Jul 27, 2025
i'm blind - an update (read below)
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i'm blind - an update (read below)
having a bad vision day (also I forgot my opaque contact lens and I'm having to look at spreadsheets) but I was finally able to come up with a decent simulation of it
It's not totally accurate since it's really hard to simulate the flashing specifically (imagine what it's like to look through one of those red and blue 3D glasses, and the disorientation of having your eyes see different colors. That kind of thing is what I'm calling "flashing"). I tried to kind of show that with the squiggles over the text. I probably should have used a white pen for that since the "noise" is kind of a light gray
And I'm not really seeing double images as much as this implies... I'm kind of trying to simulate the difficulty in focusing on text. Almost as if it's wiggling and moving around, but it's not.
I really should try to animate this instead! 🤣
It's dramatically better if I close/cover my bad eye but on a bad day I still have some issues
Unsolved Mystery * Update * My Medical Condition
Unsolved Mystery * Update * My Medical Condition
Some of you know that in August of 2019 I lost some vision in my left eye. It was like a sheer, black veil just lowered and I was looking through a dark screen, seeing only bits and pieces of what was around me. I waited a few days to see if it would get better on its own but it only got worse. In addition to the vision loss, now there was a sever pain and my eye wouldn’t stop watering. I went to…
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Make sure to include EVERYONE in your pride. Disabled individuals matter. WE ARE HERE AND WE ARE QUEER 🏳️🌈💖💙
Confession #4,716
i miss being able to see well enough to be able to drive myself places. it’s not even that i don’t have my license, nobody has technically said i can’t. it’s just i see lines on top of or next to the lines on the road, the signs blur off their edges, i can’t read the street signs until i’m pretty much passing them, i can’t tell if things are cars or trucks or vans when passing a lot bc of how bright the lights are. astigmatism and optic neuritis sure are fun. nobody has told me not to, but i sure as hell don’t feel like it’s safe, for anyone not just me. i’m just tired of not being able to go places or get anything done and then when i do need to do something it’s on another person’s time and they act like it’s such a burden. threatening to not take me to work because i didn’t do something exactly the way the way they wanted or they were just in a bad mood is the worst, though. we’re in the middle of nowhere, it’s not like i can call an uber and all of my friends are out of state, at work, or don’t live around here bc, like i said, middle of nowhere. i have to walk on egg shells when people are in a bad mood just to get a ride to work bc of my ms and my shitty eyes.
I'm uneyeronically bringing the eyepatch back
So thanks to Brexit I can’t get a neurology appointment until June. About half the local neurologists are from the EU. Or at least they were... until they all left...
Not that I blame them, but I really need to see a neuro... my left eye is going almost blind about once a week.
Well, shit, there goes my vision...
One step forward and two steps back. If you were to ask me to sum up my fertility journey in one sentence, that’s what how I would describe it. At least
up until this point. Every time we take a step in the right direction, the universe shoves me backwards. This past week it feels more like 300 steps backwards.
In May of this year, I had my second laparoscopy on my baby maker. I also had a procedure done called “ovarian drilling.” Sounds terrible, right? I figured while they were in there they might as well fuck shit up as much as possible. No but really, it’s about as bad it sounds. It’s a procedure in which they burn little holes into your ovaries. From what our fertility doc told us, this isn’t a commonly used practice but has been shown to help lower testosterone production and help with fertility but only temporarily. My understanding from the little bit I read about it is that us ladies with PCOS develop a hard outer shell around our ovaries in which burning the holes helps break that up. Somehow that hard outer shell makes it even more difficult for women with PCOS to get pregnant. Don’t quote me on this, I’m not a doctor, obviously. Well hopefully my hard outer shell is nice and shattered. I’ll stop using that term now, it’s only making me think of those little easter egg candies that are solid chocolate and have the hard outer shell. My favorite!!! Anyways, not the point.
Now that I’ve probably turned you off those easter egg candies forever, or at least gave you the gift of envisioning my ovaries while eating them, I’ll get back to my what I was saying.
Our plan was to have that surgery and attempt IUI, which is insemination (practically the turkey-baster method), once my doctor gave me the okay, unless we changed our minds to IVF which was quickly happening. My OBGYN is a kind older gentleman who takes his sweet, sweet time doing absolutely everything but I deal with the slowness because he’s the only one I’ve found who listens. As I’m sure so many already know, finding the right doctors is essential but usually super complicated. He told me I’d be good to start trying IUI at six weeks out from surgery. He suggested that once he “does his thing,” the fertility doc quickly start his part of this lovely process.
Depending on who you talk to you’ll get different information on whether laparoscopy actually improves fertility. My OBGYN is certain it will help my chances while my fertility doctor said it will have absolutely no effect whatsoever. My fertility doc actually suggested I don’t have the surgery at all and just go straight to IVF. He said the only reason to get a laparoscopy these days is for pain. Honestly, that was my main concern at this point anyways. I couldn’t go through the next several months of fertility treatments with the pain the endo has caused so I was going ahead with the surgery no matter what he said. This is when he suggested the ovarian drilling. He told me it was an easy procedure and I might as well have it done while my OBGYN is already in there burning the crap out of my insides (my words, not his). He said doing the drilling might give me better success with IUI if that was the route I was choosing.
So flash forward a few weeks and here we are. I see my OBGYN in two days to make sure everything is healed okay. If so, I’d be able to start the process for IUI or IVF. We were getting SO excited thinking within the next couple months we could finally be pregnant after 5+ years of trying. Of course, we know our chances with IUI are about that of a person with no fertility problems getting pregnant any given month but hey that’s a better chance than we’ve ever had before! Plus, we’re not ready to jump straight to IVF. I mean, dear lord have you seen how much that costs?!?!?! I f you aren’t to that point yet, I don’t mean to scare you but holy hell our babies are going to be expensive, ladies!! Also, what if we skip right to IVF and it doesn’t work? That’s our last resort. We have no other option at that point. If IVF doesn’t work, I won’t be carrying our child and that scares the shit out of me. So, we just aren’t there yet. We’ll take our chances on IUI and pray God will come through.
It’s funny how fast things can change. Here we are looking forward to FINALLY starting the process of HOPEFULLY getting pregnant and whammy, life kicks us in the balls.
I was at work last Wednesday, June 21st, just doing my thing, looking forward to a new promotion coming my way (a story for another day) when my vision changed suddenly. You know when you look at the sun for too long and you lose vision and see bright spots? That’s what happened, kind of. I started seeing funny out of my left eye, out of nowhere. One second I could see and the next second I couldn’t. I could see with both eyes open but when I closed my right eye whatever I looked at with my left eye disappeared. I was just missing a chunk of my vision. I could kind of make out things in my peripherals but anytime I would move my focus the dark orb would follow and envelop anything I was trying to look at.
I thought maybe I just looked out my window at the brightness a little too long so I gave it a few minutes to see if it would come back. I don’t even know if that’s a thing, but that was my first thought. It didn’t come back. I spoke to a coworker who told me about her ocular migraines and how what I was experiencing sounded similar to what she experiences. I took some advil thinking it would help this ocular migraine I was probably having and decided to wait it out. She told me for the 20 years she’s had them, they never last more than an hour. Great! I was already over an hour of not seeing but everyone’s different so I assumed it would pass quickly.
I’m a worrier. I make situations in my mind worse than they usually are. Probably from my fear of death which stems from losing my brother at such a young age, but we can psychoanalyze me later. First thought, tumor! I don’t know why, but tumor is my go-to. Weird ringing in my ear? Tumor. Headache? Tumor. Pinky toe hurts? Tumor!!! You see where I’m going with this. My other coworker, who was familiar with my tumor paranoia, assured me it was not a tumor and just a migraine. Deep down, I knew it was only a migraine, but who doesn’t like to be dramatic to spice things up in a boring office job?
It had been at least two hours with no vision so I thought I should make an appointment just in case. I’d rather know for sure it is an ocular migraine to bring my crazy brain some peace of mind. They could fit me in at 3:15 that day. It was only 11:00. Cool, four more hours I could sit around and panic. Just what a Wednesday needs! I sent my boss an email letting her know what was going on. At this point, I was certain she was sick of my shit. I had only been back a week and a half from my two week leave for surgery which I had not planned. Another story for a different time. I missed a lot of work with PCOS and endo (and always feeling like crap but never knowing why) and as understanding as she was, I knew she was probably thinking “dear lord Shanda, what is it this time?”
In talking to my coworker about my almost definite tumor, I remembered my mom had lost her vision in one eye quite a few years back, due to a blood clot. Oh cool, even better, now I have a blood clot on top of my tumor. I called my mom and she told me she had Central Retinal Artery Occlusion. Basically, she had a blood clot that burst and took her vision with it. This happened when she was 40 and she was now 65. Her doctor told her she was incredibly young to have that happen to her as it usually only occurs in people who are 60 or older. The good part, she had no pain. The bad part? Vision loss is permanent. That same coworker heard me on the phone talking (probably closer to shrieking) about a blood clot and IM’d me saying “you’re good.” Thank goodness for her. She keeps me grounded when I spiral out about all my tumors. She was overly confident it was just a migraine.
I got to the eye doctor and they immediately dilated my left eye so I’d be ready for the doctor by the time he was ready for me. My pupils are already huge, which every eye doctor always comments on like it’s some sort of weird compliment. Thank you, I grew them myself! So, when my eyes are dilated, they get enormous. I look like some sort of weird anime character. This time I looked like a weird anime character on drugs since it was only one pupil. It was fun staring at people in the waiting room, winking at them, making them uncomfortable.
When I met with the doctor, he said he originally thought from my symptoms that it was an ocular migraine. Ocular migraines do not last more than two hours usually so he was concerned it was something else. My retinas were still attached which was great news! That was actually my real fear since I’ve always been told I’m at high risk for retinal detachment which can cause permanent vision loss.
After all the tests, he mentioned it was apparent I was missing a big chunk of my vision in my left eye. Thank you, Dr. Obvious. He couldn’t see behind my eye to figure out the problem but expected it to be a Central Retinal Artery Occlusion. I had already forgotten the term from my mom telling it to me earlier. He explained it’s a blood clot and can cause permanent damage. He was referring me to a retina specialist. He told me before I left that if I wake up the next morning and could see, he would assume it was a retinal migraine. Still, he said, retinal migraines normally don’t last over 2 hours but anything is possible. I had hope! I was sure I’d see that next morning.
I tried so hard not to cry in front of him. I’m sure he saw the tears welting up in my eyes so I hurried out. While paying, I realized this was not covered by my eye “insurance” because it was considered medical and I should have gone to Kaiser. Wish they would tell you this shit up front! I had them fax my paperwork to Kaiser which led to a whole other mess of problems.
As soon as I got in the car, I lost it. The thought of permanently losing vision in one eye is awful. I realize things could be so much worse, but still, it felt like a huge loss. I called my husband on the way home and told him through my ugly crying that it might be permanent. In hindsight, I probably shouldn’t have been driving with one eye, crying and talking on the phone. Have no fear! I am an excellent driver and hurt no one that day.
I talked to my mom later that night and asked her again what she had happen to her eye since I couldn’t remember all these damn words. I told her what they thought it was and that I was supposed to see a specialist the following day. She insisted on driving me. Probably a good call.
I wanted to try to go to work that next day so I didn’t piss off my boss but I woke up around 1:45 a.m. and my heart jumped because I remembered the doctor said if I “wake up and can see” it was just a migraine. I shot open my eyes like a creepy horror flick scene and realized I still could not see. I had a total meltdown. My poor husband, trying to sleep, and there I am shaking the whole bed from my convulsion like crying. I didn’t go back to sleep that night. I laid there feeling sorry for myself and grieving my vision loss as I was sure it was never coming back. I called and left a message for my boss that I wouldn’t be in. I didn’t care anymore at that point. I was sad and scared, mostly exhausted, but I just didn’t care if she was mad.
I impatiently waited for 8:30 when the optometrist’s office opened at Kaiser. They said they’d call me first thing in the morning after the eye doctor faxed the paperwork. They didn’t. Of course they didn’t. Why would they? I hate medical offices. They just dilly dally around as if nothing is ever a big deal. This is a big deal! This is a huge fucking deal to me! This affects the rest of my life. I called at 8:40. They didn’t have the paperwork. I immediately called the other doctor who said they already faxed it the night before but would do it again. Why do all doctor’s offices have to function this way? I have not met one person who has ever thought “easy breezy” is a good way to explain their experience with doctor’s offices.
About 30 minutes later I get a call from Kaiser. It was a young woman on the other end. She sounded sweet and innocent almost like a child, but boy did I want to punch that child once we hung up. She said the person who needed to review my file before letting me see a doctor would be in the next day and would contact me. She assured me she was quick and would call me early. Oh thank you, you little asshole! I’ll just sit here another day, without vision, possibly dying from a tumor, and wait for the “fast” lady to review my file. “NO.” I think I shocked her. How did this seem okay in her child like brain? Sudden loss or change of vision is considered an emergency and now they want to make me wait another day. How fucking dare they! They don’t know who they’re messing with, I will scream cry in all their stupid faces. She said there was someone else who could review my file. Why she didn’t just do that in the first place baffles me but it must be that child-like brain of hers that hasn’t fully developed. She calls me back and says I have to get all the same tests I already had done the night before since that doctor’s notes were “vague.” She wouldn’t let me see a specialist because “that’s the doctor’s recommendation ma’am.” I swear to God if it was possible, I would have reached through that phone and throat chopped the shit out of her. Fine. It’s better to see someone than no one at all. The appointment wasn’t until that afternoon. Fun! Another full day of sitting around obsessing about the tumor that was most assuredly taking over my brain.
I called my mom, ugly crying yet again. As you can tell, I was dealing with things very well. She told me she’d still pick me up and take me to that appointment and suggested for me to try to get some rest. Yeah right. A little later, my sister-in-law called me. She’s been a nurse for that past 7+ years. She validated my concerns. She told me this was an emergency and if Kaiser wouldn’t let me see a specialist, she was taking me to the ER. I HATE the ER! They make you sit and wait forever with people coughing and snotting all over themselves and then they just tell you to follow up with your doctor anyways. I told her I would have my mom take me to urgent care.
My mom called me a little later and told me she got in touch with my uncle who is pretty high up in Kaiser. He was angry they were not treating this as an emergency and told her to take me to urgent care. He also got me in touch with the head of the whole damn department who finally ended up getting me in with a specialist. It’s all about who you know. This whole ordeal took hours and I had to call the freaking head of the department in Washington D.C. just to get a damn appointment! Fuck you very much Kaiser.
I saw Dr. Miller that afternoon who, right off the bat, assured me it was very unlikely I had a Central Retinal Artery Occlusion. After all of the testing he informed me he thought I had what is called Optic Neuritis which is where the optic nerve connecting your eye to your brain becomes inflamed and obstructs your vision. Good news is, it’s likely my vision will return in 6-8 weeks. He said he could also treat me with a heavy dose of steroids which would help my vision come back sooner, but the steroids come with a lot of side effects. The last thing my moody-self needs is roid-rage. I felt a heavy weight lifted from my chest. I would get my vision back!!!!! He told me he wanted me to get a MRI just to be sure. The appointment was about over but I figured I’d throw one last question into the mix. How does optic neuritis happen? Does the nerve just randomly inflame? It’s almost as if he was trying to avoid giving me this information. He told me not to worry right up front. Smart! Every time you start a sentence with “don’t worry…BUT,” you know the person is going into full blown panic. Optic neuritis is the first sign of Multiple Sclerosis. The MRI would be able to show if I have lesions on my brain which would indicate MS. He said there’s a chance I don’t have MS but could develop it over time or I could already have it. “Try not to worry.” Sure. You just told a person who always resorts to worst case scenario that she has MS, but I’m sure worry is the last thing she’ll do. Pffft.
My family was all relieved until I threw in the fun news about possible MS. My sister and mom both tried to make me promise not to Google anything until I had the MRI and got the results. Ha! Yeah okay, like that’s going to work. I am a professional Web-MD’er. My mom took me home and I ugly cried one more time.
I waited maybe an hour before I was on Google frantically looking up MS. I’ve always heard the term but never really knew much about the disease. Going through the symptoms was like looking at a description of me the past few years. Everything was making sense. This was me! I already diagnosed myself with MS. I looked over at my husband who had been intently staring at his phone for awhile. He looked up and said “this is you.” I texted my sister to let her know I had in fact Googled the shit out of MS only to find out, she did too. She texted back and said “I think you’ve had this for years.” Eventually, my mom texted and agreed, this all sounded like what I had been dealing with for years.
It feels like in a matter of seconds, my life changed. I know I had no diagnosis yet and there was a very real chance I didn’t have MS, but I was convinced I did. I had to schedule my MRI for the following week on Tuesday. It was only Thursday. What a fun weekend I was going to have! There is no way I wouldn’t worry about something like this even though my doctor told me not to. I thought about it all weekend. I called in Friday as well and cried and Googled all day. Like I said, I was really dealing with this well. I wanted to prepare myself for what I was certain was coming my way.
The good news about MS is it’s completely manageable. I got to a point over the weekend where I was at peace with the idea of having it. At least I would finally have an answer to why I’ve felt like shit for so long. It would assure me that I have not been crazy this whole time and I’m not just a hypochondriac as my family would always joke about. Going to the doctor and constantly being told nothing is wrong with you really has a way of making you look and feel like a crazy person. MS would take that away. I wasn’t a crazy person, I was a person with MS. Not only am I a person with MS, I’m also a person with PCOS and endometriosis. Sheesh, that’s a lot on a body. No wonder I felt like crap all the time. There was nothing for me to do at this point but sit and wait.
I have been an emotional wreck since last Wednesday night. My moods are crazier than ever and I’ve cried so much I really don’t know how there is any fluid left in my body. Tuesday, my husband took me to get the MRI. Thank God I had my doctor prescribe me some anxiety meds. MRIs are really not that much fun. The first ten minutes were the worst. I had the most irrational fear while I was in there. I’m back to thinking I’m a crazy person. I was worried some sort of disaster was occurring while I was in the machine and the lady doing my MRI was no longer there. She left me in this machine which would never stop running and I would be stuck in forever! I thought my head was strapped down and I was certain there was no way for me to escape. She had put a wash cloth over my eyes so I wouldn’t be able to look around and panic, which was helpful, but I also now could not plan my escape route, if in fact the zombie apocalypse was occurring at that exact moment. Luckily, she pulled me out to put dye in my IV. I told her I was worried about being stuck and she informed me I could just wiggle my way out of the machine. I’m so dumb sometimes. Where do I come up with these crazy scenarios? The second half of the MRI was fine. I actually relaxed and let the vibrations soothe me a bit.
Now comes the worst part, waiting. She said my doctor would get the results in 3-5 days! It feels like an eternity and I’m now only on day two. I’m trying to keep my mind and body busy while I wait but have I told you how amazing I am at multitasking? I can be busy and STILL think about all this crap. As of yesterday afternoon, I have even more time on my hands to obsess. My boss sat me down yesterday morning and convinced me to take some time off. She’s seen me around work, tripping, running into walls, crying and just looking like complete death. She knows I’ve been struggling and that I feel terrible both physically and mentally, it’s really not that hard to see. My eyes are sunken and almost always filled with tears and I just stumble around like a drunk person bashing into things and knocking everything over. It’s actually a little complicated to get used to only one eye. I was a clumsy disaster before losing my vision, it has only intensified.
I am thankful she talked me into taking time off. It was something I knew I needed but I wasn’t willing to admit. I’ve always worked really hard at my job and I take pride in my accomplishments. Admitting that I wasn’t up to the task was almost physically painful for me. I know God had a role in this. He saw I needed a break and that I wouldn’t do it myself so he forced me into it. My boss would not have taken no for an answer. Back to FMLA, hopefully. I’m still waiting to hear if it’s approved and I just recently applied for short term disability. This is all very surreal. This is not how I saw my 30th birthday going. Oh did I mention, my birthday was a month and half ago? It’s been awesome. So far I’ve gone to the ER in New Orleans, had surgery, was forced into taking more time off than I expected to, lost my vision in my right eye and now might have MS. Solid start to my thirties.
I have to say, through all of this, I have been extremely blessed. I have the absolute best support system anyone could wish for. My family is amazing. My husband, my parents, my sister…they’ve all been there for me every step of the way. They’ll let me cry on the phone and bitch for as long as I need. They reassure me and lift my spirits consistently. My sister-in-law has been so supportive as well as my close friends. We all need support at certain times in our lives. This is that time in my life.
Needless to say, IUI/IVF has been put on hold. As devastating as it is, there is no way my body can carry a baby right now. So many things are still unknown. We will get there someday. We are determined to have a child and I cannot wait to hold my baby in my arms. Until then, we will wait as patiently as possible and continue to pray.