The blindness is slowly going away

Sometimes we run into what is called a non-story. We start writing and then realize that there really isn’t much to write about. When I was in the ER, I was really excited to write about everything that happened. I told my nurses and techs about it. It was exciting and scary all at once. Then I got home and I started getting better, and I realized that this story wasn’t going to really have any developments for another three weeks. That doesn’t make a very good story. And I questioned why I started a blog (other than a centralized place to not tell the story 1,000 times).

Then I realized I get asked daily how my eye is, and maybe I should update and let you all know.

My eye is… frustrating. Sometimes it is really awesome and almost like everything is just extra bright (because when I went blind it wasn’t black like people thought, everything I saw was actually white blindness and the white lingers). I was warned that it could take a year to get back to what I would consider normal. Me, being the control freak that I am, refused to accept that. Then I realized I don’t get to control this thing (but I certainly won’t let it control me either).

I’m hoping it doesn’t take that long, because this Cinderella act is getting old. I pretty much hate asking people for rides, or a place to stay because it’s night and I can’t drive.

So, even though I have really good days with my eye, I also have pretty bad days. They kept asking me in the hospital if I was seeing double, and I wasn’t because I wasn’t actually getting a second picture from my eye. Now, sometimes my vision is double. It’s hard to focus on things sometimes because I’m not getting the full picture. Sometimes, when I am tired my vision will decrease, or the double vision will get worse.

Don’t get me wrong, I am so happy that it’s even back this little bit. Driving during the day is far less scary, I can see more of the whole picture, I don’t have to cover my eye to read, the list goes on.

I was warned there would be triggers for my vision. The two specifics my neurologist mentioned were stress and if I overheat. I was told if I workout, to not be alarmed when my vision decreases. I thought she was exaggerating; that she was saying this and it wouldn’t actually happen, or it would happen rarely. Yea, she wasn’t kidding. I’ve been trying to work off this steroid water weight/ weight gain (steroids are the devil and out to get me). Tonight I was pushing extra hard and suddenly I realized I was almost completely blind in my left eye again. It was right about then that I realized this might be a long year. It’s not going to stop me, I’m just going to monitor things closely and watch what happens.

As for the future, my neurologist told me to inform myself on MS so I know what my plan is when I go in a few weeks. She has her suggestions, but wanted me knowledgable on the subject. I don’t think she knew what she was doing when she told me that. I want to know every facet, every tiny piece of information that I can. So last night I planned to spend a few hours researching treatment options. Since I’m not clinically diagnosed with MS (you aren’t diagnosed until you have a second attack on a different part of your central nervous system. My lesions are “clinically silent” since they haven’t affected anything yet, and therefore not a cause for diagnosis) the treatment would be towards delaying the onset since I’m high-risk for a second attack because the first came with lesions. I then spent hours researching exactly what MS is and how much information is known on the topic (I already knew it wasn’t much).

I ended up forgetting that I was researching treatments because I decided I wanted to find out how the disease works, what they are researching for a cause and everything else before I looked at treatments. I’m coming up with my plan of attack. I’ll know more about what that means in a few weeks, but I’m sure I’ll get the urge to write again before then.

I will say that I feel more like myself every day. Suddenly on Sunday it was like I was renewed and my energy came back rapidly. Unfortunately, I was quickly re-sidelined on Monday when I was hit with not one, but two migraines.

I got up ready to be back at work and have energy to do it, and suddenly I realized I was blind in my left eye. Not just like a step back, but completely blind. I couldn’t see my hands, or my arm or anything. I panicked. I told my mom this was what I was afraid of: How would I know between an MS attack and a migraine when they both start the same way. I then realized that, even with just my right eye, I couldn’t focus. My mom made me go back to bed and she called my boss to tell her that we weren’t sure exactly what was happening, but she was making me sleep for an hour and we would see which of the two it was. I woke up four hours later. I’m also not sure how I slept so long. At that point I had been asleep for 14 hours. When I woke up, I felt mostly fine, just a little headache. I went about the rest of my day and then at 3 a.m. I woke up with another one.

The most frustrating thing about these migraines is that I can’t take anything for them. My regular doctor asked me to not really take any medicine until my next MRI. All I can take is ZQuil, heartburn meds and Ibuprofen. I told my mom another migraine and the rules are gone and I will take something stronger. I don’t need to torture myself.

I’m fully back now. I’ve had my energy back all week. I’m glad to be back. Sometimes I think this disease really should be afraid of me.

How it began: Part 2

The doctor made it sound urgent enough that I called my mom first thing when I walked out and told her we were going first thing in the morning. He wanted me to go to the Shiley Eye Center at UCSD in La Jolla, but when we arrived, they told us they didn’t have the doctors I needed, plus it was going to be too expensive. Instead, they suggested I go to UCSD in Hillcrest.

When I first got down there, I was afraid I was in some horror film. The waiting room looked yellow to me. I don’t know why, it just seemed like everything was glowing yellow. I told the man checking me in a brief idea of what was happening. You’d be surprised how many times you can hear “that doesn’t sound good” and still find it funny. I have a very twisted sense of humor.

When I went back to triage, they asked the questions I kept hearing “do you smoke?” no. “was this from abuse?” no. “Can you read this eye chart?” No. They still decided to tempt fate and see if I could read the eye chart. I really don’t understand what was so hard to understand when I said “I can’t see the paper on the wall. In fact, you don’t even exist right now.” He was really confused. I’m not complaining. Not at all. I had such a great experience there, actually, that I was finding everything amusing.

I was brought back to the area where they help you fairly quickly. I think they, like everyone else, thought I was going to be a simple case, because I was placed on a bed labeled “Fast Track 2.” How wrong they were.

I thought this would mean everything was going to go quickly

I was even seen fairly immediately (and for the ER that means within the hour). More poking and prodding and questions. At this point my mom had memorized the story of what happened word for word. I had two doctors examining me so closely that I knew one of them had a little too much garlic for lunch. They were confounded and said I had to see an ophthalmologist right away.

At this point it was about 1 p.m. and I was begging my mom for food. I was starving. So, in the interim she caved and went to find me food (who can resist my charm?).

The only food my mom had until she got me a sandwich

Soon, opthalmology was there to whisk me away and save me from my blindness. I hoped. And yes, I’m being dramatic.

Unfortunately, after more examining and dilating and questions, he literally could not find a single thing wrong with my eye. He was certain that the original diagnosis of Optic Neuritis was correct, but he, too, couldn’t find a source for it. He left the room for a few minutes and came back with an eye surgeon. Wanna see someone freak out? Do that to them. I certainly had no inkling that I may need eye surgery for this mess. But still, she couldn’t find anything wrong.

You know that line from Mean Girls when they’re in the assembly and Cady says something like, “Have you ever walked past someone and known that they were just talking about you? Ever had it happen 200 times in a row?” That was how I felt when I got back to the ER.

We arrived sooner than they had expected me, but every eye in the hallway was focused on me. There were whispers and looks, it felt like I was the cadaver in the science lab. It was worse because my eyes had been dilated so everything was blurry. While standing there a nurse came up and introduced herself to me as my nurse for the night. I stupidly asked if that meant I should expect a long night then. Her giggle was polite enough to make up for my moment of idiocy.

This must have been her name. I was really out of it, but knew I needed to document everything

She then showed me to a room, with a door and hooked an IV into my arm- unexpected for sure. Yep, it was going to be a long night.

Yuck! This was a surprise.

Soon I was taken off to have a chest x-ray (for what, I’m still not sure) where I spent more time waiting to be x-rayed than in the actual x-ray. Back in my room, I was just happy to have a TV that I could watch baseball on- even if it was blurry from the dilation.

A little while later (I’m pretty sure it was like 8 p.m.) they took me to MRI. It’s funny, they made this huge deal about me being claustrophobic and freaking out. They gave me an eye mask and earplugs and I was good. Well, mostly. It’s ridiculously uncomfortable, and my head was too big for the head stabilizers.

45 minutes or so later, I was back in my room and all I wanted was food. They brought my mom food, but wouldn’t give me anything. When I asked, they simply said no. So, I asked if I could even have Dr. Pepper (I can’t help it!). They said no. Water? No. Luckily, I at least was able to get a small explanation. I might need brain surgery. If I could have ran, I would have ran as fast and as far as I could make it.

In fact, my exact words were, “It’s not that important. I don’t reaaaallllyyy need my left eye. Baseball is just as good from my right eye.” The tech just stared at me. He actually put in the effort to convince me that baseball required both eyes, but it wasn’t working. Then he laughed and told me I would calm down.

When my doctor came in to talk to me a little while later (third ER doctor at this point) he explained a little of what was going on. I told him that ultimately I had three goals for that night. 1) Find out what was causing the problem and start toward a solution. 2) No knives in my brain. And 3) EAT DINNER. I was just glad he understood the logic behind that (plus he was really fun to look at, so having a quirky/ weird conversation was an added perk). I don’t think I would mind if he ended up on my team of doctors.

He was quite agreeable because he informed me that there would be no knives in my brain that night and dinner would be on its way shortly. I wanted to hug him, and not just because he was cute.

Soon, a sandwich and yogurt and ibuprofen was delivered to my lap (I opted for that Dr. Pepper that my mom had bought me earlier). Even though it was crappy hospital food, I seriously celebrated like it was a 5-star steak dinner. Another one of my techs stopped in to check on me and all I could do was fist-pump (I know…) and yell, “they’re letting me eat!” He celebrated with me as well.

Shockingly, they told me I was the normal patient on the floor that night.

Around midnight (right in the middle of my Friends episode) the neurologist stopped in to finally tell me what was going on. After telling her the long, drawn-out story, I could tell she had already come with a diagnosis in mind. The rest were just formalities. No, I can’t read the eye chart on your phone. No, making the letters smaller does not make it easier to read, your phone doesn’t actually exist in my left eye. No, I can’t see the red on your phone. I know it’s red because I cheated and looked with my right eye.

So here it was; this is what she told me (approximate quotes. Remember I was exhausted and it was going on 13 hours at this point):

“We found some lesions on your brain. Three of them are older and have been there for some time. I feel that there is a 50 percent chance that you have Multiple Sclerosis, and a 50 percent chance that this was a one-time occurrence. The lesions are consistent with those created by MS, and I feel that MS is what is causing your optic neuritis.”

I’ve always imagined what it would be like when I found out that family, or someone I love or I got life-changing news like this. This isn’t how I thought it would go. I expected tears or shock. Nope. I just sat there and listened. There is nothing I could have done to stop this, it’s obviously in God’s plans for me. I have no idea what that plan is, but there’s something there.

She explained what the next steps would be: an MRI in a month to see where the lesions are and a visit with her to determine a course of action. I have the option at that appointment to just start MS treatment as a precaution even if the lesions have gone away.

She mentioned getting a spinal tap/draw something or other to make sure this wasn’t a virus. Let me tell you, I was in a good mood until she mentioned sticking a needle in my back and laying flat for an hour just in case. It was like 1 a.m. I was sooooo not okay with this course of action. It was almost as bad as them trying to stick a knife in my brain. She came back shortly and said that the spinal tap thing was not going to be necessary because she was certain it was the lesions causing my eye problems. She also said that I was going to be getting a high dose of steroids via IV for 5 days to start the healing of my eye. I could have kissed her. She offered to admit me, but do any of you really see me sitting around for 5 days in a hospital just because I need an IV? ha! Plus, I couldn’t expect my mom to drive down to Hillcrest every day for 5 days, and I knew she wasn’t going to leave me alone in the hospital for that long. She is a mom after all.

When they set the IV up, I’m not sure that anyone could differentiate between patient and parent.

It was really late

So, after the IV and the discharge papers and conversations with every nurse, tech and doctor on the floor (I promise you, they really were hiding in my room all night) I was finally out of there! 15 hours of waiting and wondering. Some of the staff even cheered for me. That could have been the delirium seeing that.

So there you have it. It’s lengthy and unnecessarily wordy, but that’s who I am. I am not throwing a pity party (although nap time has been a frequent occurrence at my house right now). There was nothing I could have done to stop this, and the only course of action now is to attack it head on. There are so many people who have it so much worse than I do. My neuro ophthalmologist told me that I won’t be the poster child for MS, which is good because I don’t want to be. I’m only writing this to document and to tell a story. I am a writer after all.

This is how it began: Part 1

I’m a writer. It’s in my nature. I wish this post were a better depiction of my writing prowess. Any of you who know me know that I am much better than this. But I digress, I quite literally have a novel being written in my head depicting my life. It’s not a great work of literature; it’s more like a Disney fairy tale. So, when it seemed as if my life was about to drastically change, my first instinct was to write it all down- that and I’ve told the story 100,000 times by now, so I may as well just print out copies and give it to all the doctors I see.

I guess my life isn’t really a Disney fairy tale. Disney princesses don’t drink. Except Cinderella; you know you’ve seen the ecard:

It’s important that I start there. It’s going to dash the image of me right away, I know, but had I not been drinking that night, I don’t think I would have be as attentive to what was happening. I thought I had been drugged. That alternative seems so much more appealing now.

When I woke up on Saturday (September 29), I assumed the aura in my eye was a migraine, or a hangover. It didn’t bug me so much that day. And then on Sunday I woke up with the same thing, but I assumed it was the long lasting effects of the alcohol or something. Like I said, I don’t drink to excess often. When I woke up still feeling terrible on Monday, I even told my mom that after three days you think I would feel better. After looking up roofies (I am not even kidding, I honestly thought I was drugged) I saw that it would be gone in 72 hours, so by Tuesday I should feel better. My eyesight kept getting worse. I mentioned it to my mom on Wednesday, but we thought that it would go away. I actually noticed it progressively getting worse throughout the day and decided I needed to do something. Urgent care at my doctor’s office wouldn’t see me because they thought I needed a CAT Scan- cue the tears! Honestly, I thought maybe I fell and hit my head the night I was drinking and desperately tried to find out.

Three hours (and $4,000!) later, they had done a CT Scan and a glaucoma test. The PA told me it was a migraine and sent me off with Zofran and pain meds. Because, you know, I never get migraines so I have no idea what they’re like (sarcasm, I get them often and they ALWAYS come with headaches). But, I was going out of town and all I was hoping for was my eyesight back- and fast!

Fast-forward to the following Monday (October 7). It had now been 9 days and my eyesight was getting no better. I was desperate for anything. I tried one of the painkillers when I was out of town that weekend hoping that would work- no. I tried eating healthy- no. I tried ignoring it- no. I tried an eyepatch-no (and it wasn’t even cute!). Realistically, I was getting kind of scared; I had no idea what was going on, and if you know me, you know that I need to be in control of my life and I really wasn’t. I made an appointment with my doctor again. I had to have more insight.

I was about to lose more control.

I went into the doctor’s office (A PA whom I had never before seen), I told him the issue and he promptly sent me away. He said I needed to see the optometrist, “like right now.” Luckily, they were just upstairs. I get up there and they ask if it’s an emergency. I told them the problem and that I wasn’t sure. Apparently it was an emergency. I sat there for a little over an hour not knowing what was happening. Over an hour of testing later (scans and dilation and fun stuff) and we still had almost nothing. He said he felt like it was Optic Neuritis, but couldn’t find a source. In retrospect, I’m fairly sure that he knew what was wrong because he told me I needed an MRI first thing in the morning.

And now, I am going to cut this short. I’m exhausted and I have more appointments in the morning. Maybe I’ll find inspiration to be funny and not drone on and on in the next post. Sorry to leave you hanging! I swear, I’ll get to it.