Day 3 #RABlog week. My enemy is my friend.

Day 3 Assignment:  Explain your RA.
***  After all these years, I still had a hard time with this topic.  I decided to re-work a previous blog.  So here it goes…

Living with autoimmune diseases is a never ending journey.  I’ve had people tell me that “But you don’t look sick”, and “Do you know that you are limping?”…hmmmm….you really think I didn’t know that I was limping?  Ok…I admit it, sometimes I don’t know…but most often, I do.

Each day is a journey because I never really know how I will be feeling.  Some days I wake up and feel just fine.  Other days, I wonder how I am going to make it through the day.  Simple every day things like pulling on pants, taking a shower, or opening a bottle of water can be almost impossible.  A good day means I can go grocery shopping after work and get items off the high shelf. On great days, I can clean my house.  The lack of control I have over my body is very depressing.

When people ask me about my disease, I tell them I have a systemic autoimmune disease that attacks my joints and connective tissue.  I acknowledge how painful osteoarthritis is, but make it clear that is not what I have.  In addition to swollen joints and pain, my disease feels like the flu, I run fevers, I get rashes, and some of my internal organs have had damage from a combination of RA and the medications  take for it. My disease laughs at OTC drugs like ibuprofen.  I manage 14 prescriptions to keep my body moving.  I inject myself with a biologic drug weekly.  This drug cocktail allows me to have some good days.

This disease can be so depressing.  There was a time when I had way more bad days than good.  I think back and remember that there was a time when I wouldn’t tell people that I felt good.  I always thought that I was letting them down when I suddenly wouldn’t feel good anymore. I would hear “Last time you felt good, what happened?”  So complicated to explain.  Now I say, “Today is a good day” when things are good.  I’m so used to living with pain that I sort of feel lost when I am pain free.  Not that I miss the pain, it’s just that I feel so different without it.  It’s almost like my enemy is my friend…even when I don’t want it to be.

I am honored to be a part of #RABlog week.  Follow the link to read the other amazing blogs included.  http://blog.wegohealth.com/2015/09/21/the-first-annual-rablog-week/

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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.

4 thoughts on “Day 3 #RABlog week. My enemy is my friend.

  1. Lolabellaquin:

    I sometimes tell people nothing is wrong with me. I love to do that as I am using my cane and moving slowly in the grocery store. Those who know me well know I am teasing. Those who are passing acquaintances wonder if I have lost my mind. Oh fun times. 🙂

    rick

    Like

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