Thursday, October 13, 2011

How We Look May Be Different Than How We Feel


Yesterday’s post was titled 115/36/44.  These numbers were used to share my weight when I was diagnosed with rheumatoid arthritis, my age when I was diagnosed, and my current age.  Bloggers used these numbers yesterday to hopefully dispel the common misconception that AUTOIMMUNE arthritis - Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease, Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCTD) is brought on by being overweight or elderly.   As you can see from my weight, I was not overweight when I was diagnosed.  In fact, I felt very frustrated when I was first diagnosed because everything I read mentioned eating a healthy standard American diet of whole grains which I was doing at the time, losing weight (I didn’t need to lose weight), and exercising more.  I was already working out 4-5 times a week plus I was the mother of two young kids and working part-time.   How much more exercise did I need?  I also wasn’t elderly.  At 36, I felt vibrant and alive.  

Rheumatoid Arthritis is often misunderstood even by those who are close to us.  How can we look fine and still have a disease?  How can we continue with everyday life and really be in as much pain as we say we are?  Rheumatoid arthritis and other types of autoimmune arthritis are a challenge even for those of us who live with it. The intensity of our symptoms vary from day to day and sometimes even from hour to hour.  Sometimes we feel completely like our old selves and other days like we have aged 30-40 years overnight.  It makes planning and living your life a challenge because you never know what the day will hold for you.  An example of this was yesterday.  I woke up and worked out with my husband.  I then took a two mile walk with my border collie.  I felt great.  By the time I made it to my first teaching job of the day at 9:00am, my feet were on fire.  Walking felt like I had rocks under my feet and when I stood still at the board, the pain shot right through every part of my feet.  By the time I made it to my second teaching gig that evening, my legs felt like they had added 20 pounds to them.  It was difficult to stand for long periods.  Did anyone know?  Of course not.  I mentioned it to my husband, but that was it.  Rather than whining about it, I prefer to release the pain  as much as possible through laughter. I laugh as much as I can.  It is amazing how much laughter quiets the mind of the pain you are experiencing.   

We each have things going on in our lives - stress at work, divorce, health, money, etc, etc.  Although it is frustrating for me when friends obviously have no idea what rheumatoid arthritis is even after seeing me go through some of my worst flares, I don't feel upset with them.  I know that unless you are dealing with a certain situation yourself, it is difficult to understand what it is really like to go through it.    My daughter recently shared a wonderful message that she herself learned at camp and that I am trying to incorporate into my own life more.  She said, “I need to be nicer to people because they might look like everything is fine, but then you find out there is a lot more going on inside.”  I think if we could each incorporate this wonderful lesson into our lives, we wouldn’t need to have World Arthritis Day or any other day of awareness because it wouldn’t matter what is going on in the lives of those around us if we were all a little more patient and understanding with what might be going on with people that doesn’t always show on the outside.