I Am a Mother, and Grandma and I Live With Lupus

Thepainfreelife-Grace-LupusI’ve been sick as long as I can remember.  As a child it was constant nosebleeds, gut problems, rashes when I went out in the sun. 

Those things have continued throughout my life, but at times I’ve had other symptoms: hair falling out at one time, random aches and pains absolutely everywhere down to the knuckles of my fingers another time, unexplained pain and bleeding that was only controlled with a hysterectomy at another time, migraines, fatigue.

At different times, I’ve been tested for celiac, diabetes, Bama Forrest virus, Dengue fever, Ross River fever, and pretty much anything else you can imagine. Every test was always negative.

I was 40 years old, newly divorced, with one child in high school one in upper primary, and a full-time job to support my family, when I woke one day to find my left thumb in agony.  A trip to my GP led to xrays and a diagnosis of osteo arthritis.  A week later, with my left wrist stiff and swollen to twice the size of my right wrist and all of the joints of my fingers sore, I went back to the GP and asked if osteo arthritis was meant do spread so fast.

I’ve been sick as long as I can remember.Iris C.

That’s how I ended up at the rheumatologist’s office.  A combination of blood tests and my medical history told him what years of doctors hadn’t known, I had lupus.

The diagnosis led me to find out more about lupus, which was a frightening experience.  It was also reassuring, because once I had been diagnosed, lupus could be treated, hopefully even controlled.

At first the only thing I really cared about was taking enough care of myself to live until my kids grew up.  They’re in their 20s now, but now I have a grandchild, so I guess I need to try to stick around a bit longer.

Nine years after diagnosis, life is not what I had planned or expected.  I really didn’t plan to retire in my 40s, but my health made it necessary.

thefibrobutterflyLife’s not what I planned, but that doesn’t make it bad.  I have limited energy, but I get to use that energy doing things I love.  I write blogs, and have written a couple of books (look me up – I actually have an author page on Amazon).  I get to be with my family – oh, they’re still with me.  We have a duplex: my daughter, granddaughter and my daughter’s partner have the upstairs flat, and my son is downstairs with me, as my carer.  My favourite people are right here with me.  As well as that, the internet, particularly my blogs, have helped me to talk with wonderful people all over the world, who I might never have known.

I didn’t plan the life I have now, but who ever did get the life they expected to have?

I’m a Uniting Church minister (retired through ill health) and a former journalist, in Australia. I have a bachelor’s degree in journalism and literature, and a master’s in theology. I was diagnosed with lupus about in 2006. I’d had lupus symptoms on and off throughout my life up to that point, but no-one had “connected the dots.” In May 2011, when International Lupus Day happened, I joked that the best way to celebrate Lupus was with a handful of painkillers and a long nap. Sometimes, it is Lupus is an attempt at something more constructive – helping to create awareness of my condition. Iris C.

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