Providing Answers, Support and Hope in Georgia
Thirty-One Faces of Hope: Rosemary Graham
The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Rosemary Graham - 37 Year Lupus Survivor – Still Moving
In the beginning. That’s how most stories begin – and so does mine. I guess you could say I’ve always had health challenges throughout my childhood and young adult life. I’m a native of South Bend, IN. When I was five years old I fell down a flight of stairs and crashed on the floor with a head injury. My parents moved into a house and our heating system was black coal. I would help my father shovel the coal from the holding room into the furnace. As a result I always had a cold or flu. One incident I remember was when I was 9. I was shaking, chills and had a high temperature of 105. My parents filled the bathtub full of cold water and ice – setting me in it, and then once I was dry rubbing and smearing Vicks VaporRub all over me.
During the summer of 1978 I started having what seemed like a bad case of the flu, but the doctor discovered I had what they they called “walking pneumonia”. I was given penicillin and an antibiotic. After getting better, I decided to move south so I packed my car and drove to Atlanta to start a new life.
Adjusting to the change of weather was trying at first. Every year I would get a bad cold or flu. Six years later, those symptoms returned and when I went to see the doctor and he told me I had bronchitis. A month later, it was sino-bronchitis, and a month later it was acute sino-bronchitis. After several antibiotics and medication, the symptoms seem to go away and I had an enjoyable summer.
In September. 1984 the symptoms returned – this time with a vengeance. A friend drove me to see the doctor and they took x-rays. I heard the doctor outside the door ask for another doctor to look at them. They both came in, looked at me and said “you have double pneumonia. You have to go to the hospital NOW (which was next door). I stayed in the hospital for a week and then sent home to recover.
In November the symptoms returned. This time I was referred to a pulmonologist and he did lung tests and x-rays. On Thanksgiving Eve, a day when I should have been standing in the kitchen cutting up onions and sweet potatoes, I was instead sitting in the doctor’s office to get the results from the tests. The pulmonologist walked in and said “Miss Graham, the tests are back and you have systemic lupus erythematosus and interstitial lung disease. My heart sank. I was just 32 years old and it seemed my dreams and goals for the future was over.
I was referred to a rheumatologist who confirmed the diagnosis and began taking high levels of prednisone and visits with the pulmonologist and rheumatologist every 3 months. My symptoms slowly started getting better. One year later, my condition started getting worse and the pulmonologist sent me to the hospital to be monitored. All tests came back negative and I was sent home with a work release notice which extended into short term leave. It was during this time the company I worked sent me a letter and told me they were “downsizing” and I was permanently “laid off”. They gave me my pay for the month and wished me well. I could not go back to collect my things at work – they packed up the few things I had and sent them to me via UPS.
The stress of losing my job/income and housing began to wear on my mind, body and spirit. I had applied for disability income but was initially turned down and when I reapplied turned down again. I was depressed – feeling hopeless and worthless. Compounded on this, I started noticing problems getting up from sitting, extreme muscle weakness, stumbling while walking, difficulty climbing stairs, and extreme fatigue. I went to my rheumatologist. Blood tests and medical history revealed that I had a rare disorder called polymyositis (poly-many, myo-muscle, itis-inflammation). One of the deciding reports to diagnose this disorder is the CPK (muscle enzyme). Normal range is under 100. Mine was over 5,000. He immediately increased the dosage of steroids again, and placed me on other medications.
NIH/NIAMS (Summer, 1988)
For a while the increased dose of steroids were working. Six months later the symptoms returned. Blood tests revealed the polymyositis was flaring. My doctor told me about a double blind study at the National Institutes of Health – Arthritis & Musculoskeletal Branch for Polymyositis and asked if I would go. I said yes. He called the specialist there and sent my lab work and history. Several days later I received a call from them setting up travel arrangements. In June, 1988, I was on a plane to Bethesda, MD.
As soon as I arrived, they processed me and took me to my room. Shortly thereafter the director for the Myositis study came and spoke with me. I would see several specialists and have additional tests. They also sent in a patient care manager who helped me apply for disability again which I finally received.
After all the tests came back, they decided to try the double blind study – white blood apheresis – in which a needle was placed in both arms – in the left the blood would be withdrawn through the needle, run through a machine and go into the right arm. They did this for 7 weeks. After completing the study, they ran more tests. The results were minimal in reducing the muscle enzymes. The specialist did a medical consult with all of my physicians and a week later sent me back home to begin taking an immunosuppressive drug Imuran which later changed to Methotrexate.
The stress of losing a job/career/finances and my apartment sank in. My emotions became raw and after seeing the doctor and telling him I wanted to die, he sent me to a psychologist and I was put on medications. I stopped taking the medication though because I felt I was better. But – again, the depression returned. On a follow-up visit to the rheumatologist, he suggested I contact the Lupus Foundation Support group. I contacted them and the next week I went. I cried all the way there, and arriving late had to stand in the back of the room. They were talking about the effects of steroids and the depression -- I broke down again. They hugged me and told me I was not alone. The facilitator (Kathleen Lewis) was also a psychotherapist, and seeing my teary stained face and pain, she encouraged me to contact her. 3 days later I was in her office hysterically crying. She listened to me and began to tell me what I was experiencing – the emotional toil and upheaval of losing my health, job, home and some friends. Relief began to wash over me – she understood! At the end of our session she prayed with me. That day started my emotional healing.
A NEW LIFE – THE COME BACK
I started going to the support group meetings. This was the support I needed to navigate the maze of living with a chronic illness. I soon got involved with volunteering at the support group meetings. After attending and volunteering at the annual fall Lupus Foundation Summit, I was approached about serving on the board. I said yes and thus began my active service with the foundation for 15 years as Minority Outreach Coordinator and Patient Advocate.
Kathleen invited me to join her in taking the SLESH (Systemic Lupus Erythematosus Self Help) Course with the Arthritis Foundation. Soon after the training we started teaching patients self-efficacy/help at the Piedmont Medical Building.
My volunteer work with the foundation helped me in serving with the Jimmy Carter Brown Cluster Health Committee, board member of the National Black Women’s Health Project, Black Women’s Health Study (Boston/Howard University), National LFA Minority Outreach Committee, and the NIH/NIAMS Task Force for Lupus in Minority Communities. I also received two awards – one from the Martin Luther Kings, Jr. Center for Social Change Certification of Appreciation for my service to the community in raising awareness about lupus and African Americans. The other award was the Lupus Foundation GA Chapter Distinguished Service Award.
Throughout my service, symptoms always fluctuated. In 2009 I had a very bad cough – which was related to the interstitial lung disease. Every day it seemed I was going through a bag of cough drops. During my appointment with the pulmonologist they discovered my oxygen stats were low – 78 (which should have been between 95-100. I was sent home to begin oxygen therapy. God removed the negative conscious feeling of wearing oxygen. As a matter of fact when I see someone else with oxygen, we usually talk and encourage each other.
Three years later in December, 2012), while seeing my rheumatologist and him examining me – listening to my heart, a puzzled look came across his face. He sat down, looked at me and said – I hear a gallop sound in your heart. You need to see your pulmonologist and cardiologist as soon as possible. It’s either congestive heart failure or pulmonary hypertension. He said it 3 times. After several scans, echocardiogram, blood tests and right heart catheter, three weeks later I was diagnosed with Stage 3 Pulmonary Hypertension. I was immediately placed on a specialty drugs which I continue to take today. Five years later during the week of Thanksgiving I was diagnosed with Endometrial Cancer (not related to lupus). Two months later I had robotic laparoscopic surgery with a diagnosis of Stage 1 cancer – no chemo or radiation!
MY TIPS ON LIVING WITH A CHRONIC ILLNESS
I have discovered as most patients come to learn when dealing with co-occurring diagnoses - that living with a chronic illness (for 37 years) has been extremely challenging and stressful. My dreams for a better life came to a halt and the grief over what “I use to do”, and the loss of finances, people, and goals spiraled downward with the “sick & tired of being sick and tired” syndrome. Each reoccurrence of symptoms produced see-sawing emotions – denial, anger, bargaining, depression and acceptance – the 5 Stages of Grief written by Elizabeth Kubler Ross.
Learning to dance with a disability takes intentional effort, determination, grit, and resolve to remain positive and upbeat in the midst of the grieving process, and not let it overwhelm, manipulate or destroy your spirit and life. My capability in living through chronic illnesses for 37 years did not happen overnight. It has taken took months and years of learning how to remain positive - looking at what’s left – the half glass still has something in it, and even if my crayon is broken, I can still color. It has been learning how to pace myself and rest when I need to, strategically plan my activities for the day, prioritize the important vs the urgent, problem solve – who can give support and encouragement, and persevere with patience. My faith has sustained, upheld, lifted and carried me when I thought I couldn’t make it, and holds me as I move forward in disability ministry.
I hope my story encourages you to hold on – don’t give up, keep moving!
Rosemary Graham