Stop telling me I have a choice….

On social media I am a patient advocate and blogger.  In my private/professional life, I am a speech-language pathologist and work in the public school system.  I try to keep my two lives very separate.  I speak of my career in generalities in my blog.  I’m lucky that my health issues don’t stop me from being able to work full-time.  I’ve written about how flu season terrifies me year after year, and how I changed my job from working with elementary aged students to secondary students due to younger kids passing germs a bit more easily than older kids.  I loved working with Kindergarten students, but I was used as a tissue too many times, and always ended up running out of sick time.  I faired better with secondary students.  I still get sick often but I haven’t run out of sick times in the past 5 years.  I made the right move for my health.

Fast-forward to 2020.  We are living in the COVID19 Pandemic.  I was initially excited when I learned that my drug, Kevzara was being studied to see if it helped “desperately ill COVID19 patients”.  It turned out not to be the miracle anyone was hoping for.  According to FiercePharma.com, “80% of patients treated with the 400-milligram dose of Kevzara showed side effects compared with 77% in the standard-of-care control arm. Severe side effects, including multi-organ dysfunction and low blood pressure, were observed in 3% of Kevzara patients.”  I discussed going off this drug with my rheumatologist early on in the pandemic.  In the end, I decided that going off the first drug that has helped me feel “GOOD” in almost 20 years was not an option.  My rheumatologist said that being immunosuppressed can be a risk but that no one knows what can happen because this virus is novel.  She asked me, “Can you manage living in severe pain again?” I COULD probably go back to living in pain….but that isn’t really living, is it?  I choose to remain on my immunosuppressant drug and I am being extremely cautious in the time of COVID.

Photo by Anna Shvets on Pexels.com

Since March 2020, I’ve been to a supermarket 3 times, and only at 6:30 am.  I do go to the pharmacy once a month.  I try to use drive thru stores as much as possible (Yay Swiss Farms!)  I don’t get together with my friends in person, I don’t go shopping, I don’t go out to dinner.  I did take one risk and I flew to Kentucky to pick up my puppy (all planned before the pandemic closure) and I quarantined for two weeks upon my return.  I only socialize with my neighbors because I know they don’t go anywhere, but if they have parties at their house with people I don’t know, I stay home.  I take these precautions not only for myself, but for my elderly parents who are even more high risk than I am.  I need to be able to get to them if needed.  If I am out and about, I may put them in danger.  I refuse to do that.  I don’t like living like this, but I also don’t think of this as a huge sacrifice. It’s an inconvenience that sucks, but I know it could always be worse. I volunteered for a time in a 3rd world county. I know my life here is luxurious in comparison.  I don’t need to go to a store for clothes, when I can order online.  I miss going to the movies, but my couch is pretty comfy.  I zoom with my friends often and stay connected with work colleagues.  I miss being free to do anything I want, but if staying home keeps me safe and keeps my family and friends safe, then I am all in.  I think losing 150,000+ citizens is a damn shame and I believe it’s because people didn’t heed warnings.  Honestly, living with autoimmune diseases for over 20 years has made me realize that I often live like I am in a pandemic already!

Now the summer is ending and the 2020/21 school year is due to start.  My schools will be opening with the hybrid model (1/2 kids go to schools on alternating days two days a week, then have three days of virtual learning).  Why?  Because our schools are not big enough to hold all of our students while maintaining social distancing guidelines that are ordered by the state and county.  My office in one building is maybe 7’x7’.  There is no way for me to socially distance myself with one student, let alone a group of students. My other office has no windows for added ventilation.  I have spoken to my doctors and again, with a novel virus, no one knows what is going to happen. My one doctor recommended I think about taking a leave of absence because schools could be a petri dish for the virus and I could get very sick and/or die.  I looked into it, but I know I wouldn’t be able to afford my bills if I did.  In order to get medications that I need, and be able to pay my mortgage, I have to put myself in potential danger.  I work with teenagers and I highly doubt they will socially distance.  I love my students, but they are kids and often don’t make good choices.  I know parents will give their kids fever reducers in the morning and send them to school, like they always do.  I know my amazing students may pass me the virus.  I know that the drug I take may complicate my chances of recovery.  My friends living with varying types of autoimmune arthritis all survived (thankfully) but now have new lingering health issues with their hearts and lungs.  Some haven’t been able to return to normal after 3 months.  I understand that people don’t comprehend the fears of teachers, but those who don’t work in schools have no idea how many kids come to school sick on a daily basis.

On top of dealing with the stress of a pandemic, the stress of social media has also been getting to me. I know people who believe the pandemic will disappear after the US elections. I know people who believe CDC, WHO, and Bill Gates are all trying to vaccinate us with a chip to do contact tracing. I know people who follow their gut instincts on how to handle the virus instead of listening to medical professionals. I’ve also heard people I know touting “herd immunity” is needed to get this disease under control; however, to achieve herd immunity 200 million US citizens would have to contract the virus. Other diseases like Polio measles, and mumps that used to be common are now rare with the help of a vaccine that helped establish herd immunity. How many more Americans have to die if that was our course of action? Could it be me? A loved one? Honestly, I’m not willing to bank on herd immunity with a constantly evolving and mutating virus. Finally, I know many people who just want follow the advice of scientists and epidemiologists to ride this period of awfulness out to get to the other side in one piece. I am one of those people. I’ve lived with an illness that has no cure for almost 20 years, I know what to do and what not to do to make sure I stay healthy. Unfortunately, that means significantly changing my lifestyle for quite a while. I’m willing to do that. Many of my fellow citizens are not willing to do the same. I normally do not care what people choose to believe, but when people’s beliefs cause a deadly virus to continue to spread, it’s making life more difficult for all of us.

I will be returning to work in person in a few weeks (I’ve worked non-stop throughout the pandemic virtually). I am scared due to my health, but like people who are facing many challenges due to a global pandemic, I have no choice. I wish things could be different, but like essential workers in hospitals, grocery stores, mail/delivery services, I have no choice but to return to work. I’ve read many blogs of teachers who are taking leaves and/or resigning from their jobs. I have no way to support myself if I was to take a FMLA leave (family/medical leave of absense). I would still have medical via FMLA, but would have no money to pay any bills. Resigning and losing my benefits is an option that I can’t afford to take. I saw a recent post that no one is being “forced” to return to work or school and that we have a “choice”. Honestly, none of us have a good choice. We are all being forced to make tough decisions. We either stay home because work is closed or we go to work because it is open. Families have to figure out childcare. So do my teacher colleagues. I’m just grateful I don’t have to focus on making a decision for a child. Personally, I would never send my child to school during a pandemic, but I understand why people will do it. Like me, they can’t afford to not work.

In the beginning of the pandemic I was hearing “people who are high risk should just stay home”, so I did. Now I’m hearing teachers need to get back into the classrooms so we can reopen the economy. This country seemed to go from “All lives matter” to “It doesn’t matter if some people die from COVID19” really fast. I must go back to work. I am still high risk, but am living in a society that is focused on individual liberty, rights, and economy more so than the greater good. Staying home would prevent me from being able to afford the medications and treatments I desperately need to live. So I will risk my health, risk my life, and risk my emotional well-being to go back to work with my masks, hand sanitizer, and plexiglass shields because I have no good alternative choice. So plese stop telling me that I do.

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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.

12 thoughts on “Stop telling me I have a choice….

  1. Kelly, I have never been more glad i no longer work in the school environment. I wish you did not have to go back into it. I know the kids are a joy, and I miss them terribly, I know the teachers can be difficult (I was a Central Office administrator) I will miss them most of all. Most important I know school can be a difficult place yet I miss it more than I could have ever thought.

    I wish I had a good suggestion. I think taking the biologic is important, the suppressant effect is narrow, not broad range, and I hope that things will resolve quickly. I think I would see how things go, and then file a ADA request for modification of the work environment. While it is unlikely you could do all your work remotely, I could see how a school SLP could be isolated in a room and only see kids by appointment. That will not solve the issue, but it would reduce total interactions. In addition, I do not see why you could not take 1-2 days out to do the case write ups at home. Perhaps most difficult would be home visits, but perhaps a temp SLP could do those on a per case basis?

    I had to find a way to assist an SLP for an extensive period in an elementary setting. It was difficult, but we worked things out. Lets hope a way to assist your situation. I know SLP’s are difficult to find so I suspect your district will be happy to keep you in a way that makes sense.

    Many blessings, Rick

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  2. Shielding for t he ‘at risk’ has now ended here. I’m one of those, however I don’t currently have a job. I feel for the people that were so protected one day, and then expected to just go about the world as normal the next. Stay as safe as you can. My thoughts are with us all.

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  3. I retired (due to Fibromyalgia) at the end of the school year 2019; however, many of my friends/collegues are still not sure what is happening come the end of this month. Normally, we would be in our rooms, preparing, all ready. It’s still up in the air as of today (8/3/20). Many have issues that make them or their families more vulnerable. They want desperately to teach like they would normally, but this isn’t going to happen (even if school buildings are open). Being I’m home, I have agreed to “home-school” my granddaughter who is starting kindergarten mainly because the atmosphere in the classroom will not be one that is what it would be. We don’t want her to be turned off to school at this early start.

    *Kelly-I want to support educators in any way that I can. Would it be okay if I share your post to my blog to help in bringing awareness?

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    1. Thanks for commenting Katie. Please
      do share. I honestly think in person school is going to be so sterile that parents will wish to opt out. We can’t even use paper. The whole situation stinks.

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      1. Just found out my district is starting in class… 82% of the parents said their planning to send their children. They’re having their online safety training as I type this.

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  4. I’m so sorry you’re having to deal with this. I’m horrified by what we’re expecting teachers to do in this pandemic. I’m keeping my kids home doing virtual school because we can, and I don’t want to endanger the lives of the adults having to work in person.

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    1. Parents are in a tough predicament. I’m glad you are able to keep your kids home. I worry so much about my students, colleagues, and my own health….but I fear not being able to visit my parents for a long time.

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  5. I’m so sorry you’re in this position. This is the first and only time I’ve been relieved to not be able to teach anymore, it’s an impossible situation. Here they’re sending them back 100% full-time, even though no other places are allowed to have that many people in a building. Classes were already overcrowded and underfunded, how are they supposed to socially distance? As if that’s even possible with kids anyway. Distant hugs to you 😉 Hang in there!

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