Here in the middle of all the wonderful and horrible ruckus in our universe is Gen X, former latch-key kids who watched Scooby-Doo and played tag regularly. We had 2 technology electives at Creston High during the early ’80s-“Computers” and “Word-Processing”. College was a smart option to leverage your prospects, but there were also plenty of decent-paying jobs for those of us who wanted to move out after graduation. I’ve seen our Casey Kasem-Top 40-mixtape world entirely change during my 51 years. Once in a while I am nostalgic for a John Hughes movie, but the truth is I love my mod cons. Except my Kindle (no page-turning, no smell). I spend most of my time here in the gap between a simpler existence and massive waves of new information to sift and sort. XER is about what I fill the gap with in this middle-child kind of life-travel, food, joy, healthy tips/recipes, nature, good books, and writing.
Scrolling through my mind this week were women who have inspired me, paved the way for me, or just made me a better person by being themselves unapologetically, or sometimes apologetically. The writers, artists, and humanitarians. The scientists, teachers, and leaders. Today though, I remembered dozens that are rarely, if ever, mentioned in listicles. Although these Women came to me last, they are the ones who inspire me most often, the Women who keep me encouraged.
In my day-to-day life I’m grateful for the Woman who taught me how to be a Woman, how to work, and most importantly, how to stand up. Her devotion inspires me on multiple levels.
I’m inspired by Women who fight Autoimmune Diseases such as Lupus, Fibromyalgia, Rheumatoid Disease, Mixed Connective Tissue Disease, Hashimoto’s, Celiac, IBS, Grave’s Disease, AI Hepatitis, and several others. Many of these Women are raising children, keeping a home, working, then working some more. All of these Women are living life on their terms, pushing for better treatments, and pushing themselves every day. I tell myself that if they can do it, then so can I.
I’m inspired by the Moms I know because their well of energy on half the amount of sleep I get is mind-boggling. I have my grandson for one day and I’m whipped, done-in, Netflix ’til I fall asleep the next day. These Moms go from the crack of dawn until they finally put kids to bed, pick up around the house, and get to relax. At which point they fall asleep.
I’m inspired by the working Women I know because it isn’t always easy to meet expectations or to get out of bed when all you want to do is drink Nyquil and snuggle with the dog. These Women show up in every sense of the phrase.
When I look around me, in my community, in my family, I see inspiring and resplendent women everywhere. I see Women doing their best and generously giving to others. International Women’s Day 2018 birthed a thoughtful week filled with admirable Women.
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.
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.
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.
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.
Never shoulda told her. She said nothing bad would happen. Out of all of them, Linny’s Mom is the only one ever asked about the marks on my hands, the only one ever brushed my hair out of my eyes to look at me. She promised I’d be safe if I told her the truth. Instead, I stood up and lowered my jeans right there in Linny’s kitchen and watched their surprise, then horror, as they took in the welts on my thighs. Linny’s Mom cried, “Good Lord!”, and enveloped me in a warm cushy hug that felt just like I’d imagined. I closed my eyes until she let me go and told me to pull up my pants. Linny is so lucky, I thought for the millionth time. My eyes followed her mom as she wiped mascara streaks off her cheeks with both hands, sniffed long and deeply, then picked up her phone. Linny slid off her stool and softly took my hand in hers. She shook a little, like I do when Mama’s boyfriend is in the room. Probably never seen her Mom cry like that. “Yes, this is Mara Kivich at 1335 Lafayette Street. I need to talk to someone about a child who’s being abused’, Linny’s Mom said to who I guessed was the cops. She turned her back to us then mumbled, “Uh-huh… no, bruises and welts from a belt, oh… ok.”
Cops never did anything when they came to our house. Mama always said we were fine, it was just “a yelling match”. Dave was usually gone by the time they got there, slamming out the door like somebody did something to him instead of the other way around. The cops wrote down Mama’s stories in little notebooks they flipped closed with one hand. She had slipped on a wet floor and ran into a cabinet door that hit her right under her eye or stumbled on our steep basement stairs while carrying a laundry basket. The fingerprint bruises on her neck were never asked about or explained and they never asked me anything, either. An officer often said something like, “We want to make sure you’re safe, Mrs. Batch. Please give us a call if you need anything”, or “We’re here to help if you need us”, and gave Mama another of their cards. Upstairs I rehearsed what I would have said if they asked and pressed my face against the window glass until each cruiser turned the corner.
A wide shaft of sunlight fell across the kitchen island and landed on our feet while Linny’s Mom listened to the cops and mumbled a word once in a while. Not for the first time I stared at a Fruit Loops box on top of a giant silver refrigerator with Linny’s drawings, spelling tests, and pictures stuck to the front with magnets shaped like stars. They never ran out of Fruit Loops and there were juice boxes and grapes that Linny could just take from the fridge whenever she wanted. My gaze moved to the Cookie Monster cookie jar on the counter. I wished we were still scooted up to the island dipping our cookie halves in milk after scraping sugary filling off them with our two front teeth. My stomach flipped while a “you ruined it” chant taunted me. I never shoulda told. Linny’s Mom hung up the phone and looked at me, her sagging shoulders and wrinkled forehead said it before she opened her mouth. “They are going to get in touch with your Mom this afternoon, Sweetie. I’m..I’m sure they’ll get this all straightened out.” Linny dropped my hand, and ran to her Mom, who folded her into her arms just as she had done with me ten minutes ago. I felt alone, the same relentless chant circling in my head. “I’m…uh”, I stammered and looked away from Linny and her Mom, “gonna go”. “”You can stay for dinner, Cam”, Linny’s Mom said in a weird high voice, like nothing unusual had happened, like my Mom often sounded. She let go of Linny, but Linny’s eyes stayed closed and her arms remained locked around her Mom’s waist. “That’s ok. I have to ask a day ahead of time”, I reminded her. Her arms circled Linny again as she nodded. “Thank you, Mrs. Kivich. Bye, Linny”, I said and walked quickly down a hallway lined with smiling vacation photos and out the front door. Tears welled in my eyes, but I would not cry.
For a couple of days after a whippin’ the rules were looser, but getting home more than 15 minutes late was chancy, so when Dave called “Cam get in here!” as I came through the door I thought I’d had it. “You almost missed it! Your boy is about to fight for the featherweight title. Come ‘ere.” He patted the couch cushion next to him. I forgot about Linny and her Mom as I watched Conor McGregor hammer another wiry guy on the mat, relentless until the referee pulled him off. “Daaaamn!” Dave threw his arm around my shoulders and squeezed. “You see that, little girl? One punch! Bam! Dude’s on the mat and what does he do? What does he do, Cam?” “He keeps beating on him ‘til he wins!” I yelled and bounced my sore butt off the cushion as the new champ strutted around the octagon, an Irish flag held high between his bloody fists. “Look at me”, Dave said. I pulled my eyes away from the T.V. and tried to look in the black pools of his eyes. My smile faded. “Don’t you ever let anybody think you’re weak, whatever you gotta do. Your dude there,” he pointed toward the screen, “he just showed the world not to fuck with him.” He took a drag off his cigarette, exhaled in my face, and laughed. “You understand?” No, not really. I rarely understood Dave’s wisdom. I understood anger though, and Conor McGregor exploded with fury in the ring. I nodded my head. “Yeah, I get it. No mercy.” Dave smiled and stubbed out his cigarette in a sparkling clean glass ash tray. My mother washed them and sprayed air freshener around every night before going to bed. You’d never even know a smoker lived here.
When Mom came home she didn’t seem any different, just said “Hi, Baby”, but nothing about the cops or Linny’s Mom. Dave left for the bar after we ate goulash and watched the news. Sometimes he came in my room kinda sniffling after he got back and woke me up to say he was sorry. He said if I learned to behave he wouldn’t have to whip me, if I would just be good he wouldn’t have to be so hard on me. I always told him I would be better, and tried to figure out how until I fell back asleep.
Linny wasn’t at the bus stop the next morning, so I sat in our seat by myself and played who-lives-in-that-house. I liked it more when Linny and I went back and forth and made up stories about people in the big white house with peeling paint and pink roses growing up one side or the triangle-shaped yellow house with a huge golden dog stretched out in the driveway. Linny was silly and our stories much funnier than the ones I made up by myself. She walked into class and sat down just as the bell rang, but Linny wouldn’t look at me. I wanted to whisper to her, but Mr. Malcolm did not play around and he’d take away my recess if he heard. All morning long I stared at the back of her head. “Cammie Batch”, the teacher said, “please use “intention” in a sentence”. He seemed irritated. I looked down at my desk and tried to remember what intention meant, but all I could think of was going to Linny’s house for Oreos after school. Mr. Malcolm put his hands finger to finger in a steeple like he did when someone else took a while to answer, like he could wait all day. Normally I was good at this, but today my words disappeared. Finally, the recess bell rang. “Cammie, come to my desk”, Mr. Malcolm said as I watched Linny’s head disappear into the hall with everyone else’s. After Mr. Malcolm reviewed the word intention (it was nothing but a hope, really) and told me to pay better attention that afternoon, I raced down the hall and out the doors. There she was, right outside the building. “Oh good, you waited”, I said. “Cause I have something to tell you”, she said and shuffled her feet, her arms crossed tightly. “I can’t be friends with you anymore. My Daddy and Mommy said so.” She looked relieved.
- 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)
- Kidney disease
- 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.
On Tuesday, the American Cancer Society published new Breast Cancer Screening guidelines reducing the recommended frequency of mammograms for women over 54 to every 2 years and increasing the age for a first mammogram to 45 for women with an average risk of breast cancer. They also kicked the clinical breast exam to the curb. How much can a physician know about my boobs and my “normal” by feeling them once a year? Now me, I can touch them every day if I want, and I certainly see them during my daily ritual. Early diagnosis is key to beating breast cancer and many are triggered by women who notice a change in the look or feel of their boobs. Our breasts feel differently in each decade. Natural changes occur, especially as we bear children and get older. Tiny, swollen, lumpy, I know intimately the phases my boobs passed through to land happily at soft tissue. I know what my skin looks like, where there are stretch marks from pregnancy, and the color of my areola, however I need to use the mirror more often with arms raised. Rashes, dimpling, or swelling also occurs in the breast tissue on our sides, and is more likely to go unnoticed.
The American Cancer Society is careful in its language, stating a woman should have the choice at 40 to request a screening mammogram and become educated on mammography limitations. Women at high risk (20-25% lifetime risk) should begin annual screenings at 30. They recommend breast MRI in conjunction with mammography for women at high risk because the two detect different types of cancer, so if I found a lump or had other breast cancer symptoms such as skin or nipple changes, my plan is to request both. False positives are more likely with breast MRI, but despite the American Cancer Society’s concern about causing me ” a lot of worry and anxiety”, I prefer an unnecessary biopsy with a huge slice of peace of mind to later-stage cancer. And despite a statement that self exams do not show a clear benefit, I trust my judgement on this one and will continue to feel myself up in the mirror on a regular basis because self-love is a beautiful thing and the new guidelines for breast cancer screening are not definitive, but leave the responsibility with me.
*Warning: If discussions about menstruation and lady parts make you queasy, this post is not for you.
Since perimenopause set in eight years ago, I developed penis envy, not so much because I’d like one, but simply to eradicate several unpredictable and exquisitely painful periods per month. Never prepared, no matter how many bloody tidal waves assailed my linens, my pants, my chairs, my life, I was taken off guard. I am unaware of a more irritating interruption than a distinct gushing feeling in the middle of a meeting, especially when you are the one taking minutes. Several times I prayed for a fire alarm. When my red blood cell count fell to a level worthy of a gynecological consult, I felt relieved. Dr. Burns, well into his 8th decade, said I seemed a good candidate for an endometrial ablation as long as fibroids did not lurk in my uterus. Two tiny fibroids, one smack dab in the middle of my uterus and likely the painful trouble-maker, showed on ultrasound. Fortunately, Dr. Burns has practiced for more than 40 years and was competent in more than one ablation procedure. The simplest ablation procedure used a triangular mesh electrode that expanded in the uterus and delivered an electric current which cauterised and destroyed the uterine lining, and if needed, he had a back-up plan that used a roller-ball for the trouble-maker fibroid.
Elective surgery, while not typically as serious, entails risk and pain. Infection is the scariest risk to me, likely due to a 3 month post-surgery infection following a previous gynecological mini-surgery. I did not agree to an endometrial ablation sooner because of it. Fear is a bitch, worthy of a post all its own.
Dr. Burns used the electrically charged mesh with success. Prepping me with information, introductions, consent forms, and anesthesia took longer than the ablation, positively making me comfortable before asking Patrick to hurry up with the anesthesia in the operating theater. Such a simple procedure to require such a dramatic environment, but…the risks.
My recovery nurse enjoyed my eyes-closed rendition of Gin and Juice and said I was her new favorite patient. Apparently, I had my mind on my money. Over the next few days I got to know the pain-killer norco as my uterus healed and I laid about on the couch drinking lots of liquids and eating toast. So this is what it’s like in the 5th decade. We endure procedures, therapy, and surgery to make life doable, and in this case, better than previous decades. Little spots of blood every couple of months are all I have now. Feminine hygiene companies are devastated by the decline in sales.
Gawking at Blarney Castle was a slow process. We arrived at The Spaniard late for lunch with the only other patrons a few men visiting the bartender. From the yelling and laughing I surmised they were good friends.
We sat on the patio in the sunshine enjoying pints and the view from The Spaniard’s lofty location on a curvy road snaking up the Kinsale hillside. Jim had fresh fish and home-cut chips, while I gave in to a Cajun chicken wrap. Complimenting most of our meals was the standard bit of greens tossed in a light vinaigrette.
During our respite at The Spaniard we noticed a good number of vehicles with deep scratches or dents on the passenger side and mirrors torn off, all driven by local folks.
It made us feel more comfortable about the hedge scratches on our rental, which was brand new when we picked her up.
We left The Spaniard refreshed and drove on High Road to Charles Fort, an English 17th century star-shaped fort which once guarded Kinsale Harbor. The walls packed with turf, they were almost impregnable to cannon fire.
During the Williamite wars William of Orange defeated the Catholic King James II at Charles Fort by approaching from the land side and laying siege for 13 days, finally breaching after 3 days of steady cannon fire on a single spot of the outer wall. My most important lesson of the tour was do not ask questions about William of Orange if you want to keep your friends in The Republic.
We wandered the fort after our tour silently taking in the panoramic vistas and the sailboats of Kinsale in the distance. Ireland once again struck us dumb, smiling nostalgically even though we had not left yet.
Back at our hotel we laid our heads down for a mere half hour before Kinsale’s pubs called to us to come play. We found The Sea Captains at The Armada, a duo who played the banjo, acoustic guitar and Irish whistle. We settled on Caesar salads with warm, dense brown bread, and a few pints for dinner. The Armada is one of the few pubs that served us beer at our table, in which case it is entirely appropriate to go against the standard and leave a fat tip. As I listened to The Sea Captains tears began to roll down my face. I was actually at an Irish pub listening to two Irishmen play after visiting Blarney castle, eating well-prepared, flavorful, and fresh food in Ireland, hiking the grounds of a star-shaped fort, and eating the best brown bread I tasted so far. My tears were happiness overflowing and I took a deep breath and told myself “remember this, remember this”.