SLE Awareness (Thoughts from an SLE patient)

Ice buckets are not necessary heh.

I would rather you have some ice-cream instead. 😉

Illnesses aren’t things we deliberately read about out of curiosity or interest (unless you’re a medical student/in the medical field!). You are only motivated to learn about a disease or illness if you’re a victim to it, or someone you love is a victim to it.

Since I am an SLE patient, I’ll do my little part in the cyber world to raise awareness about SLE, also known as systemic lupus erythematosus or lupus in short.

SLE is a systemic autoimmune disease (or autoimmune connective tissue disease) that can affect any part of the body. As occurs in other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage.

SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remissions. The disease occurs nine times more often in women than in men, especially in women in child-bearing years ages 15 to 35.

There is no cure for SLE. It is treated with immunosuppression, mainly with cyclophosphamide, corticosteroids and other immunosuppressants. SLE can be fatal.

SLE is one of several diseases known as “the great imitators” because it often mimics or is mistaken for other illnesses. Deaths, therefore, often occur due to misdiagnosis.

Common initial and chronic complaints include fever, malaise, joint pains, myalgias, fatigue, and temporary loss of cognitive abilities.

This has been pressing in my heart of late, as I hear of more SLE cases within wider circles of friends, of whom, some have not survived.

But just today, a colleague of mine related about her friend who also suffers from SLE but is now happily married and blessed with a child.

Maybe this presses more in my heart also from the serious consideration of marriage and possibly, motherhood.

This also weighs on me heavily as I consider the well-being of my caregivers. Namely, my parents and eventually my husband.

Being sick is hard.

But caring for the one whom you love who is sick, is just as difficult. Or more difficult sometimes, maybe.

Chronic pain is exhausting to the body, mind and emotions.

I am grateful for the love and support of my family, friends and church.

But at the end, it is the GOD factor that has kept me going.

He is the unshakeable Rock. The Love that never fails.

When I stop clinging on to Him, then I begin to realise, that it’s Him that’s kept me secure all this while. An infant clutches hard to his mama, feeling secure thinking it’s the tightness of his grip that grants him safety, not realising that his true safety lies in the steady arms of his mother!

He has not let go of me all these while, when I falter, when I despair, when I’m tempted to give up…

He does the keeping.

To rely on my own ability to muster/churn up faith would be a hollow and shaky faith. Having faith in my “faith” is idolatry.

My faith is in the Faithful One who remains faithful even when I am faithless!

Living with SLE (or any illness/chronic pain) is trying.

But I rest in His grace.

The grace that will lead me Home is the same grace that will walk with me each step of the way until I have finished the race. (2 Tim 4:7)

This leaflet I chanced upon in Coffee Bean today sort of inspired this post as well. Hurrah for Coffee Bean & SLE awareness. :D

This leaflet I chanced upon in Coffee Bean today sort of inspired this post as well. Hurrah for Coffee Bean & SLE awareness. 😀

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3 thoughts on “SLE Awareness (Thoughts from an SLE patient)

  1. Hi Rachel. I heard about you and SLE from Grace and Ben ages ago. We were diagnosed I think about the same time and I just wanted to encourage you- do not fret about conceiving with lupus. I did but the Lord we serve is great. After about 2 and a half years of marriage, we conceived, not trying for that amount of time, but waiting on the Lord for the right time, which He had always assured me it was. It was I who doubted and there you go, when I was brave enough, I let God have the control and we conceived within the first month. Doctors here do not believe it. My consultant refused to say congrats until the 12 weeks had passed. What is impossible for men is not for our God. â˜ș Have a brilliant wedding and an even more brilliant life ahead!

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