Day 4: #RABlog week topic: Give me 5!

Five things I’ve learned since having RA:

1.  It can always be worse.  When my disease onset, I was really, really sick.  Slowly, I improved with the right medication.  It took a long time.  I have a crappy disease, but I am at a point where I know I am better than before.  I do some work as a patient advocate and I get to meet a lot of other patients living with #rheum diseases.  I know I am pretty lucky and I’m grateful for that.

2.  I’m stronger than I realized:  I often think that people view me as being weak because I am sick.  A person I know recently sprained her ankle. It was obviously painful.  She stayed home from work and rested for days.  She remembers that I told her how at times, I feel like my ankle is sprained.  When she came back to work she made a point to tell me she thought of me and wondered how I get through the day because there was no way she could work in such pain.  When you live in pain, you have no choice but to deal with it.  I have to be strong because it is my only choice as a single woman living with autoimmune arthritis.

3.  Communicating is key.  In the beginning, I just expected that my friends and family knew what I needed.  They didn’t.  They actually did not know how to deal with me at all because I had no idea how to deal with the RA me.  I had to be clear with how I was feeling.  No one could read my mind.  I began asking for help when I needed it.  Instead of canceling plans altogether when I felt sick I tried to reschedule.  I let others know what I was feeling.  Family, friends, coworkers, and supervisors were more supportive when they knew what I needed.  Communicating isn’t always easy, but it’s essential.

4. Acceptance goes a long way.  When I was diagnosed I went through the stages of loss and grief.  I started in denial that this was really happening to me.  I transitioned almost immediately to anger and was desperately trying to find a doctor to tell me my symptoms had an easy fix.  Depression set in and I hit the lowest of the low.  I had seriously bad thoughts about ending things.  Rock bottom hit me hard.  I got myself help and eventually I as able to accept my fate.  It wasn’t easy and I still struggle with it at times, but you only live once, and I’m determined to do it well.



5. RA is a part of me but it doesn’t define me.  In the beginning, I saw myself as broken. I put the disease before myself. Thirteen years later and I am a woman living well with rheumatoid arthritis. I don’t hide my disease.  RA is a life-changing struggle, but it’s only one part of who I am.  

Proud to be a part of the first ever #RABlog week.  Check out all the amazing blogs here:  http://www.radiabetes.com/blog_week15/day4.html



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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 “Day 4: #RABlog week topic: Give me 5!

  1. So true RA cannot define us. I was told many years ago diabetes would not define me, rather I would define me. Wow then 25 years later I was Dx'd with RA, Yeah it is true diabetes is not defining me. I will never let RA do it either. As my dad once said, stand up and next. LOL of course he was talking abut the neighborhood bully but in a way, hey, wait wow a blog topic is born. LOL

    rick

    I do not know if I have told you, but thank you for participating in this #RABlog week, I love your writing.

    Like

  2. Thanks so much Rick! I am so happy to be a part of this! Fabulous idea and I've enjoyed yours, and all the other blogs. I may not be able to write Friday. I'm in Philly an leaving town due to the Pope Traffic. I'll be locked in if I don't leave. Planned to write today but spent the night in the Veterinary ER. Just too much going on. I'll try. I already have Saturdays done.

    Like

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