One step at a time…

It’s been a hot minute since I’ve posted a blog. There are 15 blogs in my drafts that I just couldn’t finish. I feel like I lost my voice for a bit. I’ve lived in pain for over 20 years. This past year; however, I feel like my disease is out of control. Medication barely works. I’ve found myself needing pain meds for the first time in many years. My joints are always swollen and on fire. My fatigue levels are crippling. Daily tasks like dressing, showering, and cleaning are often impossible or beyond my energy level. Work sucks out every ounce of energy and the rest of my life is spent sleeping and recovering from a 37 hour work week.

I’ve been very open about my struggles over the years, but, I’ve chosen not to document this current portion of my journey. I’m not 100% sure why. Maybe it’s writer’s block or depression, or fatigue, or simply not having anything of substance to say. I used to have a voice in the world of advocacy. I was passionate about patient advocacy and public policy, education about rheumatology diseases, and the patient voice. Over the course of this past year, I’ve sunk into a pretty serious depression that has dulled my desire for most things that I love. I’ve lost the spark and desire to advocate. My blog has gone from being focused on autoimmune arthritis to depression and COVID. Although I needed this medium to express my feelings of grief, loss, and pain over the past year, in the process, I lost my voice and I lost my passion.

My RA has been kicking my butt. It’s disheartening to not be able to do everything I want. A friend posted this meme tonight and I think it is good advice. It’s time to heal physically and mentally and I’m going to take it one step at a time. I hope you continue to join me as I navigate this new journey.

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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.

One thought on “One step at a time…

  1. Ok, Kelly on Friday, February 11 at 12 noon eastern let’s make a pact that we will turn and kick RA off our back. What do you say are you in? Will it work? Not a chance. Will it hurt? Only if we punch too hard.

    Let’s get RA off our as… ahh back day.

    rick

    Like

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