This profile is particularly poignant, because just a couple of days ago Marianne shared some encouraging updates about her recent spinal surgery. Many of you may know her as the “lady in the wheelchair” who was heckled at a town hall meeting this past August. That description may not fit for long, though. Marianne walked in on her own, with cane and husband in hand, to her most recent appointment with her surgeon. Please join me in wishing Marianne the best as she continues with her surgical recovery!
Real Profiles of Rheumatoid ArthritisPhotos © Marianne Hoynes
Ocean Grove, New Jersey, United States
How long have you lived with RA?
5 years, along with Sjogren’s Syndrome, Fibromyalgia and degenerative disk disease, all related to RA.
What advice would you give to someone who has just been diagnosed with RA?
If you have not already learned to love yourself, now is the time. Learn to give yourself compassion for how you feel, permission to grieve, self loving words to lift yourself up. Get yourself a doctor you can talk to, and one you feel comfortable calling in between appointments. Flares do not always keep the same schedule that you do.
And of course, you need to educate yourself about the illness and all of your treatment options. It is also very helpful to bring someone with you to the doctor appointments. A trusted friend or family member can take notes while the doctor is talking. It is easy to become overwhelmed with all of the new information and treatment options, and easy to forget something important.
Do you use any mobility aids?
A cane, a wheelchair and my husband.
How has living with RA helped to improve your life?
Living with RA has allowed me to see the love and devotion my husband has for me, in a way I never would have if I were healthy. It has allowed me to make so many new friends, and be part of a community of strong people, who accept me just as I come, and who know…. They just know.
Do you have any visible signs of RA?
I have a widespread rash called Granuloma Annulare, which lays across all of my joints , torso and extremeties. A fresh spinal surgical scar, and very sensible shoes, as I have had to give up my beautiful collection of sexy high heeled shoes and boots from my trips to Europe. And about 30 extra pounds on my former trim athletic frame.
Can you please describe some of your favorite coping strategies for living with RA?
I watch my inner dialog, and am careful to say loving, compassionate things to myself. I allow myself a day or so if I need to grieve, but I do not isolate. On those days I make myself reach out to others who are living with RA. That is always validating and comforting, and helps me pick myself up and move foreward.
I focus on what I can do, instead of what I used to be able to do, and if I stumble, I tell my husband, who practically throws me a party if I tell him I folded a load of laundry. I was one who always set the highest goals for myself, and had a “no mercy” attitude about my own accomplishments and perceived failures. Now, I spend more time focused on what I am grateful for, and I am learning the strength of patience.
Periods of chronic pain can make me selfish, as it robs me of any ability to see beyond myself, and getting through each moment is hard labor. I am careful to thank my husband if he has to do extra, and let him know he is appreciated. My RA is a family illness, and we are a team. Before every doctor appointment, we sit together to discuss what to say to the doctor, and my husband writes down a list of questions. He also looks up the side affects of new medications. Some of these practical tasks allow him to be an active participant, and make him feel like he is helping and contributing. In this way, we have been educated together about RA and we overcome it together.
Can you please describe your current medical (traditional and alternative) treatments?
Orencia chemotherapy infusions, vitamin D, balanced B vitamins, magnesium and calcium, hydrocodone, a heated mattress pad, as well as medication for Sjogren’s Syndrome and Fibro.
Is there anything else about yourself that you would like to share?
When I graduated from school, I was armed with a good education, a strong faith, a deeply embedded belief that we are all our brother’s keeper, and fluency in more than one language, thanks to my parents. I saw the whole world as my place to play, and I wanted to see all of it. I studied at University in Italy , took corporate jobs with international companies so I could live overseas, traveled and made art. There were some very hard times, like the death of my dear father, my mother’s homicide at the hands of a loved one, but I worked always at becoming the best person I was able to be from what life had to offer.
My life experiences so far have taught me to focus on what is beautiful in so much ugliness, and that God graces us even in the worst of times if we are willing to see it. Having been physically fit in my adult life, a weight lifter, runner, hiker, scuba diver, I am learning to live in this new body, and learning how to love what I have been given. With the blessing of close friends, two big dogs made of pure love, and my husband, I am finding God’s grace even in the midst of chronic illness.