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Christmas Party with Lupus, Arthritis and Psoriasis Patients

Winner of the first "Bring Me" game -- showing her PWD card and her "Bring Me" game prize

My wife has a chronic illness called Lupus (Systemic Lupus Erythematosus - SLE).  After her second major flare up and hospital confinement in our 4-year marriage last May we individually decided to not only accept her 13-year old illness but to embrace it.  "Embracing" rather than simply "accepting" meant not only evading or brushing it aside when she's on remission but to see the condition as a fact in her life, in my life and in the lives of others with similar conditions.  Embracing simply meant being more involved in the lives of other patients because I have seen the past years that she can relate very well and empathize with other patients as they minister to her in return.

I think we both have reasons for avoiding this decision -- maybe for her it's the hope of completely getting cured of this still no-known-cure illness and avoiding the pain of seeing other patient-friends slowly or suddenly passing on to the next life.  For me it's probably the same hope of escaping the constant fear of another impending Lupus flare up and the feeling of helplessness.

Part of embracing is deciding to be more active in attending Lupus clinics and meeting, sharing and listening to other patients so we attended more Lupus clinics at the UST Hospital.  This December we attended the Christmas party at St. Luke's Medical Center.

I was supposed to simply accompany her to the venue and then find my own place somewhere and read a book or two and that would have been perfectly fine for her.  I felt I had to stay and I guess this was part of "embracing" as opposed to merely "supporting" her.



Person With Disability (PWD) Card

My wife won in the first "Bring Me" game when they were asked to bring a PWD (Persons With Disability Card).  There she is on the first photo of this post happily showing her PWD card and her prize, a jar with chocolates (which she can't eat, she's been a semi-vegan since her diagnosis avoiding meat, milk and processed foods).

Please encourage your qualified friends and loved ones to apply for this card in your local city/municipality.  It is similar to the card enjoyed by our Senior Citizens allowing them discounts on medicines, food and transportation expenses.



Mozzarella cheese - her raffle draw prize.  She already knows what to do with this -- Spinach Lasagna

She won another prize.  This time a small pack of mozzarella cheese.  As a semi-vegan she avoids dairy products but she does cook cheese based foods on occasion and I love cheese!  This mozzarella cheese will be used for spinach lasagna.  No meat but I will like it just the same.


Other Patients

She meets new friends during the regular Lupus clinics.  They exchange stories and questions about their symptoms, the medicines they take, the respective dosages, what they are currently doing, and other stuff.  The different physical and emotional pains they face can be very sad.  Some have stopped studying, some stopped work.  Some face rejection.  Both of us feel that some of them would not have suffered as much had they been diagnosed earlier and given appropriate care and medical attention.

If you know of any friends or family who have been diagnosed with Lupus I strongly recommend that you contact any of the following organizations:

LUISA Project (Lupus Inspired Advocacy)

PEARL (People Empowerment for Arthritis & Lupus)

Due to the recent natural calamities in the Visayas they also recently started Rheuma Cares.


Jessica, a new friend Nerissa met in one of the Lupus clinics with her mother .  Jessica won a free make-over during the party.  Lupus patient's have different symptoms, experiences and organ problems.  


Doctors showing patients how to have a good time.


The same happy and caring doctors in the previous photo led by Dra. Navarra during Nerissa's 14 day hospital confinement at the USTH last May.



Go to LUISA Project website




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This is already off-topic but since this is my first and only post on Lupus I just want to mention the importance of nurses in patient care.  The photo below shows Nerissa with Christian, one of the nurses who gave excellent care during her confinement last May.   The pain and unimaginable discomfort of debilitating illness can be more bearable when you have great medical staff.  Christian is one of those who just showed genuine care and concern.  I pray that our country grows to the point where our nurses leave only because they want to, not because they have to.









2 comments:

  1. Thanks for this great article…

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    Replies
    1. Thank you for reading. I hope it helped you in some way.

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Thanks for respecting other readers.

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