Hate it when it's incredibly hot outside. Hate it even more when I don't realize that it's going to be very hot outside and accidentally wear dark-colored clothes which just help absorb the heat that my black car doesn't take from the sun. Fortunately, with Husband driving, I can either crank-up the air conditioning or hang my head out of the window. Celeste doesn't hang her head out the window like other dogs and prefers the air conditioning (and not having to see her "mommy" looking like an idiot).
Today I had to travel across the state again for my eyes. This time I was there for low-vision occupational therapy.
Yeah, I was like you. "How do you do visual occupational therapy?" was the first thing through my head when I heard about it. Actually, they have you try to read a lot of different items in many different sizes, try-out different types of light sources, determine how much functional vision you have, and make more suggestions on how to improve or adapt your current vision to what you need.
Unfortunately, there's not much they can do for me regarding my night blindness and decreased vision when driving. That's just something that I'm going to have to learn to live without even though I prefer being an independent person. Relying on someone to take me places just drives me crazy and I hate having to bum a ride from friends. I'm very thankful that Husband understands what's going on and isn't bothered by taking me places at night (well, not yet at least).
Fortunately with my desktop computer I have a large monitor and it makes it easier to see. When I'm on my laptop, I can increase the print size and make things easier to read. They showed me a special flourescent lamp that has a nice blue-tinted light that is very even and doesn't have a "hot spot" like an old incandescent bulb has. When we tried a regular desk lamp and one of the flourescent lamps, I was able to read much more and even smaller print with the flourescent one. It's not up to 20/20, but it's better. Now I've got to find some to put in the house so that I can enjoy reading my books like I used to. I can still apply for audiobooks through the state's library for the blind, but I hate having to listen to them and not being able to start and stop when I want like I can in a printed book. Some have suggested an E-Reader, but I prefer the feel and smell of a good old-fashioned book.
What surprised me the most today though was how the therapist helped me find a "sweet spot" in my vision. She noticed when I was having difficulty viewing certain items that I would shift it until I could read it more clearly or I would shift my eyes rapidly as if searching for something. I've always had issues with that. I would use my right eye for reading and seeing up close and my left eye for distance viewing. Anything in the middle is a toss-up. The therapist had me look at her face (focusing on the center of her nose) and describe what I could see. I knew she had hair, eyes, a nose, cheekbones, and a mouth. She asked me to describe what I saw and it was all there but blurry. She then pointed at different places along the sides of her face and asked me to focus there and tell her what I saw. There was one place where her eyes disappeared; another where everything was so blurry if I hadn't already seen her I wouldn't be able to tell where some features were.
And then, it happened. She pointed at a spot to the left of her eyes, causing my eyes to shift to the right. Suddenly, not only could I see her face but I could also see the color of her eyes and the darker ring around the outside of her irises which I'd never noticed before. We couldn't pinpoint whether it was my right eye, my left eye, or both working together that made the difference, but just shifting my vision about four inches to the right made things so much better.
She gave me a bunch of worksheets with practice lessons to help train me to look at things "crooked" so that I'm using the "sweet spot" of my vision. She also showed me with a light meter how much I need to be able to see more clearly and we tried different light sources again. The blueish flourescent lamp was the brightest and now I've got to find somewhere that sells them. I want floor models in the living room & bedroom and a desk version I can move about the house and take with me if I'm gone with work or on a trip.
I'll be going back for another session sometime in the near future. I have to look at Youngest Son's schedule for the summer since he wants to get a class out-of-the-way this summer so he won't have to take the class during the school year and free-up a period for something else he wants. But I can tell already that learning to look to the right to see something is a trick that's going to be really hard to teach this old dog to do. Wish me luck!
Showing posts with label vision. Show all posts
Showing posts with label vision. Show all posts
Tuesday, May 15, 2012
Friday, March 23, 2012
Final test result received!
My neuro-opthalmalogist just called with the results of my ERG test I had last Friday. He apologized that he'd not contacted me earlier with the results. He thought that I still had the test to take and not that the results were waiting on his desk (since he runs the lab for the university).
The ERG (Electroretinography) came back normal. All of the little rods and cones in my retinas were firing signals to my brain during the test as they should, with the typical degeneration that would be seen in a 40-year-old patient. And he reviewed the MRI results again and said that there were no signs of strokes, tumors, MS (Multiple Sclerosis), or anything else that he could see that would be causing my optical problems.
I'm very relieved. At least we now know that there's not something incredibly serious and/or possibly life-threatening happening in my brain. The only down side (which he admitted as well) is that we still don't know why I can't see at night, why my vision cannot be corrected with glasses to better than 20/60 (bordering on not being legally able to drive at any time in our state), and why I have headaches so often every month. But the best thing I heard come out of his mouth was this -- that it's not just "all in my head." He believes there's something wrong and believes that I'm not making it up. Finally!!! Someone understands!!!
True, he did mention that all of this could just fix itself with time. That would be wonderful. How much time, though, isn't known. I can't put my life on hold waiting for something to magically happen. He also said that, technically, it could just get worse in time. That's not terribly reassuring either. But, he's got an idea to at least help me cope with it and make the best out of what vision I do have remaining.
He's going to refer me to the university's low-vision center/occupational therapy center. There, I can work with them using what I can do and find adaptive materials/equipment to help me be able to work and continue a "normal" life. Driving may still be an issue, but they can help me with that or at least help me get assistance with my employer for reasonable accommodation. And, with them being part of the same university, any marked changes -- better or worse -- can be noted and directed to my doctor quickly so that he can see me if needed and help us determine a more definite "diagnosis" of what's happening.
But, at least I know it's not something genetic that could pass-down to my sons and I know Husband is feeling much better knowing that there's not a ticking time bomb in my head. He said he always knew that I was crazy, so now knowing that there's nothing else wrong up there is fine with him.
I didn't get all of the answers I wanted, but I got what I needed. And, yes, I may be crazy -- but at least now the "it's-all-in-your-head diagnosis" can be laid to rest.
The ERG (Electroretinography) came back normal. All of the little rods and cones in my retinas were firing signals to my brain during the test as they should, with the typical degeneration that would be seen in a 40-year-old patient. And he reviewed the MRI results again and said that there were no signs of strokes, tumors, MS (Multiple Sclerosis), or anything else that he could see that would be causing my optical problems.
I'm very relieved. At least we now know that there's not something incredibly serious and/or possibly life-threatening happening in my brain. The only down side (which he admitted as well) is that we still don't know why I can't see at night, why my vision cannot be corrected with glasses to better than 20/60 (bordering on not being legally able to drive at any time in our state), and why I have headaches so often every month. But the best thing I heard come out of his mouth was this -- that it's not just "all in my head." He believes there's something wrong and believes that I'm not making it up. Finally!!! Someone understands!!!
True, he did mention that all of this could just fix itself with time. That would be wonderful. How much time, though, isn't known. I can't put my life on hold waiting for something to magically happen. He also said that, technically, it could just get worse in time. That's not terribly reassuring either. But, he's got an idea to at least help me cope with it and make the best out of what vision I do have remaining.
He's going to refer me to the university's low-vision center/occupational therapy center. There, I can work with them using what I can do and find adaptive materials/equipment to help me be able to work and continue a "normal" life. Driving may still be an issue, but they can help me with that or at least help me get assistance with my employer for reasonable accommodation. And, with them being part of the same university, any marked changes -- better or worse -- can be noted and directed to my doctor quickly so that he can see me if needed and help us determine a more definite "diagnosis" of what's happening.
But, at least I know it's not something genetic that could pass-down to my sons and I know Husband is feeling much better knowing that there's not a ticking time bomb in my head. He said he always knew that I was crazy, so now knowing that there's nothing else wrong up there is fine with him.
I didn't get all of the answers I wanted, but I got what I needed. And, yes, I may be crazy -- but at least now the "it's-all-in-your-head diagnosis" can be laid to rest.
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.
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