PEARL FORUM: “Living well with arthritis and lupus”
10 March 2013, St. Luke’s Medical Center, Quezon City
By Cheryl Anne D. Tan & Joseph Patrick N. Patricio
The first PEARL (People Empowerment for Arthritis and Lupus) Forum for the year 2013 happened last 10 March at the 14th floor, Cathedral Heights Bldg of the St. Luke’s Medical Center, Quezon City. There were 67 participants consisting of 20 patients with Rheumatoid Arthritis, 13 with SLE, 3 with Psoriatic Arthritis, 8 with Osteoarthritis and 23 caregivers. Dr. Joseph Patricio, a USTH Fellow, hosted the event, and the participants were divided into 4 small groups. Rheumatology fellows were assigned topics to discuss on each group as follows:
Physical – Dr. Michael Thomas Salvador & Dr. Cheryl Anne D. Tan
Psycho emotional – Dr. Catherine Macapagal, Dr. Joseph Patricio & Dr. Marica Lazo
Social – Dr. Jennifer Payte & Dr. Kathleen Geslani
Spiritual – Dr. Joseph Consignado, Dr. Agatha Saquing & Dr.Stamen Tupas
The fellows stayed with each group for at least 20 minutes and rotate onto the next group, asking the participants to share their thoughts and experiences in terms of the physical, psycho emotional, social and the spiritual aspects of their diseases. Dr. Michael Salvador gave the summary of what the participants shared during the forum, especially in terms of the limitations brought about by the disease. He also mentioned the different coping mechanisms adopted by the patients for a better quality of life.
For the physical aspect of the disease, the following were the activities that the patients claimed that they are unable to do now, or they do with limitation, with the onset of their disease: household chores such as cooking, cleaning and taking care of their children; difficulty in opening doors, bottles and cans; and climbing up the stairs. Oftentimes, with these limitations, their occupation/profession is affected and they are unable to do what they used to love doing or engage in sports or strenuous activities. For these, their coping mechanisms include asking for help, seeking consult from our doctors, support from family members, loved ones, and friends (PEARL, arthritis and lupus clubs), exercising and using assistive devices.
When the patients were asked how they are (psycho emotional), they were prompt to say “I’m okay...still with pains...still coping...and still surviving.” The patients claimed that the help that they need most now are PRAYERS, financial support especially with the medications that they are taking, the friendship and company, and a helping hand, and a lending ear. Their coping mechanisms include asking for God’s help, always having a positive outlook in life, and diverting their attention through recreational activities making them productive despite the disability.
For the social aspect, the participants mentioned all the important qualities that a patient has, and these include being honest, sincere, dependable (companionship, always present in times of need), loyal, humble, open-minded, being able to empathize with others (can relate to other patients), being patient, selfless and thoughtful.
On the spiritual aspect of the forum, the participants were a bit emotional and shared that at the onset of the disease, most of them asked the question, “Why me?” They expressed anger towards God, with difficulty in accepting the disease, not knowing what to do and how to cope. Most even went into depression. However, with the support that they get from the significant people around them, they learned to accept things one at a time. They sought help by praying, and making it as the strongest weapon against the disease. They learned to surrender everything to God, bearing in mind that He does not give us anything that we cannot handle.
Simultaneous with the forum was also a rummage sale prepared by the organizers which was very much enjoyed by the participants as very cheap but useful items were on sale. Song numbers were also prepared by the patients, and an impromptu dance number both by the patients and the doctors was also presented. At the end of the forum, everyone sang the beautiful song, Precious Gem, arranged by Ms. Catherine Zulueta, also an SLE patient.
It was indeed a heart-warming experience, seeing the patients walking, dancing, singing, and most of all, smiling. The activity brought us to the realization, that no man can bear life’s challenges alone, but there are various ways of coping because there are always people willing to help, and things that can be used as means to make life much more bearable and easier to live with.
Rheumatology fellows facilitating the discussion
Rummage sale by Dr. Galdones, Maam Louie and Kuya Ace
Community singing of “A Precious Gem” led by Ms. Cathy Zulueta & Dr. Galdones
PEARL GOT TALENT!
Summary presentation of the Living Well sessions presented by facilitator Dr. Michael Salvador and “Living well” authors Robelle Tanangunan and Dr. Sandra Navarra
Photos by Drs. Stamen Tupas & Agatha Saquing