An Expendable Life

This year was destined to be a memorable one with all of our children experiencing major milestones. Two graduations, a wedding and the birth of our first grandchild. Ha-ha, sounds like a movie from last century. 2020 also started with me being sick. January 12th was the day that my life changed dramatically and for the rest of my life. Darn winter cold! Fever, congestion, cough and then the pain in my right jaw. Wow, what a weird symptom. Do I have an ear infection? Can’t eat or chew, and then the pain in my right shoulder started. Deep down in my shoulder radiating out from my neck and migrating to my chest and bicep. I couldn’t use it, and when I forgot and reached for something, the pain was immediate and severe, and yet that was nothing compared to day three. That’s when the pain started in my left hip. It started in the evening and by 2AM was so excruciating that I feared moving even one inch. I was lying there contemplating what I should do. My right arm and left leg didn’t work and if I lost any more limbs, getting me to medical help would be very difficult. My husband was out of town on business and my 18-year-old son was deep asleep. I tried to get out of bed to ask my son to take me to emergency and fell to the floor. My condition at the time would have terrified my son and I couldn’t bear to scare him like that, so I crawled back into bed to try and sleep off what I still thought was some weird flu. The pain in my inner hip got so intense that I pleaded with God to end it or end me. In hindsight, not a great plan, but I’m not immune to faulty thinking.

The next morning brought some relief. I hadn’t slept all night, so I finally got some deep sleep that morning. By the time my husband returned from his trip the pain was mostly diminished but the cold symptoms remained. Our grandchild was due at the end of January, so the family insisted that I go to the doctor to make sure the baby would not be exposed to whatever creeping crud I had. The first thing my doctor did was check for the flu–Negative. X-ray of my shoulder–Nothing. Doctor said I shouldn’t be a threat to my newborn grandchild and gave me some muscle relaxers. 2 weeks later our insurance company dropped our medical group and I was informed that I could no longer see my long-term doctor. At the same time our beautiful grandson was born. Holding him in my arms was absolutely glorious. We were being given very little information about COVID-19 at the time or I would have never gone near him. The intense pain continued to migrate throughout my body so I made an appointment with a new primary care physician who could see me as a new patient in 2+ months. I would endure many nights of crying and pleading with God until my April appointment. Thankfully in that time of upheaval, I was able to see my son married in a beautiful and inspirational ceremony to his soul-mate. At the beginning of the reception the migratory pain started in my right knee but I managed to get one dance in. Incredible pain, yet a truly joyous moment that will forever be a treasured memory. That reception would be the last public event that we would attend since our country started closing down the next day from the global pandemic that was ravaging our major cities.

I really liked my new doctor. She listened, ordered tests and made a commitment to find out what was happening to me. COVID-19 was discussed as a possibility, but there were no tests available at that time and none projected for the near future. We were dependent on blood tests, and two days later, thankfully, answers. Rheumatoid Arthritis. I was so happy to have a diagnosis that it took me a while to understand that this was not run of the mill arthritis and was instead a horrible and non-curable disease that I would have to manage until my death and if I’m lucky it won’t completely immobilize me. The Rheumatologist who usually books out 4 months was available in three weeks since appointments were down because of the pandemic. I liked this new doctor too. By the time I saw her I was having extraordinary pain that shifted locations every three days. Some days I could function and some days I was bedridden. She delivered some scary information, but was patient and explained things to me while still reminding me that this will be a learning process that can sometimes be hit and miss. We would start with the standard care for RA patients which included rising doses of methotrexate (a chemotherapy drug) and large doses of folic acid to treat the nausea and vomiting that comes with the use of methotrexate and to slow hair loss. I am not a vain or even a confident woman, but when the hair loss started and my usually silky hair became so brittle that it broke off and made me look like I stuck my finger in a light socket, it was devastating. I had learned to deal with daily pain and a stiffness that made me feel like I moved like Frankenstein’s bride, but the hair loss, swelling and skin changes added insult to injury. Add nausea and reduced caloric intake that still included medication induced weight gain to the scenario and it became harder to spin the “I’ll be fine” line that I so desperately wanted to believe. This would have been extremely difficult in a normal year, but 2020 has been anything but normal, complicating issues even more.

My two youngest children were not their happy selves. They were a high school and a college senior that both had their final semester of their educations and the celebration of their accomplishments unceremoniously cancelled. They were told they couldn’t be around friends and that all their future plans would be postponed. My own sadness mixed with theirs was quite debilitating. Coming to terms with empty nest syndrome that summer may have been worse, which could only be topped with the agony of not being able to hold my grandson for more than a few minutes. We watched as an international pandemic that was killing people in mass around the world was politicized in the United States and a dangerous national diatribe that said people who died of the pandemic actually died of their pre-existing conditions. That we shouldn’t fear death and instead should embrace it so that we didn’t take away the freedoms of people that didn’t want to wear masks or social distance. I had been informed that my newly diagnosed pre-existing condition could likely be a COVID-19 death sentence. My complete isolation was not a choice. It was foisted on me because of people that clearly didn’t care whether I lived or died. That was a hard pill to swallow. Watching friends, family & neighbors disregard the guidelines for pandemic safety and eradication felt like a spit in the face. Worse, it felt like they were purposely assigning me a death sentence for having a health issue. I know how irrational that sounds and that it is a purely emotional response, but how I feel is not irrelevant. My life should not be forfeit. To watch people that I thought cared for me willingly risk my life and the lives of others sent me into a spiral. The fact that so many of them called themselves followers of Jesus Christ turned my world upside down.

It has now been 6 months since my diagnosis and it’s hard to grapple with my reality. I fall regularly and my latest fall resulted in a dislocated shoulder. The new medication I need has not yet been approved because it costs $50,000 a year in the United States while it would cost $2,400 if I lived anywhere else in the world. The combination of medication, isolation, limited mobility and considerable pain makes me a little bit crazy. Some days, very crazy. I have watched as people lie to me about difficulties rather than add to my stress. I understand, but it’s further isolating. I have had to over-burden family members for help with everyday responsibilities and the guilt that follows makes me cry regularly. Going from rage to sadness to apathy, sometimes multiple times a day is a test for my loved ones and only adds to my guilt and helplessness. I have suffered from fits of depression my whole life, but this is different. I can recognize the hormonal and physiological effects of depression but that isn’t what I’m experiencing. This is a deep and profound sadness coming from constant pain and disappointment at my inability to convince people that my life is not expendable. I have been trying to turn off my own heart, but the hypocrisy of that effort keeps me ensconced in this broken world.