made her feel, she didn’t have to. For Shana, Phoebe’s patient tutoring, whenever she needed her, felt like acceptance during the years that followed her parent’s abuses. Phoebe had never made her earn love, and forgave easily, but Shana had never skipped out on classes before. Her personal drug usage consisted of a couple puffs during marijuana movie nights at a friend’s apartment last summer. Her parent’s addiction served as a constant reminder of how drugs and alcohol changed people for the worst, hard-won knowledge which kept her straight until Doyle’s manipulations opened the door for Death. During the last weeks of her life, paranoia about losing Phoebe’s love grew as Kaz gleefully watched her create her own scenes of rejection, including burning insults it planted in her psyche. The two friends had never exchanged insults, had never even had a blowup disagreement, but Shana’s artist’s imagination had always been powerful. If they had fought, Phoebe would have explained how it was simply impossible to lose her friendship for a mistake. She would have said “Love forgives”. As Phoebe the golden snake entered the pink glow of a temporary healing chamber, miles deep in a Great Lake, their human essences reformed as womanly silhouettes. Shana and Phoebe hugged and cried dry tears as they held onto one another. No words sufficed, so none were exchanged.
Phoebe awoke to Doyle’s yell from the kitchen, “Time to get up, Phoebe! Gotta fly, but there’s hot water in the kettle. You awake?”. “Yeah” she croaked followed by a stronger, “I’m up! I’m good!”. Her voice squeaked a bit. She prayed Doyle didn’t check on her behind the privacy screen and spy the perfectly shed golden-hued snake skin complete with eyelids stretched out on her bedspread. Doyle flipped the switch on the radio and turned up the volume so she’d get up for sure. Paula Abdul accused her of a being a “Cold Hearted snake”, a dark start to her first day of crafting a final essay about the merits of Dr. Frankenstein.
a change or the process of change by which an organism or species becomes better suited to its environment
Most of us on earth right now share common experiences of changing landscapes both external and internal. Over the past two decades the entire skyline changed in the smallish city where I grew up. While development spreads cement like an invasive species, bureaucracy often moves more like a sloth, bogged down in habitual “this is the way it’s always been done” and “if it ain’t broke, don’t fix it”. It is broke, though.
Over the past few years, millions rejected the limiting mantra of “no religion, politics, or money”, and more people across our planet than ever before embraced a right to free speech. We became uncomfortable with humans expressing differently from us in massive numbers, while some became unable to control their stored anger. Others became enmeshed in a struggle, while others chose to ignore the changing world and hold fast to the past.
Now we are here, in this place of knowing the center isn’t holding, in this place of void. What do I create for my timeline given what I now know and also what I don’t know?
I am adapting to supply chain challenges with fresh food by growing green beans and herbs (anyone can, SO EASY), and not buying food from across the country in drought spaces. I am adapting to sketchy quality of mass-produced food by upping my game with organic fresh foods and local organic meat. Honestly, I am willing to spend more on groceries right now since most prices are higher than normal, anyway.
I’ve adapted to 24/7 media by using discernment a.k.a. “being picky” about not only who and what is healthy for my mind and soul, but also worth my time, a precious resource. I no longer justify what I do to take care of myself, as it’s kept me alive and on this side of sane. My outlook on health continues to evolve as I develop a holistic approach and utilize what I need from differing systems. Past work experience in medical education made me over-value data, which isn’t a match for my intuition. My intuition tells me I can lower my cholesterol without a pharmaceutical med, but I cannot control Rheumatoid Disease naturally… yet. A healing gut and diverse microbiome is adaptive for my body’s hyper army of pro-inflammatory cytokines. Food as medicine is my reality.
Nothing is more adaptive than my meditation and spiritual practice, which gifts me with heightened intuition and a will to change what needs to be changed so I can be comfortable for a minute.
I am staying open and accepting of changes in resources which may not be convenient, but may also provide a practical way of doing something or a new opportunity to socialize.
Adapting to a constant state of stress the collective is experiencing as war wages, tired and worn-out practices die away and new ventures and ideas require Herculean efforts to launch, books are an escape where we learn compassion, empathy, and what courage and integrity looks like when it feels like the real world is in short supply. Stories are always waiting to be retold, even refashioned.
We seem to be in flux, so I’ll stay as open-minded and flexible as I can be. If there’s one thing I’ve learned-there’s almost always another option. What adaptations have you made that make you happier?
In this esoteric era it’s said time is a construct, an illusion created to help mankind organize our existence, yet it doesn’t feel ephemeral turning 54. These lessons are solid. Looking back, and wandering repeatedly over familiar landscapes, isn’t where my heart lies. I am ready for new adventures outside of the same ol’, new ways of being me, new ways of relating and loving.
I can compartmentalize my life in decades,20’s being the learning years, 30’s being the building years, 40’s being the destructive years, and 50’s being the… the… maybe I will know once I am 60. I’d like to call them my “creative years” for now. I will not limit myself. Since I was diagnosed with rheumatoid arthritis at 40, I’ve been working hard to overcome limitations. Not all, in fact not most, of those efforts helped me feel better physically. RA was like an undertow and the more I fought for control, the more disabled I became. I’ve never been so angry; inside I shook my fist at the world for a few years. There is a space in unrelenting pain which whittles down a person’s focus to only the cause, and a willingness to do almost anything for it to stop. A Rheumatologist is hard to come by, a good Rheumatologist who keeps up on medical advances in the journals is harder. I knew from the beginning I’d have to read and advocate for myself. What I didn’t know is how many factors would work against me. In January of 2018 a virus teamed with my RA for a lung attack. I was 49 and spent 10 days in the hospital.
These first 4 years of my 50’s have been different, almost as if there was a reset. The Universe seems confident I reclaimed my desire to live after it tried to kill me. My new rheumatologist prescribed a different biologic after the lung incident and it’s worked up to now. I had to laugh when I learned I’d have to push the plunger on the syringe, a new challenge for a human who fought off nurses as a child, and just happens to have a tremor. I stopped caring so much about so many different things, and started meditating with a goal of not being afraid of death. 50 made HUGE goals, but this, along with other mind/body energy practices, set me on a peaceful path for the first time in my life. Many things aren’t as hard as I once made them. Embarking on the 5th year of this decade, I am writing fiction about death and the afterlife, about friendship and grief, two themes of my journey thus far. I am ready for new stories now, having released all of the old ones except for the good. I still want to wrangle this beast RA, tie it up like a trussed hog with natural healing and self-love, good nutrition and friendship, writing, reading, and laughter. Can’t hurt to aim for it, to steep myself in the Divinity and richness of my life for the rest of this one. In this moment, it is well and I’m grateful I get to be this old.
While Summer 2020 may be drastically different from summers past, we’re up to creating memorable outdoor fun with our circle of friends and family. As I sit in my office looking out at a cold white sky and maple trees full of new buds, I can envision in my mind’s eye the window open, a soft July breeze lending a voice to hand-sized leaves while birds call and insects hum. Heightened imagination and innovation are a couple of quarantine side-effects that we can put to good use. It’s what we do, so onward with a few ideas that may fertilize your idea garden.
In a recent chat with my cousin, we planned a small family cookout for June, date to be determined. Our plans hinge on multiple factors, and may include new feasting practices, and elbow touches rather than hugs, but oh how sweet it will be to see those faces. Talking and laughing in person again paired with more sunny days is a hope worth having. We also want to spend as many years as possible with our parents and each other. Mortality is on the table whether we acknowledge it, or not, so we may as well make Summer 2020 a standout with a focus on what we DO have.
Kayaks, canoes, tubes, and boats can easily be enjoyed without exposure to a crowd of strangers. We can wave and yell to the strangers, “Any luck? What ‘cha using?” or just a nod and a smile on the river works, too. **Note of Caution**- river levels are especially high after rain and can change a meandering kayak trip into navigating small rapids. Water levels of a specific river or lake can often be found online, too. Here are a few companies that you may be able to schedule classes and tours with to try out kayaking in calm waters: https://stepoutside.org/article/5-excellent-places-for-beginners-to-kayak-in-michigan/
For the past few years we’ve camped at a family-friendly state park next to 2 lakes with wooded trails, and neighbors.. lots and lots of neighbors enjoying the campground’s play areas, courts, and community restrooms and shower houses. Our 2020 campground is our backyard, with the luxury of a private bath and shower. Within 15 minutes’ drive we have several lakes and natural areas for trail walking. And there’s a basketball hoop in the driveway for those games of h-o-r-s-e before it’s warm enough to go swimming. Here are a few innovative hacks for curating your own camping experience: https://www.buzzfeed.com/mallorymcinnis/a-backyard-camping-we-will-go
Hiking/Walking and Picnicking outings also include a chance to create experiences that reflect our individual tastes. For us, an outdoor scavenger hunt could be fun with a simple follow-up picnic of hoagies, nuts, and seasonal fruit. Dozens of scavenger hunt printables and hundreds of picnic recipes can be found online. Location possibilities are plentiful in Michigan with 74 state parks, 1 state forest, and 4 national forests, not to mention hundreds of parks.
Host a family/friends art show, storytelling evening, or craft fair/flea market. Those events on Facebook that we were interested in, but are now cancelled or questionable? Why not a family/friends Maker/Art Fair with created and discovered pieces that stretch our definitions of art, like a miniature ArtPrize 2020, (brilliant ideas for art projects that everyone can manage). Story-telling is perhaps one of the oldest forms of both entertainment and learning. Stories create ease in uncertain times, especially for children, and memories shared strengthen bonds and deepen our roots. I’ve found The Storytelling Loop helpful for crafting children’s tales.
Create a patio and garden that you enjoy. Always wanted flower boxes in your windows or big pots overflowing with blooms on your patio or porch? If you plan on mostly staying close to home this summer, containers’ increased watering needs aren’t a problem. 2020 is my year to create an outdoor oasis. Our grandson already helped assemble a gnome/fairy garden in a rock/succulent bed. Victory gardens, a.k.a. vegetable gardens are an excellent method for reconnecting with our source of nutrition-earth. Families especially can benefit from planting, maintaining, and harvesting fresh produce-from reduced cost, pesticide exposure, and environmental footprints to increased understanding and peace through a creative outlet.
Helping others has never felt so urgent to me, but my usual donations of food and clothing aren’t being accepted. Of course money helps people, and there are plenty of online requests and easy giving opportunities if you’re able. The simplest, yet not the easiest, way to contribute is to consciously be a positive force in your little ecosystem. Encourage others and scroll past angsty political posts. Choose wisely if you want to be informed of world happenings, and remember to enjoy the life and love you have right in front of you, or right around the corner. Make plans. Send cards by snail mail to say, “I care.” Here are some simple tips that contribute to a positive out look.
During the past decade I’ve tried dozens of traditional and alternative treatments for rheumatoid arthritis and fibromyalgia. I’ve appreciated pain complexity and adjusted remedies to fit, backed off harsh medications or added steroids, adjusted my diet almost daily along with activity levels (completing a project may take 5X as long as it used to). Consistency vanished along with my life outside disease management until I joined an online support group, but not JUST any online support group. This group is fiercely devoted to humor (you may get ousted for complaining), support served on the side (in heaping portions, if needed). Not long after joining this group, my focus shifted, and I began laughing again. Sometimes I was in horrid pain and unable to walk, but I felt better after connecting and laughing. Sometimes I provided the laughs, and it felt good, like I contributed something positive! I’d almost forgotten that feeling.
Truly understanding the effects of disability and pain on a person’s self-worth when you are healthy is beyond difficult even if temporarily stricken with an illness because you get better. That’s not a judgement (YAY for healing), but reality as much as I cannot possibly understand what it is like to live in (Insert Least Liked Country) for the rest of my life. I can learn as much as possible about (Insert Least Liked Country), even visit, but without being forced to live there when I don’t want to, it is a topical comprehension. Experience is where empathy grows, and from shared experience friendships are born.
My friends are online mostly, but please don’t pity me or assume I’m lonely/depressed. I have people I can be 100% real with, if not in the group, then on messenger. Around-the-clock support is there when steroids keep me up all night because: 1. I have friends across the world. and 2. I’m never the only one on steroids at any given time.
We have regional meetups, where I get to hug a few of these Warriors in person vs. our usual cyber-hug routine and we laugh for hours, and end with promises to meet again. Whether online, or in the flesh, the founding member in my neck of the woods teases mercilessly, tells great stories, and is a pretty good sport when humor boomerangs on him. Some friends have travelled for hours to meet each other, in my city this summer and in Elkhart, Indiana yesterday. These are not only friends I laugh with, but also friends who pray for me and send me positive energy when I’m very sick or just walking with a limp. They are the friends who invite us for a big spaghetti dinner, and add special details like twinkle lights and grapes hanging from the ceiling and little gifts of jasper. And they are the ones at home watching us online, hopefully getting a little ambient flavor through the screen.
I don’t socialize less because of this group, trust me. If anything, they help keep me fit for decent company.
Firstly, I’m trying on this “mature” label… unsure of the fit… wondering if I can make it sound sassy in context… perhaps during the 6th decade as I tailor it to suit. Secondly and more on topic, I’ve searched for skin care to meet my basic needs since I was 13. While pimples have been elbowed out by fine lines and discoloration, a non harmful skin care routine remained my unicorn for over 36 years. Red, embarrassing, and painful reactions followed my use of many popular skin care lines sold in the U.S. Can you imagine the amount of $$$ I’ve wasted on products that landed in a waste bin after just a few uses? A few years ago I settled on Aveeno Ultra Calming foaming cleanser and moisturizer as the least harmful (yet still stripping), most affordable option, until my skin changed again, perhaps due to autoimmune issues, hormonal issues, age, or a combination of all those things and a couple that haven’t occurred to me. I tried everything from diet to dermatology and found corticosteroid cream the only effective treatment, which is when I began researching products again. I knew I reacted to chemicals and needed more natural ingredients in my skin care, AND I needed my face clean to avoid breakouts, AND I needed to retain and add moisture.
Red and Reactive, Dry Beyond Belief
Our universe finally smiled on my skin care quest in November 2017, and took pity on my worsening irritation and painful skin. I hate trying new skin care products, and once again I was justified.
When I stumbled upon Renee on her YouTube channel Gothamista
during a search for low Ph facial cleansers, I had a raw itchy reaction across my cheeks and forehead that lasted for 2 weeks following use of CeraVe Hydrating Facial Cleanser, which is lauded by 90% of users as the best thing since coconut oil and matcha tea. Renee’s minimalist style and my-sort-of-girlfriend demeanor made me watch a whole eight minute video about pH levels and 2-step cleansing. Add free and engaging skin care education, and I may be a loyal follower. To cross the moat of my cynicism, the products she recommended needed to pass a 30-day trial, but I was willing to take a risk based on reviews across multiple platforms.
I have hypersensitive combination skin, at times with extreme dryness/dehydration, which is dependant on weather and skin care products. Low pH cleansers were the next logical step for me, however as my CeraVe trial proved, ingredients also played a role. 7 is a neutral pH level, or the level of water/tears, and I wanted to trial a cleanser with a pH level of 5-5.5, between weak coffee and normal rainwater. Our skin’s pH is approximately 5 and the goal is not to disrupt our natural moisture production by cleansing with higher pH products. Cleansers and toners with a pH between human blood (7.5 pH) and seawater (8 pH) stripped my skin, which in turn reacted with an overproduction of sebum. It was a perfect skin care nightmare with few low pH products available in stores.
This low pH cleanser changed my skin and made me very happy:
60 Days Using COSRX Cleanser with No Reaction
Toners with humectants played supporting roles
I went with a local seller of natural matcha green tea cleansing cream for 1st step removal of makeup and sebum, but not until I used the COSRX cleanser for more than 30 days because our skin cells turn over every 28 days and I wanted a true trial (I don’t wear makeup 5 days/wk). I also added moisturizing toners, a departure from the drying alcohol-based toners I grew up with and believed were necessary to oust that pesky sebum.
Moisturizing Toners that I pat on my skin with my fingers
I enjoy my skin care routine (finally!) and haven’t reacted to one product recommended by Renee at Gothamista, however I must warn you–skin care can be addicting.
“Don’t cry. Stop crying,” she commanded, as I trapped my sobs and focused on her words. “Don’t cry. You have one heart, one body, one life. YOU have to fight for it. Stop crying.” The Infectious Disease Doctor seemed exasperated with me, as if my tears were drops of weakness that made me sicker. Briefly I thought my illness must seem measly to the towering Serbian blonde. In that moment I felt so small in my hospital bed. It was day 4 and despite innumerable tests, no bacteria had been found despite the appearance of my lungs on x-rays and a CT. “Maybe you aren’t finding anything because RA is doing this to me.” “You have fever and pneumonia, all signs of infection. This is what we are treating with antibiotic, ” she waved her hand at an IV bag hanging from one of the poles next to my bed. An oxygen machine ringed in pale blue gurgled and hissed in my left ear. The night before a child with big eyes stood at my bedside wearing a dress in the same shade. Intuition said I should keep that to myself.
When I created this blog 5 years ago I was 44, and fresh off losing a tough, unfair battle for my health and career. I’d been fighting since I was a kid, for myself and sometimes for those who I thought needed a champion, and I was spent. In hindsight, other people, especially those in power, not only preferred women who didn’t make waves, but rewarded them for not fighting. Maybe if I adopted a quieter, more graceful approach during the 5th decade, life would prove less bruising. In any case, I needed time to heal. What I didn’t know is that my fighting spirit would one day be the difference between life and death.
Lying in that hospital bed a few weeks ago, I feared going “…gently into that good night”, dying of pneumonia as the poet Dylan Thomas did, but after 5 years of curbing my fighting nature I was sorely out of shape. There are dreams I haven’t realized because I laid ambition aside, trips I haven’t taken, and works I haven’t written. Death takes who it can snatch away, especially if one cannot fight. Medical professionals are often champions when we are weak, their educated treatment hitting a bullseye and chasing away mortality. And then, there is luck and those who rage; “… rage against the dying of the light” – Dylan Thomas. One physician listened to my mumbles about rheumatoid arthritis as I was sliding near intubation, the ICU, and a large sucking mudhole next to my bed (According to a study published by the American College of Chest Physicians, every day a patient is delirious brings a 20 percent increased risk of prolonged hospitalization and a 10 percent increased risk of death). Once he consulted with my rheumatology office and hung a high dose bag of steroids, the mudhole disappeared. For me, rage didn’t look like the screaming, swing at the fences anger of my younger years. It looked liked grasping, holding on and repeating my assertion that RA affects the lungs, despite feeling small and weak. A reward for my tenacity is more time to write and dig my toes in the sand. Love is sweeter now, too.
My sixth decade begins in a couple of months, time enough to regain my strength, embrace my true passionate self, and resolve to live as loudly as I want. I understand now that I don’t have time to waste. Death is funny that way.
A Rheumatoid Disease diagnosis leads to a double life. Thanks to new treatments, many of us have hours every day when we appear to participate in life just as you do. There are also private hours spent soaking in Epsom salt baths, taking pain medications, going to doctor’s appointments and physical therapy, meditating, exercising, journaling, supporting one another online, wearing compression gloves and socks, applying cold and hot packs, applying menthol creams and patches, dipping our hands in hot paraffin, napping, taking hot showers, and wearing splints and braces, all to possibly have a few precious hours of normal, or as close to it as we can get. Sometimes it works, and sometimes the disease rules our day and all we can do is rest and take comfort measures. This aspect makes traditional employment challenging for Rheumatoid Disease patients, 60% of which are disabled within 10 years of diagnosis.
Different than Osteo-Arthritis, Rheumatoid Disease is an auto-immune disorder that affects people of all ages, even children. Rheumatoid patients around the world advocate for “Rheumatoid Disease” to replace the term “Rheumatoid Arthritis” due to wide-spread misunderstanding. Rheumatoid disease produces destructive molecules called fibroblasts that attack the protective lining around joints causing inflamed and shredded tendons, cartilage loss, and finally bone erosion. That is the part you may be familiar with, but Rheumatoid Disease also causes:
Costochondritis (painful swelling in the ribs)
Uveitis (painful eye swelling, may cause vision loss)
Pleurisy or interstitial lung disease
Cervical subluxation and myelopathy (compression of the spinal cord)
Atherosclerosis (heart disease), the leading cause of death in RD patients.
Educating health professionals about rheumatoid disease manifestations would facilitate early treatment of co-morbidities and delay disability.
Even when symptoms appear controlled, Rheumatoid Disease marches on and adapts to treatment. RD insidiously erodes cartilage and bone while patients feel perfectly fine, especially during the first 5 years. Recent MRI studies confirm that even in clinical remission, there is inflammation around the joints, indicating a need for life-long treatment. The first RD medication I took stopped working after 4 years. Currently, my rheumatoid antibodies are eleven times the norm after 3 years on an expensive biologic injectable. Our super-immunity develops work-arounds to the medicine. In the near future I will need to add a low-dose chemotherapy drug to suppress my immune response. We will have to try other medications that may or may not slow the disease as my immune system keeps adjusting. There are many RD Warriors who haven’t found a medication that works well enough, or who have run out of options. One friend of mine injects herself every week for a 20% improvement in Lupus and RD symptoms.
Rheumatoid Arthritis drug commercials exaggerate ability benefits and list a litany of risky side effects in a low monotone. Actors appear in full remission without Prednisone moon-faces, but more than half of patients never achieve clinical remission for even a short period, and most medications help to a degree if at all. Don’t get me wrong – I LOVE Enbrel because I can walk, fevers are less frequent, my pain is manageable, and I have little to no bone erosion. While this miracle drug makes my life worth living, it doesn’t make running on a sandy beach or toting around a toddler on my hip possible. More importantly, the medication doesn’t make working full-time possible because the disease is still active and unpredictable. What it does make possible are life-threatening infections, which is why patients whose symptoms are fairly controlled often choose to risk joint erosion. The risk-benefit ratio is tough to navigate, especially with the booming vitamin/supplement industry promising their own brand of remission. Just like wrinkle cream promises, none are entirely accurate.
We need you to help us spread the word. Rheumatoid Arthritis is one of the 6 most debilitating diseases in the world, yet the number of rheumatology research projects funded by the National Institutes of Health dropped by 52% from 2010 to 2014, while the number funded by private foundations fell by 29% over that period, according to data published by the Rheumatology Research Foundation (RRF). A cure is on the horizon with new immuno-therapy breakthroughs, but funding is moving in the wrong direction.