I should seriously be sleeping.

It’s 3:30am right now, our bus leaves for Van at 9:30am and out of the last 48 hours I’ve only slept for about 4. Tossing and turning in bed all night is so frustrating. It’s really hard to properly explain the feeling you get when you’re so tired and exhausted that you can’t fathom staying awake another minute, yet, you lay in bed for hours still unable to fall asleep. I don’t even understand it myself but what I do know is that it’s impossible to function normally. I’m more like a shell of myself, a zombie, empty and blank.

My pain level has been ridiculous since Wednesday – miserably so. To be more specific it’s been the worst in my back, shoulders and ribs. Never properly sleeping makes it way worse too. My headaches haven’t been too bad as far as they go so that’s one relief. Thank goodness too because I don’t know if I could handle it.

I’m really dreading the bus trip. Even with the comfortable recliner chairs on the Shriner’s bus, catered to people in pain, the 8 hour trip will be a rough one unless my pain levels lower. My eye appointment on Monday sounds even more dreadful. We were told to expect to be in the waiting room for up to 3 hours before we’re called in. And, in the past we’ve waited much longer than that. Whoever designed the waiting room chairs was not thinking much about the people who actually have to sit in them. It’s almost comical how unpractical in shape they are, making them highly unpleasant to sit in.

All day today I’ve been having some unsettling symptoms in my right eye (the same eye that the stitch is poking out of). I’m getting a tiny ring around the outer and bottom edge of my vision, almost exactly the same as the one that started about a week before that lens dislocated. I’m trying not to think much of it and to be honest it’s pretty easily done. For some reason I can’t actually worry or feel much in regards to things like that, possibilities. My mind automatically shuts those thoughts out and stores them away which is really helpful in dealing with (or technically not dealing with) some of the things that go on in my life. So, other than a weird kind of unease/bad feeling looming around about it, it’s not bothering me a bit.

It’s Always the Eyes

We basically just finished getting set up for my yearly[ish] trip to Vancouver Children’s Hospital for my echo in June. We had our Shriner’s bus schedules and Easter Seal hotel rooms all settled and good to go and my appointments booked. But, as goes pretty much anything to do with my eyes -they ruined the plans again.

There’s a stitch sticking out of my right eye (I know eww right? But it only looks like a tiny red dot above my iris, under my eyelid). It’s majorly scratching up the inside of my eyelid and my eye, so, we need to go get it lasered off asap before it does any real damage. I’m a bit uneasy about the entire thing. This will be the third or fourth stitch I’ve had lasered off or pulled out since my last surgery. Number one, after 7 surgeries this is the first time I’ve ever had any problems with stitches and number two; said stitches are what’s helping hold my lens in place so I don’t like the prospect of possibly making my lens dislocate – yet again.

Anyway, we’re (me and my mom) heading to Vancouver on Sunday now and luckily everything with my cardiologist and echo worked out so that we can just make this trip instead of both this one and the June one. So, I guess all in all it worked out pretty good. We’ll head out on Sunday and come back on Wednesday.

A big thanks again to the Shriners bus people who for the millionth time are taking us on the 8 hour trip to the city for free. And another thanks to the Easter Seal House who’s made these trips much less of a financial burden, again, for the millionth time.

P.S. – Happy Birthday to the world’s best mom. I love you and can’t even begin to imagine what I’d do without you. xoxo

Three Times, Not So Charming

I know it’s been a few days but I figure I should give you the final update on my drop and how it works. It does get rid of my double vision, but there’s a catch (isn’t there always?). The catch being that instead of one drop lasting 24 hours on me it lasts about 5. So in order to keep my pupil small and therefore keep my double vision at bay I would need to take the drop 3 times a day. They need to be taken at least 8 hours apart so there’s the 3 hours of double vision in between, and then there’s the hour of bad vision and intense eye aching after I use the drop. Simply said, no thank you. The costs are no longer worth the reward. Yeah, the double vision sucks and I would love it if it were gone, but now the pain (literally and figuratively) of doing the drop has become more of an irritation than the double vision itself. It’s nice to have the option in a situation to take the drop, like, if I needed to drive somewhere at night, but I definitely won’t be using it 3 times a day everyday. Driving a night is still a little iffy anyways because I still get major halos and glare from street and head lights

There is still the option of surgery. Which was explained to me like this: in order to surgically keep the pupil small they literally damage the nerves that allow it to dilate. They said it’s fairly straight forward and not too risky. Like I said, that’s an option. But for some reason my gut instinct is telling me that the surgery would be a bad idea, that it would be a mistake. So, because the double vision isn’t life threatening or particularly debilitating I’m going to trust my instinct and leave it for now. I don’t want to do something irreversible that I might one day regret unless it’s necessary. Plus I think my eyes have been messed with enough for a few lifetimes years and the thought of purposefully damaging nerves in my eye doesn’t sound like something to take lightly, at least to me anyway.

I’m at a place now where I am more at peace with my vision. It was hard to accept for a while that this was what it would be like from now on, but I’ve gotten used to it. It serves it’s purpose and I am lucky for that. I can see, maybe not like I used to but at least I can and that’s what’s important. There’s no point dwelling on the negative. For all I know one day there’ll be other options and they’ll be as good as new.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.}

Hey, Hey, Hey, Goodbye?

I am as of right now waiting and taking mental notes of the effects of my new eye drop. The drop goes by the brand name Pilocarpine and is prescribed most often for glaucoma. In my case as I mentioned a few posts back it’s been prescribed in order to keep my pupil from dilating, hopefully stopping the double vision. First thing’s first, I look like a cartoon drawing of an insane being; one pupil big, one pupil tiny. Second, it hurts like an SOB , but considering that it might fix my oh-so-irritating double vision problem I’m trying to convince myself that it’s a good hurt. And third, it’s dark in here. Not in this room here, but in my vision here. Which clearly is because of the lack of light that can get into my eye. Now, I’m doing this in a live broadcasty sort of way (spell check tells me that’s not a word), so I’m typing everything as I experience it. So, lets go make me some double vision, and hope that it’s not possible with my new drop.

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So far so good! It’ll be more obvious if it’s working well a little later when it gets dark and there’s no natural light but by now I should’ve seen something in double. I still can’t see all that great but I imagine my brain needs to get used to the change. On the bonus side the pain is continually decreasing. I’ll be back after dark for an update.

After dark update**

It’s dark out now and my update is a bit of a bummer. The double vision is still ever present, the drops don’t seem to be working anymore. I’m disappointed to say the least. My only other option with these drops is to try another one before I go to bed. I was told that it’s possible that two drops are needed for it to work but I have some doubts. It wasn’t all that long after the first drop that I noticed the double vision and they are typically supposed to last 24 hours. Not to mention that I don’t particularly like the idea of going through the post drop pain and lack of vision twice a day everyday. But I’m willing to give it a shot and see whether the cost is worth the reward. On a good note I didn’t get the added head ache side effect that I was warned about on top of the one I already have. So that is a good sign if I’m to continue using them.

A Chance At Better Vision?

Eever since my lens implants dislocated over a year ago and the corrective surgeries left my vision much less than what it used to be I’ve been searching for something that might help to restore it. I don’t get much help from my eye surgeon in this department. He seems to think that the fact that the lenses look good to him that they are good enough as is. Easy for him to say when he’s not the one that has to look through them all day everyday. I’m constantly squinting and trying to see around the double vision the surgery left me with in my left eye. When I read or look at the computer it feels like it’s just sitting there, not doing much, and not helping me to see. My right eye (which is for distance) isn’t helping much either. I can’t see the television or any street signs etc. without being at a close distance, where as before I could see things from afar.

Like I’ve mentioned before; I am thankful for the fact that I can see at all. But that doesn’t mean that I shouldn’t hope to have my sight improved. So I started researching possible surgeries or implants that may reverse the damage to no avail. Until one day when I wasn’t looking I stumbled on what might just be what I’d been hoping for; Accommodative Intraocular Lenses. These lens implants are made to move within the eye similar to the way a natural lens would move. By doing so they are able to ‘accommodate’ both near and distance vision. But the best part is that these lenses have a much lower chance of causing refractive errors in the vision and visual aberrations. Which means hopefully they could take away the double vision.

The bummer part of all this is; I may not be a candidate. See, the way that these lenses stay in place is by being implanted within the capsular bag where the natural lenses once were. The capsular bags in my eyes were removed when I was four, along with my lenses. I’m assuming this knocks my chances of receiving this surgery. Admittedly it was hard to swallow at first. I’d thought that I finally found the answer I was looking for. But it does make me wonder if in the near future there will be technology that allows these or similar lenses to be implanted in eyes like mine. I will talk to my optometrist about these implants just for information’s sake. I’m not in a big rush to get my vision back, just the hope that one day I will is enough for now.

Here is a link to a very helpful website detailing all there is to know about the different types of Intraocular Lens Implants, how they work, and how they’re implanted. 

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.}

16 Years Old: Right Lens Implant Dislocation, Another Surgery

While I was still healing from the last surgery a few weeks into December I got an early Christmas present (sarcasm). I noticed a ring around the outside of my right eye. I assumed it was the lens but when we went to my optometrist he said everything looked fine. I knew that even though he couldn’t see a problem that there was one and it would only be a matter of time before we found out what it was. Finally after a few days of the ring increasing in length and thickness I new what was going on. I bent over to get some pajamas out of my dresser and my entire lens slid forward. I could see it sitting in my eye and remembering how I was instructed not to bend over last time so that it wouldn’t lodge in my pupil I immediately stood up. It was different this time, it dislocated slowly where as the left one had done so in an instant. Like the last time I had to wait a week before I could have surgery. I think my surgeon was already booked or something. So, another long, long week of sleeping upright and worrying. Though, I think this time I had every reason to fret. The last surgery had turned out less than what I’d hoped for and my vision with my right eye when it was good wasn’t nearly what it used to be. If the same things happened again I wouldn’t be able to see very well at all. Not to mention the pain. I was terrified I would have to go through all of that pain again. I just tried to remind myself that this would be the 7th time I’ve had to do this, and 5 out of those 7 times the pain really wasn’t that bad.

My surgeon planned to reattach the lens as he had done with the left eye. The first thing I remember after waking up from the surgery is being in tremendous pain. When your in the hospital they usually ask you to rate your pain on a scale of 1-10. First of all let me just say I hate that question because I tend to over think it. I’ve never been in the worst pain imaginable so how can I rate my pain in accordance to this? That being said I kept saying it was an 8. They kept me in the recovery room far longer than I’ve ever had to stay there and would return every five minutes to ask me if the pain had lowered -which it hadn’t- so, they would administer more pain meds via IV. After an hour or two of this they finally wheeled me back to the holding area. I just remember laying curled up in a ball on the bed clenching my fists and waiting for them to bring my mom in. Sometimes a girl just needs her mom. But they didn’t bring her in for a long time after that and they still couldn’t get my pain under control. See people in my family (me, mom, brother), tend to not respond much to pain killers as well as anesthetic. Like for instance if the dentist needs to freeze my mouth it takes a lot of freezing and a much longer time for it to kick in on me than most people and my mom doesn’t freeze at all. And with Tylenol 3 which I take for pain most of the time I can take two at once and will feel nothing. So these heavy duty pain meds; morphine, demerol, oxycodone, and whatever else they attempted were doing nothing to relieve any of my pain. Meanwhile, I was told that my eye had hemorrhaged again -the reason for all of this pain? Eventually I just began vomiting all of the medication back up. My body had had enough of that, especially considering I didn’t have any food or water in my system to help it cope. I was in the hospital for 9 hours after my surgery (as apposed to the usual 2 hours) but eventually I just wanted to go home and sleep and since nothing they tried seemed to help the nurses didn’t oppose. I was still getting sick by the time we got home but despite everything I was wiped enough to fall asleep. This recovery time was the longest by far. It took months and months before my vision had officially reached it’s potential and the pain finally went away. Sadly for me, my vision didn’t return to nearly what it had been. No double vision or floppy iris, which I am very thankful for, but for some reason now I can’t see close to as well for distance as I used to be able to. This has all been very hard to adjust to. But I try to remind myself often that I am extremely lucky for the vision that I do have and that many others could only hope for such. I am not blind, I can see. And that will have to be enough. The hardest part for me is having been given that gift, only to have it taken away again. But I’m still thankful for the time I had with my implants when I could see so well and felt as if they had been mine all along. I still hold out hope that one day they will be able to fix my vision. But until I can be sure I won’t go into surgery and have there be a chance of an even worse outcome I will learn to live and cope with my new vision.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences.}

16 Years Old: Floppy Iris Syndrome & Another Surgery

I went to my local optometrist for a post operative check up and to voice my concerns about my new vision problem. He said that I had what he called “Floppy Iris Syndrome” (sounds made up, I know). Again he reminded us he could only offer speculation but he said it appeared that because my implant was placed further back this time to prevent it catching on my pupil and rubbing my iris that there was nothing to support my iris and so it was “flopping”. This made perfect sense. Back we went to Vancouver to consult with my ophthamologist. He decided that this time he would implant a new lens. My eye was still red and not yet fully healed so the thought of them cutting into it again so soon didn’t seem right to me. But he assured us it was best to do this right away as opposed to months or years later. So again -a month and a half later- surgery was booked for the following morning. I felt doomed this time for some reason. I felt that something would go wrong again and that I would not be able to see as well. Not long after I woke up from surgery my mom informed me that yet again at the last minute my surgeon had decided not to implant a new lens and to instead reposition the old one. I was really irritated and a bit disheartened, but reminded myself that he was the surgeon and he knows best. This time my pain level was a lot higher it had ever been with my other surgeries. Not unmanageable but higher.

The day after the surgery though, would end up being one of the hardest things I’ve ever gone through. I woke up in a tremendous amount of pain. It hurt to look anywhere, but if one eye moves so does the other. When we got to the eye doctors for my checkup (with a surgeon’s helper, not my actual surgeon) I was very aggitated. I had done this 5 times before, I knew the drill. They were going to take off my patch and hold open my eyelid, shine a light in it, put drops in it. Usually I wouldn’t flinch but this time I was in so much pain that the thought made my stomach turn -and for good reason. The pain I felt just from the weight of that tiny drop hitting my eye was enough to make me tear up and cry out. Of course the doc thought I was just being a baby he didn’t know me or my history, until my mom promptly explained to him that even at four years old I had not complained once during all of this. This was not the same, something was wrong. I have a very high pain tolerance. After all I’d been living in pain literally everyday for the past 2 and a half years. And so she knew the amount of pain I must’ve been in. But things were about to get much, much worse.

To find out what was wrong I would need an ultrasound on my eye. At first I was certain they must have a different way of doing this one eyes. There was no way they were going to hold that thing down on my eye and move it around. My eye was still mushy and flat, there were stitches sticking out everywhere and fresh wounds, not to mention a drop hitting my eye was really painful and this thing would be much heavier. There was no way. But yes, that’s exactly what they were going to do. I almost swallowed my heart as they explained the procedure. The 20 minutes it took seemed to drag on for hours. My fingers hurt from clenching the chair arms so hard. I could hear my mom sniffling in the corner. I was silent, -I was afraid to unlock my jaw and unclench my teeth- but she could tell by how I was holding my body how much pain I was in. Like I said, I have a high pain tolerance, and this was the most painful thing I’ve ever had to endure. It was like someone was splitting my skull with a sledgehammer and electricuting me at the same time. But, it needed to be done. The ultrasound revealed that my eye had hemorrhaged and was severly inflamed which was the cause of so much pain. This could be very damaging to the eye if left untreated. I was immediately put on a high dose of steroid drops four times a day (more pain!) along with steroid tablets to help the healing and zantac to protect my stomach from the steroids. I was also on a few other drops that I always take after surgery starting four times a day everyday. I was a bit traumatized the rest of the day, but proud that I had handled it -not that I had much of a choice. I was surprised to know how much pain we are capable of dealing with when left with no options though.

My eye (because of the complications) was taking a much longer time to heal than it had after the previous surgeries. I was edgy and wanted to know if my vision would be back to the way it used to be before the floppy iris. After all of the pain and worry, the drops, the traveling, the money, this surgery turned out worse than the last one. I didn’t have the floppy iris now, but I had severe double vision. Along with that my vision itself had decreased considerably compared to before. I could no longer read nearly as well as I had been able to (my left eye is my nearsighted eye). I double vision I’m told is a hazzard of the type of lenses I have, along with the size of the lens. It is rare but sometimes people do end up with these visual aberrations. The name of the aberration that closest fits mine is Coma aberration.

Above is a photographic example of the coma aberration. On the far left is how a normal image would appear (in my case). The middle is how a slightly distorted image in my field of vision would look, and the far right is how bright things like lights, street signs, televisions etc, always look. This has and will prevent me from ever driving in the dark, though I suppose I’m lucky I can drive at all. Still I’m sure that not being able to get myself around after dark will prove to be an obstacle time and time again in the future.
 {I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional.  They are merely there to help give an idea of my situation and experiences.}

16 Years Old: Dislocated Lens Implant & Surgery

It’s odd writing about my past as if it were somebody else’s. Some of it seems like another lifetime ago. The events in this blog post however were not all that long ago. It has been about a year and a half now since all of this took place.

What I’m about to write about, for me, has had a huge impact on my life. It was summer, a few weeks after my 16th birthday. I was sitting right where I am now, talking to my mom. I blinked and when I opened my eyes I couldn’t see a thing out of the left one. It was all a blur. It was exactly the same as when I didn’t have implants and would take my glasses off. I knew immediately that my lens implant had dislocated – and I was right. My optometrist knew I would need to meet with my ophthalmologis so that we could figure out what to do but this could not be done for a week because he was in China at the time. I was instructed not to bend over and to sleep upright so that the lens would not lodge into my pupil. Let’s just say it was a long week. When I was younger we were told that if anything happened to my implants that they would have to take them out and that would be it. I sat there thinking that I had lost the most precious gift I had ever been given. Sure I could see out of one eye, but it would be back to contacts and glasses regardless. Unless I wanted to remain blind in one eye. I wondered if I had appreciated my lenses as much as I should’ve. If I had remembered to stop and be thankful for the gift I’d been fortunate enough to receive. And truthfully, I had.

The week slowly dragged on until it was time to travel back to the big city. After an 8 hour bus ride (courtesy of Shriners, without which we would be lost!), we arrived at the Easter Seal house yet again. Luckily for me my ophthalmologist explained that technology had come a long way since my implants and that he would without a doubt be able to replace it. So surgery was booked for the following morning and I went through the motions of preperation. No food or water past midnight, arrive early to be checked in and hooked up to the IV etc. I was feeling nervous as one would, but optimistic. I felt certain all would be fine. Though, it wasn’t. My surgeon decided at the last minute to reattach the old implant instead of implanting a new one. To implant a new lens is a much bigger surgery altogether. It requires a much bigger incision and a longer healing time. At first I was angry at this decision as I thought it was the implant that was the problem, but now I’ve come to realize that may have been the best move.


Taken a month and a half after the surgery.

My surgeon’s decision wouldn’t be the problem though. My eye healed fairly quickly but as my vision returned I noticed a very distracting visual disturbance. Wherever I looked my vision would bounce. It was similar to looking through a bottle of water as the water waved and distorted everything I was seeing. We went home hoping that this would get better as time went on. But it did not.

{I am not a doctor and the medical definitions and descriptions do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are experiencing any health issues seek medical care.}

13 Years Old: Iritis/Uveitis

All was perfect with my implants for the first three years. I got used to them quickly and after a year or so it felt as though I’d had them my entire life. I never wore glasses, aside from cheap dollar store reading ones when I needed to read an atlas or globe.

When I was thirteen I started to notice a weird sensation and subtle vision change sometimes when I’d move from a dark room to a light one, or if I’d be sitting in a dimly lit room. Finally I got to a mirror before the sensation went away, just in time to see that my pupil had turned a diamond shape. I continued to catch my pupil doing this everytime I felt the odd sensation. Then a few weeks later one day out of nowhere when I was my vision became blurry in one eye and full of floaters. I’ve always describe it as being similar to looking through a frosted window. But for some reason or other I never thought much of it and aside from not going to the eye doctor, I didn’t even mention it to my mom. This happened a few more times and each time my vision would become even more clouded. Finally, (and I’ll never know why I was silly enough to put it off for so long), I went to the eye doctor.

He diagnosed me with iritis/uveitis. This is inflamation of the eye which can cause the pressure within the eye to become too high. If left untreated it can become very painful not to mention cause permanent damage. He speculated that this was happening because one of my implants was catching on my pupil so when my pupil would try to contract it wasn’t able to as it should. This was causing pieces of my iris to flake off and irritate my eye, causing the iritis. To keep the fluids in my eye from building up my opthamologist put a tiny laser hole in each of my eyes under my eye lids (too small to see). This is so if the fluid can’t escape from the pupil it has somewhere else to drain and the pressure won’t build up. I conitnued to get the iritis/uveitis but we would treat it immediatly with eye drops and soon afterward it would be gone once again.

{I am not a doctor and the medical definitions and descriptions do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are experiencing any health issues seek medical care.}

7-10 Years Old: Contacts & Lens Implants

 
Despite wearing the glasses that made me so self concious I was very outgoing and able to make a lot of friends. Being kind always helped me in that avenue. But yes, there were times that I was teased and I never stopped longing to be rid of the glasses. So, when the opportunity arrived for me to get contacts at the tender age of 7, I didn’t hesitate to let it be known that I wanted them. I wasn’t able to put them in on my own at the time, especially since they were clear and without glasses I couldn’t see a thing. It was a pain in the butt to do everyday, but I welcomed it. I loved them more than anything. Finally knowing what it was like to be “normal” made it even harder for me to be seen in them. I stopped going on the school swimming trips, and I was afraid to have new friends sleepover because of night time when I’d have to switch them out for my glasses. My friends were always really good with them. None of them seemed to ever really even notice and if they did they did a good job of keeping it to themselves.
 
Three years with the contacts we seen a report on the news about these top of the line lens implants that were being given to cataract patients to replace their damaged ones. I almost swallowed my heart! Could I be a candidate for this? I didn’t have cataracts but it was basically the same thing. Turns out, yes, I was. At first we were told nothing could be done for my eyes until I had finished growing. But for some reason or another they decided I would be a fine candidate -at ten- for what is known as Intraocular Lens Implants.
 
After a month or two of decision making and prepping on my opthamologist’s end I was off to Children’s Hospital again. The surgeries were booked one week apart and just as they had 6 years ago they both went well. There was a minimum amount of pain and my vision cleared up fast. I recieved Conventional IOLs which are the most commonly implanted and basic IOLs. Although, they did something I’m told is not all that common when it comes to implants. They implanted a far-sighted lens in my right eye and a near-sighted lens in my left eye. They were hoping this would help me to read as well as with seeing distance and it ended up being a very good decision. This was the first time in my entire life that I was actually seeing out of my own eyes and it was incredible. No glasses, no contacts, just my eyes. It was the most amazing experience I’ve ever had and it is a feeling that I will cherish for the rest of my life. 
(I am not a doctor and the medical definitions and descriptions do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are experiencing any health issues seek proffesional medical care.}