I had the unique opportunity recently to go on a wellness dream vacation organized by Cruise One (Glenn & Associates, Brown. Maria Shiver said, “If you’d like to set your course on being more courageous and connected, engaged and resilient, leave the GPS at home. Daring Greatly (course book) is all the navigation you’ll need.”
It is my belief, while on this adventure, we forged potential lifelong connections enhancing our feelings of love and belonging. We learned new skills and redefined old hurtful beliefs in order to embrace life in a wholehearted way and see vulnerability as essential to having a brave and courageous life.
You are encouraged to start saving now; there will be 2 or 3 cruise dates next year where you too can make a positive change in your life by joining the Daring Way group. Having lived with complex chronic disease for many years and struggling with significant pain, fatigue, and heart and joint damage; this course was a game changer for me. Get the book and scan through it, I feel sure you will find yourself reading every word. In addition, go to her Ted Talks on YouTube (ex: Power of Vulnerability), you’ll be hooked by Brene’s charm and caring delivery of her pioneering research on vulnerability and courage.
Susan Hart, a Certified Daring Way Facilitator, led us on a bold journey of self-discovery. She is a nationally certified, Licensed Professional Counselor and Certified Supervisor. You can learn more about Susan at www.daringinbirmingham.com. Make the decision to investigate the Daring Way, you won’t regret it.
This is an opportunity to seriously consider — make time for you. Be kind to yourself and disconnect from your everyday life for a few days. You have a right to live life boldly, to be loved, and feel connected. Learn how to show up, be seen, and live a braver life!
It’s another rainy day; only good thing is it cuts down the heat but with rheumatoid arthritis the rain stirs up the symptoms. Some say it doesn’t cause inflammation – just additional pain. And as we know, with pain comes fatigue and with fatigue comes depression, if you aren’t careful. Over the past few weeks, I have been blessed to have young ones around me, visiting, staying over, playing, reading, laughing, and just enjoying life. Reminds me of a time without RA when life was light-hearted on the most part. Yes, I had family drama like most people do but physical pain wasn’t a part of my life.
Many years ago, I had an episode of ‘illness seeking behavior.’ Having a chronic disease in which much of the impairments early in life are not visible can be challenging and disheartening. People tend to disbelieve what they can’t see and only ‘old people’ get arthritis. “Just try harder,” “you don’t look handicapped to me,” were words I often heard, shifting blame on me for any pain, stiffness, weakness, I might be exhibiting. Anyway, I decided I had AIDS. Yes, this really happened. Didn’t have any real symptoms, I just think subconsciously I thought people would understand a diagnosis of AIDS where a flare of rheumatoid arthritis was meaningless to them. No sympathy or understanding. I used to love to get the flu! Something everyone understood.
Anyway, my doc at the time, told me I had to stop looking for illness and to surround myself with children. I was working at an arthritis center and helping out with an arthritis support group. Unintentionally, I had surrounded myself with arthritis which is fine in and of itself but I wasn’t balancing my life with a lighthearted side. So, I did and it made a difference in my daily outlook on life!
Now, I intentionally look for the joy in as many situations as I can. Some may think I verge on being too silly but it seems to be working. Life is hard, my husband has ALS and I am his primary caretaker. Everyday is a challenge—we can meet it with bitterness and resentment or look for the joy and seek out the humor. Kids are filled with it, tap into the magic of childhood and laugh. Easier to find than you think!
The other day, Frankie and I were relaxing outside. We are fortunate in that we often find ourselves alone in the quiet. After many years of chronic disease pain, I have learned to appreciate the quietness and to seek it out each day. Time — even five minutes — in the stillness can make a difference in the quality of the day. During this time, I practice positive self-talk. If you’re like me, it is easy to beat yourself up mentally. Words like stupid, ugly, and dumpling come to mind. This can hurt the spirit and damage our ability to cope with pain. Turn it around as soon as possible. We are strong, powerful, fun and joyous! Our words are empowering. Find three words that uplift your spirit and write them down. Practice saying them (internally and out loud) several times a day. Nourish the spirit, believe in yourself, and ask the spirit to show the way.
I grabbed my money, got carefully out of the car and shut the door to go in the Deli for CB’s BLT…leaving my newly-bought $4.52 latte, my keys, and my purse locked in the Jeep. Fortunately, my phone was hanging on a lanyard around my neck (since last losing it and finding it tucked away in the bathroom drawer). I thought, “This can’t be happening today!”
For years, I have accommodated the increasing pain in my feet; as a patient with rheumatoid arthritis that’s what we do. As the toes dislocate, the bones drop and seek to drive through the soles of one’s feet. Calluses develop and pain increases – much like sharp pebbles in your shoes. Walking barefoot becomes near impossible. The question becomes ‘is it time for forefoot resection or will a trip to the podiatrist buy you more time?’ As this crosses my mind standing outside my car, I look longingly at my hot latte getting cold, and dial AARP Road Service, which is thankfully in my handy contacts.
Told my policy had expired 2 years ago, I began impatiently telling them they were mistaken and that I had called them 2 months ago after a similar mishap. More questions as I stand outside on those painful soles sitting in my beloved Crocs flip flops as the cold wind cuts across my roomy open-toed footwear. Then I am told if I would give my credit card, they could update my record. What part of ‘my purse is locked in the Jeep’ had they missed? At this point, it was suggested that I call my husband and get the number from him. I let go of the tears at this point, as my toes began to freeze and turn blue, telling them my husband was home with ALS and unable to get the information we needed. The pity party was underway!
I hung up and hobbled into the deli – what took me so long? I called my brother who, thankfully, was at home. Then I took the free ice cream and napkins offered by the deli. Crying and eating ice cream (yep, the party is official)–not caring who saw me, I waited on help from family once again. I stubbornly hadn’t wanted to call. Upon arriving home, I located my policy so I could call AARP back and vent my frustration. It was then I realized I had switched to AAA. Maybe I’ll laugh about this someday, but not today – no, not today.
It has been over 40 years now dealing with daily pain and chronic disease. When dealing with health issues, I have learned preparation and practice can be the difference between feeling empowered or powerless.
Frankie, my sweet Boston terrier, and I had the opportunity to share some thoughts on being better advocates for ourselves. A health magazine entitled, Brave, contacted us and you can read the article here.
If you’re like me, I find it easier to speak up for friends and loved ones — much more than for myself. But it can be done; stay calm, be prepared and speak up. What do you want? Be specific, we all want less pain, but what would you like to do if you had less pain? Write down your top three concerns and how they are affecting your quality of life. Then don’t leave until they are answered. Your needs, desires, plans are important.
I recently returned from the 30th Anniversary of the Arthritis Foundation’s Juvenile Arthritis Conference in Keystone, Colorado. After seeing all the children with juvenile arthritis embrace their challenging lives with smiles and laughter, I determined to return home upright and ignored the wheelchairs and elevators. Telling my dear friend of near 50 years we were taking the escalator, I hopped on. Thankfully, she followed quickly behind me. My suitcase made it, my walking stick, and one foot landed properly on the moving stairs. My other leg did not. As the staircase moved upward, I went into an awkward split and fell backward, painfully scraping my back in multiple places. I was now lying upside down staring at the face of my friend, who thought to protect my head even though she was also going down. We both urgently asked each other if we were okay.
Two painters from nearby ran to our rescue as someone hit the emergency off-switch to the escalator. A wheelchair was found and the EMT called. Wonderfully kind people stopped to help — a nurse, an airport security member and the painters refused to leave until the EMT arrived. Fortunately, nothing broke; we just had a few bruises and cuts.
We refused the hospital, and the EMT looked over our wounds. Seeing one cut, he proceeded to unlock his medical case extracting a Band-Aid! As he applied it, I was told “You need to wash this cut as soon as possible because those stairs probably haven’t been washed since the first day they were put in.” My sweet friend and I looked incredulously at each other and said, “We are getting on the plane home, don’t you have some alcohol or astringent?” The EMT quickly replied, “Just a minute” as he walked officiously over to his medical case, unlocking it, and gathering what appeared to be supplies. He returned proudly and, with all seriousness, handed us another Band-Aid. Really? Can you imagine the paperwork!
The pain is relentless today. Although the intensity remains in the moderate range, my mind won’t allow me to compartmentalize it this morning. Frankie, my Boston Terrier, who is attuned to my inner battles, just brought me his ball; as if to say, “come on let’s play!” Tears threatened. This past week has been challenging; I have been able to function and keep my mask of cheer in place but I feel it slipping away this morning.
Having chronic pain from long-standing rheumatoid arthritis has stripped me bare many times over the past years. It’s easy to fall back into old patterns and question myself. What did I do wrong? Am I worthless and just a burden to those I love? It seems overnight that my hands transformed — unrecognizable, crooked, misaligned, and ugly.
When I fall into self-pity I have found journaling to be a great comfort. When chronic disease pain hits with brute force, it isn’t a choice but it’s within our control to wallow in self-pity or take another action. Having been here many times before, I know what I need to do. Tears can be healing but I’m done for today. It’s time to nurture the mind, body and spirit. We have power in our lives. It’s time to take positive action. I best go find Frankie’s ball and let that inner child of mine out to play.
I am calm and peaceful…well and happy…strong and powerful.
Words of affirmation, each morning and often throughout the day, I draw upon these words. Each day, as you know we have a choice to experience a world of peace or agony. So very powerful to know that chaos, pain, and confusion may interrupt your day but how you deal with these powerful interruptions is your choice.
All behavior is a choice. Many years ago, I read the life story of Jeremiah Denton, one of the longest prisoners of war during the Vietnam War, he said, when you’re broken don’t despair, bounce back as soon as you can to the hardline. Yes, there are times we despair but we have within us the power to choose a different course — that of hope and gratitude.
I have identified often in the past with prisoners of war, trapped in bodies that choose to torture, seemingly upon a whim often without warning; plans are destroyed, dreams are shattered, and hope compromised but only temporarily. As night passes into day, this too shall pass away. For hope remains steadfast — it is your choice.
We at the Arthritis Foundation wanted to draw attention to the fact that Kids Get Arthritis, Too by having a picnic on the Capitol lawn in Washington. Hundreds of kids and young adults affected by the over 100 arthritis-related diseases such as juvenile rheumatoid arthritis, lupus, and scleroderma had invited their members of Congress to come out and share a PB&J sandwich with them.
Even before 9/11, permits from the Capitol police were required and substantial preparation was needed. On the forms we indicated, we wanted all 50 flags with picnic umbrellas and chairs, 2000 PB&J sandwiches, and lots of water. In addition, port-a-pots and ramps were required.
We were granted the permit but with several stipulations, helium balloons had to be filled prior to arrival and all equipment and supplies would be inspected prior to placement by police and canine assistants.
Finally, we were told emphatically that “no clowns were allowed on the Capitol grounds.” We complied, of course, but to this day I must say, I can’t figure out how they keep getting into the building!