I felt a bit out of control yesterday,as if threatened, while in actuality I sat in the cool comfort of my suburban home, the only threat being the heat index outdoors. Disclaimer – I am an empath, ’nuff said. While I don’t subscribe to network TV, I admit I am a social media addict. I write, and human contact isn’t an everyday occurrence, and this works well for me. But after yesterday, I may just become a hermit.
Most of us are familiar with Pavlov’s dog and the conditioned response. For those who are not, the short version goes: a dog will associate a neutral stimulus with food until that stimulus is always present at the time of feeding (like the can opener, or the crinkle of a bag). At that point, the can opener becomes a conditioned stimulus. Pavlov proved the concept of conditioned response by making his dog salivate every time he rang a bell (the dog believed it would be fed).
Over the past two years, Donald Trump tweeted a ton, and every tweet received press. In the summer of 2015, in large part due to his provocative tweets, Trump received ten times the press of Hillary Clinton, and more than 20 times the press of his closest primary rival. No press is bad press, and in this case, the press and comedians helped elect President Trump through increased exposure, which has the effect of normalizing an idea.
Not only Americans, but people the world over lap up the President’s tweets like southern gravy and take to social media to either support or fight against what he said, dipping our psyches in conflict day after day, month after month. So many of these conflicts are values-based, with no hope of changing anyone’s mind, yet we try anyway because core values are vital. The conflicts escalate because conflict hijacks the amygdala while the prefrontal cortex shuts down along with our ability to consider other perspectives. Until scientists can prove the effects of prolonged exposure to Donald Trump’s tweets and the ensuing conflict, I am jumping off the tweet train because I hate feeling manipulated and now that my brain is working properly I can see the President’s tweets about football players and the NFL for what they are – a fun game for one of the most powerful men on earth.
I began this post several times, always with a goal of seeking your understanding. Feelings as words fall flat, so I will simply relay the story of when I started to sense that I was responsible for a disease diagnosis and could somehow control it, and will end with a recent encounter supporting that illusion.
I managed rheumatoid arthritis along with working full-time due to an open-minded and kindly opportunistic Residency Program Director, the only person at work I revealed a rheumatoid arthritis diagnosis to, at first. During those first two years of RA, I excelled by working from home when I flared, sometimes as often as a couple of days a week during winter. I spoke at national conferences, was elected to the board of a professional organization, and enjoyed the respect of my peers. While I needed more rest, and at times the evening commute tortured my hands, I studied during off time and became one of the first in my field to earn a certification. Biannual 360-degree reviews resulted in praise, pay increases, and even a bonus for the certification. It would be remiss of me not to mention my diligent Chief Residents who made life easier, most of the time. As challenging as it was, I had RA handled.
Then a new Program Director came on the scene, a new boss with a multitude of “better” ideas. Within a month The Idea Guy notified Human Resources that I was ill. He also sought big immediate changes during recruitment season, the busiest time of the year for competing medical residencies. For 10 years I worked overtime during recruitment. My new boss needed me on site by 7:30a until at least 5p, yet I often stayed past 6p. The RA flared and I started to limp and type painfully when I finally submitted a reasonable accommodation request under the Americans with Disabilities Act. I mistakenly thought my past success validated my ability to perform; it was logical from my perch. After my Rheumatologist’s recommendation and 2 months of diving into my medical records Human Resources determined that being on site was a job requirement, no work from home would be allowed forthwith. All Residency Coordinators received new job descriptions requiring our signatures. Within 8 weeks of the new Program Director’s arrival I was feverish with swollen joints and deep body aches I hadn’t felt before. I tried harder as my new boss became more and more unhappy with my primary focus on recruitment. He sought my apt attention for a minimum of 2 hours per day as he spoke and my task list grew. Hiding my pain and frustration became impossible. My Rheumatologist completed FMLA paperwork for intermittent leave and I asked if I could work at home on those days I could not make it in to the office for a full day. Human Resources denied my request and began asking for re-certification of the FMLA paperwork every 30 days in spite of the physician’s certification that my disease was permanent. It is allowable under the law and cost me $25 every month.
All of this happened between August 1 and December 10, the date I was diagnosed with Fibromyalgia. I unabashedly wailed, “I CAN’T BE DISABLED!”. Those few moments are indelibly etched on my heart and mind, both my hopelessness and the doctor’s compassion are a part of me now. This was where my tenacity had landed me, with a prescription for an 11-week rehabilitation program and another for just a few Xanax to get me past the truth. The story continues with a few months of me righteously (and pathetically) sacrificing my health trying to regain what I had lost.
You may think I am being vengeful 5 years later when I finally got up the gumption to reveal their behavior, but that’s not it. For purely selfish reasons and storage space I forgave a while back, but those days left behind a slime of shame that is reinforced with big and small hurts regularly. The way to rid myself of shame is to own it, so here it is. I cannot fully control Rheumatoid Arthritis or Fibromyaglia no matter how hard I try.
Waiting in the dentist’s chair last week I heard a conversation across the hall, the two women’s loud voices as clear as if they were in the room with me. They began with a tirade against welfare, “except for those who really need it, of course”. Then I heard, “But you know where they could really save some money? If they actually looked deeper into these people collecting disability benefits. At least half of them are faking and just sitting on their butts while we foot the bill.” The other woman responded, “Yeah, I know. They’re just lazy and don’t want to work. I started working at 16…”. I tuned out at that point.
Walking into Lake Huron I purposefully pick my way around the most jagged rocks, their points sticking up like teeth, and sometimes I step on a few of the larger non-slimy stones, but the tiny unseen bits of shale are the sharpest and most painful.
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.
Here in the 5th decade health gets real. This is typically the decade when our bodies cry out for more attention and we listen because we want to stay for the whole party. Vitamin and herbal supplements advertise benefits especially attractive to people seeking good health, better memory, more energy, and heightened immunity. In 2015, U.S. consumers will spend 21 billion on vitamin and herbal supplements with no proof of positive benefits. Not that there is shortage of research; there is plenty. Once manufactured and put on the shelf, the FDA monitors herbal supplements for consistency, quality, and unsafe ingredients. However, recent investigations of supplements sold by GNC, Target, Walgreens, and Walmart were found to include very little to none of the herbal listed on the bottle. Each brand of herbal supplement is a unique cocktail, each company with their own recipe of leaves or roots or both. These manufacturers are like the kid that passed off oregano as marijuana in high school. Some people swore they got a buzz, and some people experience benefits from supplements that claim to get rid of a virus faster, lift depression, or help memory. Lemon water, a long walk in the sunshine, and brain teasers may be just as helpful, but not nearly as quick. Still others experience how ginkgo biloba lowers sugar levels or how ginseng causes anxiety or headaches. Working with emergency room staff I learned how important it is for physicians to know all the supplements a patient takes due to drug interactions. Often supplements have unintended effects when they interact with a prescription drug. If you take a blood thinner, taking ginkgo biloba or vitamin E can make your blood too thin. I have a hyper immunity which attacks the synovial tissue around my joints and causes inflammation throughout my body including my organs and brain. Echinacea, Vitamin C, and other supplements that strengthen immunity promote my disease and work against the prescription medicine I take. I prefer gaining benefits from anti-inflammatory herbs, like turmeric or cayenne, by adding these spices to recipes. Doctors recommend getting our vitamins and minerals through good dietary habits, which again, is more time-consuming than swallowing a pill or three. Preparing food is mindful self-care. Many of us claim organic food is “too expensive”, but if we add the cost of protein supplements to that of herbals and vitamins, Americans spend more on supplements than on organic food.
Recent research indicates no benefits for adults taking multivitamins, citing they may actually shorten our lives. So why does the mega vitamin and herbal supplement industry thrive? I think it takes time to accept new information that argues with long-held beliefs. Cigarettes and cocaine were once thought to be advantageous to our health, in large part due to expert advertising. In Shape and Men’s Health magazines supplement ads cuddle up to healthy recipes and ab exercise programs. Seniors taking Centrum Silver multivitamin are fit and ride bikes with their active friends. Vitamins are the fountain of youth, which may be why we don’t want to let them go.
Two studies published last month in the British Medical Journal found no evidence that calcium supplements improve health or decrease bone fractures. This is huge news for every woman who believes taking a combination of calcium and vitamin D helps slow bone loss after menopause. Sadly, increased calcium in our diets does not make any measurable difference in bone density, either. The National Osteoporosis Foundation recommends exercise for building and maintaining bone density and preventing falls resulting in fractures. Exercise is also a prescription for better sleep, improved creativity, depression, and anxiety.
Aging healthfully is an evolving science, yet a consistent practice of exercise and good nutrition is guaranteed to keep us at the party as long as possible.