Sunday, June 23, 2013

Living with Lupus.

I have not been writing anything about it or even mentioning the word to everyone else.
Maybe I am still coming into terms with it after almost 5 years! Can you imagine, I am in my 5th year already!
So let's see how far I have come.
I have endured a lot of mental trauma from all the hospital visits and receiving bad news, one after another from the doctor, the increase and decrease in medications especially steroids. To those who see me so often, you may ask "what mental trauma?! You always seem well, but maybe a little grumpy, that's all. So what mental trauma are you talking about?"
You don't know how I feel inside.
This excerpt from a book (Despite Lupus) sums it up so well.
"Think back to the hardships you’ve encountered up to this point. Beyond the physical torment caused by joint pain, fevers, swelling, skin rashes, poor circulation, chest pain, headaches, sore throat, swollen glands, photosensitivity, heartburn, mysterious lumps and bruises, dizziness, nausea, infections, kidney, heart and lung problems, you have tolerated enormous mental trauma including: the embarrassment of hair loss, memory problems, and cloudy thinking; the inconsistent and inexplicable nature of your symptoms; the sacrificed activities, the missed little moments and forgone milestones. Consider the effort that lupus has demanded from you to attend to the never-ending doctor’s visits, medical tests, and health questionnaires. (Admit it: those hospital admittance papers and new patient forms can be a major pain, especially when you’re checking off every single box under “Symptoms experienced in the last three months.” You even have to write in a few that they’ve left off the sheet, don’t you?) By anyone’s standards, you’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well."
The highlighted words are symptoms I so often face.
Looking back at the past five years, Lupus has taught me so many things. I don't know how to mention it all here. So often I had to force myself to accept that I am not well and I need treatment as soon as possible. Anything can happen. I may be fine one day and be very sick the next day and I will be 'forced' to see my doctor.
'Force'. As I reflect on this word, I realise that the 'driving force' that keeps me going is God's power. It is truly an amazing thing to know that my sanity in still intact despite of all that is going on inside me. Yeah, I have blamed God so many times...with tears and all. Nothing changed. Lupus is still there....the only difference is that God calmly assures me that one day, there will be no more tears and sadness. All will be well.
Today I am thankful I don't get major flares like how I used to 2 years ago. I have not been on steroids IV drips for so long. Nowadays, admittance into hospital is due to infection. I have not felt extremely lethargic but I still do feel tired sometimes. However, I am experiencing a few complications. I already have scarring in my kidneys which causes slight protein leakage. Thankfully it is not blood protein. There are some retinal changes in my eyes and I have a little cataract. My eyesight has deteriorated a bit and I am considering of wearing specs...soon. My left ear is very slightly blocked and I have a very mild form of sinusitis. I have lost a lot of weight for the past 6 months.
I look well on the outside but thinner...I can still do my daily chores. I can still teach ( and shout ). I can still live an almost normal life.
Not easy you know...
to be always thinking of what might happen next. It's like having a time bomb inside you.
Hope to blog more about this in my later posts.
"’ve done your time with hardship, and you’re an expert at enduring. Now let’s turn to the future. It’s time to strive for more. It’s time to strive to be well."

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