My autoimmune disease places me at risk.
Micaela B., 50, Valencia CA.
I was diagnosed with a Thyroid Autoimmune Disease when I was 23. However, certain autoimmune conditions are more compromising than others.
I was however diagnosed with Complex Regional Pain Syndrome in 2013, a “secondary autoimmune chronic pain” disease incited by a spine injury. My particular autoimmune disease is causes when an injury or surgery causes the central nervous system release certain proteins on a cellular level which trick the body into thinking it is being attacked by an outside force, launching a full scale war, however, instead of an enemy, it is attacking and subsequently destroying its own tissues and nervous system. It literally flips it on its head, hot water feels like shards of ice, cold water is scolding to the skin, a slight breeze is so painful it’s as though someone has lit your skin on fire.
CRPS is known by the medical community as one of the top two most painful conditions in the world, mine happens to be in my spine.
Although mine has since gone into remission after a stem cell transplant, as many autoimmune diseases can, anything systemically traumatic can launch it again, so life before Covid was lived fairly similarly to how I live now, during quarantine. Only those moments I was able to enjoy again after years in bed, like picking up our children from school, or going to the store, simply don’t exist right now, as is the same for most everyone. What makes our home different, is that anytime one of us goes out, and returns, we are running the risk of exposure with exponential odds of my contracting Covid, compared to the other members of our family.
CRPS places me at increased risk as it is listed by the CDC as an underlying health condition which is considered at-risk in contracting COVID-19. Like high blood pressure, heart disease, lung disease, cancer, diabetes, a weakened or suppressed immune system, people with chronic illnesses and for those who appear to develop serious illness more often than others.
As a parent, knowing this risk exists, can make me feel guilty due to the pressures it places on them when our older ones go to the grocery store and worry about if they have disinfected properly or worn their mask right. No mother wants to feel they have added additional pressure to their family’s life, especially during an already high-pressured new-reality such as Covid.
Achieving chronic pain support is not as easy for patients as it was prior to Covid. I am ‘fortunate’ in that I must be seen every 30-40 days for a refill on my intrathecal pain pump which operates similar to a gas tank, although filled with a mixture of various medications which drip directly into the opioid receptors in the area effected of my spinal cord. This maintenance is absolutely necessary. But for most suffering from high pain levels on a daily basis, these appointments are virtually non-existent. Pain does not wait for the end of a pandemic, and this is heart-wrenching. It is an entire population of patients assumed as needing non-essential protocols or visits by a large sector and is virtually criminal. I just hope physicians are more sensitive to the needs of this population during this difficult time.
I think Covid has changed not only how I will operate in the world post-Covid, if we are so fortunate to have one, but most of society as well. It seems for the first time we are all mostly on the same page as to how our actions can affect the lives of those around you. I’m hoping a new empathy will continue to evolve, even in how we react when we sneeze by covering our mouth in a store and not just pick up the next product we see without disinfecting our hands. I will certainly be more cognizant of spacing must distance to others when I feel ill or have a cold. I am also hoping others will begin thinking about these things now, and not later. About how they too will approach social interactions. Ironically, the lack of doing so, prior to Covid, could have caused others like myself to fall more seriously ill than the average person. It’s just that now, people are aware that those like us are everywhere. We aren’t any different than you. But where you may have a windshield, ours cracks making it easier for bugs to enter the car. These bugs can compromise our ability to drive, and unfortunately, for some, the results can be far worse. Our body shop can do only so much, but replacing the windshield isn’t really an option.
It’s my wish that everyone approaches Covid with the sensitivities used when on the road, and remember, the moves you make, anytime you make a decision, could very likely, if not literally, affect the life of a stranger, simply by using the passing lane without a blinker.