Living with Rheumatoid Arthritis; Nothing Normal

RA – Rheumatoid Arthritis:

I suffer from this disease, yes it is a disease not just an “aching” problem caused by old age. People see me and notice minor differences to my “outer” looks than a few years ago but they cannot “see” my pain. People automatically hear “arthritis” and think “oh I have a touch of it myself, my knee, or my finger, etc.” I think once people understand that osteoarthritis and rheumatoid arthritis are as different as night and day it will be understood. The difference between the two always make me wish – rheumatoid arthritis be called by a different name, maybe get rid of the word arthritis and replace with disease. It may have people think in a different direction. Without the word arthritis, there won’t be the automatic connection with osteoarthritis. RA is more than arthritis, it is a systemic disease, which means it can affect other organs in the body.

The list of  Rheumatoid Arthritis symptoms include - joint pain, stiffness, fatigue, and depression. Rheumatoid arthritis stiffness can make you feel like you are moving through wet cement. Your joint pain can feel like you sprained your knees, shoulders, neck, and wrists all at the same time. That’s because rheumatoid arthritis is an inflammatory disease that affects your whole body.  Having an unpredictable disease liker rheumatoid arthritis can be an emotional roller coaster. The toll that active rheumatoid arthritis inflammation takes is often under-appreciated. 

First let me say. “There is nothing normal in my life anymore.”  I have sense of imbalance in life due to the increased need for rest and sleep and feelings of frustration and shame. I used to be able to open a bottle cap from my water bottle without thinking, now it is a chore. I am fatigued most of the day; my body hurts in ways that unless you can really “feel” it, make it difficult to comprehend. I cope as best I can, but at times it overwhelms my daily life and thoughts. Some days I want to walk into the closet with my fur-babies and block away the world. I want to be “normal” again, but there is no going back, this is a progressive disease without a cure. I fight the fight when I have the strength, and I deal with the pain, what is the most difficult to deal with is knowing that outsiders (those who don’t have the disease) around me are unable to appreciate what I deal with every day; you look fine, you have no scars or deformities, so you must just be getting lazy. I saw this portion of a recent study, and because it mirrors my feelings and should make me sad, it helps knowing that I am not alone, and that makes me feel pretty good today.

“A 2013 study published in Clinical Rheumatology reported on participants who took part in six focus group discussions on fatigue and RA. Researchers found that rheumatoid arthritis fatigue was unpredictable, overwhelming, and often associated with frustration, fear, and negative emotions.”

There are many people in my life that don’t see it, but I don’t imagine they want to. They just notice that I move slower and wear more practical shoes. They don’t see my morning shuffle or my cabinet full of pills. And though it’s easy to joke about the aging process and how it sucks to get old, I’m only 49, and I’m worried about what is yet to come.

My fur-children get me through each and every day with their unconditional love and understanding.

Always remember, Only God loves you more than your dog.

Life is not always sunny side up

Did you ever wish that you could stop time, now I know almost everyone has? I admit I too wish this, not to stop wrinkles from invading my face, or to stop the body from sagging, or to stop the weight from adhering to the thighs. I wish I could have stopped time about nine years ago.

Nine years ago my hubby and I were so engrossed with each other, we had it all; the newness and infatuation, love and passion, the carefree life without the big house and all the responsibilities we seem to have today. Each day was filled with ecstasy and bliss and oh so less tiring and hectic.

Now today we have a three bedroom house, three dogs, one cat, two full-time jobs, a large back and front yard to care for, four vehicles to keep clean, and so on. We had less nine years ago, but in many ways we had so much more, we had more of each other and less of the “things”. We still had two dogs and two cats, I could never ever live without my babies, but the house was smaller, the chores were less, and our attitudes in life were more carefree and less complicated.

Today we are closer in our relationship mentally and yet the physical has begun to lessen, the sizzling fervor is not as frequent; I am up each morning between 4:30am and 5:00am so you can guess that I am usually in bed at 9:00. I work a full time job with a minimum of five hours overtime each week, and I need not preach to do the woman’s choir, all the work we do in our homes either before or after, and most times a combination of both, when we finish with our “real” job. It almost feels as if I no longer choose what to do each day, the job, the chores, the fur-children, and even things like the weather now dictate what I am to do almost every minute of every day and energy is a word that is no longer in my vocabulary.

I have been diagnosed with depression in the past, and if I were ever to divulge my past relating to my childhood and young adulthood you would understand why. Serious depression is not the one or two days you are feeling sad, or the grief you may experience during a loss, it is a somber life alternating condition that steals your life one day at a time.

First you lose your desire to do the things that once you brought joy, you stop going out and cease to interact with humans whenever possible, you just feel like sleeping all the time, you lose your desire to perform your daily activities, are irritable, have a loss of appetite, inability to concentrate, memory problems, and aches and pains. It is no joke to be this depressed and when you finally realize this is happening it is when you know you have to seek help. I did and I got better and I met the wonderful man I am married to and life was astonishingly incredible, like I was just born and the entire world was new and exciting, and it was sunny every day. It was as if I had never smiled before and now I just could not stop.

I am still very much in love with my husband, he is my whole world, but yet I feel some of the old feelings creeping back in and I know I have to do something about it, but I am just unsure what to do. I have tried all the latest medications and none work, or if they do work, they cause me too many side effects that I throw them away. I don’t want to see a “professional” as I don’t feel I have gone that far to the dark side, I still see the sun, just not as often as I did nine years ago…or even three years ago. So today as I am home baking for Thanksgiving tomorrow, I wonder what happened to that young lady that once lived each day with such zealous, when I seeked excitement and had so much optimism. I am hopeful that this has been brought on in part because of my dad’s passing three years ago, dwelling on the fact that my family is so small and the ones I love the most, my brother and his family live in NY, the stress of my on going back problems, and the stress of work, and a few other things that I will just keep inside. My biggest worry doesn’t have to do with me, it has to do with my husband, he thinks I am depressed because of something he has done or not done, and that is so untrue, he is the one that is bringing me sunshine each day and without him there would be all darkness, he is still the love of my life and for him, I will seek a way to find myself and bring back that young lady that was filled with joy and laughed; I know she is still in me and I won’t give up looking for her.

So with tomorrow being Thanksgiving I am thankful for my loving and devoted husband, my family and friends, my fur-children, and I am so thankful for life; I may not be perfect at this moment of time in my life, but my life is more perfect than most.