The life of pain…

I was speaking to a friend this week about pain.  When you hurt yourself, your pain typically stays in one spot.  You break your leg, you expect your leg to hurt.  When you have a form of autoimmune arthritis, your pain travels….sometimes in pairs.  Pain is like a box of chocolates, you never know what you are going to get when you wake up. Somedays it’s in your ankle, the next day it’s in your hands.  It’s infuriating and unpredictable.

I speak to a lot of people who are in the various stages of living with pain.  People new to autoimmune arthritis diseases always ask, “When will the medication start to work?”  Such a difficult question.  I always joke that I kissed a lot of frogs (medication) until I found my prince (my 5th biologic).  The pain never completely went away for me.  I feel a level of discomfort daily. I’ve learned to control the pain with medication and meditation.  It’s not easy, but this pain has become such a part of me that I feel strange when there is none.

This week I was in a car accident.  I’m not going into details but I can say I’m now experiencing a new kind of torment.  After so many years of living in pain, I expected that I would just handle this new situation (I don’t normally have pain in those areas).  Uh, nope.  This pain is so foreign to me that I don’t know how to manage it.  I am kind of in shock.   Had I become cocky in terms of my ability to handle pain or my ability navigate my way through life with it?  Has pain from RA set me at a level in which I can’t handle anything else?

I’ve always felt like I live my life with pain. The onset of my disease started with pain that was so strong it made me feel sick.  Once I found medication to take the edge off, it settled into a constant ache with moments of sporadic stabbing pain.  The pain originally started in my kness.  Eventually it moved to other parts of my body but my left ankle became my nemisis.  Years later, I broke that ankle.  Snapped both the fibula and the tibia from my foot.  The surgeon repaired everything and told me, “I repaired RA damaged areas because I couldn’t give you a Lamborghini repair over a run down old chevy”.  After 6 months of painful physical therapy, I had a brand new “relatively” pain free ankle….and suddenly RA thumbed its nose at me and moved into my hands for the next 2 years.  It’s not only in my hands, oh no, it strikes most of my joints except my toes, neck and back.  As for that left ankle, it swells like crazy but the pain isn’t as severe as it had been.

The first few days of whiplash literally knocked me off my feet.  I was experiencing pain in unfamiliar spots.  A type of pain with which I am unaccustomed to processing.  I wasn’t able to eat because my jaw hurt and swallowing was difficult even with liquids.  I couldn’t sleep because finding a comfortable position was so difficult.  Daily, I feel the level of pain changing.  I can do things to help reduce its impact but I can’t really force it to go away until it runs its course.   I’m a patient who needs patience and a lot of physical therapy.  It’s really not easy.

Whether it’s pain from autoimmune arthritis, a broken limb, whiplash, or simply stubbing my toe.  Pain is a constant in my life.  It is personal, invasive, and has a life of its own.  I’m unfortunately along for the ride, but I refuse to buckle under the pressure.  I’m dying to stay home from work, but am out of sick time, so it’s not an option.  I’m dying to stay in bed all weekend and sleep away the pain, but that is not an option either.  Although I am not a fan of his, Lance Armstrong summed it up best for me, “Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” I need to find my strength again and face this new painful battle in a more effective way.   Wish me luck.

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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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