My Nonprofit Reviews

MY RLS STORY
Sister Phyllis Hunhoff, OSB
A Benedictine Religious of Sacred Heart Monastery in Yankton, SD
who recently celebrated 70 years of religious profession.
August, 2022

It was about four years ago that I awakened with RLS. After a fall (with unknown pneumonia) and four days in the hospital and a severe sciatica which needed a cortisone injection, my life changed with RLS. The early RLS medication regime was started. In two years, it became worse and augmentation had begun. It was probably about that time that I began my own research and found the RLS Foundation.

I have had the benefit of many of their publications. The Patient Symptom Diary gave me new insights into what was happening on a daily basis. I have spoken with many others with RLS through the Foundation Support Groups. I spent one entire Saturday listening to RLS physician specialists who have confirmed and highlighted important aspects about one’s daily life. I have looked forward to the newsletter, watching for what may be significant for my life. It was through another patient story that I learned of methadone, being used by a woman of advanced age, which is now a preferred medication. From taking it all at one time, I now space the same amount of medication over 5 hours (4pm – 7:30 pm and 9:30 pm). An article from the RLS Foundation inspired me to have a consultation with a hematologist. I have now had four iron infusions.

Many triggers have come to light which have brought new relief. For me, all foods with sugar and curry spices have been recognized. I now know that too much exercise increases my symptoms. However, walking is my companion during the night, anywhere from three to five times up, with varying lengths of time and distance to relieve the pain and jumping. Not only does the pain come to my legs but it also comes to my arms and hips. However, a therapist has designed a program for me based on a recommended regime from the RLS Foundation. As a Benedictine religious who is dedicated to the Liturgy of the Hours four times a day along with Holy Mass, I alternate walking and using an electric wheelchair through the long halls, to avoid too much exercise.

My monastic charges and pastimes, have been varied bringing the distractions necessary to give me some relief. During the two years of Covid, I became proficient in making Crepe Paper flowers. Today, I am into large difficult picture puzzles and just finished a three-dimensional puzzle of Big Ben.

The RLS Foundation Medical Alert card is in my purse and readily available at any change of medications. My doctors and nurses have been and will continue to be the recipients of this continuous new knowledge.

All of this has brought some relief and I am grateful that the RLS Foundation is continuing foreword for all of us.