Wednesday, October 1, 2014

What I Wish I Had Known About Rheumatoid Arthritis

     When I look back almost 11 years ago to when my rheumatoid arthritis symptoms really became noticeable and a diagnosis was given,  I can't believe I am the same person. I look back at the person I was in those early years and feel sad for that woman.  I see her crying alone in the shower, hyperventilating in the car after doctor's appointments, afraid to go to sleep because the symptoms might become worse overnight and she wouldn't be able to care for her children. I was a woman afraid to look at the internet or even go to the rheumatologist's office because what I saw for my future was extreme.  I saw myself unable to care for myself and most likely to have very wonky joints within the near future.  It scared the living daylights out of me.  Even though I had support around me, I felt alone.

     I feel sad for the woman I was because she was naive.  She wasn't aware at the time that the pictures she saw and the stories she read were often the worse case scenarios of rheumatoid arthritis or were of individuals who were at a point of struggle with their disease. She didn't know that there were people living great lives and just not sharing them on the internet or in books. Luckily that has changed.  She didn't realize then that rheumatoid arthritis was fickle and could come and go as it pleased.  Most of all, that woman didn't realize her own strength and determination.

     Starting my blog in 2008 was most definitely the best therapy I could have given myself.  It was through writing that I could share my fears, pain, and eventually my successes.  I discovered that there was a community of people out there who wanted to support each other.  I felt less alone.  Best of all, I learned that while we all shared a common disease, how we dealt with the disease and how it dealt with us was very individual.

     Sometimes I imagine myself sitting outside of a rheumatologist's office just waiting for newly diagnosed patients. I give them a big yet gentle hug and tell them what the doctor neglected to mention.  "You will be okay.  No matter what your journey has in store for you, you will find your way. You will have really bad days, but you will also have good days.  You will find the path that is best for who you are. Don't be afraid to cry.  Don't be afraid to look at worst case scenarios, but also don't be afraid to look at the best case scenarios because your disease can fall anywhere within that spectrum. Try new treatments.  Be your own best advocate. You are the only one that can make the best decisions for your treatment."  I would share my story if they were interested letting them know that some days, months, and even years have been extremely difficult.  They might notice a small change in some of my swan-like fingers, but most likely they will notice exactly what I wish I had seen early on - a woman that is active, happy, and making more of her life than her disease.  That is what I wish I had seen and known early on in my disease.  Luckily, it is what I have seen in many of the friends I have met online.

On Daniel P. Malito's site he says, "It is guaranteed that you do not know how much a disease called arthrtis can impact your life."   This is so true. The impact definitely is life changing.  The woman that I am today sees that that impact wasn't necessarily all bad.  I can look at the nodules, enlarged knuckles, and slightly wonky fingers and see that I have survived the negative impacts and moved on to embrace the positive impacts that can also come with living with arthritis.  Perhaps that isn't something someone can share with you early on, but must be experienced.