Wish me luck…

Living with chronic illness is tough. Living with chronic illness when your elderly parents are struggling medically is also tough. Toss in a pandemic and the stress and anxiety are at an all time high. Then my dad fell and broke his hip and ended up in a rehab hospital. I was lucky enough to still be able to work virtually which is best for my health, and also allowed me to travel to parents to help out. As soon as my dad was admitted to a rehab hospital after falling and breaking his hip, we were told they were no longer accepting 15 minute outside visits. COVID-19 numbers in the area were rising and outside visits were cut off. I was hopeful my dad would be safe. Since this whole pandemic began I have been uber cautious, not only because I am high risk due to my wonky immune system and immunosupressant drugs, but also, I feared that getting sick would prevent me from taking care of my parents if they needed me. My worst fears were realized when I was denied ADA accomodations to remain a virtual employee one week, and then the following week, my dad was rushed to the ER from his rehab hospital and diagnosed with Sepsis, blood clots on his bladder, and COVID-19. It was a double gut punch.

Having a loved one with COVID-19 makes you feel helpless, frightened, angry, desperate and depressed all at the same time. I’m angry that his rehab hospital had an outbreak and he wasn’t safe. I’m angry I couldn’t protect him. Now my mom is alone, scared, and battling her own high risk disease, alone. My dad is literally fighting for his life, alone. I’m two hours away crying over all of our struggles, alone.

Today I had to go to work. I was walking in a hallway when suddenly lunch let out. For the first time in 7 months I was surrounded by people. It was jarring. I don’t often live my life in fear of much, but in that moment all I could think of is “I am high risk, what am I doing here?” I take my health seriously. CDC says people who take immunosupressors need to take extra precautions to be safe. I do not go out. I don’t shop in stores, I don’t go to restaurants. It’s not always easy and it is extremely lonely…..but it is the right thing for my health. People think I am ridiculous for being so cautious, but last year alone I had bronchitis twice and pneumonia once. All because I work with kids and people who come to work sick. When I sat and thought about it, I lost almost 3 months of 2019 to being sick. I forced myself to work because I had no other choice if I wanted to pay my bills. I love my career, my colleagues, and my students….but it might be time to focus on loving myself more. I read the letter my rheumatologist wrote on my behalf and she states: “Kelly has severe rheumatoid arthritis. You may not be aware that she has daily symptoms that make it difficult for her to work because she functions as best as she can without complaint. She is not a complainer. I am often surprised by her joint exam, because she often says she is fine, and she tells me that her joints have been good, but on exam, it is clear that she has inflammation in the  joints, tenderness on palpation, and pain with joint range of motion.” I don’t ever want to be seen as a complainer, so I keep working. I focus so hard on working, that I am barely living some days.

The only leave I can be approved for at this time is an FMLA (Family/Medical Leave Act) in which I could have time off without pay. I’m a single person with a mortgage and bills. My struggle is do I risk losing my home and way of life by taking a leave from work, or do I stop taking my drug and risk losing the mobility that I desperately try to prevent from deteriorating. Either way, I lose. If I had a child, I could take off with partial pay. If lived with someone high risk, I would have more options. As a single high-risk person, I seem to have no options except ones that are bad for my health and well-being. I have serious decisions to make for myself and my family. I’m not sure how I will make this all work, so please wish me luck.

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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.

4 thoughts on “Wish me luck…

  1. I can relate to being a single person with a compromised immune system, and elderly parents. My father had surgery to repair a torn tendon yesterday, and spent the night in the hospital. He has COPD, and heart problems. It is so anxiety provoking and deciding what to do is not straight forward by any means. Sending love and virtual hugs your way. I pray that your father recovers completely.

    Liked by 1 person

  2. I cannot imagine how difficult his will be. I wish I had great advice. Perhaps check the STD policy of the district to see first how he procedures and second how long STD can be excised. STD usually has a much lower threshold for approval. Then look at LTD works. Just because you use one does not guarantee the second one.

    If you think my advice might be helpful please reach out.

    Liked by 1 person

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