Cry or lie…

The why…

I’ve been going through a lot lately.  Physically, financially, and emotionally.  Life has been a roller coaster without a stop button. I keep thinking about my mom’s favorite quote, “this too, shall pass”….and hope for a better tomorrow.  Lately, tomorrow seems to be a lifetime away as things pile up….but looking for the bright side can be tiring.

This week Selma Blair walked a red carpet with her cane.  As someone who relies on a cane right now,  it was a beautiful moment that touched my heart.  Her diagnosis story/journey resembles mine in many ways.  Getting a diagnosis was a huge blow but also a relief that helped me move forward.  It’s clear that a cane does not define Selma Blair, and neither does her disease.  I have to remember that myself, because I do forget sometimes. I’m currently using a cane as a result of my accident in November. My recovery is slow, my balance is not good, my gait is off, and limping really hurts my right hip.  So I am caning it…and hating it.  My hand is so swollen from using the can that my fingers lock in place about 5 times a day, but my foot and hip feel pretty good.  Two steps forward, one step back, I guess. I know that there are many advocates who don’t like “inspiration porn“, but at a time when I am feeling so self-conscious about using a cane, Selma Blair is my hero.

Walking past a chiropractor’s office, I spied a sign that stated, “Pain is not a lifestyle.” img_8983-1I’ve seen it before and it still pisses me off.  Pain is not my “lifestyle” it is unfortunate and a reality I did not choose.  My “lifestyle” is the way in which I  manage to function with a reality that is filled with intense chronic pain.  My “lifestyle” is how I function with that intense chronic pain while maintaining a job, and relationships with family and friends. So in a sense, the sign is right, pain is not a lifestyle, but chiropractor work has not helped me relieve my pain. Pain meds keep it at a level with which I can function. My disease is not curable and it causes pain. There are medications to help minimize pain and slow down the progression of my disease, but the days of me believing that I will ever be pain-free are long gone.  It’s not a lifestyle….it is a rotten reality.

Why I cry….

I am doing physical therapy twice a week since I got my cast off (from the broken foot and busted toes).  Some days my foot is so swollen from my autoimmune arthritis that it makes the damage to my foot and toes seem minor.  I watch my PT diligently massage my swollen foot and toes with her hands and a stainless steel instrument.  It’s painful, but I know when she is finished that I will walk easier.  There are moments when I literally scream or hit high notes like a Michael Jackson impersonator.  How ironic that I have to feel pain to relieve pain?  I choose this therapy because I know it works for me and I believe I can make my foot and toes heal faster.  My disease may be slowing down the process, but I am slowly getting my gait back.  I’m hopeful that descending stairs will get easier soon.  Physical therapy is very hard, but I am slowly seeing progress.

Why I lie…

I always cringe whenever anyone asks me how I am doing.  I honestly never know how to answers.  Half the time, I do lie and say, “I’m fine” or “I’m hanging in there”.  If I am feeling really lousy I say, “I’m living the dream!”  Why lie?  Because if I admit how I am really feeling, I would break down and cry.  Don’t get me wrong, I truly appreciate the concern of others, it is just a difficult question to answer.  Acknowledging how rotten I feel makes it all too real. I feel like I have to constantly remind myself of things that are good in my life because it is so easy to slip into depression. I feel like I am teetering sometimes.

Why I continue to try…

While trying to find the positive, I got a message from my friend Judy (also an amazing patient advocate with United Adovcacy Australia). She lives in Australia and was able to purchase my book….in Australia.  She didn’t order it from the US, instead she purchased it through and Australian retailer.  My spoonie dog is a global sensation and the book has been sold in 9 countries!  That was a boost when I was feeling pretty low.  I really thought I would sell 5 copies and 4 would be purchased by my parents!  This dog….she drains me emotionally and financially….but she lifts me up when I am down. We are a team for sure.  I’m glad her story is reaching others who also may be dealing with chronic illness. She is my inspiration and I am so proud that she is inpiring others.

My little leprechaun

This face…she lifts me up when I am down and I will forever be grateful that she is mine.

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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.

2 thoughts on “Cry or lie…

  1. Kelly first of all she made me smile this evening so the cool thing is she spread humor to Indiana. Tell her she looks AMAZING !!!!!!!!!!!!!!!!!!!!

    Second I had to go look up who Selma Blair is. Sheryl says I am totally unconnected to the world of who people are in movies and TV. So thanks for the education.

    Now for the rest I might say tomorrow is another day, but I hate platitudes like that. So I will speak a basic truth, we need you, keep trying, we need your humor, honesty and caring. We need you badly. Thank you for what you do !!


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