aging

I Am Human

Posted on by K.S. Schultz

Living Disabled in an Ableist Culture

You wouldn’t know to look at me that I am disabled. It was a long, rough, and savings-sucking fight to keep working. I remember my primary doctor at the time telling me, “People get uncomfortable around those in visible pain, so they want to distance themselves”, an explanation for how differently I was treated by colleagues once I couldn’t hide my RA. In my autoimmune support groups, I know this hiding of illness is common, as if we aren’t human beings. The rejection of self is a recipe for depression and worsening physical health. Even college students, who may be afforded accommodations, often hide their disability, or do not accept it as part of their identity. We teach children that disability is something to be overcome. The Arthritis Foundation puts non-average patients who’ve done something impressive, on the covers of their monthly publications. They all say the same-“Don’t give up! Push through! Find a stellar specialist and eat fresh and healthy”, not bad advice, but not acknowledging any fluctuations in disease activity that make them unable to perform. Instead, a low-to-no-symptom snapshot in time of a world-class millionaire golfer is meant to inspire the more than 50 million patients they serve. I translated it as ,”you just aren’t doing everything you can”, although for new patients they provide some common-sense advice and a sense of belonging.

Recently, I read on a Crip Theory thread, “I’m not sure I’m disabled enough to claim that term”. I admit, I’m not comfortable with the term, either, and grew up averting my eyes. This is the ableism inherent in our very genes, that unconsciously tells us we must suffer greatly, and with witnesses, in order to earn flexibility and acceptance. Crip theory applies to queerness, along with disability, the compulsory able-bodiedness an agent of capitalism sharing common features of compulsory heterosexuality. Some scholars are working with Crip theory to create spaces that support the success and wellness of different mind/body types. It isn’t hard to imagine an expansion of this concept, however practical considerations may not always allow for authorities to provide what we need.

Disabled people, and advocates, promote Crip world-making by dismantling beliefs and assumptions about our authenticity and grit, our talents and worthiness. It’s hard to take care of oneself when you feel unsupported, so I suggest starting by giving yourself a bit of flexibility first, like a rotisserie chicken or prepared salad shortcuts , or a week for writing a blog post. Giving myself what I need in terms of rest, meditative time, efforts to find good doctors and bodywork practitioners, fresh meals and gentle exercise, and slack on weeding the garden, it all signals my inner self that I am worth it. Learning to accept oneself after disability is a process. Therapy with the right person may help, as can meditation and energy healing, to release repeatedly the ableist messages racing through our minds every day; they’re just trying to figure out how to get us back in the tribe. That’s not our tribe, anymore. My tribe now is a motley mix of other warriors and spiritual folks, the two overlapping in a predictable way, my own little “crip world”.

We create these expansive spaces by throwing off normative definitions of what we are capable of creating, and showing up as ourselves in all our complexity, as uncomfortable as that sometimes is. One of my absolute best tools is a daily morning meditation practice, my touchstone before I cast off from shore daily in a sea of ableism that I (mostly) let float by me.

Another Birthday, Another Revised Bucket List

Posted on by K.S. Schultz

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.

Art, Life, Uncategorized

Crone Reclamation

Aside | Posted on by K.S. Schultz

Reclamation (noun) : recovery, restoration of use

Maiden. Mother. Crone.

Plant. Harvest. Rest.

Learn. Create. Teach.

What rises, falls, and begins again. By enriching ourselves during times of death, we honor the cyclical nature of life and all contained therein, we dig deep for the bones, the teeth, and pelt crafted into tools of wisdom passed on if there are those willing to receive gifts of a crone. The depth and breadth of scar tissue from every loss, every hurt, differs, each death leaves its mark. We are all scar clan, every one of us with their own story.

Mature Skincare on a Budget

Posted on by K.S. Schultz

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.

Not Today, Death

Posted on by K.S. Schultz

“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.

 

40-Something Silver Linings

Posted on by K.S. Schultz

Recent silver lining searches have been tough, which for me means that it is more important than ever to ferret out positive bits in order to not be overwhelmed by uncontrollable change.  During my latest attempt to shift my attitude toward gratitude it occurred to me that the existence of more clouds equal more silver linings for discovery and focus as this crazy world increases its attempt to spin me off.  Digging through unrealistic cultural expectations and layers of personal emotions I finally unearthed these tidbits:

  • The older I get the better I am at trivia, especially ancient history (1960-1990 trivia).  My daughter has never even heard of the Double-Mint twins.
  • Since I now frequent pubs rather than dance clubs, I no longer have to buy sexy club clothing and can drink a pint in the comfort of jeans and a warm sweater.
  • Sex is better than ever because my husband and I have been together for a long time so we know every erogenous nook and cranny.  For me the most effective aphrodisiac is the intimacy and trust we share.
  • I do not have any credit card debt after learning the lessons of spending tomorrow’s money in my 20’s and 30’s.  I accept that I lack discipline in this area and choose to not tempt fate by adopting a cash-only policy.
  • I am a better cook due to years of culinary missteps.
  • My spiritual life is richer and more satisfying than ever because I do not allow myself to be confused by other’s beliefs, opinions, or hypocritical behaviors.  My relationship with God is as personal and exclusive as my marriage.
  • My pharmacist knows me by name.
  • I travel the well-worn path of foot-to-mouth less frequently and hurt people less often with sarcasm and dry wit.
  • As a remedy for dry hair my stylist advised that I wash my hair less frequently, so I spend less on shampoo washing my hair every other day, which is good because I spend more on lotions.
  • I am not objectified by men often and on those rare occasions that I am, I do not feel an ounce of indignation.
  • My slower pace means I do not sport the bruises so prevalent in my younger years.
  • A cold toilet seat feels heavenly during a hot flash.
  • I get what I need more often because I ask for it.
  • I have no qualms about wearing sweatpants during long car rides, which means my underwear do not become uncomfortably wedged.

They may seem like silly little things to be happy about, but I am willing to take even tiny bits of cheer to offset the inevitable reality of getting older.  Try making your own list and see what a difference it makes in your mood.  It should at least be good for a laugh.

Another day, another doctor

Posted on by K.S. Schultz

As diverse as Christmas cookies and pills, doctors come in all shapes, sizes, and specialties.  Dr. P. is my chocolate chip cookie, my stand-by-your-woman constant family doctor for almost 20 years.  He owns his practice (almost unheard of today), has a common-sense approach, doles out prescription drugs only when essential (downside there), and teaches me about my health because he knows I like to be involved.  Unassuming and humble, Dr. P. tells me that the most important part of his job is knowing what he does not know.  I worked with both fledgling and veteran physicians over the past ten years and can attest that he is rare.  The few that entertain the concept that their knowledge of the universe is incomplete are better doctors.

The fifth decade has graced me with a need for specialized medicine doled out by special doctors who are experts in their fields.  I have admiration and respect for doctors who sacrifice a dozen years or more to learn their craft and sympathize with the bureaucracy which hinders their ability to give quality patient care, but I do wish I could simply go to Dr. P. for everything.  It is difficult to have an exchange or establish rapport with a specialist because he or she does not typically know what they do not know, such as how I feel about risk/benefit analysis.  They do not know, nor believe, that I have never had an illness that presented classically, which would make their diagnosis something I could have done myself with Web MD’s assistance.  Is it a side-effect of getting older to have less faith in doctors now than in my younger years?  Perhaps it is simply a realization that they really are practicing medicine, and on me.  In the age of cost-effective health care, residing outside of the statistical majority is to a patient’s disadvantage.  Popularity contests have never gone well for me and in proper order I seem to have been taking a medication for the past three years that is effective for only 15% of patients.  So the new specialist would like me to use a better medication, a chemotherapy drug that will give me the side effects you think of when you hear “chemotherapy”.  He even gave me a nifty decision-making brochure chocked full of fun statistics and possible life-threatening side effects that increase in likelihood over time.  He involved me in the decision and told me that patients who feel like they have some control over their treatment usually have better outcomes.  I hope he keeps that positive attitude when I deliver my decision in a few weeks.  I need this guy on my side.

In the meantime I’ll tell Dr. P. about it tomorrow when I see him to discuss hormones and this ever-widening spot on my back.  He spends about a half hour with each patient even though he only allows twenty minutes in the schedule.  I have waited for over an hour too many times to count, but it doesn’t irritate me because I always get my turn.  Tomorrow I have his second appointment of the day.  So exciting!

Night sweating the bed

Posted on by K.S. Schultz

Jolting awake in the middle of the night sopping wet and chilled is an uncomfortably shameful situation that I thought was buried in my childhood.  I stopped peeing in the bed when I was six, so what the hell was this all about?  The hormonal changes during the fifth decade often cause flashbacks to my childhood, with night sweats at the top of the retro playlist.  Initially I was confused, not attributing my drenched t-shirts, pillows, and sheets to hot flashes because I was not hot, but wet and cold when I awoke.  The same friend that taught me how to use a
tampon 3 decades ago filled me in on the hot flashes that are termed “night sweats”, and occur when I am asleep.  I would be a bumbling idiot of a woman if not for my girlfriends and my Mom.

I did not make a doctor’s appointment to discuss this new development due to totally illogical embarrassment, perhaps a leftover from my peeing in the bed years.  I felt lucky that I was not “flashing” during the day, a perfect term for turning as red as a tomato and pouring sweat in front of witnesses that do not love you.  You may as well be wearing a sign that says, “Menopause, or close to it.  BEWARE!!!” in flashing
lights.  If I begin to have hot flashes that are anything like night sweats I will need to secure a towel to my belt so as not to leave a trail.  The closest I came to needing a towel was at a national conference where I was speaking.  Anxiety was clearly a trigger, and luckily I could run up to my room to change shirts periodically.  I woke every night that week cursing the luxurious down comforter that had lulled me to sleep.  Those few nights were the only times I woke up on fire because the flashes were prolonged.
When estrogen decreases, the hypothalamus steps up production of norepinephrine, a stress hormone that acts directly on the thermo-regulatory center of the brain.  Studies have shown that internal stress, an individual’s perception of life, and external stress
such as overwork and insufficient sleep, exacerbate hot flashes.

The altering effect of meditative relaxation and physical exercise on brain chemistry becomes more essential the further I journey into the 5th decade.  Between the mindfulness exercises that I learned at Mary Free Bed Pain Center and Belleruth Naparstek’s guided imagery exercises I can boost my DHEA (dehydroepiandrosterone) level and counter the increase of stress hormones.  I have focused on stress reduction techniques because anxiety is my most influential trigger for perimenopause symptoms.  The adrenal glands produce DHEA which can be promoted by “learning to think with your heart.”  It is similar to redirecting a toddler’s focus when they want something they cannot have.  Through practice I have learned to acknowledge what I feel anxious about, whether I have any control over the situation (usually not, hence the anxiety), and then refocus on something good in my life such as my family or a good memory.  It seems to put my life in a more balanced perspective and typically reminds me of what I deem important and what I do not.  One of the rewards of this practice is
witnessing the frustration of someone who is deliberately trying to provoke a stress response; it sort of freaks them out.  But, reduced night sweats and serenity must fall under the “living well” category in the common quote about revenge and are even better payoffs.  Other strategies to alleviate night sweats that have worked for me are: avoiding coffee after Noon, reducing alcohol consumption (drunk = guaranteed night sweats), eating fresh food and protein, and getting eight hours of sleep.  Interestingly, fasting and cleansing programs can weaken your adrenal system, which lowers hormone production.

I have discussed my night sweats and other perimenopause symptoms with my doctor who has offered to test  my hormone levels after I attempt to boost production with lifestyle changes.  He assures me that women today do not have to endure this decade in misery, and that in itself changes negative feelings that are woven into my understanding of hormonal changes during this time of life.  By paying attention (mindfullness) to what I consume and how I think I can lessen the impact of decreasing hormones, but it is comforting to know that my doc has a backup plan.  And comfort is the key.