Not a lot of people know the story of how I completely went blind in one eye, only those with whom I’m close or who were around when it happened. I never talked about it online during the time of the event, or after it happened, but now that we’ve approached the one year mark, I realize it’s something I want to recount, if only for myself.
About a year ago, at the end of March and beginning of April I was renting a room at a house in Lake Elsinore, which I shared with a room mate. My twins were only just over two months old, and I had no transportation of my own. I should also mention that my boys were completely breastfed, and refused to take a bottle, so were completely dependent on me alone for all their sustenance. No one else could have fed them – even if there was someone else willing or available to do it – because the bottle just wasn’t something they knew how to use or would accept, nor did I yet (at this point in time) have stores of expressed milk pumped for them in the event of my not being around, though later this was one of the first things I made sure to do.
So, with all of these factors together it made me reluctant and hesitant to go to the hospital when things started going wrong, because of all the problems it would present. How would I get there? Could I take the boys in with me? If not, who would watch them? How long would I be there? How would I feed them? What if I needed to be admitted? It went on and on… but I’m jumping ahead.
Let’s start at the beginning.
On March 31st, a Thursday, one year ago today, I woke up and my vision was a little hazy and obscured. I did what anyone would do, I covered each of my eyes in turn to see what was the matter. I covered my right eye and looked out the left, everything was normal. I covered my left eye and looked out the right, and noticed the bottom third of my field of vision in that eye appeared cloudy and gray, blocking everything out in that section. I blinked a couple times. I rubbed my eye a little. I looked again; no change.
For about a week or so preceding this I had occasionally felt a pang in my right eye whenever I cast my vision downward, like a small twinge of a pulled muscle. I assumed that I had pulled something, or strained my eye somehow. Since it only happened occasionally, and only when I looked down, I really didn’t give it too much thought at the time, but now given the fact that my vision was partly obstructed in the same eye, I became a little concerned. I wondered if it was even possible to pull a muscle in your eye, or strain it in such a matter – and if so, how I had done it. I put on my glasses hoping this would ease the strain, and decided to see if my vision would improve throughout the day by trying to rest my eyes as much as possible. By the end of the day it appeared to be the same, so I hoped sleeping on it for the night would help, and went to bed.
The next morning, Friday April 1st, I woke up and my sight was still obscured. I covered my left eye again and peered out of the right side once more and noticed the gray cloudiness seemed to have progressed a little more, now making about half of my sight blocked from the bottom up, completely covering the lower half of my field of vision in that eye. My left eye was still completely fine. At this point I was much more worried than the previous day, and decided I needed to make an appointment to see an optometrist on Monday, and started looking up eye doctors that were covered by my health plan. Most offices were closed on Friday in my area.
The rest of the day was fairly uneventful. I went to Olive Garden for lunch with my best friend, as it was her birthday, and one of my other best friends went with us as well. I told them about what was happening with my eye, and how I could only still see out of the top half of it, but about how it was concerning me. After they realized I wasn’t joking, they both agreed it was not normal, and I should go in and have it checked out.
Then, everything got worse. When I woke up on the morning of Saturday April 2nd, I could not see out of my right eye at all. Everything was completely black. I couldn’t see out of any part of the eye whatsoever, or even make out shapes or light. It was no longer a grayish cloud covering only part of my sight, but entirely obscured. It made no difference whatsoever whether my eye was open or closed. I could only see out of my left eye.
I panicked. I cried. I feared the worse. I was going blind. I wasn’t going to see my children grow up. I wouldn’t be able to see their cute faces, or watch how they developed as they got older. I wouldn’t know what my own babies looked like. I wallowed in self pity. I let myself freak out, needing the catharsis of the breakdown.
Then I pulled myself back together and took out my laptop. I started searching online for possible causes of losing vision in only one eye. Most of what I found was pretty scary and not very encouraging. I believe I found about six or seven different conditions, almost all of which were not correctable, or could only be fixed if addressed within the first 15 minutes or so after symptoms presented themselves, such as retinal detachment. However, this one didn’t seem to fit, since my vision progressively got worse, with loss of sight from bottom to top, not top to bottom as was noted on the information I found. Then I discovered one condition that seemed to match what had happened to me more accurately than all the rest – optic neuritis – which was the only one that mentioned it was associated with pain during eye movement, which I had experienced preceding the event whenever I looked downward. It was also the only one where sight would gradually recover completely with proper treatment, returning over a period of a couple weeks after having reached the most severe point of total vision loss in the affected eye.
For the first time I was hopeful again. Not only was it the one that most closely matched my symptoms, it was the one from which complete recovery was not only possible, but typically expected with proper treatment. However, it was also noted in many places that it was oftentimes a precursor to multiple sclerosis, with about 30-40% of all optic neuritis patients later being diagnosed with MS – so that part was still unsettling.
I knew I needed to go to the Emergency Room and have the doctors determine for sure what was wrong with me, but I still had the issue of my two-month-old twin baby boys. I called the ER and asked how long I would have to wait if I came in, and explained the situation. They told me that there was quite a lot of people waiting to be seen, and that it would probably be all day before they would be able to get to me. They then advised me to wait until after 10pm in the evening to come in, because there was usually no wait by that time and I would be able to be seen right away when I came in if I did so after this time. They said if I was going to have to wait all day anyway, it was preferable to do it at home and not have the boys with me in the waiting room all day long. I listened to their advice and took their suggestion. When evening came my room mate drove me to the ER, and waited in the lobby with the boys, watching the babies for me while they took me back to be seen.
The Emergency Room had a rule that only one family member or visitor may be in the back with the patient at a given time, and since there were two babies, they weren’t sure whether I could have the twins with me in my room while I was being examined and tested. However, once it became apparent that it was going to take a while to figure out exactly what was going on with my loss of vision, and how many tests they needed to perform to properly diagnose me, they made an exception for my boys, and let my room mate bring them to me in my room, where they stayed with me throughout the night so I could care for and feed them.
As an aside, I need to note here that my boys were perfect little angels while I was at the hospital, and slept almost the entire time (during the evening) and didn’t fuss or cry at all. That part definitely made everything easier, and the nurses helped watch my slumbering angels whenever they took me to different departments to perform various tests. In fact, the nurses were arguing outside my door about who would get to watch them. Apparently they all wanted to babysit my cutie pies for me. I guess they don’t get healthy little ones in the ER often, and they were all so enamored with how cute the boys were that everyone wanted to be with the babies.
Altogether I was in the ER all night long, from a little after 10pm Saturday night until approximately noon on Sunday. I saw several different doctors and had various nurses during that time. They asked me questions, looked at my eyes, performed blood work, gave me a CAT scan, and did an MRI on my eyes and orbital cavities. After everything was done, they determined I had acute optic neuritis, the same condition I had found that most closely matched in my own online research before coming in, and the one I had been hoping it would turn out to be all along, because it was fixable.
Optic neuritis means my optic nerve was severely swollen, which is what causes the vision loss. It apparently occurred due to my own immune system mistakenly attacking my own optic nerve. The swollen nerve is treated with high doses of IV administered steroids over a few days, after which the nerve and vision recovers over time. Although it seems to be unknown within the medical community exactly why optic neuritis occurs to begin with, it’s generally thought to be caused by existing auto immune problems that may already be there or are occurring with the patient, and as such, further followup testing to pinpoint the underlying issue is recommended.
Due to the fact that they didn’t want to have to admit me for treatment, because of the difficulties that would be posed caring for the twins, they decided it would be best for me to return to the ER every morning for the next two days for an intensive steroid treatment administered via IV. They gave me my first treatment that same day, and I was to come back again Monday and Tuesday morning for the second and third doses – after which I was just supposed to wait, and my vision was to gradually improve over the next several weeks until it returned completely.
I was also told to follow up with my primary care doctor later that same week, and to be referred to a neurologist and have a second MRI performed, this time doing a full bran scan instead of on just the orbits, to make sure there weren’t any tumors or other possible causes for the problem “just in case.”
I did everything I was told, having all my scans and tests performed, as well as additional blood tests that the neurologist sent me to have done, and in the end two things were determined: 1) I did not have any tumors, and my head scans were all completely clear, and 2) I had markers in my blood tests that indicated I could possibly have either Lupus, or some other autoimmune disease, but there was definitely some type of autoimmune problems going on in my body, and that was probably what caused the issue to begin with.
Believe it or not this second bit of news was actually relieving to me, because I’ve suspected for many years preceding this that I most likely have rheumatoid arthritis, an autoimmune disease that attacks the joints. But since RA is very hard to diagnose, as there’s no specific test for it, but rather it’s a diagnosis of exclusion (when all other possibilities are ruled out) I’ve never had it confirmed by a medical professional. However, every doctor I’ve spoken with in regards to my symptoms seems to agree that it’s most likely the case, though as of yet it has not been “nailed down” so to speak and positively confirmed completely. So, now finding out that it was most likely the RA I’ve always already thought I probably had to begin with that was the source of the whole ordeal, and most likely not something scarier like a precursor to MS, or Lupus (though it is possible, Lupus and RA are very similar) I was a little more at ease.
I still have yet to do follow up testing with a Rheumatologist to have them make the final determination as to whether I have Lupus or RA, and make sure there’s nothing else going on – which was the next step in my diagnosing process when last I left off – because I moved up North and my medical plan changed, so I now have to start the process of referrals and testing over again from the beginning, and many of the doctors I need to see are not located within my area, but this is an ongoing process that will take a while to complete before the doctors are able to give me a firm diagnosis of exactly what is going on with my body.
However, after a few weeks my vision did start returning, with the black obstruction slowly fading back into the grayish cloud over my vision, where I could make out light and shapes again. Then eventually even that began receding where I could start to see out of the upper part of my field of vision again, each day moving a little further down, allowing me to see out of more of my eye, until eventually my sight had returned completely and I could see normally again. Or at least as normally as I ever could. (I’m still near-sighted and need to use glasses at times, but this has always been the case.)
The entire incident was incredibly scary for me, and it also served as an extreme wake-up call as to how suddenly things can go from normal to difficult, and how I needed more of a support network around me to help with the boys and contingency planning in the case of emergencies. In the end everything turned out okay and I was able to work it all out with a little help from friends… but what if it had been different? What would I have done?
What would you do?
It’s hard to think about at times, and many of us never do, because we don’t expect it, but these types of situations can crop up at any time, and happen to anyone. All of a sudden one day you can seem perfectly fine, and the next day some random, obscure medical problem can appear out of seemingly nowhere.
How would you handle it if something similar happened to you? What would happen in your household if you were suddenly forced out of commission one day and had to be admitted to the hospital? What if the problem wasn’t something you would recover from? What types of plans do you have in place in case of sudden or unexpected problems or emergencies?