What advice would you give to someone who has just been diagnosed with RA?
Learn all you can because “Knowledge is Power!” I definitely believe this is one of the best ways to not only survive having Ra or a related condition, but to thrive. But, using reputable sources is the key to having knowledge. I was diagnosed at the age of 7 with JRA and my mother made the doctors include me in everything since it was my body and I had to live with the disease. My doctor was great. I was seen at a children’s hospital and was one of their cases that students were brought in to see. All too many times if the students couldn’t answer the doctor’s question, he’d turn to me and I’d answer it. That shocked some students. But, it was things I needed to learn about my body. About 10 yrs ago during a PT evaluation I shocked the PT. He asked if I had trouble lifting a gallon of milk or a lg bottle of laundry detergent etc. I said no, because I knew better than to stress my joints in that way. I either bought smaller sizes OR my husband split large containers into smaller ones. He asked about carrying heavy items, and I laughed. I said if I could help it, I didn’t carry heavy items. I’d slide them along the floor whenever possible. If that wasn’t possible, I could carry the items fairly easily…it was later that I paid the price. I could do many things before that I knew were not best for me to do. I learned that at an early age during PT/OT and from my pediatric rheumy how to live a great life in spite of RA.
Do you use any mobility aids?
Wheelchair, walker, forearm crutches, bilateral ankle foot orthosis (AFO) with brace and elevated heel to compensate for ankle contractures, grabber, shower chair. Without the AFOs, I can’t stand at all. I use my forearm crutches most of the time because they’re more convenient and easier to use getting in and out of vehicles. The trade off is that there is less support and stability with the forearm crutches. At times, I need more support and stability so I will switch to a walker. And if there is a lot of walking to do, I’ll use my wheelchair to keep my energy level up so I can enjoy the activity more. I have had stares and looks but since I’ve been using these items, NO ONE has given me any kind of problem about my use of a handicapped parking spot! Before, if I parked in a handicapped spot or if my husband did so for me and I was walking without any assistive devices, I’d get a lot of stares and some rude comments. Some guy once told me he was a police officer from a large city and it was people like me that he ticketed. He gave me such a hassle. His wife even bumped my husband with their vehicle so they could drive off after the man shoved my husband. Sadly, our local police couldn’t do much since we didn’t get their license number. So, it’s almost good to have something visible to keep the comments at bay!
How has living with RA helped to improve your life?
I’m more compassionate. I am also more knowledgeable about health issues. At times my family and friends come to me for information because they know I have the resources to help them. I’ve learned the value of being a human being not a human doing.
Do you have any visible signs of RA?
My hands are visibly affected. Two fingers on my left hand curl toward the palm and I have less mobility in them. I have swan necking and hyperextension in almost all of the other fingers. My gait is very visibly affected. I walk very stiff-legged and slowly. In fact, it’s almost a waddle when I use my crutches! If I am not wearing my AFOs, my feet are very visibly affected. My toes are permanently bent. I can either put the toes of my right foot on the floor, or my heel on the floor but I cannot do both. In fact, because of how my toes are all curled under, when I put my toes on the floor, the tips of them touch the floor rather than the bottom of them. I have horrible posture due to back pain.
Can you please describe some of your favorite coping strategies for living with RA?
I read, check in with an online support group, talk to my Mom (who has polymyositis, RA, and OA) talk to my best friend of 24 yrs, who also has RA and scleroderma. (Sadly, I practically dx’d her RA!) I used to do a lot of reading of info on RA but being in a nursing home w/o Internet access for 2 yrs after spending almost a year in 3 separate hospitals has me behind on doing that and I just haven’t gotten back into it in the 3 weeks I’ve been home. I journal. Distraction is a great help. I watch funny movies. Spending time with people who understand is a huge help. My family and friends have low expectations for me when it comes to doing anything that is physically tiring. My faith also helps.
Can you please describe your current medical (traditional and alternative) treatments?
I’m on: Arava (RA), Calcium(osteoporosis), Folic Acid(prevent hair loss with Arava), Methadone(pain), Mucinex(chronic sinus problems), Neurontin(nerve pain), Prednisone(inflammation), Provigil(chronic sleepiness as well as sedation from medications), Robaxin(muscle spasms), Salagen(Sjogren’s Syndrome), VesiCare(bladder problems), and a Vitamin (which is less meds than I was on 4 yrs ago!)
Is there anything else about yourself that you would like to share?
I know I would not have gotten through the last 3 yrs without my faith. The doctors and nurses were afraid I was not going to make it. I was in a state they can’t explain. I spoke to people, appropriately answering things, but they could tell I wasn’t conscious of what I was doing and saying. I remember very little of that period. To me it was as if I was asleep the whole time. A few times I was having odd dreams that I thought were real. They told me I might never walk. And that it would take 2-3 YEARS of daily intensive therapy to stand. I had a delay of 14 months before beginning therapy once I got to the nursing home. But, once I began PT on Jan. 5th, 2011, (for an hour a day three days/week), I was able to stand on March 29th, 2011. I took my first steps on Apr. 18th, 2011. I can definitely say that while it was not easy, it also was not intensive. I know that at my sickest, people around the world were praying for me. And two people sent prayers to the Wailing Wall in Jerusalem. I fully think I made it because of the prayers of all of those people. It wasn’t long after the prayers were sent to Jerusalem that I really began to improve. I believe that prayer is what kept me alive and got me to the point of walking. I feel God has a reason why I’ve been through all of this.
(February 14, 2012) – Show Us Your Hands! is pleased to announce its Photo Book Project, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis, and increasing the public’s awareness of this group of diseases. This photo book will showcase both the hands and the stories of people from around the world who are proud of the fact that no matter how much pain and damage their hands have incurred, their hands still work, and their hands still do.
Starting today, Show Us Your Hands! invites individuals who wish to be included in this photo book to submit a brief explanation of what their hands do, and why their hands are special. A Call For Submissions form is available online at showusyourhands.com/photo-book-project. The deadline for entries is March 2, 2012. Individuals who are selected for inclusion in this photo book will be notified in mid-March.
The Show Us Your Hands! Photo Book Project will be released as part of Arthritis Awareness Month this coming May. The photo books will be bookstore quality, with top-notch binding, gorgeous paper, and professional printing. They will be available for purchase in more than 70 countries, and all of the net proceeds from the sale of these items will go towards the costs and expenses associated with current and future community projects by Show Us Your Hands! “By showing the world what our hands can do, these books will become portable ambassadors for increased awareness. We look forward to meeting the people behind the photos,” says founding member Lene Andersen.
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease, and Systemic Lupus Erythematosus.
Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.com. Show Us Your Hands! can also be found on Facebook and Twitter.
“I have recently written a book called “Walk with me daddy” The book is a true story based on a little boy and his dad and how they spend a day together. The little boy knows that his dad is different because he knows his dad is sick, but the little boy still loves his dad and cherishes the moments they do spend together even if it is a walk in the park.
His dad has a disease called Rheumatoid Arthritis. Rheumatoid or RA, is a disease that has no cure at this time but with with every book that is purchased part of the proceeds will go to help a family with Arthritis. RA, is a chronic form of inflammatory arthritis, it is also an autoimmune disease. Doctors are unable to understand at this time why a patients immune systems mistakenly attacks their own body tissue, causing painful swelling and fatigue. In some cases even bone erosion.
RA, is often thought of as an elderly disease but studies have proved it effects younger people, men and women between the ages of 30-50. Studies have also proved that it is now affecting over 298,000 children a year.”
“If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.” —Ajahn Chah, A Still Forest Pool
As we finish reading the section of the book titled Finding Joy and Love, we read about self-blame, compassion, and equanimity.
“I blamed myself for not recovering form the initial viral infection–as if not regaining my health was my fault, a failure of will, somehow, or a deficit of character. This is the common reaction for people to have toward their illness. It’s not surprising, given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted–the bias is often implicit or unconscious.”
We are introduced to the following three practices, which can be used to cultivate compassion within ourselves:
Immediately Make Contact
Opening Your Heart to Suffering
This section closes with a discussion about equanimity, or “mental calmness and evenness of temper, especially in a difficult situation.” This chapter focuses on three categories of challenges associated with maintaining a state of equanimity while living with chronic illness: responding to unhelpful or inaccurate comments from others, living with the unpredictability and uncertainty, and feeling overwhelmed with different losses.
Do you blame yourself, or have you ever blamed yourself, for having a chronic illness?
Grab bag: Which of the three compassion practices–Immediately Make Contact, Patient Endurance, and Opening Your Heart to Suffering
–resonate most with you?
How have you used thoughts of equanimity to respond to unhelpful comments, uncertainty, and loss?
This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.
Heartsongs: Weaving My Way Around Rheumatoid Arthritis
I have a constellation of autoimmune diseases, which I am treating in various ways, for the most part through diet, exercise and alternative therapies. I have learned a lot in the past year, and plan to use this blog as a way to share what I have learned, as well as what I experience each day while on this strange and curious journey. I don’t claim to have any answers, but hope that sharing my experiences will be of some use to me and perhaps also to you. My experiment continues…
Read More: http://wovensongs.wordpress.com/
Come along on my journey as I live life artfully while battling chronic pain and illness due to a chronic inflammatory disease called Ankylosing Spondylitis. I like to write authentically about the challenges of inflammatory arthritis and how I am learning to rise above them with chronic gratitude.
Read More: http://livelifeartfully.blogspot.com/
Wanton or Wanton?
I’m AtotheA which could be the name Angela, Amanda, Andrea, Angelica, Angelina, Annalisa, huh…I’m seeing a theme except for Amanda. You can scratch out Amanda. I am engaged (I bagged a man, poor bastard). I am working on another Master’s degree (am I crazy or should I be chanting :STUDENT DEBT! STUDENT DEBT!?). I have an autoimmune disease that I like to pretend does not define me, but it secretly does. Please, don’t tell Rita (I named my Rheumatoid Arthritis…well, Rita). I really have a sick fascination with naming inanimate objects and living things. Why is that? I am creating a blog to check this sucker off my bucket list. I’m giving myself a year of free therapy. Go on with your bad egocentric only child self AtotheA!
Read More: http://wantonorwonton.blogspot.com/
The Juicy Joint for Rheumatoid Arthritis
The freshest new resources for young women battling rheumatoid arthritis.
Read More: http://thejuicyjoint.com/
Chronic Curve will provide you with details of my own personal journey, weekly helpful link roundups full of wonderful links and resources, product and DIY-project reviews, dorm/college living with chronic illness; the latest research and news, tips and tricks all relative to chronic illness and pain, specifically Rheumatoid Arthritis/Still’s Disease/SLE.
Read More: http://chroniccurve.tumblr.com/
Joints in Motion
I am participating in the Arthritis Society’s Joints in Motion program in memory of my Mom, Karen, who passed away in March 2011. As part of this program, I will train for and run a full marathon (42.2 km) in Lausanne, Switzerland in October 2012. Along the way, I will raise money and awareness in support of the Arthritis Society’s research, programs and advocacy work that is so important to people living with arthritis.
Read More: http://kaarinajointsinmotion.wordpress.com/