Thanksgiving is my daughter’s favorite holiday. As a military family, we were rarely able to travel home to spend the day with family, so we recreated our home by inviting other military families and soldiers to share our table. These friends became what we lovingly refer to as our Army family. They are by far the best byproduct of my husband’s 26-year Army career and the number one reason my daughter relishes Thanksgiving.
Thanksgiving looked a little different for us this year. Instead of a table for 25, we enjoyed a prime rib dinner for three. We will enjoy turkey together on another day. As with the rest of the world, our Thanksgiving tradition is just one of many things that has been impacted by COVID. While COVID has been hard on everyone, it comes with extra challenges for my daughter.
For those who may not know my story, my daughter has a rare, chronic, progressive brain disease, moyamoya (MM). It causes narrowing of the arteries in her brain which chokes off necessary blood supply. Symptoms can include strokes, transient ischemic attacks (TIAs), seizures, headaches, tremors, movement disorders, anxiety, depression, cognitive issues and fatigue. In and of itself, her disease does not make her more prone to catch COVID, but it does place her at higher risk for complications. Because she has developed secondary impacts to her adrenal glands and thyroid from her MM, her risk for complication is further magnified. Just prior to the pandemic, she caught the stomach flu and ended up hospitalized for four days.
What has the pandemic looked like for my daughter and many other chronically ill Americans?
Hypervigilance around masking, social distancing and hygiene. Strict protocols and limitations around all in-person interactions including trips to stores, pharmacies and doctor’s offices. She and those who love her have to remain in constant risk evaluation mode. Is X social distancing or are they posting pictures on social media that show otherwise? Does Y advocate for wearing masks or do they bemoan them? Is a trip to the store necessary? Can anyone else go? Are people wearing masks walking into the store? How many people are inside the store? Can I manage my symptoms virtually from home? Do I need to delay my annual MRI/MRA to check for progression? Should I delay testing my cortisol levels? Can we afford the risk of sending my son to school in person?
Increased anxiety around medical supply chain disruptions. As a patient with adrenal insufficiency, she does not produce cortisol, a hormone that is necessary to survive. Without her daily replacement medication, hydrocortisone, her body will eventually go into an adrenal crisis, the number one cause of death in adrenal insufficient patients. Hydrocortisone is used to treat inflammation, autoimmune diseases and other medical conditions in addition to adrenal insufficiency. With the onset of COVID, one supplier stopped producing the medication creating a shortage in the marketplace. This placed her and many other patients in harm’s way while the pharmacies sorted out how to prioritize the medication for those who needed it critically. The realization that her life depended on the ability to get a medication in short supply was sobering.
To complicate matters, as people delayed non-urgent medical appointments, prescription demand slowed. Pharmacies stopped placing daily medication orders. Shippers started reducing staff, and shipments started taking longer to get to pharmacies. Insurance regulations, however, did not change. You are only allowed to fill prescriptions within a certain window of when your prescription ends. Pharmacies will not order before the insurance approves the medication. This has led to multiple instances of gaps between one prescription ending and the refill arriving.
Neurofatigue took on new meaning when it came to having to parent 24/7 without the breaks that in-person school provided. Stepping into the role of teacher’s assistant has escalated the problem. Her exhaustion levels are extreme. Cognitively, it is amplifying memory and processing challenges. Her neurologist decided to prescribe home health care support, but after conferring with her neuroendocrine doctor, became more concerned about the risk of bringing the virus into her home. Ultimately, he has added an additional medication used by patients with MS to combat neurofatigue.
These are just a few of her daily challenges. By far the hardest thing she has had to deal with during this pandemic are her feelings about the people who do not believe COVID presents a problem. Those who deny the need to wear masks; who argue against social distancing measures; who point to 98 percent survivability statistics to justify their views; who argue that a two percent death rate is an acceptable loss, so they can continue to feel normal. It is hard not to see herself in those comments as the sacrificial lamb to another person’s comfort.
I believe in my heart that if people put faces to the numbers, these arguments would die a quick death. I am asking you to please read the virtual booklet below. It was created by two moyamoya patients and their families to raise awareness by sharing patient stories. Each of these individuals is at higher risk for complications. Each of these patients deserves our protection.
Giving up my big Thanksgiving this
year was hard. Wearing a mask sucks. Not being able to visit regularly with
friends and family pisses me off. I am tired of social distancing, but I know it
would be far worse to live with my guilt should a choice I made result in a forever
consequence for someone else.
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