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2014 - A "Change" in my Vision

8/18/2016

In 2014, after a massive infection that required steroid drops, my ophthalmologist in the Cayman Islands suggested I seek treatment overseas. He said I might qualify for the new cross-linking treatment that they had in the US.

Excited about the thought of being able to hinder the progression of my disease, I started vigorously researching cross-linking. But right around that same time, I noticed that I increased the zoom on the computer when I was working. I thought my vision was the same, but somehow it felt "uncomfortable".

I didn’t mention this to many people because after having been through so much personal trauma, including unemployment, the last thing I wanted to do was infer that I was having difficulties with my vison that would impact my job. But when I decided to move to the UK in the summer of 2014, my ophthalmologist in the Cayman Islands informed me that I could also seek cross-linking treatment there.

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2001 - Successful Fitting - I Can See!

8/18/2016

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In 2001, after just moving to Riyadh, Saudi Arabia, my husband mentioned my condition to an ophthalmologist he’d met.

Dr. Abdullah kindly invited me to be examined at King Khalid Eye Specialist Hospital where he worked with the latest eye topography technology. I was elated, but concerned.

How we would pay for the exams and contacts lenses?

But Dr. Abdullah assured us not be concerned about that.

A few months later, as Dr. Abdullah, my husband and the children looked on, a female assistant showed me how to delicately insert the rigid Rose K lenses into my huge, almond-shaped eyes. Though extremely uncomfortable, I saw the most vivid images through the tears pouring down my face. Those images felt more clear and detailed than anything I had ever seen. My corrected vision with those lenses were 6/18 (20/60) in my left eye and 6/12 (20/40) in my right. This means that what a normal person could see at 40 feet away, I had to be 20 feet away to see it.

Still, it was one of the best days of my life.

I looked at everything as though seeing it for the first time. Everything looked crisp – like HD TV. In fact, it was the first time I had seen my 1-year-old twins clearly and I stared at them in awe.

My eye problems diminished until 2007 when I was again plagued with such severe infections that I could not bear to wear my lenses.

Discouraged, I again sought out the expertise of Dr. Abdullah who now that his own private practice. The good doctor ascertained that prolonged use of the rigid lenses (RGP) had caused scraping and further damage to my corneas. I then started a ‘piggybacking system’ which entailed wearing two lenses in each eye – soft lenses placed beneath the hard lenses like a pillow for comfort and I continued using the piggybacking method for many years.

Though I had infections on and off, my vision seemed to have stabilised and I resigned myself to a routine that I would have for the rest of my life – wake up, insert lenses, work, remove lenses, sleep.

I also resigned myself to the constant explanations of why I feared water, swimming and going on boats – my lenses started popping out again and I fear losing them in the sea. The other thing I had to explain - why even fresh water and swimming pools posed a danger if harmful, flesh-eating bacteria became trapped behind my lenses.

But most people scoffed at these things and usually retorted, “Then, just wear glasses!”

I never bothered explaining the disease in depth to anyone.

Basically, I just got on with it.

I got on with the drama that was my life - work, children, divorce, traveling, relocating, rescuing, reinventing…

I got on with it all.

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1998 Diagnosis - Keratoconus

8/18/2016

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I was 25 years old and had just moved to Houston with my husband and three small children.

One day, while watching TV, I became increasingly frustrated that the TV was “fuzzy”. Then, I slowly realized that everything was lost in the fuzz and I saw double, ghost images of everything.

I did what most people do in that situation. I rubbed my eyes vigorously, but the images didn’t change.

Yet, the dreadful reality of my situation still did not occur to me.

Not just then.

Later that day it did though.

Later, when I went to do some shopping for the kids. That’s when it happened. When I looked at the price tag and I realised that I couldn't see it.

That's when I realised that I had a BIG problem.

I discussed it with my husband (now ex-husband) and we agreed to get my eyes checked when he returned from his upcoming trip. But while he was away I became more concerned. I felt desperate because I could barely make out the traffic lights.

How was this possible?

How could I see one moment and then have things just “drop away”?

Of course, that's not what had happened.

In reality, I had probably not seen clearly since I was a child. What happened that day with the TV was the final tipping point – when my brain finally registered the gravity of the visual impairment.

The gravity of it – not being able to see – crept up and gnawed at me.

So, while my husband was away, I made the decision to go for an eye exam.

Scared, I slowly drove to a neighbourhood Eye Care Centre with my eldest, Mohammad, just 6 years old, calling out the colour of the traffic lights because I could barely see them.

At the Eye Care Centre, the optometrist examined my eyes, then looked anxiously from me to my children.

“Please tell me you didn’t drive here,” he said nervously.

Why had I driven there?

But before I could stutter a response, he said, “Well, you’re taking a taxi home."

He never actually told me what my visual acuity was on the Snellen Chart and I was so confused, I didn’t ask. He did tell me that I could no longer drive because I had a disease called Keratoconus and that I would have to be fitted with hard contact lenses to even get close to 6/6 (20/20) vision. Worst case scenario, he said I would have to have a cornea transplant, but he reassured me that the condition typically stabilised as patients got older, so that would probably never happen to me.

"I had never heard of Keratoconus before and I became more scared as he explained things like “bilateral, progressive eye disease”, “thinning of the corneas” and “cannot be corrected with glasses”. "

But even as I sat there, I resolved to be strong with the hope that I would eventually be fitted with contact lenses.

I mean, everyone had contact lenses, so how hard could it be?

The optometrists insisted that rigid contact lenses were my best option because glasses and soft contacts would not correct my vision. He told me that without them, I would not be able to live a normal life.

The next few years were very difficult with numerous attempts by optometrists in the US to fit me with rigid contact lenses, but all attempts were unsuccessful. They could not get the spherical contacts to sit properly on my cone-shaped corneas. As soon as I blinked, the minuscule lenses flipped precariously from my eyes.

My life was changing.

Unable to drive, I felt incredibly dependent on my husband and even on my small children for things like reading signs.

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Keratoconus Symptoms in Childhood

8/17/2016

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As a child I suffered from itchy, irritated eyes and rubbed them constantly, which led to reoccurring eye infections like sties.

You know, those small, horrid, painful lump on the inside or outside of the eyelid.

Most people have one or two of them a year, but I seemed to have them every other month.

That was a horrible time for me. It was embarrassing. I didn't want to go to school and it was also very painful. But I wasn't taken to the doctor for that - as was common in the Caribbean in those days, I was treated with herbal medicines.

Basically, my grandmother or my mother warmed a pepper leaf against the lamplight, plastered the pepper leaf with Vicks Vapour Rub and applied the cure-all to my eye.

Then, when I was 9 years old, I also started having terrible headaches. When one headache lasted for three days, my mother decided to take me to an optometrist, assuming I might need spectacles and that eye strain might be causing the headaches.

But back in the 70’s there still wasn’t a permanent eye care professional on my island, so an optometrist flew in about twice a year, providing eye exams from her hotel room. My mother happened to be a waitress at the Buccaneers Inn hotel where the optometrist often stayed, so she took me to see her on her next visit.

I had to wait hours to be seen, but I was intrigued about what would happen inside that room. The room was dimly lit and the soft-spoken, blonde optometrist introduced to be to that famous eye chart. Then, she diagnosed me as being near-sighted and promised to send me some spectacles in the coming months.

I was excited to get my new spectacles at first. But the eye infections and headaches continued and when I started being bullied at school and called “Four Eyes”,

I became discouraged and stopped wearing my spectacles.

I don’t recall getting another eye exam until I was about 15 years old.

By then, my vision had worsened and I was prescribed thicker spectacles for near-sightedness - which of course I never wore.

Because I was 15 and those huge, black-rimmed spectacles were too unattractive.

And because I didn't feel that they helped my vision.

Unbeknownst to me, I had been misdiagnosed. I was slowly losing my sight. Poor vision had become my norm. In fact, I had become so accustomed to poor vision, I did not realize my devastating situation until my vision was horribly impaired.

That happened one day in 1998.

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2014 - A "Change" in my Vision

2001 - Successful Fitting - I Can See!

1998 Diagnosis - Keratoconus

Keratoconus Symptoms in Childhood

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2014 - A "Change" in my Vision

2001 - Successful Fitting - I C﻿an See!

1998 D﻿iagnosis - Keratoconus

Keratoconus Symptoms in Childhood

Author

Archives

Categories

2001 - Successful Fitting - I Can See!

1998 Diagnosis - Keratoconus