Life is always full of twist we don't expect, that is what makes it interesting. However, this twist wasn't the type that you could simply yell "PLOT TWIST" and move on. Thursday, exactly one day after my final surgery, I was to go see what felt like every eye specialist in Norther Virginia. First it was to the doctors who had performed my surgeries. I was checked out and was healing normally. My eye pressure was low, vision was great, both eyes were working together fairly well, and the lens hadn't shifted at all. Hesitantly, I was given permission to leave Friday with Scott to head back home and get back to real life. Next was the retina specialist. After what felt like an eternity, I had been checked out and everything looked great. The big black spot floating around the bottom of my vision field was an air bubble that would dissipate eventually. She was happy with everything and she gave me the same a-okay to go home.
It had been a long morning of poking, so Scott and I decided lunch was the best plan of action. While eating, literally a mere couple of hours after being told everything was fine, things took a twist. As i looked around, something seemed different. I became dizzy and couldn't figure out why. I realized it was my right eye, my vision had drastically changed. I felt as though I was in a fish bowl. Everything was warped and anything more than 5 inches from my face was blurred and almost unrecognizable. Trying to hold back my panic and I did what every independent, grown woman would do; I called my mommy. She urged me to call the doctor immediately because this was definitely not normal. I called them, hoping they would say something like, "oh it's normal, don't worry," but that wasn't exactly the case. They told me to come in ASAP because it needed to be looked at, however I would have to see a doctor I had never seen before because my doctors were in surgery or in a different office today. When I was able to get back to the office, I wasn't sure what was going to happen. The new doctor looked in my eye and said "well that's not normal". What is it with these guys and saying phrases no person would ever want to here in that situation; it is one step above "oops". He tells me that I have a pupil blockage. Being a college educated woman I was able to deeply analyze this to mean something was blocking something to do with my pupil..... ok I didn't say it was the best. Scans and pictures were taken of the interior layout of my eye. You could see the lens, pupil, iris and cornea. There was supposed to be gaps between each; these gaps allowed fluid to move within the eye keeping things balanced and in their proper place. In my situation there was something blocking the gap by my pupil. This forced the fluid to back up in the back of the eye causing my pressure to double and everything to be pushed forward. It was pushing everything so much that it was almost touching my cornea (the external layer of the eye). The best way to fix this is to remove the blockage by using a laser. They flood my recently traumatized eye with numbing medication then stick a lens on it with what is best described as a suction cup. They then proceeded to shoot a laser through the lens into my eye and to the blockage. They warned me that i might "feel a little twinge".... something I have learned in all if this is that doctors will try to minimalize pain to keep you from panicking. Every time that laser was shot, I could feel a dull poke through my eye. It took seven shots to break up the blockage. They removed the suction cup, and yes it felt as you would think it would feel to remove a suction cup. This was probably the worst pain I had experienced the entirety of this journey. I was trying my hardest to be as strong and awesome as they kept telling me I was, but I felt like a hurt child with lip quivering and tear filled eyes.
Within minutes my vision was back to normal and my pressure was lowering. It was incredible what technology could do. My eye burned the rest of the night, open-burn, closed-burn. The only relief I could find was ice cold compresses layed over the burning and aching eye. We decided to stay another day, to get checked out one more time and just in case there were any other issues.
Luckily there haven't been any other issues. We were able to get back to Tennessee and I even headed back to work. True, I went back a little too soon and tried to work a little too long, but things have evened out. I still walk into the bathroom every night and stand there wondering what it is that I came in there to do, when I realize I don't need to take out my contacts. I am still getting used to having normal eyes and seeing like everyone else, but it is a challenge I am willing to take on. I really could not be happier right now, and I can't wait to go back for my last follow up in April to show off what a perfect patient I am. :)
Saturday, March 29, 2014
The Eyes are a Window to the Soul: Fixing Window Pane #2
March 12, 2014, the day of my second IOL surgery. The first had been extremely successful and my doctors were eager to finish the second. I knew basically what to expect this time, plus I had my boyfriend with me this time to take care of me and handle the abuse I was going to give him.
Everything was fairly similar to the week before, a whirlwind of nurses, IV's, pressure cuffs, drops, hair nets, and gowns. I had an incredible and sarcastic nurse this time that made everything easier. I thank the Lord for her, because she truly listened to me and my concerns from the recent surgery. She was going to make sure she told someone about my nausea and discomfort post-op. Went into the operating room like normal. The bee hive was buzzing as normal, masked faces going this way and that. They hook me up to my IV start the process of prepping me. Eye flooded, numb, taped open; one deep breath and here we go.
The surgery started off just like the first. Swirling, fuzzy, bright colors dancing with shadows. I could hear them talking around me, two men I trusted more than anyone else sitting just above my head. Things were going along well when I started feeling pressure. I told them, they tried to numb me some more, but the pressure continued. Because of the ongoing pain I spoke up to the doctors. They told me that they were trying to sutcher the lens to my cornea, but it was stuck. oh ya that is what you want to hear. The string being used to stitch in the lens was kinking and he was haveing to tug on it to try to get it to free itself. I could feel each tug, not a deep horendous pain, but a sharp pressure. Once they had the lens stitched in, there was too much distortion to my iris (like a cat's eye). Unsatisfied with this result, they had to resutcher the lens, more and more tugging and forcing the lens to do what they want. There was nothing they could do for my discomfort, and all I could do was whimper and pray it ended soon.
Finally, it was done. They were pulling tape, oxygen, and IVs off of me as they wheeled me out of the operating room. My wonderful nurse met me at the door wanting to take care of me, even though it wasn't her job to watch over me post-op. They had given me additional medication to help with the nausea, and it was a God send. I surprisingly felt completely fine after this procedure. I was given plenty of time, cups of ginger ale, and even crackers to help make sure I wouldn't get sick. Mom and Scott were brought in to see me and then we were released to go home. My amazing doctor, unbeknownst to me, went in to the waiting room to talk to mom and Scott and gave them a prescription for pain killers. He told them it was a much harder surgery this time and I didn't need to be a martyr. The pills did come in handy, because even though I felt human this time, I felt the pain too. I felt like I had one heck of a black eye and eye infection all at the same time. My check ups had the same positive results as the first eye. I could see at 20/30 and could actually read some as well. I had made it to the other side of this life long track, but I wasn't quite ready to celebrate.
Everything was fairly similar to the week before, a whirlwind of nurses, IV's, pressure cuffs, drops, hair nets, and gowns. I had an incredible and sarcastic nurse this time that made everything easier. I thank the Lord for her, because she truly listened to me and my concerns from the recent surgery. She was going to make sure she told someone about my nausea and discomfort post-op. Went into the operating room like normal. The bee hive was buzzing as normal, masked faces going this way and that. They hook me up to my IV start the process of prepping me. Eye flooded, numb, taped open; one deep breath and here we go.
The surgery started off just like the first. Swirling, fuzzy, bright colors dancing with shadows. I could hear them talking around me, two men I trusted more than anyone else sitting just above my head. Things were going along well when I started feeling pressure. I told them, they tried to numb me some more, but the pressure continued. Because of the ongoing pain I spoke up to the doctors. They told me that they were trying to sutcher the lens to my cornea, but it was stuck. oh ya that is what you want to hear. The string being used to stitch in the lens was kinking and he was haveing to tug on it to try to get it to free itself. I could feel each tug, not a deep horendous pain, but a sharp pressure. Once they had the lens stitched in, there was too much distortion to my iris (like a cat's eye). Unsatisfied with this result, they had to resutcher the lens, more and more tugging and forcing the lens to do what they want. There was nothing they could do for my discomfort, and all I could do was whimper and pray it ended soon.
Finally, it was done. They were pulling tape, oxygen, and IVs off of me as they wheeled me out of the operating room. My wonderful nurse met me at the door wanting to take care of me, even though it wasn't her job to watch over me post-op. They had given me additional medication to help with the nausea, and it was a God send. I surprisingly felt completely fine after this procedure. I was given plenty of time, cups of ginger ale, and even crackers to help make sure I wouldn't get sick. Mom and Scott were brought in to see me and then we were released to go home. My amazing doctor, unbeknownst to me, went in to the waiting room to talk to mom and Scott and gave them a prescription for pain killers. He told them it was a much harder surgery this time and I didn't need to be a martyr. The pills did come in handy, because even though I felt human this time, I felt the pain too. I felt like I had one heck of a black eye and eye infection all at the same time. My check ups had the same positive results as the first eye. I could see at 20/30 and could actually read some as well. I had made it to the other side of this life long track, but I wasn't quite ready to celebrate.
Friday, March 28, 2014
The eye is the window to the soul- window pane #1
I have been putting this blog off for a while, and I have no idea why. Everyone has wanted to know how the surgery went, and to be honest, I was scared to really tell them. I think it was because this was such a life altering moment in my life that I couldn't express all that I wanted to, or maybe that no one would really care, or that if I continued to talk about it and something went wrong there would be a whole lot more I would have to talk about. I know there are countless people who want to know about this procedure and how I am doing in it, that is why I chose to finally explain it. SO here it goes....
March 5, 2014. This was the day of my first surgery. We arrived at the surgical center at the unholy hour of 6 am. We were the very first ones there, so we completed our paperwork and proceeded to the waiting room. A woman and her toddler walking in shortly after us. It was obvious in her demeanor she was nervous. While in the midst of juggling a child, purse, coffee, paperwork and her sanity, she was told she had parked in the wrong place and had to go move her car. She looked around the semi-crowded waiting room trying to figure out what to do. She walks right up to us and asks if we will sit with her son while so handles this. Mom, feeling a connection only a mother who has had to watch her baby go through surgery could have, said of course. I sat and played with him from that waiting room and into the next one we were corralled into. I entertained him while his mother tried to get her hands to stop shaking long enough to fill out paper work. We found out he was there to have tubes put into his ears. It warmed my heart that when I was called back to get prepped, my little buddy started crying, I hope everything went well for them.
They took me back and got me into a gown and into a bed. This was when the piano of realization fell on my head. I was fighting off a swarm of butterflies when the anesthesiologist came in to hook me up to my iv. The next few minutes was a complete whirlwind or pressure cuffs, IV's, tape, and dilation drops. Can I just take this moment to say that is one weird feeling when you have one eye extremely dilated and one normal; my fields of vision were overlapping so much it was dizzying. Then before I knew it, my mom was being shown out and I was being wheeled into a very sterile and cold operating room. I felt like an outsider in a bee hive. Masked faces running around from place to place, popping into my field of vision long enough to ask a question or say something resembling elvish to another masked face. I was thoroughly overwhelmed when they turned their attention to me. My eyes were being held open and flooded with liquids ranging from numbing medicine to iodine. My eye was taped and clamped open, oxygen shoved up my nose and my IV turned on. Then I made the unspeakable mistake of attempting to scratch my nose, I was screamed at by at least a dozen masked faces and my wrists were immediately tied to the bed as if I was a mental patient. Finally they placed a large blue sheet over my face with a hole placed over my left eye. Then it began. I was completely aware of what was happening, I could hear every word being spoken, feel the pressure cuff randomly taking my blood pressure, even see things. The problem is that I can't begin to explain what I saw. With the bright light being shone into my eye nothing was clearly visible. I saw colors, swirls, and shapes, every now and then seeing very specific shapes of tweezers or a scalpel. Overall the surgery was uneventful except for having to numb my eye again because I could feel intense pressure. After about 40 mins it was over. As soon as they were done they were ripping tape off of everything, untying me, and rushing me to recovery. All I could was start to cry. The entire morning had been such a confusing and sickening blur that my dam of anxiety broke. They were in a hurry to get me out of the door, they gave me water, unhooked me from everything, took my water away, threw my clothes at me, told me to get into a wheelchair. I felt so nauseous, rushed, and emotional that when they wheeled me toward my mom I just busted into tears again. I cried as they wheeled me past the recovery and straight out the door and to the car. I was so sick from the iv that I threw up as soon as I got home, which is an interesting adventure when you are give explicit instructions to not bend over.
The nausea stuck with me for a couple of days and I took naps all the time, but the eye was holding up fine. I was continually concerned because my vision was hazy, tinted yellow, and the outer edges of my field of vision appeared to be shaking and flashing. Come to find out that was all completely normal. The haziness was due to the swelling and pressure in the eye, the waves was the lens trying to get used to the muscles and rapid movements, and the yellow tint was because that is what normal people see. Little bit of random knowledge for you, a natural lens offers protection from the sun and other bright lights, this results in a slight yellow tint. A normal person would never notice, however, for someone who has never seen that way will be driven crazy by the dramatic difference. I had a slew of doctor's appointments to check everything and let's just say the phrases 'amesome', 'amazing', 'damn good' were thrown out more than once. That was after they made sure they were checking the eye I had actually had surgery on. Nothing can be said for that odd moment when your doctor is looking at your right eye, quietly, concerned, hesitant, then switches to the left eye and releases the breath he had been holding with a "oh thank God, that's were it went!".They could not have been happier with how the surgery went and the fact I was seeing at 20/25. This surgery was the easier of the two because there just happened to be enough muscular support to hold the lens in place by itself. One week later I was going to have surgery that was going to be much more 'traumatic' .... oh goody
March 5, 2014. This was the day of my first surgery. We arrived at the surgical center at the unholy hour of 6 am. We were the very first ones there, so we completed our paperwork and proceeded to the waiting room. A woman and her toddler walking in shortly after us. It was obvious in her demeanor she was nervous. While in the midst of juggling a child, purse, coffee, paperwork and her sanity, she was told she had parked in the wrong place and had to go move her car. She looked around the semi-crowded waiting room trying to figure out what to do. She walks right up to us and asks if we will sit with her son while so handles this. Mom, feeling a connection only a mother who has had to watch her baby go through surgery could have, said of course. I sat and played with him from that waiting room and into the next one we were corralled into. I entertained him while his mother tried to get her hands to stop shaking long enough to fill out paper work. We found out he was there to have tubes put into his ears. It warmed my heart that when I was called back to get prepped, my little buddy started crying, I hope everything went well for them.
They took me back and got me into a gown and into a bed. This was when the piano of realization fell on my head. I was fighting off a swarm of butterflies when the anesthesiologist came in to hook me up to my iv. The next few minutes was a complete whirlwind or pressure cuffs, IV's, tape, and dilation drops. Can I just take this moment to say that is one weird feeling when you have one eye extremely dilated and one normal; my fields of vision were overlapping so much it was dizzying. Then before I knew it, my mom was being shown out and I was being wheeled into a very sterile and cold operating room. I felt like an outsider in a bee hive. Masked faces running around from place to place, popping into my field of vision long enough to ask a question or say something resembling elvish to another masked face. I was thoroughly overwhelmed when they turned their attention to me. My eyes were being held open and flooded with liquids ranging from numbing medicine to iodine. My eye was taped and clamped open, oxygen shoved up my nose and my IV turned on. Then I made the unspeakable mistake of attempting to scratch my nose, I was screamed at by at least a dozen masked faces and my wrists were immediately tied to the bed as if I was a mental patient. Finally they placed a large blue sheet over my face with a hole placed over my left eye. Then it began. I was completely aware of what was happening, I could hear every word being spoken, feel the pressure cuff randomly taking my blood pressure, even see things. The problem is that I can't begin to explain what I saw. With the bright light being shone into my eye nothing was clearly visible. I saw colors, swirls, and shapes, every now and then seeing very specific shapes of tweezers or a scalpel. Overall the surgery was uneventful except for having to numb my eye again because I could feel intense pressure. After about 40 mins it was over. As soon as they were done they were ripping tape off of everything, untying me, and rushing me to recovery. All I could was start to cry. The entire morning had been such a confusing and sickening blur that my dam of anxiety broke. They were in a hurry to get me out of the door, they gave me water, unhooked me from everything, took my water away, threw my clothes at me, told me to get into a wheelchair. I felt so nauseous, rushed, and emotional that when they wheeled me toward my mom I just busted into tears again. I cried as they wheeled me past the recovery and straight out the door and to the car. I was so sick from the iv that I threw up as soon as I got home, which is an interesting adventure when you are give explicit instructions to not bend over.
The nausea stuck with me for a couple of days and I took naps all the time, but the eye was holding up fine. I was continually concerned because my vision was hazy, tinted yellow, and the outer edges of my field of vision appeared to be shaking and flashing. Come to find out that was all completely normal. The haziness was due to the swelling and pressure in the eye, the waves was the lens trying to get used to the muscles and rapid movements, and the yellow tint was because that is what normal people see. Little bit of random knowledge for you, a natural lens offers protection from the sun and other bright lights, this results in a slight yellow tint. A normal person would never notice, however, for someone who has never seen that way will be driven crazy by the dramatic difference. I had a slew of doctor's appointments to check everything and let's just say the phrases 'amesome', 'amazing', 'damn good' were thrown out more than once. That was after they made sure they were checking the eye I had actually had surgery on. Nothing can be said for that odd moment when your doctor is looking at your right eye, quietly, concerned, hesitant, then switches to the left eye and releases the breath he had been holding with a "oh thank God, that's were it went!".They could not have been happier with how the surgery went and the fact I was seeing at 20/25. This surgery was the easier of the two because there just happened to be enough muscular support to hold the lens in place by itself. One week later I was going to have surgery that was going to be much more 'traumatic' .... oh goody
Monday, March 3, 2014
Today is your day! Your mountain is waiting. So... get on your way.
You know, I have started this next post at least five times. With each attempt, I would get into the third or fourth sentence and delete it. I would just stare at the screen thinking, "what do I want to say? what is important?". To be honest, I still don't know what I want to write. I could complain about the unfair reality of our insurance system. I could cry and whine about having to find a couple thousand dollars to pay up front even though I have insurance, but I don't want to.
I could tell you about how the snow storm cancelled one of the procedures I was supposed to have this morning, but I don't want to.
So what is left?
One of the things people keep asking me is how am I feeling. Four simple words, but I can't come up with enough words to respond. I am standing in the middle of a tornado of feelings. I stand in the erie calm waiting for the tears, the fear, the anxiety, the joy, the excitment, but nothing comes....yet. I sit in my bed in my childhood room feeling all the extremes there are to feel.
HOPE. I finally have a hope for a different life when it comes to my eyes. I won't have to rely on contacts or glasses anymore. I won't have to suffer through bloodshot, burning eyes because I can't function without contacts. I won't have to joke about bumping into walls and dropping things because I have my glasses on. I won't have to feel like a freak when talking to professionals about my eyes.
FEAR. Yet on the other end of this emotional storm is the fear and doubts. It is hard for me to admit that I am afraid. I want to be strong and unwavering, but I am terrified. What if I waited all this time and it doesn't work. What if they can't even complete the surgery because my eyes don't have enough muscular support for the lens to stay. What if the surgery is a success but one day, years down the line, the stitches dissolve and the lens detaches.
LOVE. I feel supported by so many people and yet feel so alone. I know that I have a family, a boyfriend, and tons of friends that are waiting with baited breath for these surgeries to be successful. They would do anything for me and I feel so loved, but no one can truly understand.
ALONE. This is one of those instances where a person can't understand unless they have gone through it too. This is a journey I have had to go through alone for twenty six years. My mom has been a rock for me and I know she is just as full of emotions as I am. She worked to give me sight and now we are trying to change it. However, no one else has had to go through the journey. That is the one down side of being "special". I am a rare case. The one person I know would understand and be with me 100% would be my dad. He has gone through all of this and would completely understand this massive step I am taking. I miss him so much right about now. I was planning on going to visit the cemetery before the procedure on Wed, but the snow has made that impossible. I know he is with me and I know his arms are around me during the emotional tornado.
NUMB. I just feel numb.
I could tell you about how the snow storm cancelled one of the procedures I was supposed to have this morning, but I don't want to.
So what is left?
One of the things people keep asking me is how am I feeling. Four simple words, but I can't come up with enough words to respond. I am standing in the middle of a tornado of feelings. I stand in the erie calm waiting for the tears, the fear, the anxiety, the joy, the excitment, but nothing comes....yet. I sit in my bed in my childhood room feeling all the extremes there are to feel.
HOPE. I finally have a hope for a different life when it comes to my eyes. I won't have to rely on contacts or glasses anymore. I won't have to suffer through bloodshot, burning eyes because I can't function without contacts. I won't have to joke about bumping into walls and dropping things because I have my glasses on. I won't have to feel like a freak when talking to professionals about my eyes.
FEAR. Yet on the other end of this emotional storm is the fear and doubts. It is hard for me to admit that I am afraid. I want to be strong and unwavering, but I am terrified. What if I waited all this time and it doesn't work. What if they can't even complete the surgery because my eyes don't have enough muscular support for the lens to stay. What if the surgery is a success but one day, years down the line, the stitches dissolve and the lens detaches.
LOVE. I feel supported by so many people and yet feel so alone. I know that I have a family, a boyfriend, and tons of friends that are waiting with baited breath for these surgeries to be successful. They would do anything for me and I feel so loved, but no one can truly understand.
ALONE. This is one of those instances where a person can't understand unless they have gone through it too. This is a journey I have had to go through alone for twenty six years. My mom has been a rock for me and I know she is just as full of emotions as I am. She worked to give me sight and now we are trying to change it. However, no one else has had to go through the journey. That is the one down side of being "special". I am a rare case. The one person I know would understand and be with me 100% would be my dad. He has gone through all of this and would completely understand this massive step I am taking. I miss him so much right about now. I was planning on going to visit the cemetery before the procedure on Wed, but the snow has made that impossible. I know he is with me and I know his arms are around me during the emotional tornado.
NUMB. I just feel numb.
Saturday, February 22, 2014
It's Been a Decade in the Making
This surgery has been a long time coming. I know that is a popular phrase, but in this scenario it is far too true. But before I go into that story, let me start with the basics.
What is this surgery exactly? It is IOL implant surgery. Let me break that down a little more. IOL stands for Intraocular Lens. For those of you still smiling and nodding because this still means nothing to you; it is basically a contact lens that will be implanted inside my eye. This surgery has been out for quite awhile. For a normal person, the eye is cut, the lens is placed and fitted in muscular supports left in from the original lens, then the eye is closed. It is a fairly simple surgery with minimal recovery time. However, as we all know, I am anything but normal. Twenty six years ago, the technology was drastically different than it is now and which was far improved from the years of my father's surgery. Back in the early 50's, the technology for this type of surgery was, for lack of a better term, crude. At that time scar tissue was a big concern and common occurrence. To help alleviate this after affect, the muscular supports were also completely removed along with the lens. This means that there is nothing to hold the new lens in place; thus begins the dilemma.
This was the puzzle I placed in front of my ophthalmologist. He told me of this new lens that could be used for my eyes, but it "would just take a couple years" to finish the development process. I was assured I would have it by the time I was in high school. I checked back in and it was "closer but still needs a couple more years." It was now going to be by graduation or before I go away to college. Senior year I checked in, very hopeful, and was once again disappointed. BUT this time they explained that the technology existed and they were only waiting for the FDA to approve it, so obviously it would only be "a couple more years". You keep using this phrase, I don't think it means what you think it means. At this point i was losing hope, but I held on to that dim flame as hard as I could. Through the frustrations and difficulty of college, including 1 am fire drills being executed blind because glasses are slippery buggers that end up under your bed when you are startled, I held onto hope. I began emailing my doctor every year, and every year I received very familiar responses:
"The intraocular lens that we planned on using for you is in clinical trials finally and hopefully we will be able to fix you up within the next two years."
"Still in Phase 3 trials. I'd estimate about a year".
This was the point that I had given up hope for this surgery. It had been 10 years of reassuring, disappointment, hope, frustration that had pushed me to accept what I had to deal with. I kept in touch, just in case something changed. It wasn't until October 2013 that I received one email that was the emotional Wild Eagle. I was told it was possible. ..... Possible... POSSIBLE.
That one word continued to ring through my head, yes, no, maybe. I couldn't let myself get excited incase it wasn't able to happen. My stomach was in knots and my lungs spasaming like a fish on a bank. He started talking about the surgery and my recovery time when I stopped him dead: "you mean this surgery can actually happen? It is going to happen?" Then I heard the three words that brought tears to my eyes...
"yes, of course!"
What is this surgery exactly? It is IOL implant surgery. Let me break that down a little more. IOL stands for Intraocular Lens. For those of you still smiling and nodding because this still means nothing to you; it is basically a contact lens that will be implanted inside my eye. This surgery has been out for quite awhile. For a normal person, the eye is cut, the lens is placed and fitted in muscular supports left in from the original lens, then the eye is closed. It is a fairly simple surgery with minimal recovery time. However, as we all know, I am anything but normal. Twenty six years ago, the technology was drastically different than it is now and which was far improved from the years of my father's surgery. Back in the early 50's, the technology for this type of surgery was, for lack of a better term, crude. At that time scar tissue was a big concern and common occurrence. To help alleviate this after affect, the muscular supports were also completely removed along with the lens. This means that there is nothing to hold the new lens in place; thus begins the dilemma.
This was the puzzle I placed in front of my ophthalmologist. He told me of this new lens that could be used for my eyes, but it "would just take a couple years" to finish the development process. I was assured I would have it by the time I was in high school. I checked back in and it was "closer but still needs a couple more years." It was now going to be by graduation or before I go away to college. Senior year I checked in, very hopeful, and was once again disappointed. BUT this time they explained that the technology existed and they were only waiting for the FDA to approve it, so obviously it would only be "a couple more years". You keep using this phrase, I don't think it means what you think it means. At this point i was losing hope, but I held on to that dim flame as hard as I could. Through the frustrations and difficulty of college, including 1 am fire drills being executed blind because glasses are slippery buggers that end up under your bed when you are startled, I held onto hope. I began emailing my doctor every year, and every year I received very familiar responses:
"The intraocular lens that we planned on using for you is in clinical trials finally and hopefully we will be able to fix you up within the next two years."
"Still in Phase 3 trials. I'd estimate about a year".
This was the point that I had given up hope for this surgery. It had been 10 years of reassuring, disappointment, hope, frustration that had pushed me to accept what I had to deal with. I kept in touch, just in case something changed. It wasn't until October 2013 that I received one email that was the emotional Wild Eagle. I was told it was possible. ..... Possible... POSSIBLE.
That one word continued to ring through my head, yes, no, maybe. I couldn't let myself get excited incase it wasn't able to happen. My stomach was in knots and my lungs spasaming like a fish on a bank. He started talking about the surgery and my recovery time when I stopped him dead: "you mean this surgery can actually happen? It is going to happen?" Then I heard the three words that brought tears to my eyes...
"yes, of course!"
Monday, February 17, 2014
Where It All Began
Well, here it goes. I have never been a blogger. Even though I grew up in the era when it became the popular thing to do; it wasn't something I was really interested in. The happenings in my life have changed this in me. I have found that I want to tell my story and let you see a few things through my eyes.
This journey I mentioned has been my journey to sight. I know, that seems silly for most people :) but it has been anything but silly for me. Some of you already know my story, but for those of you who don't, where better to start than the beginning. I was born with Congenital Cataracts. For those smiling and nodding because those two words mean nothing to you, let me break it down. A cataract is "a cloudiness or opacity in the normally transparent crystalline lens of the eye. This cloudiness can cause a decrease in vision and may lead to eventual blindness." Congenital simply means to present at birth. So for those playing at home, this means I was born with opacity or clouds in the center of my lenses. If it was not treated it would lead to almost complete loss of vision in both of my eyes. Though they haven't found a cause for cataracts or found a specific genetic tie, I received my cataracts from my father who was also born with it.
The day they told my parents I had the same disease as my father, he cried. After a few moments of anger, fear, sadness, they bucked up and were determined to give me the best vision they could. This meant surgeries, contacts, and lots and lots of appointments.
At six weeks old, I had my first surgery to remove the lens from one eye. A week later, the second lens was removed. I was immediately put in contact lenses for babies. The lens prescriptions were changed weekly to mimic the development of a normal child's eyes. For those of you going "... waaaaiit, contacts... who the heck put them in and took them out?" well, that would be my mother. Yes, a first time mother had to wrap her infant in a blanket and stick her fingers in her baby's eyes to remove a small clear lens. As I grew up, I had contacts as well as glasses because doctors literally had to create vision for me. Just imagine being a teacher and having a 4yr old walk up to you with her hand over her eye saying "my contact fell out, can you help get it back in?"
In second grade, we began to realize they my eyes were crossing. Not a slight cross, instead a 'keep doing that and your face is going to stick like that' kind of cross. My opthamologist had to cut, move, and sew my optical muscles to keep the eye from crossing. Now since it just wouldn't be fair for one eye to be tortured and not the other, fourth grade marked my next surgery.
By middle school, my mom was pretty much over the idea of strapping me down, dodging my kicking feet, and gagging me to silence the screaming. She pushed for me to learn to handle my contacts myself. O that was an adventure. No one really knows how to tell a blind child how to stick a foreign object in her eye. But by 12 yrs old, I had mastered putting in and taking my lenses out without using a mirror. Those of you who use contacts will find that impressive. The image that will always make me laugh is a stranger walking into the eye doctor office. They walk into the area designated specifically for contacts; mirrors, bowls, solution, tweezers placed at every station. Now imagine scanning the room, seeing a college kid getting frustrated as he drops the "stupid thing" for the third time, a grown woman trying contacts for the first time, her face two inches from the mirror as she tries to manage the slippery lens and fluttering eyelid. Then there is me, a 12 year old kid kicking her feet because she can't touch the floor, puts the lens on her finger and pop it directly in her eye in under 4 sec. Let's just say, I was an oddity.
Then again, I have always been a rare patient. Every doctor office I have been in don't really know how to handle me. They see my prescription strength (+9.00), or read my chart, or look at how dry my eyes are and they all do the same thing.... "oh, wow". I have had to explain my vision to so many people, explain what I see and what I can't, explain to kids why I have such massive glasses at sleepovers. But now, after 26 years, this is going to all change. I have a surgery schedule to replace the lenses I lost at 6 weeks old. My surgery is in a little over two weeks; this is why I wanted to write this blog. I want to share my past, my present and my future during this life altering procedure. More to come :)
This journey I mentioned has been my journey to sight. I know, that seems silly for most people :) but it has been anything but silly for me. Some of you already know my story, but for those of you who don't, where better to start than the beginning. I was born with Congenital Cataracts. For those smiling and nodding because those two words mean nothing to you, let me break it down. A cataract is "a cloudiness or opacity in the normally transparent crystalline lens of the eye. This cloudiness can cause a decrease in vision and may lead to eventual blindness." Congenital simply means to present at birth. So for those playing at home, this means I was born with opacity or clouds in the center of my lenses. If it was not treated it would lead to almost complete loss of vision in both of my eyes. Though they haven't found a cause for cataracts or found a specific genetic tie, I received my cataracts from my father who was also born with it.
The day they told my parents I had the same disease as my father, he cried. After a few moments of anger, fear, sadness, they bucked up and were determined to give me the best vision they could. This meant surgeries, contacts, and lots and lots of appointments.
In second grade, we began to realize they my eyes were crossing. Not a slight cross, instead a 'keep doing that and your face is going to stick like that' kind of cross. My opthamologist had to cut, move, and sew my optical muscles to keep the eye from crossing. Now since it just wouldn't be fair for one eye to be tortured and not the other, fourth grade marked my next surgery.
By middle school, my mom was pretty much over the idea of strapping me down, dodging my kicking feet, and gagging me to silence the screaming. She pushed for me to learn to handle my contacts myself. O that was an adventure. No one really knows how to tell a blind child how to stick a foreign object in her eye. But by 12 yrs old, I had mastered putting in and taking my lenses out without using a mirror. Those of you who use contacts will find that impressive. The image that will always make me laugh is a stranger walking into the eye doctor office. They walk into the area designated specifically for contacts; mirrors, bowls, solution, tweezers placed at every station. Now imagine scanning the room, seeing a college kid getting frustrated as he drops the "stupid thing" for the third time, a grown woman trying contacts for the first time, her face two inches from the mirror as she tries to manage the slippery lens and fluttering eyelid. Then there is me, a 12 year old kid kicking her feet because she can't touch the floor, puts the lens on her finger and pop it directly in her eye in under 4 sec. Let's just say, I was an oddity.
Then again, I have always been a rare patient. Every doctor office I have been in don't really know how to handle me. They see my prescription strength (+9.00), or read my chart, or look at how dry my eyes are and they all do the same thing.... "oh, wow". I have had to explain my vision to so many people, explain what I see and what I can't, explain to kids why I have such massive glasses at sleepovers. But now, after 26 years, this is going to all change. I have a surgery schedule to replace the lenses I lost at 6 weeks old. My surgery is in a little over two weeks; this is why I wanted to write this blog. I want to share my past, my present and my future during this life altering procedure. More to come :)
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