WAITING OUT THE STORM
By morning the angry wind was reduced to discordant whistles. The sailboat swayed from side to side. Thank goodness the wild rocking was gone. The Bay waters lapping against the docks awkwardly kept pace with the jingling and clanging in the marina. I suspected the sounds came from the halyards, stanchions, forestay and backstay resisting the wind. I had heard my husband speak of these nautical terms. They simply refer to different ropes, steel wires, and lines strategically secured around the sailboat. Halyards, a fancy word for rope that brings up the sails. Stanchions are the steel poles with wires threaded through them that’s like a fence around the sailboat designed to prevent (not guarantee) one from falling off of it. And forestay, the steel lines at the bow (front), and the backstay, the stern (back) of the boat that keep the mast upright. I waited until the rain rested before going outside the comfort of a warm cabin. It was time to see the world outside after the storm. My dear husband helped me safely off the boat. Standing on the pier with my walking cane, I took a long deep breath of the cold air. I don’t like the cold much. Yet, the feeling of being alive took precedence. With outstretched arms, I offered the universe a big hug.
The alarming feeling was less intense, although the growing calm did not take away the pulsating pressure around my head. Two weeks since the visit to the emergency room, the anti-dizzy pills prescribed by the emergency medical staff stay in my purse at all times. They have served me well in the ensuing weeks. Instructed by the emergency staff to minimize sudden movements to lessen the likelihood of another spell of vertigo, I’ve had to forego trips to the gym for my aqua aerobics. Aqua aerobics is one activity in a multi-level exercise strategy that keeps my RA under control. See a recent essay: Life With RA: Exercise Strategy That Works.
Staying away from the gym seemed the responsible thing to do. The symptoms around my head visit me every other day. Or so it seems. The pressure around the crown area has been hard to ignore. Why? The nagging discomfort, that radiates from the top of the head to the right side of the face down my neck and shoulder, has slowly shaken my core. This must be what a migraine headache feels like. Maybe it’s not a migraine at all. At this point, I don’t know for sure.
I made a couple of follow-up calls to the referring physician’s office. Staff assured me that my case is pending review by UC Davis Medical Center’s Neurology Department. Sensing my uneasiness three weeks after they had sent the referral, staff gave me a direct phone number to the Neurology Department. It’s immaterial that I am one of the lucky ones with a robust health insurance coverage in California. I have faced my own share of frustrations when navigating our healthcare system in the U.S. And I have a doctor who cares. Imagine if the doctor was indifferent.
Bureaucracy is not alien to me. I had a 30-plus-year career in the California State Disability Insurance industry. That familiarity did not shield me from encountering unnecessary hoops when transacting for my healthcare needs. I wonder how others manage their own interaction. So many steps. So many forces controlling each step of the healthcare system.
By the third week since the medical referral, I called the Neurology Department. The staff there confirmed that my case is pending review. Since they are not an urgent care unit, the referral process could take 2-4 weeks. And so I wait, optimistic that the fourth week is approaching. My headache and other symptoms are part of my current reality. Therefore, for now I have temporarily accepted the symptoms which are hell bent to disrupt my daily routine.
What’s disturbing during this waiting phase is twofold: the inability to engage in physical exercise like my walks and aqua aerobics; and the resulting stress of not knowing the diagnosis and its severity. Stress is said to push my susceptibility to infection. Already suffering from RA, a chronic illness that compromises my immune system, the last thing I needed was an unknown condition. Unfortunately this period of unease got complicated. I contracted an abscess on my buttock that required me to take antibiotics. I was warned, people with RA are susceptible to infection.
So the concern became threefold. Never mind the pain when sitting up. The need to take antibiotics meant I had to forego major RA medications. Two injections once a week are meant to help reduce inflammation, lower the pain, and slow down damage to my joints affected by RA. But the medications also suppress my immune system. Healing the infection quickly is crucial as infections in RA patients could spread like wildfire throughout my already weakened body. That would be sucky. I was to observe if the antibiotics are taking effect to clear the abscess. Otherwise, a surgeon would have to cut and drain it. Luckily, I didn’t have to see a surgeon for now. But so goes the delicate routine of someone with an invisible systemic autoimmune disease. Granted, I still consider myself blessed. I am alive, adjusting to a different standard of a quality life, and surrounded with love from my husband, family and close friends.
I think often about my compatriots who are RA sufferers or those with an autoimmune illness or are caregivers to one. You are my heroes and heroines. There’s a whole community of us. I am comforted by stories of resilience, compassion and advocacy. Find out more from Eileen Davidson of Chronic Eileen and Jodi Ettenberg of Legal Nomads.
Maintaining a social network is highly recommended for folks with a chronic illness. I am missing friends in my Aqua Aerobics class which I usually join three times a week. Definitely missing the movements in the water for flexibility-building and muscle strengthening. Remorseful at the prospect of losing the muscle mass I regained in the last three years. The inactivity and reduced mobility when at the height of my RA had weakened my muscles and joints. And the path to increased muscle mass and enhanced mobility has been a source of pride. Off the wheelchair onto the use of a walking cane has given me a sense of freedom and independence beyond words. I dread the idea of losing a hard-fought/hard-earned sense of freedom.
|Storm Brewing in Northern California. ©Lu Sobredo|
The tempestuous storm has passed through the San Francisco Bay Area. However, each week brings a forecast of more winter storms. Wading through the storm has been a necessity. Wading through the phase of not knowing why my world spins when dizzy? That has been an art form necessitating a lot of creative distraction, patience, and prayer.
The infection on my buttock did heal with antibiotics. Mentally, I had prepared to stay patient as I waited to hear from the Neurology Department. However, as crazy forces would have it, I ended up getting a toothache within days of ending the use of antibiotics. A toothache is a misnomer, more appropriately the entire right side of my mouth seems to be rebelling. Maybe one tooth is the culprit and all the other teeth around it are going through sympathy pains. Why not? The dentist’s office is closed during the long holiday weekend for Martin Luther King Day. Home remedies including Tylenol capsules have helped mask the pain. And so I wait to see the dentist. I wait to hear about my neurology referral. And I wait, not disparaged by the circumstances dancing around my health.
A HOLDING PATTERN
Imagine being in an airplane on a holding pattern waiting for clearance to land. One hopes that the aircraft had fuel for these circumstances. That happened to our flight from Spain to San Francisco International Airport a few years back. The pilot had to fly the airplane in an oval pattern over the landing area which just happens to be by the San Francisco Bay. My unfamiliarity to what was happening, and the off chance we might land in the water, caused such unease. Unable to totally bate my anxiety, I must have said the rosary in my mind multiple times. After an hour of this, we safely landed.
That experience did not prepare me at all for the the kind of holding pattern of waiting to hear from the Neurology Department. The wait was usually to take around one month, which is much too long for anyone hosting a foreign growth in her brain. Seven weeks to the day of my medical referral, I received a phone message to call back for a consultation-appointment with a neurosurgeon.
Disappointed that it was too late in the day to return the call, I stayed antsy all night. Strong emotions welled up from deep in my gut as I realized I would soon see a specialist. It was a night of sobbing. Anticipation for morning made for a disturbed sleep.
Morning came. There was much incentive to wake up early and make the call before the the phone lines at the Medical Center got too busy. I told myself to take a cleansing breath. I made the call to the Neurosurgery Center.
Emotions were mixed as I called for the appointment. Relieved that my case was reviewed and I would finally see a specialist. Dispirited that the person on the other end of the phone seemed detached and clueless. I could handle “cluelessness.” Lethargy in her voice gave the impression of indifference. And she had such a pretty name, but absent of affect. We got through the process and I have a date to consult with a neurosurgeon. The earliest appointment I could get was in two and a half weeks.
I am not angry. I am not even angry at having to wait, or be subjected to indifference. I bemoan that a staff at the neurosurgery center, a place designated to deal with folks facing a life threatening condition, is lacking human touch.
Did I call too early? Maybe 8:30 in the morning on a Tuesday, office folks are not invigorated yet. Their compassionate gene not yet awake, maybe? After making the appointment, I immediately called my PC physician’s office to let them know. Gloria, the wonderful staff whom I have known for years, has called the Neurology Center almost weekly for an update on my behalf. Unfortunately, she was busy with a patient this day, so I left a message with the receptionist who proceeded to argue with me. I requested the CD of the MRI images taken. She said, “No,” they don’t get those as they don’t have the equipment for reading the CD.
I said, “That’s alright, just have Gloria request it and I’ll pick it up.”
“Oh, no.” She insisted that only the consulting physician can request it from the imaging center. She and I kept our tones polite at least. I was near tears.
I told her to please not argue. I happen to know from experience that their clinic can request the CD. I need to take the CD with me for my appointment. She agreed to talk to Gloria.
Taking deep breaths when I encounter a snag in what should be simple transaction? Thankfully helpful. I surmise that after seven weeks of feeling as if I was on an airplane hovering over a landing field might have turned me listless and intolerant. During this entire time of waiting, I felt such array of pains. Pain from my RA flares. Of course, there was the toothache that won’t quit. It was as infuriating as it sounds. The ugly rebellion in my mouth persisted for almost a week. Some respite from the throbbing pain in my mouth came only after taking extra strength Tylenol every six hours for several days. The pain never really went away. While on Tylenol, the dull pain was ever present. The source of the toothache was unclear. The sharp pain was most pronounced in my right lower molar. A numbing spray I brought home from Spain restrained me from totally losing it. In the end, my dentist sent me to an endodontist for an emergency root canal—a two-step process that spanned over three weeks. And another week’s worth of antibiotics meant I live with the RA flares a little longer.
It was a winter ago that I had pain in the same area in my mouth when hubby and I were visiting the Basque Country in Spain. What happened in 2018? Too lazy on a rainy day to go out of our hotel for fresh bread, I chomped on a day old French bread. This winter in California, I was eating a day old French bread as well, to complement a favorite snack: manchego cheese. And within a couple of hours, a toothache. Warning: Avoid day-old French bread.
|After the CT Scan. ©James Sobredo|
Looking back at the recent weeks when home, I was pretty much walking around in a daze even though my toothache subsided. My son, now a young adult had just returned home from his volunteer work out of the country. My husband’s thought was, our son could help take care of me especially if I’ve had to undergo treatment or neurosurgery.
“How are you doing, Mom?”
My son asked for the third time in a span of 20 minutes as he followed me around from the kitchen through the hallway to my bedroom. As if his doing so would yield a different answer. But the truth invariably would cause discomfort for both of us.
“I have a nagging discomfort on the right side of the head. You know, the side where the mass was found via a CT scan weeks ago.”
That was all I could say. We hugged. He genuinely cared. It was all the reassurance I needed in that moment in time.
Since I was still waiting to consult with a medical specialist to find out what is going on, I could only guess that the unwelcome growth in the frontal part of my brain is pushing against some nerve that’s inevitably shooting numbness to my right temple, right eye, and aiming for my right cheek. The symptoms remain hard to ignore no matter the distraction.
(Stay tuned for details of the pot-hole in my life journey. I am doing my darnedest not to freak out until I hear from the medical expert. Praying for the best. And praying that the Universe will be compassionate to all of us in this New Year. I expect in Part 2 to have seen a neurologist and found out once and for all the diagnosis, severity and treatment for the mass in my front lobe).
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