When you have a chronic condition like a rheumatic disease, your support team is critical. These are the people you will need to lean on when you are in pain and need support, when you are struggling with changes in your life, when you need an extra pair of ears to understand what your healthcare providers are telling you, and when you need that extra bit of help in your daily life. But finding those people and building a support system is challenging—especially when you are struggling to come to terms with having a chronic disease.
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Amy became an Arthritis Introspective Outreach Specialist* on April 5, 2015 in Pittsburgh, PA. Thank you April for stepping up and organizing a Support Group. You are a Hero.
What a wonderful logo. I think to myself as I examine the Arthritis Introspective logo. In it I see a dancer and her reflection; a dancer with arthritis curled in her legs yet still dancing. For more than 40 wonderful years I lived in the world of dance. Eight years ago arthritis miraculously introduced me to another world. The world of water. With every step into a therapy pool of salt water at 96º, my body was soothed, my mind was calmed and my spirit was embraced by peace. In this pool I could move again without pain.
After thirty-five years of living with Juvenile onset RA, I got used to my body being pretty much predictable. My onset was aggressive in a time when there was not much to do but watch and wait. A few of my important joints fused in about a month. With my wrists and left elbow gone, and my knees only able to go from 20% to 90% mobility within six months, I was left with a bad limp (which as some of you know), led to my most serious problem living with the disease; my body image and self-esteem.
Statement from Dr. Paul Lam: [The Tai Chi for Arthritis program was created by a group of medical and tai chi experts led by myself. It is designed to be easy to learn and effective in relieving arthritis pain and improving physical function or ability to do things. It is also enjoyable and safe to learn. The program has a set of warm up exercises, 12 movements and a set of cooling down exercises. It uses the most healing and relaxing Sun Style tai chi and incorporates up to date medical knowledge and teaching developments.
Denial is the first stage of grief and often occurs when people are newly diagnosed with a rheumatic condition. However, it can also happen when people experience flare-ups after a period of remission, or when a rheumatic condition becomes more severe over time. Common thoughts include: “This isn’t happening to me,” “Even if I have a rheumatic disease, it won’t be so bad. My life really won’t change,” “I don’t need to worry about treatment right now, it’s just a few aches and pains,” “Medications have a lot of bad side effects. It’s better if I don’t do anything right now.”
Now what - the honesty factor....See that gal over there....the one in the cast and leg brace? See me? I'm the one walking with my own two legs that appear to be totally normal and I have a smile on my face but inside, which each step, my feet are killing me, my hand on my left side is swollen and throbbing.....Folks never ask the "normal" looking people how they are or if they need help. They might approach the person with the walker or cast or wheelchair if they need any help.....not the "normal" person.
Erica Stotler, was a friend and champion of Arthritis Introspective. She spent her time raising awareness of human kindness in all its forms, one person, one random or not so random act of kindness at a time. Gone but never forgotten she passed away November 10, 2014. She was a wife, a mom, a volunteer and a friend to many. She lived life to its fullest pursuing family, belly dancing, and her passion for volunteering despite her diagnosis of JRA at the age of 8 years old. She leaves a powerful legacy for all of us that struggle with Autoimmune and Rheumatic diseases.
When living with a rheumatic disease, being able to cope emotionally is just as important as medical treatment. Feeling depressed, stressed or anxious can cause you to feel more pain and experience more flare-ups, even if your condition is mild or moderate. This creates a vicious cycle, where pain and loss of independence can make a person feel depressed, and the depression can, in turn, cause more flare-ups and pain.
I wrote this poem a couple of weeks ago and thought I would share...
When I was 11 I lost several friends.
I was diagnosed with arthritis, and thought my whole world was going to end.
I was active in sports, jumped rope and played tag.
When I got sick during the week, I stayed home with my dad.
The medications I was put on to relieve my pain upset my stomach and I had nothing to gain.
Pork Chops was my main and only source of protein.
School was difficult and just plain Frustrating!
There were boys who called me names as I walked down the hall.