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. 💖💖💖

Depression, frustration, exhaustion

So, what does the title Depression, Frustration, and Exhaustion have to do with RA? Imagine waking up one day and your life has completely changed, or better yet, it takes it's sweet time strolling throughout your days, slowly eliminating one thing after another. That is RA/RD. As time passes, you realize that things you used to take for granted are becoming more apparent as you struggle to get through your day. Waking up becomes a chore unless you have 12 or more hours of sleep, unless of course you are going through the sleepless phase, again.

You start to suffer from Frustration first...once you worked 12 hour days, cared for your family, cooked, cleaned, canned from your garden. And slowly you realize that one thing after another goes because after working just 8 hours, you must nap. Dinner?? Hope my family doesn't mind takeout again, sweeping can wait. Garden? Now containers because you can no longer keep up with weeding or even watering.

Next comes Depression...can't keep up with life's demands, can't fight the tiredness. Tired of being tired. No interest in much of anything. This is life? You begin to think of what was, what is, and sadly what will never  be. Life just doesn't look happy anymore. Staying in your bed is appealing. Dishes pile up, dust bunnies take on a life of there own, and you just have no interest in anything anymore. Oh yes Depression is a scary, sad, lonely place. No one is harder on you than yourself. Everyone around you has no idea, because you smile on the outside.  And the few people you let in, worry about your state of mind. Sometimes making it worse because they love you so much...How can you...I see myself as your burden.

Finally Exhaustion...If you sleep too little or too much, you're tired. Have a good day and clean the kitchen..finally finding your sink, the next day your exhausted. And the day after that. It seems to never end.

Of course there are days when the planet's and stars align. On those days, living with RA/RD isn't any easier, but it is more tolerable. Surrounding yourself with others who understand your highs and lows, having access to help both virtual and real, and having family who are understanding and supportive are all key to not suffering in silence. It's okay to visit sadness once in awhile. It's okay to get angry at this disease. It's okay to miss the old you, even mourn the loss of the old you. Just don't stay there. Dry your tears and pick yourself up. We are strong, we are warriors. Gentle hugs today and much love. 🐔🐓🐥