An Autoimmune Steel Magnolia

In my mind, I’m still in my 20’s and living without autoimmune arthritis.  Physically fit, young, full of potential….  Then I look in a mirror.  I see the lines and wrinkles creeping up on my 45 year old face.  I watch the limp as I walk, I see the swelling of my knuckles…. but in my mind, I’m still young and spry.  Weird?  Maybe.  I don’t think it’s living in denial.  I don’t feel 45.  Honestly, I don’t even know what 45 is supposed to feel like.  My body has felt 90 years old since my diagnosis at age 31. So my age-old problem is:  How do I align my physical self with my mental self?  I’m pretty sure it is two-parts stubbornness and one- part stupidity.  Here are some examples:

I’m visting my parents for a week.  They live about 2 hours from me.  My mom is 72 and dad is 79. My mom is still pretty active but has osteoarthritis, but my dad is disabled from degenerative arthritis of the knee, hip, and back in addition to other illnesses.  I hate seeing either of them struggle.  When I arrived here on Friday, my parents were attempting to cut down a rogue sycamore tree in the yard.  I immediately stepped in and took over.  I might have autoimmune arthritis, but I can do this more easily than my dad can with a cane!!  I used electric sheers to shave it down, then a neighbor helped out with clippers to get the base.  It took about an hour to clean it all up.  When I picked up the sheers my mom immediately became upset.  She was afraid it would be too much for me.  I said it wouldn’t be, even though I knew it was going to be hard on me the next day.  And it was….pins and needles in my hands, unable to open bottles of water, cramps in my shoulder, etc.  Even typing this, I have to constantly stop to rest my hands.  In the end, I’d rather feel the pain than see my parents struggle to cut down a tree.  I have a disability but I can still do physical things.  Unfortunately, I pay a big price for it.

When my mom saw how hard things were the next day she got upset with me.  I got the “I told you so” lecture.  What she doesn’t understand is that EVERYTHING chore-wise is too hard on me.  I vacuum and my hands go numb.   I carry the laundry basket up/down the stairs, and I have to lay on the couch.  I do the dishes and I have to ice my hands….  Basically, it never ends.

To be honest, I’m no longer bitter about these things.  It’s been 15 years and now everything is second nature.  I come to expect the pain that comes from daily chores.  I used to be angry and bitter all the time but it only made me feel worse.  That is when I became a patient advocate and speaking out and helping others has helped me learn to deal with my autoimmune life.  It doesn’t mean I don’t get upset or I don’t cry at times over my limitations.  I do, but more often than not, I compartmentalize the difficulties and try to focus on what I still CAN do.  I laugh at the commercials that show people with RA riding bikes, and throwing a frisbee to their labrador on the beach.  A good day for me can be the fact that I was able to reach the top shelf in the supermarket for the box of tampons I want.  Commercial good days and mine can be very different.

There are times when I still need to push myself because I miss my active self who used to like to hike, canoe, and walk a few miles a day.  In the beginning of the summer, a coworker and I did a zip line/tree climb.  Honestly, it turned out to be way more climbing than zipping.  I was sweaty, disgusting, and struggled to use my arms and legs but I completed the first part of the challenge (which took about an hour).  The following two weeks, I struggled with intense shoulder pain, swollen hands, and numbness in my fingers.  Do I regret it?  No.  I was so proud of myself.  Did it suck that I had to suffer for 2 weeks. Yep, but I look at it this way, there may come a time when I can’t do that zip line or climb a tree.  So although it sucks to be in two weeks of intense pain, I’d rather experience that than a lifetime of not living the life I want.  It’s like the famous quote from Steel Magnolias:  “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.” In the autoimmune arthritis world, those 30 minutes can lead to 2 weeks of torture, but in my mind, it’s  worth it.


I am often asked why I don’t ask for more help.  It’s stubbornness and still wanting to do things while I can. It is also because I am very aware that I am losing my ability to do things.  Is it my autoimmune arthritis or is it that I am getting older?  I’m pretty sure it is a combination of both.  Until my mind starts catching up with my body, I’ll still try those zip lines and I’ll still chop down those trees….but if you know anyone who wants to do my dishes, they can give me a call 😉

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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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