Keep on Keeping on….

When the pandemic struck, my job became virtual. I started noticing how much better my body felt. Swelling was minimal, pain was present but minimal. I was walking 3 miles a day and feeling on top of the world. I wondered if my multiple jobs and long hours were draining my health. I work in large buildings that require me to walk long distances between rooms. I also work multiple jobs that keep me out of the house 10-12 hours a day. It made sense that the time off would improve my health. It was logical. During the day was able to keep my legs elevated. I would nap during my lunch (only 30 minutes, but it was a recharge). I was losing weight and feeling great about body and my health. I had hope.

Fast forward 6 months. I’m still working virtually (and for that I am grateful)…..but as all things that are confusing about autoimmune diseases, mine is kicking my ass once again. My fingers look like breakfast sausages and my 8 knuckles resemble two large bumps. 6 months ago, I had hope that by decreasing my work schedule, I would improve my quality of life and I would live with less pain. Turns out that isn’t quite the case. My dreams of retiring in a few years, working part-time and traveling the world may not be as pain-free as I had hoped. My disease, for a lack of a better word, sucks. It’s painful, exhausting, frustrating, and it’s permanent. I can do things that can help me feel a bit better, but there is no cure.

I’ve lived with autoimmune diseases for almost 20 years. I’ve listened to people tell me that gluten-free diet, cutting edge medications, exercise, holistic meds, probiotics, supplements, copper bracelets, MSM, salt water, cryogenic therapy, physical therapy, acupuncture, herbal remedies, apple cider vinegar, teas, potions, fasting, elimination diet, etc. will be game changers is fighting my diseases. I know people feel offended or disappointed that I don’t automatically thank them for their miracle, but I’ve literally tried them all with no to minimal success. It’s hard to have hope when your body is slowly destroying itself and you just have to watch it happen. It’s even more difficult to hope that a diet, supplement, or treatment will change my life for good …….and it doesn’t work. It’s not a failure, but it’s definitely salt in a wound that never heals.

Today, I’m feeling sorry for myself and want to crawl into a ball.

Then I’ll realize that I’m lucky to be able to work from home and keep my legs elevated. I won’t have a long commute requiring me to get up at the crack of dawn and I’ll feel guilty for feeling sad.

Tomorrow I’ll post that fake smile on my face, suck up the pain, log in to work, and keep on keeping on.

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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.

5 thoughts on “Keep on Keeping on….

  1. Feeling sorry for yourself? Oh that’s allowed for one afternoon. or two or 360.I felt so alone when I was first home. I hated it. But regardless I do hope you get to feeling better and as Nikki said – this too shall pass.

    Liked by 1 person

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