it’s been a minute…

Hello! Remember me? I used to blog weekly about my life with rheumatoid arthritis, fibromyalgia, Graves Disease, and more recently depression. I took an unexpected break. I decided for the first time in 30 years the I would not work this summer. It’s going to hurt me financially, but my mind and body needed a break. I didn’t realize the the break would also include a break from writing. I genuinely had nothing to say. I worked on planning my dad’s funeral (my family had two funerals this summer due to COVID deaths in the fall). I can honestly say processing through that grief left me feeling empty and drained. My RA is a bit more controlled due to a return to my old medication, but depression is a nasty beast.

How have I coped? I started a low dose of medication and have maintained my therapy sessions. I tried to focus on me while caring for my mom. It’s not easy. I coped by reading escapist novels, making TikToks featuring my dog (please follow us! @finnirouxcavalier), and learning how to let my hair dry curly naturally (hey, I call that a win!). Not very ambitious, but it is all I could manage. I couldn’t write, no matter how I tried. Today was the first time I felt like I had something to say…..so here it goes.

I love the Olympics. I love watching sports competitions no matter how obscure. Water polo, rugby, swimming, gymnastics. I’m utterly amazed by the talent and dedication that goes into being an Olympic athlete. Am I jealous? Probably a bit. I haven’t been able to walk more than a block in the past 3 months due to an horrible RA flare. I switched back to my old medication and slowly feel more in control of this disease. My swelling has decreased tremendously…..so much so, I was able to get my sneakers on my feet again without excruciating pain. Steroids combined with depression and pain has led to a big weight gain and a serious negative body image. I decided to take advantage of the results of my new/old medication and try to get back on track.

This is an accomplishment. I haven’t been able to get closed shoes on my swollen feet in almost 4 months.

I’ve been staying with my mom so I decided to begin walking along the river levee near her home. It’s beautiful and pretty peaceful. It’s also flat and smooth, so no extra stress on my ankles with hills.

Susquehanna River Levee

I haven’t been able to walk consistently since last November when my disease began to spiral. I have days where each step is painful and days where I’m not feeing pain until I’m almost back to my car. Life is like a box of chocolates, so I never know what I am going to get. All I know is that I am going to try to walk each day during the month of August. My app also measures my walking symmetry. On a day when I was limping more, it was high. Today it was down to 4%. I take that as a win.

In addition to walking, I’m going to blog more regularly again. I needed a 2 month brain break, but now it’s time to get back to writing and better physical and mental health.

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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 “it’s been a minute…

  1. Kelly, I have really wanted to start a chronic illness Fitbit group. Maybe call it Chronically Fit, Bit. LOL, I would like to get something going. I hope you are well and that your mom is doing wonderful.

    rick

    Liked by 1 person

  2. I think a little break is a good idea. I hope the financial pressures don’t add to what you’re already dealing with because I’d say a summer without work is the very least you need. I’m so sorry for what you’ve been through, and planning your dad’s funeral… I don’t know what to say, I’m feeling myself start to cry just thinking about it so I can only imagine what it’s been like for you.

    I’m glad you’ve felt you’ve wanted to come back to the blog and write. It’s lovely to hear from you again. It’s great the old meds are a little better, especially to reduce swelling and allow you to get some fresh air and some walking. That’s awesome.

    Sending lots of love your way 💜
    Caz xxxxx

    Liked by 1 person

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