Lupus SK Society Inc.

Working together to conquer Lupus - 1 in 1000 persons in Canada have Lupus

A Proud Member Organization of Lupus Canada

Darleen Lange’s Personal Story

As a child I spent many hours quilting and doing embroidery work with my grandmother.  "The back must be just as pleasing to the eye as the front," she would admonish me once again. When I argued that it took too long she would look me in the eye and say, "Girl, people never ask how long it took, they just ask who did it."  This became my mantra to live by.

As a teenager I watched as two of my maternal uncles suffered the pain and deformities caused by rheumatoid arthritis, and a third endured the ravages from Lupus.  I guess it was no surprise to me when, in my late thirties, my hands started to swell and become very painful.

After my body rejected the current NSAIDS of the time, I was referred to a rheumatologist, named Dr. Markland.  A series of blood work showed a positive test to Systemic Lupus Erythematosus, so I was put on Plaquenil (hydroxychloroquine) and within a short time Methotrexate was also added.  Even though it was over thirty years ago, I still remember the ophthalmologist taking my hand and saying, "Darleen, I'm so sorry you have Lupus!"

 

I always felt my lupus was a non-issue as my hands, and wrists, continued to cause me my main problems.  Tissue samples from my fourth wrist surgery confirmed Seronegative Rheumatoid Arthritis. Because my body loves to chew up my cartilages, and fuse my bones together, I have endured nine surgeries on my hands and wrists.  As my right hand deteriorated, I learned to write with my left hand. After replacement of the four large knuckles in my right hand, I could again write and renew my love of quilting (unfortunately hand needlework is no longer an option). 

While attending  Dr. Markland's garden party last summer I was inspired by the array of color and variety of flowers.  By using a variety of flowered fabric samples I designed a quilt using the Asian Scrappy Road Pattern. Then, while sitting in a wheel chair this past winter because my body decided to do the chew and fuse thing in my left foot, I sewed the quilt for the Lupus SK Society. 

My lupus and rheumatoid both run hand and hand in my body with both diseases over-lapping at different degrees, often depending on the time of the year, pressure changes, and how much my body decides to try my patience. I face these challenges as they come, and when I get frustrated because it has taken me 25 minutes to have a simple shower, I can hear my grandmother's voice saying, "Girl, people never ask how long it took......"