And before anyone gets upset, I am not trying to compare the diseases mentioned above, all of which are serious. I am merely trying to make a point about the uninformed comments and lack of awareness that RA Superheroes encounter on a regular basis. We have all received these responses, plus many others, at one time or another during our journey through chronic pain and debilitating inflammation.
The Feeding Edge is a place where art, a positive outlook, and Health Advocacy issues come together. Currently the Art Apple A Day project and Apples for AS is well on the way to the goal of a 365 day journey to create a daily art apple for Ankylosing Spondylitis awareness. Apples were chosen because of their health benefits and anti-inflammatory properties.
Salisbury woman writes book to honor her mother’s battle with rheumatoid arthritis
Carla Jones yearns for those conversations with her mom. Those moments when she could bare her soul and know that she was being understood.
That was one of Celia Veno’s gifts. She had the ability to listen keenly and empathize.
“No matter what you told her,” Jones says, “you felt validated.”
When Veno died from complications associated with rheumatoid arthritis at age 74, Jones felt compelled to understand and tell her mother’s story. It was the only way to deal with her void. The result is an e-book in which Jones pays tribute to her mother and warns others about the dangers of a disease that affects more than 1.3 million Americans, most of whom are women.
It is not considered a fatal disease, but its complications can make the body susceptible to conditions that can cause a person’s death. In Veno’s case, the disease eroded the vertebra of her cervical spine. This deterioration resulted in spinal cord syndrome, which was the catalyst to her death
More than a million Americans suffer from rheumatoid arthritis. The numbers of deaths from this disease continues to climb each year. Late diagnosis and treatment for arthritis related, cervical spine deterioration, is one reason for some of these deaths. Celia Veno, a Bucks County retired woman and mother was one of those fatalities.
Celia Veno, a woman in her 70’s, began, experiencing mysterious migraine-like headaches and atrophy. After her general doctor and neurologist failed to determine the cause of these symptoms, a new rheumatologist was called upon. He immediately diagnosed from a previous cervical spine x-ray, that she had advanced spinal cord syndrome. Unfortunately, the findings came critically late. She died two months later.
Eighty-six percent of people with rheumatoid arthritis have the disease in their neck. (cervical spine). “Death by Rheumatoid Arthritis”, lists signs and symptoms of spinal instability, due to advancement of the disease.
Carla Jones is dedicated to bringing awareness to the undisputed fact, that anyone can die from complications related to rheumatoid arthritis, and to promote early detection of cervical collar damage, for those with the disease.
How long have you lived with RA?
15 years diagnosed.
What advice would you give to someone who has just been diagnosed with RA?
First of all, be glad that the pain and suffering now has been diagnosed as most of us with RA wait a long time to have it diagnosed and that is tough enough!
Secondly, understand that there are treatments and strategies for managing RA that will allow you to live a joyful, productive life if you commit to what needs to happen and utilize all the tools available.
Third, seek support and comfort and guidance from your “team” which should include your medical folks, family and friends and any support or online RA research and support groups you can find!
Do you use any mobility aids?
Just the standard neoprene braces now and then.
How has living with RA helped to improve your life?
As cliche as it sounds, I have a much deeper appreciation for EVERYTHING from nature to my family to the simplest pleasures in life.
Do you have any visible signs of RA?
I have some nodules, but not many and my wrists are a bit mishappen….otherwise very little.
Can you please describe some of your favorite coping strategies for living with RA?
A good cry now and then is really helpful even though I try sometimes to bury it. I have found that “letting go ” (in an appropriate place -not the grocery store for instance ;-)) provides a huge emotional release. I also really love guided imagery which allows me to fully relax and meditate. Very useful.
Can you please describe your current medical (traditional and alternative) treatments?
Medication wise I am on methotrexate, low dose medrol, celebrex, remicade (but switching to Simponi next month as the remicade is failing).
Is there anything else about yourself that you would like to share?
Throughout this journey I have found great support and relief in continuing my work as the Director of three elder service programs where I have had the amazingly good fortune to develop programming for our community. I also serve on a number of boards, including our New England Regional Arthritis Foundation Advisory Council. I have found that participating in other organizations is very rewarding. I also volunteer at the Court Diversion program which works with first time offenders to find an alternative to incarceration.
I love to read, I an avid swimmer, I love Zumba. Most of all I love spending time with my family – my husband of 34 years, my three sons, my brother and my Dad and my friends and co-workers who are a priceless source of comfort, love and support.
Finally, I have blog I started a couple of months ago and I would love folks to check it out and let me know their thoughts on the topic and/or suggestions to make it better. the link is http://livingwithra-nan.blogspot.com/.
Writing about what I know – life, work, (single) parenthood, inflammatory arthritis, and irony
A lot has happened with me in the last three years; things that have fundamentally changed my life, my outlook and my priorities. I have become a (single) parent. I have taken voluntary redundancy from a long-term job and am now working independently. And I have been diagnosed with inflammatory arthritis (a chronic and often debilitating autoimmune disease).
And for three years I have been a lurker. I have looked online for people with similar experiences, and have taken great comfort and reassurance from what I have found, and I am not alone – apparently ‘1 in 4 internet users who experienced a recent medical crisis went online to find someone like them…
Up until now, I have not been ready to talk much about my own experience. but increasingly I feel it is important to add my voice to the body of experience that is amassing online – particularly in relation to health matters, where there is some vital advocacy work being done. I am also finding that the conversations I am now having with people going through similar things are invaluable in terms of helping me to feel connected and come to terms with my illness. At the very least, I hope that what I have to say will provide that element of human connection and comparison for people going through a similar experience. And it would be even better if we could have a chat about it!