Life With RA: The Early Signs and More, Article #6

LIFE WITH RA SERIES: Article #6

by Lu Sobredo

On good days my invisible disease stays invisible. Invisible that is until others see me with a walking cane. That’s when I get the quizzical look along with the common refrain: “But you look so good.” But it doesn't feel good when pain is a daily companion. There are days when I wish I could turn back the clock. Back to when I felt whole and my pain was incidental.

Traveling in Barcelona With My Walking Cane. ©James Sobredo

Some of us who suffer from a life-changing chronic illness have had to learn a hard lesson. Some life events cannot be undone. Some diseases have no cure. I’ve had to re-imagine my life path and to navigate what feels like an unforgiving health journey. Those of us who resist letting a disease define us, we do so at great cost. I put on a brave face for as long as necessary so as not to upset the landscape in my new normal. At times, I fear that I might lose myself in the process. 

I didn’t know whether to feel flattered, privileged or sad when asked about my illness. Maybe, I feel all of the above. All I know is I want to help  others facing a similar impactful health challenge. Questions seem to come from folks who just received a diagnosis or are confronted with pain that began to adversely affect mobility. This past summer I was asked: what were the early telltale signs, what is the associated pain like, and how do you deal with it? 

I am a Rheumatoid Arthritis (RA) sufferer. RA is an autoimmune disease wherein the immune system is so out of kilter that it can no longer discern between healthy cells and invading bacteria or virus. What happens then is pretty much the body literally attacks itself, in this case, the joints. The attack causes fluid to accumulate in the joints. The result is inflammation. The damage is full or partial loss of mobility, slow destruction of cartilage and bones among others. The impact on the sufferer varies from person to person. What's not commonly known is that RA can impact the skin and eyes, and internal organs such as the lungs, intestines and more. Cause is unknown. Doctors might attribute RA to genetic predisposition/family history, environmental influence and stress. In my case, I point to stress. There is no known cure. 

I’ve grown familiar with treatment options to help minimize the symptoms and slow down damage. If nothing else, at least minimize absolute disruption to one’s daily life. I’ve  lived with this systemic autoimmune disease for 10 years, but I was officially diagnosed only five years ago in 2013. According to the 2017 report by the Center of Disease Control and Prevention (CDC)--1.3 million American adults live with RA. There's a misconception that the disease affects only old people. Not so. It affects people of all ages. Based on Healthline data—more than 1.5 million Americans in the U.S. suffer from RA. (Healthline. Web. September 19, 2018.) About one percent of the world’s population suffers from RA. I understand most of us are women.

This disease betrays me more often than I care to count. When it flares up with a vengeance, I am left breathless and not in a good way. Mostly I am overwhelmed with seething pain, fatigue, brain fog, reduced mobility, and other ugly signs. The flare could happen when temperatures are extreme, but for me the event is not seasonal. At times when functional I tend to push my body with activities. I then pay for it later with severe pain. Other times, the onset of pain is not triggered by any specific event at all. The pain surfaces at will.

My freak-out moments of utter frustration with the disease are now few and far between. When they come along, I let the moments pass without judgment. Some days, that might mean uncontrollable sobbing. Other days, my family might find me sitting still in silence for long periods. It’s an intense attempt to process the anger that creeps in unexpectedly. The anger is mostly directed at the pain, the pain that is totally unmindful of the great disturbance it brings to my already maligned body. Many times I let it happen mostly in my thoughts, and mostly in the privacy of my pain. 

RA pain is an atrocious story to tell over and over. It is unfair to constantly burden caregivers by talking about it. I’ve known too well the distressful health effects of chronic illness on caregivers, having watched my husband care for me especially at the height of the illness, and having been a caregiver myself for my ailing elders decades before.

In Deep Thought About My RA Pain While in Mallorca. ©James Sobredo

So please understand when I sit quietly still, it is not that I am suppressing the truth about my illness, as I am suppressing incessant attempts of the illness to take over my life. As I write this, the pain on the anterior of both knees is doing its best to have me take notice. The subtle shooting pain in my wrists and fingers is chiming in. I steeled the urge to react. Succumbing to the pain only exacerbates the condition. Writing is the delicious distraction that partially masks emergent pain. It works up to a point.

THE DEFINING EARLY SIGNS OF RA

I experienced pain in my left hand and fingers sporadically since 2008. The symptoms remained undiagnosed for five years; not debilitating enough to worry about per my primary care physician. I was told I had the “beginning symptoms of arthritis,” an umbrella term for inflammation of the joints by a doctor not trained in rheumatology. I was told everyone gets it as we get older. I found out later the doctor was referring to Osteoarthritis (OA), far different from Rheumatoid Arthritis. RA is autoimmune while OA is degenerative. If I knew then what I know now, I would have insisted sooner on a referral to a specialist. 

Once a local rheumatologist identified a diagnosis of RA in August 2013, I sought a second opinion. The process of finding another RA specialist took four months, all the while the disease was getting progressively worse. I felt blessed to have found one in a nearby town. The RA specialist I consulted for a second opinion told me: If my symptoms had been diagnosed sooner, damage to my body might have been delayed or avoided. After a battery of lab tests and x-rays, he confirmed the diagnosis in January 2014.

I like to remind folks that there is a blood test that identifies RA markers. Ask your physician for a referral to a specialist. My RA markers were off the charts; x-rays showed damage to bones in my knees and cartilage in my wrists. I tried holistic and non-drug treatment options to interrupt progression of the disease. But the disease had advanced severely that it rendered me immobile and wheelchair-bound for about three years. These days, after five years of consistent drug regimen and physical therapy, the disease activity has tapered off. I still have high hopes to fully transcend the disease. I raise my hopes as high as prayers could reach. The reality: RA is a progressively crippling disease.

When did I realize I was in for a life-changing ride of my life? The symptoms viciously announced themselves while I visited the Philippines in late Winter/early Spring 2013. My husband lectured a number of times at the University of the Philippines in the Diliman Campus in Quezon City, Metro Manila. He was scheduled to spend time in Southeast Asia for his research. I joined my husband for about five weeks. Later, he pretty much backpacked around the world doing research during his sabbatical from university in California, USA. I simply could not join him for the rest of the travels. I insisted he stay with his plans as I navigated the healthcare system when I returned to the U.S. That is a topic for another time and place.

What I remember about the ominous sign of RA: it started with an annoying pain in the right knee. The knee became swollen. I was convinced the condition was exacerbated by excessive walking in hot humid weather. Frequent use of stairs did not help when I stayed in the second story of our ancestral beachfront home in the province; and while in the city I also stayed on the second floor of a family home in Quezon City, Metro Manila. By the time I was ready to fly back to California, I have had a vengeful bout of intestinal distress (diarrhea), swollen right knee, throbbing pain in my hands and wrists. I could barely walk or lift my luggage at the airport, but adrenalin may have helped me manage somehow. My digestive issues were corrected by antibiotics. I wasn’t too worried as surely a visit to my doctor and physical therapist would take care of the rest. So I thought. I was confident that the pain in my leg and in my wrists would resolve in due time. Was I wrong! After four doctors and two physical therapists in four months came the diagnosis of RA. Another four months elapsed before I found a Rheumatologist compatible with my needs— someone caring and skillful. More importantly, someone who did not look at me like a dollar sign. I described this experience in an earlier essay: Travel and Why Not?.

INJECTION FOR THE PAIN

Once or twice a year when anticipating a long distance trip, my Rheumatologist schedules me for an injection to my knees, the joints most severely affected by RA. This injection is just a supplement to a regimen of medications taken orally and by injection on a regular schedule.  

Heading to the Airline Gate at Mallorca to Return to Barcelona. ©James Sobredo

While in Spain this past summer 2018, raw pain in my right knee signaled an RA flare, despite the earlier injection. Two months after returning home from my summer vacation, that nagging pain in my right knee did not subside. No longer able to tolerate the gnawing discomfort, I scheduled for another injection of corticosteroid, the same drug I use as precautionary preparation for any major travel. At first the knee is prepared with a numbing solution xylocaine injected into my joints before the costicosteroid injection kenalog is applied.

On the morning of September 11, 2018, I received my injection. If I had been more superstitious I could have chosen another date not associated with the terrorist attack of New York City's Twin Towers on U.S. soil. The injection was totally uneventful until two hours later when I felt a harrowing pain. The injection was supposed to relieve the excruciating pain in my right knee. The opposite happened. The knee swelled up. Unable to bend the swollen knee now in a new level of agony and stiffness, I felt deflated for hours. You would be deflated, too. Try getting up to reach the bathroom while in writhing pain and tears rolling down one's face. It was exasperating. Pain rating felt like a “15,” higher than a pain scale of “1-10.” I used ice pack all day and all night to calm down the inflammation.

I searched online for potential reason and unusual side effects of the injection that I did not have previously. The closest explanation I came across: I might have fallen into the 5 percent that experienced increased inflammation after the injection. By next morning (within 24 hours), the pain downgraded to a “4.” This incident may be an anomaly but could prove helpful to know there’s that potential. A friendly reminder: When on travel mode and ice pack or ice machine is not accessible, ask for ice from hotel restaurants or front desk. I use resealable plastic bags for the ice. I carry several with me in my hand-carry bag as I noticed restaurants in Spain didn't necessarily have them.

Using a Makeshift Icepack while in Spain. ©James Sobredo

GO ON YOUR ADVENTURE, DO NOT DELAY

I had no clue that I already began to show early signs of RA in 2010  when my family walked portions of the  Camino de Santiago in Spain. I simply accepted that naturally the body took a toll from the challenging hike. Find out about our pilgrimage from this blog post: (Walking the Camino de Santiago: Pilgrimage On My Terms, Parts I & 2).

FamilyArrived in Santiago de Compostela. ©James Sobredo

The walking pilgrimage was both a spiritual quest and an adventure. My husband wrote on his facebook page in 2010 after the Camino: “As I write this in Madrid, I look back on the Camino and feel humbled for having engaged in a long meditation and a break from our modern life.” It was a first visit to Spain for my teenage son and me; a second visit for my husband. The travel had added significance as it is the land of my maternal ancestors: both my grandmother and grandfather’s Tagle  ancestors were purportedly from the Cantabrian Region of Northern Spain. Spain happens to also be an ancestral land for my husband’s maternal side. Connecting with one’s ancestral land was worth what I presumed to be temporal pain. 

I remember vividly that after a few hours of walking the pilgrim's trail, pain ensued like clockwork when we stopped. Even soaking in cold water did not suppress the pain. That summer of hiking and vacationing in Spain was a source of both pain and joy. The thrill of exploring a fascinating country and sheer will to accomplish the goal to walk a partial Camino masked all the discomfort. 

In light of my current RA condition, I realize that I won’t walk the Camino again. These days, I live with pain daily. Each day is different. However, I am one of the lucky ones. I am functional when the disease activity is low and I can travel again after being in a wheelchair for about three years. By the grace of God (the generous Universe) my drug regimen, physical therapy, mindful eating, and a support network (doctors, family and friends) are working hand in hand to sustain me. But I am all too familiar how this new normal can turn on a dime and abruptly disrupt the calm. 

New Year's Eve Party 2015 Without My Wheelchair. ©James Sobredo

Here’s the lesson I share with anyone who care to listen or read my blog: Go on your adventure now. Do not delay. For myself, I have acknowledged that I can’t turn back the clock to the days when pain wasn’t my daily companion. Unless a miracle happens. And I pray that’s not a far-fetch hope. As long as my doctor approves and I have a companion, I travel even in pain. 

©Essay by Lu Sobredo

ALL RIGHTS RESERVED

About the Author 

Lu Sobredo is writer/publisher at Lu Travels Abroad, a blog dedicated to folks whose limitations do not hamper them from traveling. About a year into early retirement came the diagnosis of Rheumatoid Arthritis (RA). Her world collapsed from under her as the disability rendered her nearly-immobile and wheelchair-bound for almost three years. Her family's life changed. Her total life changed, but she did not let RA define her. With much will & love from family, friends and an awesome doctor, she regained some functionality--her new normal. She will have RA all her life. And she now writes about life, health and travel with RA.