Family Magazine

My Life and Living with Lupus

By Umkhaloodie

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Last year, I got diagnosed with Lupus, specifically, SLE (
systemic lupus erythematosus).

I haven’t talked about it as I wasn’t ready to accept that I had it but now I am.

I have Lupus and it feels good to say it. Why? Imagine living with something for 15 years but never knowing about it, but knowing there is something just not right.

At 15, I got diagnosed with Chronic Fatigue Syndrome, yes, M.E, yuppie flu- I knew myself it had to be more but clinically nothing else was showing up on blood tests except for some inflammation, raised crp and liver enzymes were up the left.
Gradually over the next few years, as my body started to change and I entered adulthood, I began to get even more fatigued, swollen joints, and a general feeling of malaise and pain.
Of course, doctors put it down to a flare up with the CFS, and/or growing pains.

At 19, I lost my sight completely for 6 minutes, after months of testing it was concluded I had Glandular Fever with raised intracranial hypertension. Of course, that was all possible but after months of more testing, doctors suspected more but never gave me any more answers.

Last year, here in Kuwait, I started with a 13 day migraine that slowly led to double vision, blurred vision, floaters and eventually I was bed bound, my stomach was in knots with pains, my head felt like it was going to explode and my whole body ached like I had been kicked over and over.

I decided enough was enough and headed to a neurologist. He concluded ocular migraines. I wasn’t convinced so went for a second opinion. I was given an MRI and MRA, checked for brain tumours, cancer, vasculitis and M.S. The MRI was clear…. I felt like I was going mad.
A few days after the MRI I noticed my balance was completely off, standing to put my shoes on was difficult, I literally couldn’t stand up straight, I was swaying off to one side. Again, I headed back to the doctors and was given betaserc (it helps with balance by working on the vessels in the inner ear). They seemed to work, I definitely felt ‘straighter’ than before.
Not long after I got a tremor in my left hand, it came every now and then but not when I was in a sitting position, only when the actual hand was moving.
I went back to the doctor and had a ton of blood tests done, the doctor asked if I had ever had haemolytic anaemia, I said yes? A few years ago, why?
He said he thought he knew what it was, Lupus. I needed to get at least 4 out of 11 to be diagnosed. I already had 6 but he wanted more proof.
Almost as if God was listening, he helped out. Next morning I noticed my cheeks and nose were red, I looked sunburnt, my skin felt rough, it wasn’t terribly noticeable to others but to me it was. It stayed, it didn’t go and it got worse when I showered. I headed out to get some lighter makeup. (Thank you MAC!)
When I was out, I noticed my left foot was completely numb. This has all gone on just far too long, I thought.
I headed back to the doctors, sat down and he said, ‘you have SLE’. I was happy, I almost cried, it took 12 years for an answer but I finally got it. It isn’t curable but it is treatable, el7umdella.

What is lupus? You can check it out here and here


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