Friday, January 19, 2018

What I want you to understand about Rhuematoid Disease

It's a multifaceted disease that affects everyone diagnosed in different ways.
I am lucky.....I read so many stories of poor treatment, lack of family support, abandonment by family and friends. Some of these stories simply break my heart. But then, I realize just how blessed and fortunate I am. Reaching that statement was not without a lot of fear, tears, anger, frustration, and education.  my husband is my biggest supporter. Without him, I think I would be one of those very sad stories. My children  and grandchildren are my reason for getting out of bed everyday. I have made some truly awesome connections with others and have been given opportunities to make a difference.

You sleep ALOT. You are in pain ALOT. You give up ALOT of your life style. You take ALOT of medicine that does crazy  things to your body. You gave up your job, your garden, ALOT of your crafts, because you had to reorganize and reset the priorities in your life. You live everyday waiting for the shoe to drop, one of the meds stops working, you develope one or more of the frightening side effects of the medicine. You live with the knowledge that you will develope other diseases that affect major organs, you realize your life span has been shortened by the very diagnosis. You give up who you were and attempt to accept who you have become.

All of this while many around you give you advice you have heard thousands of times since diagnosis. Go vegan, gluten free, exercise more, take vitamins, and the one that really hits hard..."Arthritis..oh I have that..Everyone does." Yes, I have that type too. But RD is different.

Are their others worse off than you? YES. Their are those who were diagnosed as children, and have spent their entire lives fighting JRA (juvenile Rhuematoid arthritis) These are the ones you sympathize with the most in this RD world, because they are the truest form of warrior. They have been fighting their whole lives and continue to fight into adulthood. They are the experts in this fight.

So, my best advice to those who know nothing about this disease is to educate yourselves. We will even help you. Continue to invite and include us in your lives, we may not be able to come to every event, but we will do our best. Please understand that we are fighting a battle that has no cure, that can cause other diseases, and that we try our best to put on a smile everyday. Don't compare our battle to getting old, being lazy, or needing to eat healthier. If it were that easy, the disease would not exist. most of all, just love us. We wish we could go back in time and bypass the day our world changed, but we can't. We have been dealt a life we wish on no one, but embrace us, embrace who we have had to become. I it will make a huge difference in our lives and yours.

Much love to my family, friends, and medical team who gets it. 💖💖💖 I am lucky to have you all. To my fellow warriors, fight on, I pray for you everyday, I love you all. 💖💖💖


1 comment:

  1. I am also very fortunate. My diagnosis was straightforward and the family is supportive. Rheumatoid awareness day is a wonderful idea.

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