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.

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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.