Friday, 19 December 2014

Acanthamoeba Keratitis Blog 4 (19/12/2014)

  • 69 (huhuhuhu) days since first symptoms. 
  • 54 days until expected clearance date.

Apologies for not making a post in a while. I was busy.......... being not arsed. COLLEGE. ASSIGNMENTS. EXAMS. BIRTHDAY PARTIES. STANDARD PARTIES. I am justified. I've been doing things! What's that I hear you saying? "But Jamie, you have a horrible eye disease that would stop you from doing all those things!" AHA that brings me straight to the point: MY EYE IS FEELING FANTASTIC!!!

Now, it's not 100% just yet. But it's definitely getting A LOT better. The last few weeks have seen a vast improvement. There is now more white in my eye than red, so much so that it pretty much looks normal. It looks like what any person's eye would look like if they were tired. Needless to say, I am delighted that my eye has been showing such improvement (KNOCK ON WOOD). I'm optimistic (or should I say opticmistic HUHUHUHU), but cautiously optimistic. There is always the risk that it could flare up again. It would be just my luck that just as it's getting better, it would suddenly flare up again and make shite of my eye. So, if anything, I'll just try to enjoy it while (or if) it lasts. If this whole experience has taught me anything, it's to appreciate every moment. Cuz things can go to shite so easily.


Top picture is from the 14th of October, just a few days after I'd been diagnosed. The bottom picture is just from a few moments ago. The eye-lid is still a bit droopy, but you can see that it is waaaaaaaaay less red.

I know I say this every post, but I am so incredibly lucky that it wasn't as bad as it could've been. I remember reading the horror stories when I was first diagnosed, and how much fear and anxiety that put into me. Stories about people having to get several cornea transplants. Or even having their eye removed altogether. Stories of people fighting this disease for years of their lives. The fact that I am two months in and am already seeing light at the end of the tunnel, is nothing short of a miracle. I am just so incredibly grateful for that. OK. ENUF OF DA MUSHY SHITE.

I'm still on Brolene 0.1% (which oddly enough has started stinging like a bitch since my eye has gotten a lot better) and PHMB 0.02% four times a day each. Steroid drops have also been added into the mix. These do nothing to fight the infection itself, it's just there to accelerate the healing of my eye.

Ok. Well that's it for the moment. Happy Christmas!

Saturday, 22 November 2014

Acanthamoeba Keratitis Blog 3 (22/11/2014)

  • 42 days since first symptoms. 
  • 81 days until expected clearance date.
It should be noted that the above is just an approximation. There is no guarantee that I'll be all better in 81 days, fact recent trips to the eye doctor seem to suggest that it'll be much longer. Thems amoebae are fuckin stubborn bastards. The above is just something for me to work towards, something to keep me going and give me hope. Even if it's false hope.

 So ya, it's probably gonna be a while before I'm 100% again. The doctor said that although I am over the worst of it and that I have made significant progress in recovery, that there are still some stubborn pockets of amoebae in my cornea. And they are just not budging. That's my progress in the last two weeks in a nutshell. There's not much else I can update ye on.

That said, stubborn pockets aside, my eye has seen improvement. Very slight improvement, but improvement nonetheless. Every week it gets a tad little bit whiter and less red. I am also at the point where my eye is more often open than closed, which is good. Especially considering it had been closed for nearly an entire month. Eyedrops are still the same. The doctor had mentioned starting me on steroid drops, but we ultimately decided against it. The steroid drops wouldn't actually help with the infection, it would just speed up the healing of my eye, making it look whiter and stuff. But the risk is that the acanthamoeba would continue to linger and potentially get worse and take longer to get rid of completely. I'd rather have the infection gone completely sooner rather than have my eye look less disgusting but be at higher risk. It's the better choice in the long run.

FEELINGS. How am I feeling? Grand to be honest. I had sorta freaked myself at the beginning of this, but I've largely gotten over it. With my eye being open most of the time now, I'm less self-conscious about how I must look to others. The thing for me to remember is that it's only gonna get better and better from now on. Knock on wood. I shouldn't have said that. Somethings gonna go wrong now. NO. FUCK THAT. THAT'S THE WRONG MENTALITY. I WILL GET BETTTTTTTTEEEEEEER.

But yeh. That's it really. I'll update ye again in a week or two or whenever I'm arsed. In the meantime, here is a vidja I made:

Saturday, 8 November 2014

Acanthamoeba Keratitis Blog 2 (8/11/2014)

  • 28 days since first symptoms.
  • 95 days until expected clearance date.
Hello. Week 4 of this disease has just gone past, so I'm nearly a month in. AND. I. AM. FUCKING. SICK. OF. IT.

But. I'm doing ok. Again, I need to emphasize how incredibly lucky I am. Reading other accounts of this disease, it is around this mark where the incredibly excruciating terrible horrible pain is supposed to kick in. But luckily, I have no pain. This is due to how early mine was diagnosed, and how quickly I was given the correct treatment. Again, many thanks to the wonderful doctors and nurses at Limerick Regional Hospital. In particular, Dr. Jeremy O'Connor, who has been absolutely fantastic. Reading all the accounts of the disease, I got myself all worked up thinking I had immense pain and corneal transplants ahead of me. But he put my mind right at ease, and assured me that I had largely been spared of these consequences due to mine being diagnosed so early. He did say there is a VERY MINOR chance I would have to get a corneal transplant. We'll cross that bridge when it comes to it. Even if that does happen, at least the silver lining is that I could end up with two differently coloured eyes. I'D BE JUST LIKE DAVID BOWIE.

SO HOW IS MY EYE. It's slightly better. Some white has started to return, and the sensitivity to light has eased off slightly. I've even, quite courageously, OPENED MY EYE a few times. AND TO ALMOST NO PAIN OR EXCESSIVE DISCHARGE. almost none. So, again, I am incredibly lucky. It could be SO SO SO much worse. Google Acanthamoeba Keratitis, and you will be given a plethora of horror stories. There's a part of me that's a little afraid that maybe it's all still ahead of me, the horribleness. But that's just paranoia. And it's best to avoid paranoia in this situation. It's a slippery slope.

As for my eyedrops, I'm still on the same stuff. Getting a hold of the Polihexanide 0.02% has been a bit of a pain in the arse, lots of paperwork cuz it has to be ordered in especially from the UK. I had to fill in a special form for the HSE so that I don't have to pay €140 for it. BECAUSE FUCK PAYING €140 FOR ONE FUCKING BOTTLE OF EYEDROPS. Sorry, I keep shouting in this blog. I'M JUST SO FULL OF RAGE. Also, apparently the factory that makes the Polihexanide 0.02% EXPLODED. IT FUCKING EXPLODED. WHAT. srsly, wots goin on? lol

Feelings. How am I feeling? Better. I've sorta stopped giving a fuck about the fact that I look like a squinty one-eyed weirdo to everyone. Because there's not much I can really do about it, it's just the way things are and I have to deal with it. An interesting thought occurred to me the other day. I remembered when I was little, about 3 or 4 years old, an ad came on telly, a charity add, talking about how African children are getting bacterial infections in their eyes making them go blind, accompanied with graphic imagery of the children's eyes. This fucking terrified me, sent me into hysterics as a child. I remember just hysterically crying in my mother's arms, and her telling me not to be afraid because it would never happen to me. But here I am, with amoebae having invaded my cornea. Amoebae that have been known to make people go blind. The thing that scared me so much as a child is actually happening to me.

Talk to ye next week.

Thursday, 30 October 2014

Acanthamoeba Keratitis Blog 1 (30/10/2014)

Hello there!

This blog has remained mostly untouched since I started. This is because I'm fucking boring and I don't really have much to talk about. Two weeks ago, however, I was diagnosed with a rare eye disease called Acanthamoeba Keratitis. This occurs when amoebae invade the cornea of the eye. I'm gonna be blunt, it's fucking awful. Really, really fucking awful. So, to help me cope with it, I thought it would be good to re-purpose this blog to act as a week by week documentation of how I progress with the disease; whether it gets better or worse, what medication I'm on, how it's effecting other aspects of my life, so on and so forth. Seeing as I am three weeks into this disease, this first blog post will cover those three weeks.

I have been a contact lens wearer for about 3 years. I hate the way I look in glasses, and I always have hated the way I look in glasses. It was only inevitable that I would start wearing contact lenses. I mean, WHAT COULD POSSIBLY GO WRONG?!?!?!?!?!?!?!?!?! For the longest time, nothing did. But on Saturday, 11th October, I GOT A HEADACHE. Nothing too unusual. It was focused in my right temple. I didn't really pay much attention to it.

The next day the headache turned into a pain in my right eye. Again, nothing too unusual. As a contact lens wearer, I was used to occasionally getting a sore eye from taking out a contact lens awkwardly or something. When this would happen, it would usually be gone the next day.

Alas, the pain persisted. And it got more and more painful as the days went on. It got to a point where I couldn't ignore it anymore. So, on Tuesday, 14th October, I went to an optician, who then referred me to Limerick Regional Hospital. At first, it seemed to be just a bacterial infection, nothing too serious. I heard the doctors mumble some big words to each other... acanthamoe...somethingorother. I didn't take too much notice. They told me that they needed to take scrapings to test for this thing, just to be safe, but that it probably wasn't it. They gave me a prescription for some eyedrops and painkillers and sent me on my way.

Thereafter, things seemed to get slightly better. I was certain I was on the mend. Oh, how wrong I was. On Friday evening, 17th October, I got a phone-call from the hospital saying that the scrapings had come back testing positive for Acanthamoeba Keratitis. They told me I had to come into hospital to begin an intensive routine of eyedrops. And I just shit a brick. Luckily, my lovely friends were there and they got me a taxi to the hospital and food and made sure I was a-ok.

At this point in time, I had no idea what canthermeber kerastis, or whatever it was called, was or what it meant for me. I didn't know if they were gonna have to cut my eye open or what. I was in a bit of a state on my way to hospital. But the doctors and nurses at the hospital, for the entire time I was there, were incredibly kind to me. They calmed me down. I learned that I would have to stay in the hospital for the next few days while having eyedrops given to me every half an hour. This was tough, as I wasn't able to get a proper nights sleep for 3 days. But it was for the better.

I was let out on Monday, 20th October, and put in charge of my own eyedrops. Mydilate 1.0%, three times a day; Brolene 0.1%, every hour; Polihexanide 0.02%, every hour. I learned more about the disease itself. It's incredibly rare, only a handful of people in Ireland get it every year. I am one of those lucky few. That said, I am incredibly lucky. As awful as it seems right now, it could be a hell of a lot worse. With me, they got to it early. A lot of the time people are diagnosed a lot further into the disease's life. This means it is A LOT more painful for them and takes A LOT longer to cure. For me, it'll take about 3 to 4 months to cure. People who have a more advanced version of the disease can take up to a year to cure. That said, I know this is just an estimate, and I'm mentally preparing myself for it to take longer. But I am grateful that's not any worse than it is.

It's taken a toll on my college work. It's difficult to concentrate, and my work has suffered as a result. But I am trying to keep up. Social life is out the window for the time being, but that's ok. I'm more concerned about failing college to be honest. That's my biggest worry right now.

As for the state of my eye right now, it's very red. Very, very red. It's pretty much permanently closed. Not much pain, but a definite sensitivity to light. Which again I am grateful for because other cases have been described as incredibly painful. If anything, this is effecting me on more of an emotional level than a physical one. I don't like leaving the house, mainly because it's too bright outside for my eye to handle, but also because I'm very conscious of how I must look to other people, some squinty weirdo with one eye open, constantly blinking. What the fuck's his problem? This added to the fear of failing has been playing on my anxiety quite a lot. But I just need to remember that it could be a lot worse and that I should be grateful that it isn't as bad as it could be. That said though, it still is quite difficult. Knowing I have months of this ahead of me is overwhelming. BUT I CAN FUCKING DO IT. YES I CAN.

I am starting to realise that this blog post is more of a brain-shart than an actual blog post, but there you go. I was in for another appointment yesterday and they said I could start easing on the eyedrops. I've dropped the Mydilate 1.0%, and reduced the dosage of the other two eyedrops to four times a day each. This is a good sign. I think. I hope.

I'm going wrap this up. I'll fill ye in on how I'm doing this time next week. Until then, make sure no amoebae get into yer eyes. It's fucking awful, trust me.

Saturday, 22 February 2014

Jamie Life Update

I am not going to lie, I had completely forgotten that I had a blog. Hence the almost an entire year of not writing a blog post. Not that it matters much, however. Nobody is going to read any of this anyway. Alas, I shall use it anyway. Just as a medium through which I can vent.

Since my last post, which was waaaaaaaaaaay back in May of last year, a lot has happened to me. I went on work experience doing sound effects for cartoons, which resulted in me earning a small uncredited role in Sabrina: Secrets Of A Teenage Witch as a goblin named Spugent. This is most unusual. Every now and again I remember that millions of children around the world have heard my voice and I scream internally. Around the same time I rekindled a love lost, only to have it fall apart again a week ago. Again, I scream internally. Now I am back in College, and I can feel the anxiety attacks coming back to get me as assignments start to pile up.

I suppose the question is, what did I learn last year?

Absolutely nothing.