Certainly uncertain…

A year ago the world shut down. I remember sitting in my little office with two students and my high school intern. I was getting annoyed because the intern kept checking her phone. Suddenly she looks up and says, “My mom said we are closed for two weeks!” You can image the reaction of the two 6th grader working with me. Two seconds later, I got a notice that our governor was shutting the state down for two weeks due to COVID 19. I remember trying to act calm for all the middle school students, but inside my brain was quaking. The day before a colleague who also had rheumatoid arthritis approached me to ask, “What are you going to do? Are you going to work during COVID?” I didn’t think I had a choice. As it ended up, I never had a choice because my immune system and medication that put me at high risk wasn’t enough to be allowed ADA accommodations. I wasn’t eligible because I couldn’t ask to protect myself from the risk of getting sick. I would never be mad at people who did get approved for ADA accommodations, but knowing that those same people went to the gym, went on trips, etc, while I sat in my home, away from my family, does make me upset.

At the end of the day, I protected myself enough that I did not get COVID. I am now vaccinated and I am still fairly religious with social distancing, hand washing, and mask wearing. I have to laugh how 1/2 of our country thinks people like me are sheep. I’m not a sheep, I’m a person trying to hold on to my health during a pandemic that stole two family members, took away my part time job, and changed my life forever. I’ve been documenting what the pandemic took away from me, but now I’m going to highlight some things that I learned from COVID that ended up being positive.

I haven’t been sick with a respiratory infection, sinus infection, or cold in over a year.

Let me write that again….

I haven’t been sick with a respiratory, infection, sinus infection, or cold in over a year.

I work with kids. Kids come to school sick. ALL THE TIME. The past 3 years, I have had serious bouts with pneumonia, bronchitis, and sinus infections that I missed 30 days+ of work all due to community spread illnesses. Yes, that is right. I average 10 sick days a year because I’m constantly exposed to sick kids AND sick colleagues. I can’t tell you how many teachers come in even when sick. Often, it’s because they feel pressure to come in. So many teachers bank their days for maternity, paternity leaves, etc. Others know subs are a shortage and being out isn’t good for kids or colleagues. I can’t bank my days because I don’t get the common cold. I get overwhelmingly sick. This is why my rheumatologist, endocrinologist and general practitioner all wanted me to not go into work during the pandemic. Sadly, I was denied virtual work and couldn’t afford to take a leave of absence without pay. Ironically, if I had kids I could have taken a leave with 50% pay. If I had applied for a leave to restore my mental health, I would have gotten 60% pay. Being chronically ill left me without options. Ironically, if I did take a leave, my replacement would have most likely been virtual…..but whatevs….(Sarcasm is being intended here)

Mask wearing, social distancing, and requiring sick people to stay home has been a HUGE boon for my health. I can stay healthy when I am not around sick people. It’s not completely realistic, but it is good to know that I can maintain a healthy respiratory system. Who would have thought a pandemic from a respiratory infection would show me how to keep my respiratory system safe?! Although I despise them, masks will be a standard in my life for a while.

Some other things that I noticed this year that were not so terrible:

  1. The world learned what it is like to be chronically ill. They learned what it is like to depend on deliveries for every day necessities. They learned that being forced to stay home because you are afraid to get sick is not fun. Tonight my ankles and hips are so bad there was no way I could go into a store. The reality for most people with autoimmune arthritis is that the pandemic didn’t change a lot for people us. It just showed people how we live.
  2. Technology can make life easier and harder in equal parts. I’m so overwhelmed by teaching in person and via zoom at the same time. I read how the public is complaining about teachers, but in all honestly, I’m completely exhausted and overwhelmed, but I’ve learned a lot. Overall, technology made a lot of things accessible to people with & without disabilities. I hope there will be a good balance/continuation of technology bringing accessibility in the future after COVID19 is a long forgotten memory.
  3. It’s amazing what science and medicine can do when money is invested in it. We have vaccines around the world to fight COVID 19. If only we could get more research for arthritis, both autoimmune and osteoarthritis. Imagine what the possibilities could be…..
Swollen and bruised.

…Until that happens, I’ll sit on my couch with bruised feet. Why bruised? My feet swelled so much during the work day and my shoes could only expand so much. Similar bruises on each foot. It’s disheartening, but in many ways familiar in a time when there is still so much uncertainty, I can be certain that my disease is out of control. A positive? Not at all. After a discussion with my rheumatologist, I’ll start a new biologic drug (I think it will be number 10) in a few days. Another drug to help ease my joints and pain. Another drug that will lower my ability to fight respiratory infections during a pandemic. Another chance to fail or succeed. I guess I am use to the uncertainty. Wish me luck.

Posted by

Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

One thought on “Certainly uncertain…

  1. LUCK !!!

    Kelly, I wonder what has occurred with kids who needed internships in order to graduate. Student teaching, your intern, school administrators? To name a few. I had not thought of it until I read your blog. I know in Indiana we can give a teacher a temporary license to cover shortages, but unless there is an extreme shortage those without licenses are just passed over.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s