Worst fear…again….

COVID19 was a big part of my 2020. I’ve documented the death of my dad and uncle due to the virus. Both ended up in the hospital and rehab settings due to falls. That was pre-vaccines.

Over the past two years, I’ve done all that I can to protect not only my immunocompromised self, but also my mother who lives with COPD. I’ve limited my social interactions, became vigilant with mask wearing, and refused to let anyone near my mother who wasn’t vaccinated or masked. For the most part, people respected this request.

Then my mom fell. Over the past 8 weeks, she has worked hard to be able to come back home. The week before she was scheduled to be discharged, there was a COVID outbreak on her rehab floor. I found out while sitting with her coughing all over me (thinking it was her COPD) when they entered to swab her. She tested negative for 3 days, and on the day I was to take her home, she tested positive.

I know my mom is vaccinated and boosted, but her comorbidity of COPD and chronic sinusitis makes it difficult for her to breathe. We opted to keep her in the COVID skilled nursing portion of the nursing home. She isn’t happy, but I felt it was best for her to have 24 hour nursing. If I brought her home, home health may not come because of her positive status. She is where she needs to be right now, even if it is the place where she was infected.

At the end of the day, my heart aches. The nursing team said I can come to visit, but being immunocompromised, it’s not a good idea. I’ve tested negative 3x but am sick as a dog. The week prior to her COVID diagnosis, mom had bacterial pneumonia. I was exposed to that, too and feel that might be what I am dealing with or a serious sinus infection. Regardless, I’m down for the count with body aches, coughing, fever, headache, and awful sinus pressure.

As I scroll through social media, I see people traveling all around the US and Europe. I’m so jealous. They travel and do well. I go out to dinner twice and visit my mom in a nursing home, and I am sick as a dog. Someday, COVID will be a long lost memory, right? Until then, please send positive vibes, prayers, and healing thoughts our way. I refuse to sink into the worry that I feel having a second parent end up COVID positive, but I am definitely on the edge.

Mom and Finni Roux visiting in the Nursing Home.

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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.

8 thoughts on “Worst fear…again….

  1. Kelly, when I read your words I completely relate!! What a beautiful mom you have and I truly hope she feels better soon and can come home to you!!! What a world this is, and it grieves my heart to know your mom tested positive. Btw, I can’t remember but have you heard about the #corsirosenthalbox? It’s a diy Hepa fan to help fight Covid aerosols. Hopefully tomorrow I will build my first one here at home. Lol we will see! Peace to you and your dear mom!!

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  2. Of course your mom should be on the COVID floor, I am glad she is safe and of course I am more glad you are not in the path of the very fast COVID train. I think of you often and wonder how things are going. The other day I applied for ACR day at the capital and wondered if you are also applying. I hope so. If selected I hope to share some good conversation.

    Many blessings I wish you and your mom the very best.

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    1. Mom originally wanted to come home and was upset with me. She needed 24 hour care with her COPD. Now I have pneumonia and am hoping my PCR test comes back COVID negative. I did apply for ACR. Maybe we’ll finally be in the same place at the same time!
      My best to you and Sheryl!

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  3. Oh my gosh, I’m so sorry. I think how much I’ve fretted about my parents (in their 70s, one with lung and heart issues and on immunosuppressants, the other with heart failure), the lengths I’ve gone to in order to keep them safe as we put our lives on hold. It’s nothing compared to what you’ve been through. I remember reading your posts about what happened earlier in the pandemic and my heart ached for you, for your dad and uncle. Now the worry with your mum, especially after having been so careful.

    I agree with you that the area with 24 hour nursing may be the best of not-so-appealing options. Have you had any recent checks for any bacterial or viral infections, after your mum had pneumonia? Given how poorly you’re feeling, more so than usual, I don’t want you to have caught something that doesn’t get treated because you’re dealing with everything else. Please do try to look after yourself too because you’re important.

    The photo of your mum and Finni Roux is adorable. She will be okay. They have Covid treatments now too – can they get her on one of those? She’d be eligible. I can’t understand why those at risk or really unwell with Covid aren’t given as many different treatments to try as possible because most people seem to get zilch. She’s in the best hands, she’s in a better position now with this mutation supposedly leading to less severe infections, and she’s had a bunch of vaccinations. Sending positive thoughts and my very best wishes to your mum. And to you – hang in there 💜🙏 xxxx

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  4. When it rains, it pours… I’m very sorry you’re so poorly and now with pneumonia. You’ve gone through the wringer an unfair amount of times for any one person. I’m glad that you’re mum is doing okay though, that’s a relief. Are you being treated okay? I hope your doc is looking after you. Keep us posted when you can, but no pressure. Sending my very best wishes, to both of you 💜💙💚💛🧡

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