Skip to main content

My Muse for Advocacy


*WEGO asks:
Was starting your advocacy journey a hard 
decision? Were you anxious and hesitant or were 
you excited and ready to share your story? Tell us 
how you chose to start advocating for your 
condition.
Advocacy in the realm of autoimmune disease was a fluid and natural process for me. My daughter, now 26 years old, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2. I had spent her young life learning about rh factors, ana tests, and a plethora of other acronyms and abbreviations pertaining to her disease. 
When Alesha was diagnosed, I felt incredibly isolated. It was such a difficult place to be because I struggled with undiagnosed clinical depression. (It would be 8 more years before I realized that diagnosis), but my little girl needed me, so  I stepped out of that random and very dark place to tackle the beast called Arthritis(JRA). 

 Such a motivating factor gave me a feeling of power like I could divide and conquer anything!  The world wide web arrived one year after my daughter was born, but it was certainly not the internet we all know now, and it wasn't available to me at that point anyway. I researched by visiting hospitals and doctors, joining the Arthritis Foundation, and calling other parents whose children had JRA. So, I gathered and shared the information with anyone who would listen, especially other moms. 

 Fast forward to 2014, and JRA is now considered Idiopathic and called JIA. I am diagnosed with Psoriatic Arthritis, followed by Fibromyalgia soon after.

 The advocacy for these conditions began almost immediately, although my voice has been punctuated by the symptoms and struggles associated with my conditions. I loose ground sometimes, but always come back. There is a consistent voice in my head that finds its way back every time. I believe that voice is my daughters; after all, she was my muse for advocacy.
 #HAWMC #WEGO #JIA #PsA #Psoriasis #Fibromyalgia #ChronicPain #GrammiesDoubleWhammy

*WEGO Health is a network of over 100,000 of the most influential members of the online health community. We are bloggers, tweeters, pinners, and leaders of Facebook pages — we are the empowered patients that drive the healthcare conversation online, across virtually every health topic and condition. 

Labels:
Location: Cleveland, GA 30528, USA

Comments

Post a Comment

Popular posts from this blog

Sleep. Creep. Leap.

It's been awhile. Did you miss me, I wonder?  I've been drifting about on the clouds of memory fog and forgetfulness that accompany conditions like psoriatic arthritis and fibromyalgia. (My family gets a kick out of my loopiness.) The plethora of doctor appointments and hospital stays have kept me pretty occupied, as well. Since autoimmune dysfunction assaulted my life, I have come to accept most things as they appear with much less stress than before. Perhaps time heals. Now if I could just remember to schedule that massage... Having been diagnosed with psoriatic arthritis in 2014, I am much more invested in the reality of this disease now. I have read, asked questions, written, researched, traveled and cried. Knowing what I know now, I wish I wouldn't have been so hard on myself. A gift from my daughter, Alesha, may have been the the gentle nudge I needed to truly realize this. She gave me a rose bush for Mothers Day the same year I was diagnosed with psoriatic ar...
1 comment
Read more

Attitude Modifications

As my husband facilitates ideas to make my life easier in the house , I have been adjusting and attempting to modify my attitude. May 5th marks one year since my Rhuematologist officially diagnosed me with PsA. The Fibromyalgia determination came just two months ago. Being pronounced with autoimmune diseases is kind of like running a race without a finish line. I spent a long time trying to find out what was causing the pain and fatigue, only to discover there would never be a means to an end.  Thus begins a process much like grief:   Denial - Much like when I was diagnosed with depression, I just shook my head when it began to soak in that I had an autoimmune disease. So much so, that I refused to take the meds and began reading everything I could get my hands on that would discredit the diagnosis. Methotrexate? No, thank you. A chemo medicine for arthritis? Are you crazy? The realization that my doctor might be correct in his conclusions just spiraled into a slow burn...
Post a Comment
Read more

Adjusting My Sails

One week before my third Remicade infusion, I went to see my Rhuematoligist.I wanted to ask him some questions about my Psoriatic Arthritis,and the length of time I may have to wait until the infusions began to work. I explained that I was experiencing more pain in new places, including my left elbow, arm and shoulder. The pain was chronic and overwhelming and I couldn't understand why I was getting worse. After an extensive overview of all my symptoms, my doctor examined all of my joints, while asking about the specifics along the way. He touched certain points on my neck and back that just about sent me through the roof! This was a bit alarming to me. Although I had been experiencing overall pain and malaise, I was stunned to realize those certain points were so painful. Folding his arms, Dr. Patel stepped back and paused. His diagnosis saturated my being with a cloak of misunderstanding. Fibromyalga. What? How is that possible? I already have two autoimmune diseases that ...
Post a Comment
Read more