Not Today, Death

“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.

 

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Owning Disease Shame – One Story

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.

 

5 Things Rheumatoid Disease Patients Wish You Knew

  1. 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.
  1. 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:
    1. Costochondritis (painful swelling in the ribs)
    2. Uveitis (painful eye swelling, may cause vision loss)
    3. Pleurisy or interstitial lung disease
    4. Cervical subluxation and myelopathy (compression of the spinal cord)
    5. Kidney disease
    6. 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.

  1. 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.
  1. 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.
  1. 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.

I May Not Look Handicapped, but I’m Parking Here

Yes, I imagine it is odd seeing me pull into a handicapped space at the grocery store and jump out in my gym clothes, but here in the 5th decade life is absurd and challenging to most of us because that is how life is.  When my rheumatologist wrote a prescription for a handicapped placard he said he rather I spend time shopping and supporting the economy.  Grocery shopping is a 2 and 1/2 hour workout, which is what I primarily wanted the placard for, however I did not consider the impact on my daily allotment of energy.  In auto-immune speak we refer to that allotment as “spoons” per the Spoon Theory and the number of spoons I get per day is unpredictable unless a storm is coming, in which case I know I am screwed.  People with chronic disease use our “spoons” on activities that healthier people take for granted, like showering, blow drying our hair, and dressing, so using a spoon or two to avoid a funny look from a stranger wondering why I am parking in a handicapped spot is plain silly.

Handicapped parking

Despite several turns at occupational therapy, the concept of pacing is difficult to adopt as a lifestyle.  I am not a calm person by nature, however biology forces me to choose what is important enough to spend my spoons on each day.  Forgetting to pace myself means I may use a few of tomorrow’s spoons, like spending tomorrow’s money when I use a credit card except a high-interest bill is due right away.  The 4th decade ambition I possessed is no longer sustainable, yet as my rheumatologist kindly advised, I need to find purpose every day.  If you see me park in a handicapped spot on my daily scavenger hunt for purpose, please consider that I am strategically doling out spoons, or do not consider me at all because you are focusing on your purpose, too.

Disease roulette

It seems that health becomes more of a gamble and the stakes become higher as we age.  I know women who have been dealt breast cancer, cervical cancer, lung cancer, diverticulitis, high blood pressure, high cholesterol, fibromyalgia, bursitis, and a myriad of other diseases that are not easily discarded.  The ball on my disease roulette wheel landed on Rheumatoid Arthritis when I was 40.  That is not to say that the wheel was not given another spin, but unlike actual roulette, I pray that it never stops again.

The strategies to play through health conditions vary from all out battle to acceptance depending on the ante.  Never a patient person, my go-to strategy was battle.  I learned everything I could about rheumatoid arthritis with a primary focus on treatments because I was determined to beat my disease.  When I suffered flare ups and could not function as my alter ego Wonder Woman, I felt betrayed by my body.  Many of us enjoy control.  I was addicted to it.  My performance and discipline had reaped me generous winnings, making it extremely difficult to change my strategy.   Losses continued to chip away at my bank of self-esteem until I accepted that rheumatoid arthritis is not my enemy, nor does it define me.  RA is part of who I am and I am valuable, although I need another alter ego/mascot.

Winners know that the table changes when a new player arrives.  Many women must learn to play a new hand of nutrition, exercise, meditation, chemotherapy and radiation, risky pharmaceutical remedies, or riskier alternative methods with the arrival of a
life-altering disease and/or chronic condition.  I was fortunate that my rheumatologist prescribed a pain management program at Mary Free Bed Pain Center where I learned to optimize my play with the help of an occupational therapist, a physical therapist, a physician, and a psychologist.  I went there feeling broken, damaged and not in control.  During my therapy I learned coping mechanisms and body mechanics that I use to feel as good as I possibly can, thereby giving me back some of the control I crave.   I went all in by requesting help both at work and at home and by redefining life’s boundaries within what is conducive to managing my RA well.  The kindness I showed myself has put winnings back in my self-esteem bank, although the play is at an intermediate level now and my losses seem greater if I fall into my old habits.  If or when the disease roulette wheel stops again, I will adjust my play in order to live my most valuable life.  My wish for anyone reading this is that you find a winning strategy for whichever health condition the wheel stops on for you.