Marianne Hoynes

Marianne Hoynes

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 Arthritis
Real Profile Hoynes Marianne
Photos © Marianne Hoynes

Name?

Marianne Hoynes

Age?

47

Location?

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.

7 Comments
7 comments
  1. Hazel says:

    Yes, Marianne, you are in inspiration to me too. I hope our RA community can hear more from you in the future. You are an RA hero of mine.

  2. Wren says:

    Who could fail to be inspired by Marianne’s bravery in regards to her stand at that town hall meeting? Or by her story? And who could fail to be disgusted by the people in that audience — our fellow Americans — who hooted at her, shouted insults and attempted to keep her from speaking out about the desperate need for health care insurance reform? Even months later, that video appalls and astonishes me even as Marianne’s courage works to steel my resolve.

    Guy, thanks for posting these profiles. And Marianne: Bravo!

  3. marinne hoynes says:

    Thanks to all of my “friends” in the MS, RA, and Fibro community. I am grateful, and always uplifted, by your support, kind messages and encouragement.

    I don’t see myself as being an especially courageous person. We all cope the best we can with chronic illness, and it warms my heart that we all take time to give to each other.

    In regards to our atrocious lack of health care in this country, and the appalling greed of our government and the health care industry, I was just sick of it, sick of being financially drained and making choices about medication or paying for food and my home.

    Society works best when we stand up and speak against oppression and wrongdoing. I am the daughter of an ex-Catholic priest and a community organizer. it is actually harder to sit and suffer in silence, than to protest.
    I wanted very much to go speak on Capitol Hill during all of this debate and fear mongering, of politicians who care more about not letting the other guy look good, than the health and welfare of the people they represent. I guess my message was too threatening – I had no response from my Congressman Frank Pallone, or my senators Lautenberg and Menendez, and they were “not available” when I called and spoke to staff.

    People are really suffering in this country. We are all responsible, for how silent we have been, are being, as we learn more and more, the personal stories of wrongful death at the hands of an insurance company, the statistics for homelessness because one family member becomes ill, or because you give birth to a special needs child, or have a terrible car accident.

    I have a friend with Lou Gherigs disease, ALS. She said this to me today, after she told me she could not afford her medication, ” I can’t afford my medicine so my doctor and I have discussed it and it is what it is. I am not going to go berserk over it. I will die sooner but I will be with God sooner. I have had a good life and I will continue to live it as best as I can.” She is already a cancer survivor, and was a Career NJ Corrections Officer. She is courageous.

    Thanks all of you, thanks RAGuy.

  4. RA Mom says:

    Thank you so much for sharing you story, your thoughts, etc. You truly are a hero to the RA community!–not to mention an inspiration!! God Bless….RA Guy’s Mom

  5. RA Superb*tch says:

    Marianne,

    Thank you so much for the sweet comments about my blog! My husband and I sent your news link to friends and family back when Keith Oberman first reported on the story. We were incensed that men could be so insensitive.

    If I am writing anything worthwhile, it must only be because I am encouraged by people like you!!! You spoke with such grace and dignity. And the RA community recognizes that you aren’t just telling YOUR story, you are telling OUR story.

    Do us a favor. Put up a paypal link so we can send donations for your house. And we will spread the word among our friends.

    - RA SB

  6. John M. says:

    Marianne,

    Strong voice in the wilderness. Take care of yourself.

    Any permanently disabled worker in New Jersey should
    apply to their County Disability Review Team for enrollment in NJ Work Ability health insurance. Extremely good governemt plan and most prescriptions are covered.

    Happy Holidays!
    and most meds are

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