Tag Archives: Scleral Lenses

Keratoconus & Topographies

Standard

image

I found these topographies from 2008 showing my corneas affected by Keratoconus.  I wonder how they look now 7 years on.  I reckon it would be really interesting to see updated ones.  The way my eyes feel I think they would look pretty different.

I remember the day these were taken, my partner and I (who also has KC) took part in a study by a university in Brisbane.  They put us through a whole heap of tests to gather data and do research and hopefully help keratoconus patients in the future.

Keratoconus is an invisible disease, it can affect your life in so many different ways but no one knows that you have it.  That can make life so difficult as it can make us behave in ways that can make us look a little odd to non KC people.  People often get the blank stare from me as though no one is home because sometimes it takes me a while to process what I am seeing.

My uncorrected vision is 20/450; legal blindness is 20/200 so my vision is really bad.  With my lenses in I have normal vision (according to the Snellen chart) but I still reckon we see things differently to people with normal eyes.  Only a person with KC would understand that.  I remember one time when I was younger I was calling my cat in from outside.  I was calling and calling and she wouldn’t come in so I walked over to get her and it turned out to be an old chunk of tree truck – not my cat at all!  That’s the sort of thing that we deal with on a daily basis.

I think people with KC miss a lot of detail.  Up close vision is pretty good but distance is hopeless, even with lenses in I don’t see the stars in the sky, the pretty flowers on trees, and the beauty of the colourful Aussie birds.  I see smudges of muted colour not an actual object.  I don’t know what it is like to see crisp clear images it has been so long I have forgotten. 

I am longing for the day when they can do full eye transplants.  That would be so amazing to get a brand new pair of eyes.  Ones that are not always tired and sore and struggling to see.  I wonder how long in the future that is.  In my lifetime I hope because I want them bad!

Advertisements

A Very Unhappy Eye!

Standard

PSX_20150511_130708

I will keep this one short because I’m not feeling the best ……

Saw my eye doctor this morning.  The scleritis is still very active in my left eye so they gave me another injection.

It has made my eye look like a mess, my sclera is now completely dark blood red and swollen and so painful.  It looks like it is going to explode.   No chance of getting a lens in that eye today so I am feeling all crooked and uneven because I can only see out of one eye.  Makes working tricky!

Hopefully this injection will do the trick and calm the scleritis down.  I’m currently on Methotrexate, Prednisone, Predforte drops, and now this latest injection.  Surely something has to get it under control soon.

I spoke to my doctor about the sensitivity and photophobia and she feels that it is bad because the scleritis is active.  Oh joy, so that won’t change until the scleritis clears up.

Gotta love that roller coaster that I keep on riding!

An Eye Injury – Ouchies!

Standard

PSX_20150509_100739

A couple of days ago I was taking my scleral lens out and scraped it across my cornea by mistake – Man it hurt!

I have got very delicate corneas due to the keratoconus which has made them thin and liable to easy damage.  As you can see here there is some bleeding under the cornea at the point where I scraped it.  My eye is still a little bit red from my scleritis flare up too so right now my left eye is not very comfortable.

Bleeding in the cornea like this is called Hyphema and it is a collection of blood in the anterior chamber between the cornea and the iris.  Already it has started to be absorbed so it wasn’t too bad an abrasion, although I have grazed my cornea before and never had it bleed so I must have hit it pretty hard.

I am seeing my eye doctor tomorrow and have a couple of things to discuss that are a real problem for me ….

Since I got scleritis my eyes have become ultra sensitive, I can hardly bear to wear my lenses, I am in pain all day every day unless I take painkillers which just take the edge off of it..  I am hoping that he has some suggestions regarding this sensitivity. This is a really big deal as I have to wear my lenses to have any type of quality of life as I cannot get any vision in glasses.  Without my lenses I can’t drive, work, read, watch TV, go shopping, in fact I can’t do anything.

The photophobia is a killer, I have to wear two pairs of sunglasses to go outside and even then my eyes are so light sensitive I can hardly stand it.  In the bright Aussie sunshine this too is a big deal.  Driving to work in the bright morning light is horrendous.  By the time I get to work I am really stressed and my eyes are killing me.

As you can see I still have a way to go until my eyes are fixed.  Well they will never really be fixed but I hope that we can make them better than they are now.

I am longing for the day when they can perform full eye transplants.  It would be so great to get rid of my diseased ones and get a new pair. With technology the way it is, that’s got to be close don’t you think?   I can cope with having the keratoconus, it is the scleritis that has really hit me hard so roll on the day I get those new eyes!

My Crazy World!

Standard

fitovers

So this is how crazy my world is right now …..

I wear contact lens so that I can see, I wear glasses over the contact lenses so I that can see better, I wear sunglasses over the glasses and another pair of sunglasses over the whole lot!

The photophobia is so bad the only way I can get myself out of the house in the morning to go to work is to wear two pairs of sunnies, totally crazy right.

It was my partners bright idea to wear two pairs of sunnies and it really did make a huge improvement.  Still a bit glary but so much more comfortable, I could actually drive with my eyes fully open!

Eyes are looking a little better as they are not so red but they still hurt.  Since I got the scleritis my eyes are much more sensitive and I am struggling to wear lenses.  By the end of the day my eyes are so over having those plastic discs shoved in them for extended periods.  Not much I can do about that though, with the keratoconus I have no option but to wear lenses as glasses on their own don’t give me any useful vision as my cones are just too steep.  Wonder what options I have for not wearing lenses?  Probably just corneal transplants, then I still might have to wear lenses, no guarantee I could just get away with glasses.  Will need to speak to my eye doctor about that.

What I need is for the doctors to perfect a full eye transplant, which would be amazing.  I wonder how many years away that is?  Think I would put my order in for a pretty pair of blue ones!

In the meantime I will continue to battle onwards as I sure as hell won’t let this thing beat me!

Keratoconus – The Big Fight

Standard

Dawn_LE_TOPO

Keratoconus has really shaped my life, to an extent it has dictated what I can and can’t do.  Generally I don’t let it bother me, but thinking back when I was a kid I wanted to be a vet.  Because of the KC I didn’t do great in school, I tried my best but it’s hard when you can hardly see the words written on the blackboard, or read a text book without it being an inch from your face.  We all want to fit in and not stand out from the crowd so I pretended that I was like everybody else and blagged my way through school.  Now I have scleritis too and my eyes are in pretty bad shape I am feeling nostalgic and thinking about the past.

I remember when I was around 12 years old; I asked my dad what the time was because I couldn’t see the hands or numbers on the clock on the wall …. Actually I could barely see the clock.  He assumed I was stupid and couldn’t tell the time.  That moment really sticks in my head.

I struggled all through school and into my late teens wearing glasses that did nothing for my vision.  No one seemed to understand that I couldn’t see through them, everything was still blurred and doubled with streaks and starbursts.  People with advanced KC have really crazy uncorrected vision.

I couldn’t learn to drive until I was 19, the day I got my fist pair of RGP contact lenses was the best day of my life, suddenly I understood what it was like to really be able to see.  I went straight out and booked driving lessons.  After seeing nothing but muted blurs for my entire life I could finally see colours and shapes, the leaves on the trees, the number on the front of the bus, the expressions on people’s faces.  So many times I had walked past people in the street simply because I didn’t see them, they must have thought I was so rude, but I just didn’t see them.

I couldn’t stop staring at things, anything and everything it was so fantastic, things were starting to make sense.  It was like I had missed the first 19 years of my life.  That is so sad, it wouldn’t happen nowadays, parents would be all over their kids eyesight at the remotest possibility that something was wrong.

Pretty soon the RGP lenses stopped working for me; they would just drop out because my cone was too steep.  I remember one time sitting in a meeting at work and both lenses dropped out and rolled across the boardroom table.  After losing a heap of them it was time for a new plan.

I was thinking about a corneal graft when I discovered scleral lenses.  Scleral lenses are huge, the first time you see one you can’t imagine that it would fit in your eye but they do and they are very comfortable.  They vault over the cornea and sit under the eyelids so they can’t fall out.  Prior to insertion you fill them with saline which creates an artificial lens to look out of.  They worked really well and stopped me from having to have transplants.  The first couple of months of wearing them I had a real phobia about taking them in and out, as they really are massive.  It was something that I had to work really hard at overcoming if I wanted to wear them successfully.  They really made it so that I could live a normal life.

scleral-lens

Now many years on I feel like I am facing transplants again.  My optometrist can only get my vision so good in lenses and I have to wear glasses over the top for driving and distance.  The scleritis has made my eyes very sensitive and it makes my lenses very uncomfortable.  I have spoken to my ophthalmologist about my options.  My eyes are too far gone for either intacs or corneal crosslinking so grafts are the way forward.

Just one more hump in that roller coaster called life, wonder where it will take me this time.