Okay....quick post because I said that if I could be upright and use the computer that I'd have to post each day. Well, I'm upright. I think I'm using the computer correctly. But my head is screaming at me today.
Yup, it's a migraine day.
I wouldn't even be up on the computer if the ophthalmologist's office hadn't called to schedule my ERG and MRI for next week. Actually, when they heard I was having a migraine they said they wish they'd been able to do one now. Too bad for them. My head and I are going back to lay down with ice on it to try to get rid of this.
So, there's the post for today. Hope you liked it. I'm not even sure what it says of if any is spelled correctly. I'm just trying to check-off my "duty" to post today.
Showing posts with label ophthalmologist. Show all posts
Showing posts with label ophthalmologist. Show all posts
Friday, March 9, 2012
Thursday, March 8, 2012
Same info, different day - The continuing rant
Well, now that my eyes are working again I can get back to the rant I so wanted to start yesterday but had problems seeing my own fingers, much less the keyboard or the monitor.
Let's catch everyone up in the ongoing saga. A few posts back I related the story of what's been happening recently regarding my vision and the lack thereof. I've seen my optometrist; been referred to a glaucoma specialist; been referred to a retinal specialist; have had multiple versions of two different tests taken at each appointment; and was finally being referred to a neuro-ophthalmologist at a large, prestigious college/hospital across the state from me in order to determine what in the heck is happening. Yesterday, Husband and I drove three hours so I could have the scans and exams needed to identify the problem. I'd been advised that it would take a minimum of three hours for everything and readied myself for being shoved into large machines to determine what, if anything, is in there with my eyes and my brain that could be causing the problem.
After arriving at the doctor's office, I was quickly ushered back to a room where a technician asked me a lot of questions about my past medical history and asked me to read letters on the eye chart with my glasses on because my new prescription isn't correcting me to 20/20 (which is what got this whole thing started). She then had me stare at a notepad with a grid on it and asked me to describe what the lines looked like. With one eye I could only see half of the grid and with the other it looked like the lines were wavy and my brain was trying to make sense of it and I started seeing boxes "popping-up" from the page. She looked at me and scribbled notes on her paper. She gave me a color-vision test, which I'm pretty sure I passed easily other than perhaps mistaking a "6" for an "8" because those dots are so small. She asked me more questions, dilated my eyes, and checked the pressure inside of them. It was normal, as I could have told her. In fact, it was lower than it's been in the past few exams.
Then, and here's where I started to get irritated, she asked me why I was there. I told her it was because I was referred by a retinal specialist who said he couldn't help me because a glaucoma specialist said I didn't have glaucoma and that I should see said retinal specialist and that his office was to have emailed my files to this doctor who is part of the same practice and if they needed the files they could go down the hallway to get them. She nodded and wrote more information down on her paper and finally looked in the computer and found the notes from the retinal specialist. She asked me to go out into the smaller waiting room and wait for the doctor.
Celeste was with me (of course) and we made our way to a small seating area to wait. Upon arriving at the seating area, a large African-American woman began to jump up-and-down and grab everything she owned and kept repeating, "It's a dog! It's a dog!" Great....the last thing I needed....someone to cause a scene because my service dog is with me and they don't like them. I calmly replied to the lady that, yes, she is a dog but that she's a trained service dog and would not bother her. The woman continued to try to find a seat -- any seat -- near where her stuff was but not close to us. She nearly sat on two other ladies patiently waiting their turn or for someone who was being seen. She continued to protest loudly that she didn't like dogs and that there was a dog near her and she didn't like it. I had already scanned the room with what vision I had after my eyes were fully dilated and saw no other vacant seats except the one I chose which also gave Celeste a small area to lay down so that should would be out of the main flow of traffic. I sat down and said, in as polite of a voice as I could muster by this time, that Celeste would not come near her and would stay under my seat by my feet. This did nothing to appease the woman who began to tell me that I couldn't sit with the dog and continued to make a scene. Finally, and I know I shouldn't have, I replied, "Look! If you'd sit down and shut up, she wouldn't pay any attention to you because she is trained to keep her focus on me! Your tantrum is actually putting me in danger because she thinks you could be a threat and is now not paying attention to me as she is supposed to. Be quiet and don't look at her!" The other ladies in the seating area giggled under their breath but I know it wasn't the most polite thing to do. The woman sat down and tried to become one with the arm of the chair farthest from us and Celeste quickly crossed her front paws and put her head down to rest.
The doctor soon called me to come back and be seen and Celeste and I left the seating area, still hearing slight giggles from the other ladies and hearing more protests from the woman who believes dogs shouldn't be allowed wherever she is. He was a nice gentleman and asked a lot of questions about my past visual history (which isn't good) and he performed some basic visual field tests. I'm so tired of having to look at someone's nose and tell them when I can see their fingers and how many they're holding up. I could almost give lessons on how to fake it because they all use the same pattern and the same number of fingers on each test. But, I'm desperate for answers and I tried really hard to stare at his nose and not look around for his fingers and made myself wait until I could actually see them before answering. I didn't get some of them right. Sometimes I thought there was only one but he was actually holding two. That was depressing.
He said he wanted to do a specialized visual field test that would better determine my peripheral vision. I asked if it meant sticking my head into the large, white, fish-bowl like structure and clicking when I saw dots of light appear on it and he said it was. I sighed because I knew it was going to be another one of the same tests I'd just done back in January and in February. I told him I'd had those tests before and even referred him to the large stack of papers I was given that had their results. He said he wanted to do this "different" version because it worked more on my peripheral vision instead of my entire field of vision. I walked back to the waiting area and blindly tried to find an empty seat FAR away from the woman who was still upset from our previous encounter.
The doctor's technician came and got me and we went to do the test. The difference between this test and the others I'd taken was that she manually controlled the dot of light and I had a washer in my hand and was supposed to tap it on the table when I could see the light. She kept reminding me to tap the washer and I said that when she turned the light on I would. We both realized that she was using a light too small and faint for me to see. So, she changed the size and intensity of the light often and I clicked the washer on the table whenever I could see the dot. It's very hard to keep yourself from looking around in the dome because you want to see the light or verify that you saw what you thought you saw. When the test is done by the computer, it registers if you look away from the target area. This one didn't and I hope I did it correctly. One bad thing about it was that my eyes were dilated and the bright lights kept creating shadows that made it harder to see each new light. Like when you stare at the sun or have a flashlight shown in your eyes and then you can't get that annoying spot out of your vision? Yup, it's like that but with dozens of those spots and new ones being created every second.
I finished the test and was led back to the seating area. This time I wasn't seated near the lady who hated dogs but ended up next to a family that thought Celeste was for show-and-tell. They wanted to pet her but weren't sure if I would let them (I could overhear this conversation as they thought they were whispering but also believed she was a guide dog which would automatically make me blind and deaf) and were quite shocked when I looked at them and told them they couldn't. Then they wanted to ask me why I had her if I could see and what my medical condition was. No questions about her and what she does -- just very personal questions about me and my history. I was very pleased that the doctor called me back to his exam room so I could get away from them.
I put Celeste back into the corner of the room and sat down to await the result and find out what is causing all of my problems. He said that I did well on the test and actually did better than he thought I would and that it all must be in my head. My jaw dropped when I heard this. I explained calmly (because by this point I was so stunned at what I'd just heard repeated for the umpteenth time that I wanted to scream) that ever since I was 19 and started having to wear bifocals and was first diagnosed with lattice degeneration that I've been hearing that "it's all in my head." I asked him why I can't see at night unless something is brightly illuminated. He said he didn't know but that if I was worried about it and was afraid to drive at night to not do it. I asked him why I'm having problems seeing items in my visual periphery and why my vision can't be corrected to better than 20/50. He said he didn't know but that his specialized test (done by a human, not a computer, remember) said I should be fine. I then asked again why even during the daytime when I'm driving I can't read the road signs and have to guess at what they're saying and that I use my GPS everywhere I go because it sits closer to me and I can read the street names on it because I can't read the road signs. Again, he said he didn't know but that if I was concerned about driving I shouldn't do it. I asked him if there were any answers he could give me and he said that when I went back to my glaucoma specialist that I should tell him all of this.
What??? By now I was between numb and furious and those two feelings kept changing back-and-forth quickly within me. I told him that I wasn't going to be seeing the glaucoma specialist anymore because I don't have glaucoma and that's why I was referred to the retinal specialist who looked at my eyes and said he couldn't do anything for me either. The doctor said that the retinal specialist (who is a part of the same practice, remember) wasn't known for taking very good notes and didn't really send much info to go on regarding what he thought about my eyes.
I thought I was going to scream. Really scream. I could not believe that I was hearing the same old line -- "It's all in your head." I even told him that if it was "in my head" and I was making it up I could most certainly think of a lot of better things to dream-up than this.
He finally decided that I need to have an MRI and an ERG (electroretinogram -- basically a big word for a test to determine which parts of my retina actually work) because I could be one of the few with normal-looking eyes but who actually has a problem. Normal? When I was in my early-twenties I had a doctor looking at retinal photos who thought he'd entered the wrong room because I was sitting there and he said that the photos looked like the retinas of an 80-year-old. But, at least now he'd decided that the big tests (which is the whole reason I was referred there) needed to be done. But he couldn't do them. Not that day, anyway. The person who ran the ERG machine was out and I'd have to come back.
After three hours in the doctor's office, I went home with nothing. I was told that the purpose of that visit was for me to have the MRI and ERG and figure out what was wrong and to expect to be there at a minimum of three hours for all of it. Husband took the whole day off work so that he could drive me there and back and hopefully get some answers. Nope. Nothing. The doctor's office is supposed to call me back today (maybe) to schedule another appointment for the tests I was expecting to have done yesterday.
When we were in the elevator of the parking garage and finally had some privacy I told Husband what the doctor had said, followed by a sharp expletive that I won't reprint here. I'd stamped my foot and said it loud enough without realizing that we were arriving at the level where we'd parked that I startled someone waiting to use the elevator. I apologized and we mad our way to the car. I cried on the way home. Husband is very understanding and has been constantly reminding me that whatever is wrong we'll deal with and that he'll always be there to help take care of me. I thanked him again and again but couldn't stop crying because I was so frustrated. I'd just been told the exact same thing by a doctor -- supposedly one of the best in the field nationwide (and will probably cost me a fortune) -- that I'd been told over and over again.
Today both Celeste and Harley can tell I'm upset. I'm sitting and waiting for a phone call that may or may not come to schedule an appointment for me to go all the way back and maybe, just maybe, finally get some concrete information. Something....anything.....information so I don't have to keep my life on pause while I'm worried just what I'll do as this continues to worsen and worry about what my last vision could be.
So, there you have it. Either I'm going blind from a mysterious cause that no one can diagnose or I'm bat-crap crazy and my brain is telling me I can't see things that I really can, which is an incredibly stupid thing for it to do since I need my vision to continue designing for the theatre (which I enjoy) and, more importantly, so I can work to pay-off all the bills I'm racking-up (which isn't as enjoyable but needs to be done). Oh well....I guess the standard "SSDD" (I'll let you look up what that usually stands for) idiom is certainly alive and well in my world.
Let's catch everyone up in the ongoing saga. A few posts back I related the story of what's been happening recently regarding my vision and the lack thereof. I've seen my optometrist; been referred to a glaucoma specialist; been referred to a retinal specialist; have had multiple versions of two different tests taken at each appointment; and was finally being referred to a neuro-ophthalmologist at a large, prestigious college/hospital across the state from me in order to determine what in the heck is happening. Yesterday, Husband and I drove three hours so I could have the scans and exams needed to identify the problem. I'd been advised that it would take a minimum of three hours for everything and readied myself for being shoved into large machines to determine what, if anything, is in there with my eyes and my brain that could be causing the problem.
After arriving at the doctor's office, I was quickly ushered back to a room where a technician asked me a lot of questions about my past medical history and asked me to read letters on the eye chart with my glasses on because my new prescription isn't correcting me to 20/20 (which is what got this whole thing started). She then had me stare at a notepad with a grid on it and asked me to describe what the lines looked like. With one eye I could only see half of the grid and with the other it looked like the lines were wavy and my brain was trying to make sense of it and I started seeing boxes "popping-up" from the page. She looked at me and scribbled notes on her paper. She gave me a color-vision test, which I'm pretty sure I passed easily other than perhaps mistaking a "6" for an "8" because those dots are so small. She asked me more questions, dilated my eyes, and checked the pressure inside of them. It was normal, as I could have told her. In fact, it was lower than it's been in the past few exams.
Then, and here's where I started to get irritated, she asked me why I was there. I told her it was because I was referred by a retinal specialist who said he couldn't help me because a glaucoma specialist said I didn't have glaucoma and that I should see said retinal specialist and that his office was to have emailed my files to this doctor who is part of the same practice and if they needed the files they could go down the hallway to get them. She nodded and wrote more information down on her paper and finally looked in the computer and found the notes from the retinal specialist. She asked me to go out into the smaller waiting room and wait for the doctor.
Celeste was with me (of course) and we made our way to a small seating area to wait. Upon arriving at the seating area, a large African-American woman began to jump up-and-down and grab everything she owned and kept repeating, "It's a dog! It's a dog!" Great....the last thing I needed....someone to cause a scene because my service dog is with me and they don't like them. I calmly replied to the lady that, yes, she is a dog but that she's a trained service dog and would not bother her. The woman continued to try to find a seat -- any seat -- near where her stuff was but not close to us. She nearly sat on two other ladies patiently waiting their turn or for someone who was being seen. She continued to protest loudly that she didn't like dogs and that there was a dog near her and she didn't like it. I had already scanned the room with what vision I had after my eyes were fully dilated and saw no other vacant seats except the one I chose which also gave Celeste a small area to lay down so that should would be out of the main flow of traffic. I sat down and said, in as polite of a voice as I could muster by this time, that Celeste would not come near her and would stay under my seat by my feet. This did nothing to appease the woman who began to tell me that I couldn't sit with the dog and continued to make a scene. Finally, and I know I shouldn't have, I replied, "Look! If you'd sit down and shut up, she wouldn't pay any attention to you because she is trained to keep her focus on me! Your tantrum is actually putting me in danger because she thinks you could be a threat and is now not paying attention to me as she is supposed to. Be quiet and don't look at her!" The other ladies in the seating area giggled under their breath but I know it wasn't the most polite thing to do. The woman sat down and tried to become one with the arm of the chair farthest from us and Celeste quickly crossed her front paws and put her head down to rest.
The doctor soon called me to come back and be seen and Celeste and I left the seating area, still hearing slight giggles from the other ladies and hearing more protests from the woman who believes dogs shouldn't be allowed wherever she is. He was a nice gentleman and asked a lot of questions about my past visual history (which isn't good) and he performed some basic visual field tests. I'm so tired of having to look at someone's nose and tell them when I can see their fingers and how many they're holding up. I could almost give lessons on how to fake it because they all use the same pattern and the same number of fingers on each test. But, I'm desperate for answers and I tried really hard to stare at his nose and not look around for his fingers and made myself wait until I could actually see them before answering. I didn't get some of them right. Sometimes I thought there was only one but he was actually holding two. That was depressing.
He said he wanted to do a specialized visual field test that would better determine my peripheral vision. I asked if it meant sticking my head into the large, white, fish-bowl like structure and clicking when I saw dots of light appear on it and he said it was. I sighed because I knew it was going to be another one of the same tests I'd just done back in January and in February. I told him I'd had those tests before and even referred him to the large stack of papers I was given that had their results. He said he wanted to do this "different" version because it worked more on my peripheral vision instead of my entire field of vision. I walked back to the waiting area and blindly tried to find an empty seat FAR away from the woman who was still upset from our previous encounter.
The doctor's technician came and got me and we went to do the test. The difference between this test and the others I'd taken was that she manually controlled the dot of light and I had a washer in my hand and was supposed to tap it on the table when I could see the light. She kept reminding me to tap the washer and I said that when she turned the light on I would. We both realized that she was using a light too small and faint for me to see. So, she changed the size and intensity of the light often and I clicked the washer on the table whenever I could see the dot. It's very hard to keep yourself from looking around in the dome because you want to see the light or verify that you saw what you thought you saw. When the test is done by the computer, it registers if you look away from the target area. This one didn't and I hope I did it correctly. One bad thing about it was that my eyes were dilated and the bright lights kept creating shadows that made it harder to see each new light. Like when you stare at the sun or have a flashlight shown in your eyes and then you can't get that annoying spot out of your vision? Yup, it's like that but with dozens of those spots and new ones being created every second.
I finished the test and was led back to the seating area. This time I wasn't seated near the lady who hated dogs but ended up next to a family that thought Celeste was for show-and-tell. They wanted to pet her but weren't sure if I would let them (I could overhear this conversation as they thought they were whispering but also believed she was a guide dog which would automatically make me blind and deaf) and were quite shocked when I looked at them and told them they couldn't. Then they wanted to ask me why I had her if I could see and what my medical condition was. No questions about her and what she does -- just very personal questions about me and my history. I was very pleased that the doctor called me back to his exam room so I could get away from them.
I put Celeste back into the corner of the room and sat down to await the result and find out what is causing all of my problems. He said that I did well on the test and actually did better than he thought I would and that it all must be in my head. My jaw dropped when I heard this. I explained calmly (because by this point I was so stunned at what I'd just heard repeated for the umpteenth time that I wanted to scream) that ever since I was 19 and started having to wear bifocals and was first diagnosed with lattice degeneration that I've been hearing that "it's all in my head." I asked him why I can't see at night unless something is brightly illuminated. He said he didn't know but that if I was worried about it and was afraid to drive at night to not do it. I asked him why I'm having problems seeing items in my visual periphery and why my vision can't be corrected to better than 20/50. He said he didn't know but that his specialized test (done by a human, not a computer, remember) said I should be fine. I then asked again why even during the daytime when I'm driving I can't read the road signs and have to guess at what they're saying and that I use my GPS everywhere I go because it sits closer to me and I can read the street names on it because I can't read the road signs. Again, he said he didn't know but that if I was concerned about driving I shouldn't do it. I asked him if there were any answers he could give me and he said that when I went back to my glaucoma specialist that I should tell him all of this.
What??? By now I was between numb and furious and those two feelings kept changing back-and-forth quickly within me. I told him that I wasn't going to be seeing the glaucoma specialist anymore because I don't have glaucoma and that's why I was referred to the retinal specialist who looked at my eyes and said he couldn't do anything for me either. The doctor said that the retinal specialist (who is a part of the same practice, remember) wasn't known for taking very good notes and didn't really send much info to go on regarding what he thought about my eyes.
I thought I was going to scream. Really scream. I could not believe that I was hearing the same old line -- "It's all in your head." I even told him that if it was "in my head" and I was making it up I could most certainly think of a lot of better things to dream-up than this.
He finally decided that I need to have an MRI and an ERG (electroretinogram -- basically a big word for a test to determine which parts of my retina actually work) because I could be one of the few with normal-looking eyes but who actually has a problem. Normal? When I was in my early-twenties I had a doctor looking at retinal photos who thought he'd entered the wrong room because I was sitting there and he said that the photos looked like the retinas of an 80-year-old. But, at least now he'd decided that the big tests (which is the whole reason I was referred there) needed to be done. But he couldn't do them. Not that day, anyway. The person who ran the ERG machine was out and I'd have to come back.
After three hours in the doctor's office, I went home with nothing. I was told that the purpose of that visit was for me to have the MRI and ERG and figure out what was wrong and to expect to be there at a minimum of three hours for all of it. Husband took the whole day off work so that he could drive me there and back and hopefully get some answers. Nope. Nothing. The doctor's office is supposed to call me back today (maybe) to schedule another appointment for the tests I was expecting to have done yesterday.
When we were in the elevator of the parking garage and finally had some privacy I told Husband what the doctor had said, followed by a sharp expletive that I won't reprint here. I'd stamped my foot and said it loud enough without realizing that we were arriving at the level where we'd parked that I startled someone waiting to use the elevator. I apologized and we mad our way to the car. I cried on the way home. Husband is very understanding and has been constantly reminding me that whatever is wrong we'll deal with and that he'll always be there to help take care of me. I thanked him again and again but couldn't stop crying because I was so frustrated. I'd just been told the exact same thing by a doctor -- supposedly one of the best in the field nationwide (and will probably cost me a fortune) -- that I'd been told over and over again.
Today both Celeste and Harley can tell I'm upset. I'm sitting and waiting for a phone call that may or may not come to schedule an appointment for me to go all the way back and maybe, just maybe, finally get some concrete information. Something....anything.....information so I don't have to keep my life on pause while I'm worried just what I'll do as this continues to worsen and worry about what my last vision could be.
So, there you have it. Either I'm going blind from a mysterious cause that no one can diagnose or I'm bat-crap crazy and my brain is telling me I can't see things that I really can, which is an incredibly stupid thing for it to do since I need my vision to continue designing for the theatre (which I enjoy) and, more importantly, so I can work to pay-off all the bills I'm racking-up (which isn't as enjoyable but needs to be done). Oh well....I guess the standard "SSDD" (I'll let you look up what that usually stands for) idiom is certainly alive and well in my world.
Thursday, March 1, 2012
What am I doing....
This blog thing sounded so simple when it started. "Sure, you've got free-time -- fill it by writing!" the "voices" said.
"You've got such interesting stories, they need to be written down," the therapist said.
"Your stories and the way you tell them are hysterical! You could be famous if you wrote a book!" the family members said.
Today I sat down and looked at the calendar. "If you'd just gotten off your duff and started the blog on your 40th birthday like you wanted, you'd be almost done by now!" my mind said. It's now got the "voices" taunting me over my ability to procrastinate like there's always a tomorrow to do something.
I'm into my third month of this and I don't feel like I've made any really insightful posts. No words of wisdom that others would inspire others. Oh, sure, when I ranted about the crappy military collector's show and the one where they freeze-dried people's pets, those got a lot of responses. And, yes, my political rantings have had higher read-counts -- but those are fads. This political season is going to end in November whether we like the outcome or not. Based on what I'm hearing on the news and in other blogs and from my friends on Facebook, I don't think we're going to like it.
So today I thought about why I started the blog. One of the biggest reasons was so that I could dump all of the crap the "voices" in my head keep badgering me about into a place where I can (1) either deal with it in a fun instead of tragic way, (2) deal with issues that are so old yet still hurtful in order to try to make sense of them so I won't have to deal with them anymore, (3) dump ideas and work with them until I've created something useful or seen that it was a waste of time in the first place, or (4) at least keep my writing skills up-to-snuff and entertain and/or educate others. Husband and my therapist keep saying how stunned they are at the amount of things I know about and can pull obscure facts from thin air in mid-conversation. I thought maybe this would be the place to figure out how and why I know what I know because when they ask me where I learned it, I don't know.
But I look at today and the past few days and wonder if I'm actually accomplishing anything at all. Most of my days since last Friday have been spent either at the gun show (which was fun and we made a decent profit after expenses) or asleep because of the pain medication combined with my daily meds that can knock me on my butt without the extra help. I've been fretting over a community theatre production because if my name is going to be on the programme as a technical director, then dammit it's going to be the best I can produce because I have a basically non-existent professional theatrical reputation to uphold. (Yes, I did get to work with "Miss Saigon" and "Sunset Boulevard" when I went to London on a theatrical tour/internship, but that was in the 1990s and no one remembers it but me.) I'm a perfectionist and I don't like to skimp or slide-over particulars but I'm being forced to with no money, no assistance, and no time to make it better.
I've been trying to hide some medical issues that have come-up from certain extended family members because the last thing I need is a lot of drama over something no one can do anything about at the moment. My Step-Father recently severely broke his right leg and has another minor fracture in his left. He's having to stay at a rehabilitation hospital because he cannot walk at the moment (because of the rods and pins) and also needs his dialysis. This has me feeling bad that he's alone there because it's three hours away from where Biological Mother is at their home preparing it for when he can return home again. I'd go to visit him but my medical issue prevents me from traveling long distances by myself. And when Biological Mother asked me on the phone the other day how a doctor's appointment went, I had to remember that she was thinking of one months ago because I hadn't told her what's been happening. I hadn't told her that I went to that appointment which led me to two others with the same doctor and a referral to another specialist who has now referred me to another specialist I have to see next week and if that person can't figure out what's going on, then there's no real hope of ever fixing the problem.
So, I finally told her when she called the other day. I told her that I'd gone to the optometrist to get new glasses but the new prescription doesn't help me see any better than the old prescription. I tested lenses with the new prescription and couldn't see anything any clearer at any distance. I was referred to a glaucoma specialist because my optic nerve is cupped in a manner that, at first glance, would make any ophthalmologist jump to the conclusion that I have glaucoma. I've been told for over 20 years that I have low-tension glaucoma (the type that damages the eye but can't be detected by just measuring the pressure of the eye alone), so I went to have a special test done. It's called an OCT and I can't remember at the moment what it stands for but they flash lasers at my retinas and measure the depth and thickness of them to determine the amount of damage.
I took the results to the glaucoma specialist who said, in a very assertive tone, that I don't have glaucoma. He had me re-take the OCT exam as well as a visual field test. The visual field test is like sticking your head in a fishbowl where they place a patch over one eye and then flash dots of light at different intensities all around the domed surface and you're supposed to click a button when you see the flashing dot. Oh, and you have to stare at a bigger, red dot while they're doing that so you won't look around the bowl and cheat by looking for the lights. After they do one eye, they do the same thing for the other. I failed it badly. The technician kept trying to remind me to click the button when I saw the lights and I told her if she'd make the lights show up I'd click it. I didn't know that the test had already begun.
The glaucoma specialist then looked at my eyes again, reviewed the tests again, and examined my eyes to see how well I could see with my current glasses or with a new prescription. He came to the same conclusion -- a new prescription wasn't helping me see any clearer. As a matter of fact, my eyes had gotten even worse since the last time I saw him a few weeks before. Now there was a serious problem. In our state, if you can't see better than 20/50 with correction (glasses or contacts), you can't legally drive at night. I've been having a lot of problems with my night vision for a long time and had recently noticed that it was much, much worse. I just didn't know it was that much worse. He immediately referred me to a retinal specialist across the state to see if he could help fix whatever is going on because it's not glaucoma and he's now stumped.
So, I travel across the state to have another appointment. My eyes are dilated and another OCT test is done (I hope the insurance pays for all of these repeat tests). An angiogram of my retinas was done so that detailed photos could be taken to determine where the damages are. I know that I have a type of macular degeneration called Lattice Degeneration, but I couldn't imagine that after all of this time it would just start acting-up. Oh, and if they ever do an angiogram on your eyes, fair warning -- they inject flourescent dye into your veins so they can see the veins in your eyes but forget to tell you that you'll urinate flourescent colors for two days. Just thought you'd like to know.
The retinal specialist comes in, looks in my eye, and says, "You must have glaucoma based on your optic nerve." I tell him that if he'd read the notes and test results, he'd find that I don't have glaucoma. He stood there and read my file, reviewed every test result that was sent to him, looked in my eyes again, and said, "I don't know what you have." They checked my vision again and now I'm up to 20/60 with glasses. One more jump and I'll end up unable to legally drive -- day or night. he continued to check tests and the photos and reports before sitting down in front of me and admitting, "I can't do anything for you. There's nothing wrong with your retinas that should be causing this that I could fix. You need to see someone else."
Now I'm waiting until next week to see a neuro-ophthalmologist at one of the more-prestigious medical colleges in the United States (which happens to be across the state from where I live) so that they can scan my eyes, my optic nerves, my brain, and whatever else they decide to stick into a machine to see if there's a tumor, a damaged area, a disease, an alien, or something else. I'm waiting for the usual answer I get -- "It's all in your head." My eyes are in my head, so of course it's "in my head." I had an ophthalmologist once tell me it was "in my head" as if I was making it all up. He was quite humbled when a partner of his had to do a cryogenic surgery to repair a hole in my retina that the first one had missed by thinking I was pretending (and I didn't have to pay for the surgery). But now I'm facing the prospect of not being able to drive, not knowing what's causing this, and/or finding out that it could be something that can or can't be fixed easily and -- guess what -- Biological Mother is worried now. I didn't want her to be worried now because there's nothing that can be done until I have the tests and someone comes up with an answer. And if this doctor can't come up with an answer, there's no one left to see (no pun intended).
What am I doing? I'm sitting here completing one of the objectives of my blog by getting things out in the open and trying to get my "voices" to shut-up about them. But, at the same time, I'm boring the rest of y'all to death, announcing a problem that other family members still don't know about (but they might as well hear it from me here), and I'm still not feeling any better about it. If this is supposed to be therapeutic, it's not helping. Even Celeste is noticing the tension in the room and trying to get me to quit typing.
Am I doing this right? Is this actually going to work? It is worth the daily "freak-out" when I don't have a topic already in mind? Does it fundamentally matter in the greater scheme of things? And would anyone notice?
And, before anyone says it, the answer is not "42." I've already tried it and it's not worked....yet.
"You've got such interesting stories, they need to be written down," the therapist said.
"Your stories and the way you tell them are hysterical! You could be famous if you wrote a book!" the family members said.
Today I sat down and looked at the calendar. "If you'd just gotten off your duff and started the blog on your 40th birthday like you wanted, you'd be almost done by now!" my mind said. It's now got the "voices" taunting me over my ability to procrastinate like there's always a tomorrow to do something.
I'm into my third month of this and I don't feel like I've made any really insightful posts. No words of wisdom that others would inspire others. Oh, sure, when I ranted about the crappy military collector's show and the one where they freeze-dried people's pets, those got a lot of responses. And, yes, my political rantings have had higher read-counts -- but those are fads. This political season is going to end in November whether we like the outcome or not. Based on what I'm hearing on the news and in other blogs and from my friends on Facebook, I don't think we're going to like it.
So today I thought about why I started the blog. One of the biggest reasons was so that I could dump all of the crap the "voices" in my head keep badgering me about into a place where I can (1) either deal with it in a fun instead of tragic way, (2) deal with issues that are so old yet still hurtful in order to try to make sense of them so I won't have to deal with them anymore, (3) dump ideas and work with them until I've created something useful or seen that it was a waste of time in the first place, or (4) at least keep my writing skills up-to-snuff and entertain and/or educate others. Husband and my therapist keep saying how stunned they are at the amount of things I know about and can pull obscure facts from thin air in mid-conversation. I thought maybe this would be the place to figure out how and why I know what I know because when they ask me where I learned it, I don't know.
But I look at today and the past few days and wonder if I'm actually accomplishing anything at all. Most of my days since last Friday have been spent either at the gun show (which was fun and we made a decent profit after expenses) or asleep because of the pain medication combined with my daily meds that can knock me on my butt without the extra help. I've been fretting over a community theatre production because if my name is going to be on the programme as a technical director, then dammit it's going to be the best I can produce because I have a basically non-existent professional theatrical reputation to uphold. (Yes, I did get to work with "Miss Saigon" and "Sunset Boulevard" when I went to London on a theatrical tour/internship, but that was in the 1990s and no one remembers it but me.) I'm a perfectionist and I don't like to skimp or slide-over particulars but I'm being forced to with no money, no assistance, and no time to make it better.
I've been trying to hide some medical issues that have come-up from certain extended family members because the last thing I need is a lot of drama over something no one can do anything about at the moment. My Step-Father recently severely broke his right leg and has another minor fracture in his left. He's having to stay at a rehabilitation hospital because he cannot walk at the moment (because of the rods and pins) and also needs his dialysis. This has me feeling bad that he's alone there because it's three hours away from where Biological Mother is at their home preparing it for when he can return home again. I'd go to visit him but my medical issue prevents me from traveling long distances by myself. And when Biological Mother asked me on the phone the other day how a doctor's appointment went, I had to remember that she was thinking of one months ago because I hadn't told her what's been happening. I hadn't told her that I went to that appointment which led me to two others with the same doctor and a referral to another specialist who has now referred me to another specialist I have to see next week and if that person can't figure out what's going on, then there's no real hope of ever fixing the problem.
So, I finally told her when she called the other day. I told her that I'd gone to the optometrist to get new glasses but the new prescription doesn't help me see any better than the old prescription. I tested lenses with the new prescription and couldn't see anything any clearer at any distance. I was referred to a glaucoma specialist because my optic nerve is cupped in a manner that, at first glance, would make any ophthalmologist jump to the conclusion that I have glaucoma. I've been told for over 20 years that I have low-tension glaucoma (the type that damages the eye but can't be detected by just measuring the pressure of the eye alone), so I went to have a special test done. It's called an OCT and I can't remember at the moment what it stands for but they flash lasers at my retinas and measure the depth and thickness of them to determine the amount of damage.
I took the results to the glaucoma specialist who said, in a very assertive tone, that I don't have glaucoma. He had me re-take the OCT exam as well as a visual field test. The visual field test is like sticking your head in a fishbowl where they place a patch over one eye and then flash dots of light at different intensities all around the domed surface and you're supposed to click a button when you see the flashing dot. Oh, and you have to stare at a bigger, red dot while they're doing that so you won't look around the bowl and cheat by looking for the lights. After they do one eye, they do the same thing for the other. I failed it badly. The technician kept trying to remind me to click the button when I saw the lights and I told her if she'd make the lights show up I'd click it. I didn't know that the test had already begun.
The glaucoma specialist then looked at my eyes again, reviewed the tests again, and examined my eyes to see how well I could see with my current glasses or with a new prescription. He came to the same conclusion -- a new prescription wasn't helping me see any clearer. As a matter of fact, my eyes had gotten even worse since the last time I saw him a few weeks before. Now there was a serious problem. In our state, if you can't see better than 20/50 with correction (glasses or contacts), you can't legally drive at night. I've been having a lot of problems with my night vision for a long time and had recently noticed that it was much, much worse. I just didn't know it was that much worse. He immediately referred me to a retinal specialist across the state to see if he could help fix whatever is going on because it's not glaucoma and he's now stumped.
So, I travel across the state to have another appointment. My eyes are dilated and another OCT test is done (I hope the insurance pays for all of these repeat tests). An angiogram of my retinas was done so that detailed photos could be taken to determine where the damages are. I know that I have a type of macular degeneration called Lattice Degeneration, but I couldn't imagine that after all of this time it would just start acting-up. Oh, and if they ever do an angiogram on your eyes, fair warning -- they inject flourescent dye into your veins so they can see the veins in your eyes but forget to tell you that you'll urinate flourescent colors for two days. Just thought you'd like to know.
The retinal specialist comes in, looks in my eye, and says, "You must have glaucoma based on your optic nerve." I tell him that if he'd read the notes and test results, he'd find that I don't have glaucoma. He stood there and read my file, reviewed every test result that was sent to him, looked in my eyes again, and said, "I don't know what you have." They checked my vision again and now I'm up to 20/60 with glasses. One more jump and I'll end up unable to legally drive -- day or night. he continued to check tests and the photos and reports before sitting down in front of me and admitting, "I can't do anything for you. There's nothing wrong with your retinas that should be causing this that I could fix. You need to see someone else."
Now I'm waiting until next week to see a neuro-ophthalmologist at one of the more-prestigious medical colleges in the United States (which happens to be across the state from where I live) so that they can scan my eyes, my optic nerves, my brain, and whatever else they decide to stick into a machine to see if there's a tumor, a damaged area, a disease, an alien, or something else. I'm waiting for the usual answer I get -- "It's all in your head." My eyes are in my head, so of course it's "in my head." I had an ophthalmologist once tell me it was "in my head" as if I was making it all up. He was quite humbled when a partner of his had to do a cryogenic surgery to repair a hole in my retina that the first one had missed by thinking I was pretending (and I didn't have to pay for the surgery). But now I'm facing the prospect of not being able to drive, not knowing what's causing this, and/or finding out that it could be something that can or can't be fixed easily and -- guess what -- Biological Mother is worried now. I didn't want her to be worried now because there's nothing that can be done until I have the tests and someone comes up with an answer. And if this doctor can't come up with an answer, there's no one left to see (no pun intended).
What am I doing? I'm sitting here completing one of the objectives of my blog by getting things out in the open and trying to get my "voices" to shut-up about them. But, at the same time, I'm boring the rest of y'all to death, announcing a problem that other family members still don't know about (but they might as well hear it from me here), and I'm still not feeling any better about it. If this is supposed to be therapeutic, it's not helping. Even Celeste is noticing the tension in the room and trying to get me to quit typing.
Am I doing this right? Is this actually going to work? It is worth the daily "freak-out" when I don't have a topic already in mind? Does it fundamentally matter in the greater scheme of things? And would anyone notice?
And, before anyone says it, the answer is not "42." I've already tried it and it's not worked....yet.
Subscribe to:
Posts (Atom)