Finally for the first time in over 2 years I am pain free from scleritis (eye pain). That is amazing and down to the Cyclophosphamide I started taking about 4 weeks ago. The first week I felt terrible, really nauseas then I came good and felt great for a couple of weeks. I was thinking this is brilliant, then in week 4 I am getting light headed, dizziness and fatigue. It’s worth it not to have that awful horrendous eye pain!
Assuming my bloods are ok when I go back to the rheumatologist in 3 weeks I can move on and start thinking about my corneal transplants and where I need to be to be able to have my surgery. I have severe corneal neovascularisation, the vessels I have are big and deep and there are plenty of them. They are not ghost vessels either, they are still active and blood filled. I can’t have my surgery whilst they are active as the graft would reject. In my doctors words “it would be a disaster”. One positive thing, in my eye check-up last week my doctor felt like there were less vessels in the right eye and maybe the Cyclophosphamide has got rid of some already. I hope so that would be amazing.
I had two wishes, 1 was to get rid of the pain – check! and 2 was to be able to see properly. So I am halfway there! Point 2 is going to be harder to achieve, every time I see my eye doctor I’m like can I get my graft yet and always the answer is no. Hopefully one day soon I will get a yes. I am so desperate to improve my vision, I really struggle in particular at work reading my computer screen. Some days are really awful and I can hardly see a thing.
I know having a graft doesn’t automatically guarantee good vision but it’s surely got to be better than looking through a forest of blood vessels, even if I have to wear a lens on it I will be ecstatic.
Keeping my fingers crossed that next time I get a check up even more vessels have melted away.
I have two hobbies, colouring and reading, I adore them both. Had some treatment on my eye for my scleritis earlier in the week as I am having a very painful flare up. The whole right side of my head was throbbing.
Anyway i’m a bit too sore to colour and my vision isn’t that good this week either so i’m going to read. I would literally die if I couldnt read so lets hope I never go truly blind! I love my kindle so much, when i’m having bad vision I can make the text huge if I need so I can still read.
If i’m reading or colouring my wellbeing is good
I’m feeling a little bipolar today, that means my mood could go either way. At the moment I’m sitting on the fence, thinking.
Thinking is always my downfall, I should just let things run their course and go with it, but no I have to be thinking all the time. It is quite exhausting as I can’t shut my mind off and relax.
So what am I thinking about?
Thinking about my daughter a lot. I spoke to her this morning (she is in the UK going to college). She is 18 in a few months, still my baby but she sounded so mature and grown up. A far cry from the wild and angry teenager we waved off at the airport last June. Wow she has been gone a year already, and that year has obviously been good for her personal growth. I’m happy that she is happy.
Thinking about the future of my eyes. Will they improve any or just get worse? They don’t seem to be getting any better which is really worrying. My night vision has deteriorated so how long until my day vision goes too? I’m really worried about that. Sure the pain is horrible but it’s my eye sight that I am really worried about.
Thinking about my job. Nobody’s job is secure in this current climate, what if I lose my job? Who on earth would give me a job with my eye problems. No one, that’s who. That’s worrying me a bit too.
I feel like everything is out of my control and I don’t like it. It feels scary because I don’t know the outcome of my worries. All I can do is wait and see what happens. I need to take a chill pill and settle down! Maybe get in to a new book at some point today (lunchtime?) to take my mind off it.
Lets just wait and see what happens and deal with it then aye.
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!