Oops, I did it again…

In 2019, I finished out my school year, and traveled to visit my dad for father’s day. I was very run down and felt horrible, but attributed it to an autoimmune arthritis flare. I became deathly ill with vomiting/diarrhea and a high fever. I had pneumonia.

Fast forward to my first day of school (with kids) in 2022. It was a miserable day. Rain poured all day long, and I was using my cane because my every joint in my body ached. I wanted to sneak out to my car during lunch to nap, but the heavy rain kept me inside. I left work, picked up the dog from her first day of school (I’m a geek…whatever)

When I got home, my pain level was a 10++ I crawled up my stairs, climbed into bed, and slept fitfully for two hours. I woke with chills. Took my temperature and see this.

Instantly, I think: COVID. I must have covid. I take a swab test and it’s negative. I call off work and take the only medication I have (Aleve) and go to bed after placing an amazon order for meds, food, and supplies.

The following day, I set up a PCR test at a local pharmacy, but was too sick to go. My fever ranged between 101-103 degrees. I did a tele-med appointment. The doctor encouraged me to make an in person appointment. I could only get myself into a local clinic at a pharmacy the following morning at 9:40.

I woke at 8 and fever was 101.8. I took more tylenol. I struggled to get ready and get myself out of the house to arrive 15 minutes ahead of schedule. I struggled to maintain that 6 foot spacing requirement in the tiny CVS Minute-Clinic waiting area. I kept moving further away from a family who’s toddler was being vaccinated (again, positive that I had COVID). Who knew getting vaccines required grandparents to attend? They were obliviously obnoxious. And people wonder why I love my pets more than people, but I digress.

When my turn finally arrives, the lovely nurse Maggie brings me in to the exam room. She does and exam and I ask for both a COVID and Flu test I figured I had to have one or the other. Covid test was first. Easy peasy. As she does the flu swab (which practically touches your brain), I begin to feel faint. I’m seeing spots as she is running my tests. Once I realized that the feeling wasn’t passing, I let Maggie know. She came to me to take my pulsox and BP. The I remember being able to see the Pulsox reading 93. She told me my PB was something like 80/60. Maggie then began listening to my lungs. Each inhale caused a horrific cough. At this point, I’m sweating, coughing, and am seeing spots and just want to be back home in my bed. Maggie gets me to the exam table to lie down. I instantly stop feeling faint, but continue to feel horrific. I kept justifying my situation as: Not eating and fever breaking from Tylenol.

Nurse Maggie felt like I had pneumonia even though she couldn’t hear cracking or rails in my lungs. She wanted me to get to an urgent care for an X-ray but wasn’t comfortable with me driving. I wanted to drive myself. I really did, but I knew it wouldn’t be safe.

An ambulance was called and I was wheeled out of the store and I was taken to the hospital. I sat in the back as my blood pressure readings dropped to 70/40, then 160/110 and decided the ambulance equipment was messed up. They tried to start an IV but were unable to find a vein.

Now, I had a horrible experience at an ER with my mother back in May. In Wilkes-Barre General Hospital, she sat in a hallway unattended and was left on a board for so long that she formed a bed sore. My cousin and I had to advocate for her constantly. She was berated by the nurses and treated like a piece of crap. I reported the staff the following day. It made me hesitant to go the ER alone, but I had no choice.

My experience was 100x better. In less than 30 minutes at Bryn Mawr Hospital, I met my doctor and nurses, had blood work drawn, and a chest x-ray taken. Then I was placed in a lovely room with doors and left with IV fluids and a TV where I watched all things Queen Elizabeth (RIP). Seriously, when I thought back on my mom’s experience, I was angry on her behalf.

An hour later, another nurse came in to say my testing was back. No COVID, FLU or RSV. I was dehydrated and have pneumonia in my right mid lung. They would only release me if my heart enzyme came back good again. It did, and I was released with two antibiotics (taking 1250 mg of antibiotics a day) and told to return if anything got worse. I got home, went to bed and woke up with a 103 fever! That was definitely worse, but I slept through my scheduled tylenol time. I decided to set alarms and if it still spiked that high, I would go to the hospital. So far, I’ve kept it 101 and below.

Now that the fever portion of this illness is under control, I’m dealing with pneumonia. My chest aches from the coughing. It’s so hard to sleep that I have turned off my phone. Once I get to sleep after fitful coughing, I can’t afford to be woken up. Sorry for people who worry when I don’t answer. I can’t worry about others feelings when I have to worry about getting myself better and that requires sleep. Between the fever sweats (which does amazing stuff with my hair!) and fits of coughing, sleep is a precious commodity….but that hair….it’s spectacular!

My recovery is slow, but progressing. What stinks most, is I am due to go to Washington DC for ACR Capitol Hill Event. I’m on the fence if I should attend. I meet with my personal GP on Monday.

I feel like I owe my life to Nurse Maggie from CVS’s Minute Clinic. Her calmness kept me grounded. I need to thank my neighbors for picking me up at the hospital, running my errands, and walking my dog. Finally, thanks to my BFFs for getting me a gift card to bring food in. Every little bit helps and is so very appreciated. This has been a serious rough patch. I know I need help to get through it.

What have I learned after all of this? I feel like hell so often, that I don’t recognize when I am actually very ill. That is a serious problem. I have to reassess a lot of things in my life. Pneumonia sucks. I don’t recommend it.

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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.

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