Me, Myself, and the Voices in My Head

A place to ramble and maybe make some sense about a thing or two.

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 made 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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