• The Bride of Frankenstein
• Time Bandits
• Army of Darkness
• Babe
• Chocolat
• Amelie
• The Mask
• Charlie and the Chocolate Factory
• Wallace & Gromit: The Curse of the Were-Rabbit
• Cloudy With a Chance of Meatballs

Post from: Jeannie's Brain

That End of the Year Thing

This is the first video I have shared on here, fitting because it’s the first Google Doodle that ever made me cry. Such an extraordinary person. I heard about it last night via the Queen Online and Freddie For A Day Twitters. It will hit the US Google page tomorrow – we get it late like all Queen-related media and merchandise. Good thing I’m a life-long Anglophile and order everything but DVDs from the UK stores. Here is Dr May’s post on the Google blog Another extraordinary person.

Pardon the fangirlism but I only discovered Queen this year. Better late than never! I am stupefied by their talent and personality. My musical taste has always been wildly eclectic so I appreciate that aspect of their music. Now collecting deluxe CD reissues.

Post from: Jeannie's Brain

Queen

Background

Last surgery

The “residue” that was clouding the cornea cleared up, and I didn’t develop the “skin” over the lens that required machine gun laser surgery in the other eye.

The vision is now better than in the other eye. It’s brighter due to less deterioration in that optic nerve. Vision in the first eye is blurry and peripheral vision is not terrific – that’s the first part of the visual field that goes in a slow optic nerve deterioration. Peripheral vision is not great in the other eye either. I can pass a driving test to get a license, but am not comfortable driving. No great loss since I had five accidents when my vision was better. You don’t want me on the roads.

The hyper sensitivity to light – and pretty much everything else – remained. They attempted to help by placing plugs in my tear ducts. This prevents the tears from instantly vanishing from the eye. That worked pretty well, but one of the plugs kept scratching my eye. I returned to the office, and they ‘repositioned’ that plug. The plug in the other eye also scratched so I went back and discovered the fellow who had ‘repositioned’ the other plug accidentally pushed it all the way into the tear duct. If an infection develops it will have to be removed – by cutting it out of my face with a scalpel. Well at least I have something other than the vision to worry about.

On monday July 25, I went back for a checkup and the layer of cornea tissue in the December surgery eye is being rejected. I hadn’t noticed any more aching and paining than usual. Rejection can nearly always be stopped with steroid eye drops, so they put in drops every five minutes for an hour, then sent me home with drops to use every hour for four days. I returned on the thursday and the drops had barely made a dent in the rejection.

Problem: the steroid eye drops raise the eye pressure. Raised eye pressure damages the optic nerve. They can replace a cornea, not an optic nerve. And this was my better, brighter eye! Going back tomorrow morning to see if there is any improvement.

The rejection was stopped by the eye drops and the eye pressure did not rise. I woke up sunday with no vision in my right eye. Not using the ‘B’ word. The vision slowly faded back in over about five minutes. That’s the optic nerve going…

Post from: Jeannie's Brain

Eye Update

At the office visit early saturday morning, the graft was 90% adhering.

90% is good unless you’re a cornea graft.

I was sent home to lie down flat again. Monday morning when I returned, the graft was failing and falling off and I was in severe intestinal pain from my reaction to the diuretic. First they inserted more air into the eye in order to force the graft to adhere. This was done with only an eye-numbing jell and was painful. After the procedure, I had to lie flat for two hours – not easy with severe intestinal pain. After two hours they looked again.

It was not adhering.

What followed was a full hour of extraordinarily painful surgery. There was fluid on the wrong side of the transplanted cells preventing them from sticking. They removed it, replaced the graft and filled the eye with extra air for pressure. I thought I would go insane from the pain. The cells started working and they could see my iris for the first time through the cornea. I had to lie there in pain for two hours. Finally the last, shorter procedure of removing some of the pressure. This was the most painful of all (due to the increased pressure) ending with what felt like a knitting needle slowly skewering my eye. I was then sent home to lie down flat for five more days.

The intestinal pain gradually receded and I was able to eat. The graft is now adhering and the cells are working to clear the cornea. I was allowed to get up at the end of that week but still could not bend forward or do anything at all strenuous. I was on antibiotic drops for two weeks and not allowed to leave the house except for doctor appointments (risk of infection).

This week I have been able to make the bed and cook a few dinners. I still need to use a cotton ball to dry near that eye, and can’t exert any pressure near my eyelid (stitches at the top of the eye). Finally I can make it through a day without taking a nap. Must continue steroid eye drops for six months. The eye should gradually stop hurting over the next three months, and the vision should improve over that time. I still feel pain in the spot where the last needle was inserted.

How did I not go insane lying there all that time? My phone. Everyone makes fun of Twitter now, but Seesmic on the Incredible is easier to use (and see) than facebook, chat, Plurk or email. It was my lifeline and contact with the outside world.

I am hugely grateful for each one of the Twitter @’s and DMs, and for all the facebook messages I could not reply to at the time. They were the one bright spot in a harrowing couple of weeks. Thank you so much.

And thanks again to the #cnetfans people who sent the amazing bacon package:

Post from: Jeannie's Brain

The Last Eye

Again.

I was born with two eye diseases. The operable one can be cured by replacing a defective layer of cells beneath my cornea. My right eye was done in 2007 (details for the curious and non-squeamish in my post Eyes ) now it’s time for the left eye.

There is good and bad news in having it done a second time.

Good: I know what to expect

Bad: I know what to expect

I’ve been lying awake at night thinking about the bad, so here’s the good: this time I have a netbook and a smart phone.

After surgery, I need to lie down flat for five days and can’t bend my head forward or exert myself for a month. Last time I could not sit up and use a computer for a week. This time, after the first couple of days when I start to feel better, I can get live streams and podcasts on the phone and netbook while still lying on the couch. IRC is out, but I can stay in touch on Twitter.

It’s great to be a connected couch potato.

And I’m really glad I only have two eyes!

See you January 3 in #cnetfans

Post from: Jeannie's Brain

Eyes: The Sequel

Some people can simply minimize their client or app, walk away and live their life. I could not. Obsession seems to be my middle name. I love my Twitter and IRC friends, but sometimes I just need to be alone; to read a book, or listen to music, or sit in silence, or even get out of the house.

I love Twitter. Usually. I get most of my breaking news from there now, both silly and serious. And it’s wonderful to keep up with my friend’s lives and moods; it gives me a real feeling of community. But sometimes it starts to feel just a bit oppressive to keep up with. Or maybe it was because I kept it open on my desktop and hit refresh every five minutes. Time to log out.

IRC can be great, but after more than a year without a break, I just didn’t want to say ‘hi’ to dozens (or hundreds) of people any more, or answer the same questions over and over. For fifteen hours a day. I also find the multiple tabs for channels (chat rooms) and PMs stressful. Carrying on conversations with more than one person at a time is at best unsatisfying. My preference tends to be either to connect with someone or be left alone. Introvert thy name is Jeannie. And I was so obsessed with keeping up and not missing anything that I wasn’t taking care of myself. I was failing to eat, drink water, take breaks or do any work. Even my sleep was being effected. Time to log out.

I also needed a break from keeping up with so many podcasts. Some people complain that they’ll have nothing to listen to and nothing to do if they “run out of” podcasts. I love the podcasts I listen to and the people who record them, but I also wanted time to hear music I haven’t heard in over a year. I wanted to just sit or lie on my couch without a laptop or netbook. I wanted to watch movies or tv shows without also being on the computer, obsessively checking social sites.

So I took a little holiday. And it was goood.

Post from: Jeannie's Brain

Logging Out or: Leave me alooooone!

Flashback

I had moved back in with my parents. They lived in a nowhere suburb. Nothing but single family homes with parents and kids. No single guys or any singles at all. No way to get anywhere except to drive and driving terrified me. Plus I wasn’t someone who would go to a singles group online or off. In desperation, I looked at some singles ads in a small, local paper. It was set up so you could reply to a mailbox number, anonymously. No need to use your name, address or phone number. I replied to five ads. Three of the recipients wrote back. One was barely semi-literate, one had more muscle than brain, and one was way too old.

A week or so later on a friday, I heard back from another one. He was a musician, lived about an hour away, did not sound like a jerk and had provided his phone number so i could call him. His letter said he usually was out performing on weekends, so I waited until the next week to call, figuring I’d just hang up if it was uncomfortable. We talked for a bit and he wanted to meet. That made me uncomfortable and I started to hang up. He said, “wait!” and we talked some more until I was a little less uncomfortable. His idea: the next saturday he had an hour or two before he had to go to a gig. He’d come out to my parent’s house, pick me up and we would go to lunch at a place about five minutes away. I agreed.

I didn’t have an airplane barf bag around, so i made one out of a paper lunch bag. As he walked up to the house, I stuck it out the door in case he needed it when he saw me. The first thing he said was, “put that away”. We went to lunch. he had also been “desperate” and did the singles ad because he got a free listing. His mailbox filled up with replies but mine was the only one he liked. He said my letter actually sounded like someone talking. The others provided complete info (including revealing pictures), but mine had no way of contacting me unless I called him. He was depressed when I didn’t call right away – but his letter had said weeknights were better!

After that, we talked on the phone for hours every night. Each weekend he drove out to my parent’s house and stayed in the spare bedroom. My parents loved him. One of the saddest things about his “desperate” situation was that whenever he’d make a funny comment to a girl, she’d give him a puzzled look and say, “what do you mean by that?”. Pathetic, considering how hysterically funny he is. Every week by the time he left my parent’s house I had pain in my stomach and face from laughing so hard.

We got engaged on Halloween and married February 11. I designed my dress and the wedding invitation. When his family and friends received the invitation, they all thought he had done it. When he informed them that it was all me, they smiled and said, “ahhhhh”.

He’s my best friend. No one is perfect and wonderful 100% of the time, least of all me. But he has more integrity, honesty and loyalty than anyone I’ve ever known. He’s caring and compassionate, outwardly almost pensive and reserved, yet hilariously funny. Plus he has an uncanny ability to understand and tolerate difficult people. Ahem. The biggest laugh during our wedding ceremony was when the pastor referred to us as “two unique people”. And we still are.

Post from: Jeannie's Brain

Barf Bag or: How I Met My Husband

I was born with two eye diseases in both eyes. Fuchs Dystrophy, and an optic nerve abnormality that developed into Optic Nerve Head Drusen. Everyone is born with a single layer of cells beneath their cornea. These cells act as pumps to keep the cornea clear. In people with Fuchs Dystrophy, the cells are puny and die off, causing the cornea to fog up. It becomes increasingly opaque until it’s like trying to see through waxed paper. Eventually, the layers of the eye break down causing blisters that then burst. In some people these cells die very slowly as they age and the effect is barely noticeable. Such people may never even know they have the disease. In others the cells die quickly, suddenly, or simply at a much younger age. I am one of second type of person.

The cure for Fuchs Dystrophy is a cornea transplant, first in one eye, then the other. Cornea replacement surgery has been done for about a hundred years. Until the past few years, the entire cornea was removed and replaced with a donor cornea. The new cornea was held in place by stitches. The recovery time was about two years, the risk of rejection was fairly high and severe astigmatism often resulted. Very recently, due to advances in microsurgery, it is now possible to remove only the defective layer of cells through a tiny incision. The donor layer of cells is then inserted and held in place by an air bubble. It is necessary for the patient to lie flat until the cornea adheres. Steroid eye drops are then used indefinitely to avoid rejection.

In December 2007 I had this type of cornea replacement surgery, called a DSAEK, in my right eye, which had the worst vision. Because cataracts form with age and the replacement cell layer would be destroyed during future cataract surgery, my lens was also replaced. All eye surgery is done while you’re awake. The anesthetist apparently thought I was only having cataract surgery – a fifteen minute procedure, rather than a DSAEK plus cataract surgery – which takes at least an hour. The anesthetic wore off fifteen minutes in. The surgery was…about as nightmarish as you can imagine. I spent the other 45 minutes clutching the operating table to stop myself from jumping up and running out of the room. The end was the best, three hypodermic needles into the eye, one at a time.

The procedure(s) went perfectly, but I reacted badly. I looked and felt as if I had been assaulted. The eye looked like something from a monster movie: all of the white was deep red and the iris totally black. It took months rather than weeks for me and the eye to recover. The stitches, which were not supposed to hurt, felt like chicken wire in my eye. And I still did not see clearly.

There is often a film that develops on the replacement lens after cataract surgery, so surgery with a YAG laser was done to remove that. This procedure was supposed to be painless. In me it felt as if my eye was being shot repeatedly with a machine gun. And that’s what the eye looked like afterward. It finally healed. I still did not see clearly.

The surgery had also left me farsighted. I’ve been nearsighted since birth and wish to remain so, it’s natural to me and everything I do is close up. Lasik surgery cannot be done on someone who has had a cornea transplant, so I had a PRK. This is a refractive procedure that was done before Lasik became common. In a PRK, the top layer of the cornea is scraped off with a scalpel, then the cornea is shaped by a laser. The pain was unbearable. It felt like I had a large blister on my foot, the blister skin was removed, then the shoe put back on. Only it was in my eye. After the recovery I could see close but still not well.

If you Google Fuchs Dystrophy and Optic Nerve Head Drusen you will find a lot of sites with short, inaccurate information about how they only effect people in the sixth or seventh decade of life. You will also read that these diseases rarely result in serious vision loss. Neither is true. I know teens who have needed cornea replacement surgery for Fuchs and children who have completely lost sight from Optic Nerve Head Drusen. I suppose it can be more prevalent in older people because everything deteriorates with age. The other patients at my cornea surgeon’s office are older than my parents, and the employees at the eye surgery center knows me as, “the young patient”.

The true reason my vision was so poor only became apparent after the cornea was clear. The Optic Nerve Head Drusen had thinned and damaged the optic nerve fibers. This damage is worse in my right eye. In both eyes, my vision is dimmed and there are parts of it missing – sort of like missing pixels on a monitor – especially around the edges. The damage is progressive. I have put off having the DSAEK in my left eye for as long as possible. In spite of the Fuchs fog, the left is still my better eye and the procedure does not always go so perfectly. Complications could develop. I may be able to avoid surgery for a year or two.

There’s nothing wrong with my macula and with Optic Nerve Head Drusen, center vision lasts the longest. I’m hoping I won’t be blind until I’m too senile to notice. I see better on a monitor than I can on paper or in the ‘real world’. I’m legally blind and cannot drive. I’m also unable to cross traffic alone as I won’t necessarily see a car heading toward me. I’m blind if light is facing me. I also have chronic stress fractures of my metatarsals and cannot walk much without causing fractures, so staying put is not much of a problem.

This is not an incredibly contrived excuse for spending so much time online. I’d probably be here anyway.

Eye Bank

Post from: Jeannie's Brain

Eyes