Monday, March 14th was the day I finally gave in and went to the Emergency Room at Rush University Medical Center. But of course, in true Julie fashion, I didn’t go until after I had commuted downtown to work, completed the morning court call, double checked by an appointment with my eye doctor that it wasn’t just my eyes acting up again, and essentially was left with no other choice. My vision had been getting worse by the day but as I drove to the train that morning, my vision went completely double. I couldn’t tell if the car in front of me was parked or driving straight towards me! I had to cover one of my eyes in order be able to see just well enough not to crash. I should have turned right around, gone home, called my fiance, and gotten my butt to the hospital. No, rather I should have just pulled over and called for help as I was in no state to drive! But that’s just not how I worked back then. I didn’t prioritize my health at all. I never had to.
The first big red flag of the day was when I almost hit a parked car, but I kept on going and made it safely to the train. When I walked into my office building that morning a co-worker asked me if I was walking with a slight limp. I had noticed that I felt like maybe I was walking a little funny but, as usual, was trying to ignore it because I couldn’t explain it. Second big red flag of the day, but I kept on pushing through. When I got up to my floor, my receptionist took one look at me and said she thought I looked like something was wrong with my eyes. Third red flag of the day, and did I let it stop me? Of course not, I went to court anyways; slightly staggered walk and all.
By the time I was walking back from the courthouse my vision was so bad that I was nervous to cross the street because it was hard to make out which was the traffic was going. By that point I was very noticeably having trouble walking and my left leg felt like it weighed a hundred pounds. It’s only a three block walk from the courthouse to my office but I quickly began doubting my ability to make it back safely. I couldn’t decide if I was more likely to collapse from my leg giving out or get run over by a taxi that I didn’t see while crossing the street. Safe to say that was the fourth red flag so I decided to start paying attention; but not one hundred percent yet.
When I got back to my office I knew that I couldn’t continue to pretend that what was happening with my body was not a big deal. But I still wasn’t prepared to go to the hospital. Certainly I couldn’t be THAT sick? Not me!!!! Back in January my eye doctor diagnosed me with fluid on my retina (her reasoning for my vision issues which she claimed would resolve on its own in a month or so.) Obviously she was wrong and I assumed I just needed eye drops or something now too in order to get the recovery process moving along faster.
After I called my eye doctor to make an emergency appointment, I sent my primary care doctor an online message updating him, and finally called my fiancé to let him know what was going on. I told him I was leaving work early to get to the eye doctor ASAP. According to him that’s when he knew it was serious…I NEVER miss work unless it’s an emergency.
Another visit to the eye doctor made short: She re-ran the previous scan she did to initially diagnose the fluid in my left retina. The result – I was CURED; no more fluid on my retina, awesome! But wait…that did NOTHING to explain why my vision had taken this drastic turn for the worst (or double to be more accurate.) If the fluid on my retina was gone that meant something else was causing my eyes to see double; but what?
She gave it to me as straight as she could… (This is going the be a HUGE theme in my MS story; this “doctors giving me as exact of answers as they possibly can.” Which really means they are telling me absolutely zero “exact” answers about my MS because they don’t have any. Not a single doctor has any definite answers about anything related to MS. This is because MS is the most unpredictable disease in the history of all time of ever!) Uh, rant over.
The eye doctor told me that there was absolutely nothing wrong with my actual eye balls, or my retinas, or my optic nerves; which meant that whatever was causing my vision problems went deeper than that. Instead, she said, my body was more likely having a problem sending the right messages from my brain…to my eyes. I immediately got a terrible feeling in my gut; that sinking feeling in your stomach when your legs go weak too. I just had to be sure I was understanding her correctly so I asked her point blank…”so you think the problem is in my brain then?!?”
Short answer: Yes. “The problem is most likely neurological”, she said, and brain problems were “above her pay grade.” So no, she could not give me any official diagnosis and instead insisted that I head straight to the Emergency Room for a consult with a neurologist. That’s when I got nervous. She even took the time to print all the results of the tests she ran on me that day and make notes for me to bring to the ER doctor. Sitting there in the waiting room with my fiancé I knew this wasn’t standard operating procedure. I quietly began panicking inside. I felt like I was getting closer to an answer that I wasn’t going to like.
One hour later, when my mom picked me up to go to the ER we were both as prepared as possible. Mom brought her overnight bag and some clothes for work the next day and I brought a toothbrush and deodorant, just in case (although at the time I still doubted) I would be stuck there overnight. I insisted my fiance stay home and sleep as he had work the next day at 4am and I assured him I’d probably be home before he got up anyways.
By this point it was about 7 p.m. and I was absolutely exhausted from the already long day. I was having such a hard time keeping my balance and walking straight that I needed help getting out to the car. Then I had another one of those lifetime memories that gets burned into your brain that you’ll always remember in great detail. I realized that as I was walking I was very conscious and aware of every single step that I took. I actually had to think about it. The scariest part was that I was actively thinking about making my legs walk (normally) and my legs refused to do it. It was almost as if I could physically feel the brain mixing up the messages it was trying to send to my legs. Or rather, that my legs were not understanding what my brain was telling it to do; even though my legs had known how to walk for quite some years before that day without a problem. When I finally made it to the car my leg would not lift itself high enough to get in. I had to manually lift it in with my hand. This officially commenced internal panicked mode for me. For those of you without MS, you are probably thinking, “what the heck is this girl talking about. She’s crazy!” If you are reading this and have MS, you are going “OMG you too!!!”
Looking back, I now know that what was happening was my first MS flare. More importantly, I now know that the sooner you seek medical treatment during a flare, the better. Within thirty minutes of receiving my diagnosis, the doctors had me started on heavy dose IV steroids that I received three times a day for the next five days. Those five days I spent in the hospital were going to be the most difficult. (Or so I thought at the time). Instead, I quickly discovered that the next few weeks at home were going to be even harder than my days in the hospital. I wasn’t even physically up to leaving my house until I had been out of the hospital for six days. On day six I left the house for half an hour. On day seven I slept all day. On day eight I left the house for one hour. On day nine I slept all day. And that pattern continued until I was recovered to about 80% of my pre-diagnosis self. It took SIX weeks for me to return to work, even just on a part time basis. That period of recovery taught me the virtue of patience. Healing can not be rushed. In fact, trying to rush healing is the worst thing a person can do! I had never been sick for that long before and being fairly immobile really took a toll on me mentally.
I will NEVER wait that long to seek treatment again. The next time my body started feeling weird again I went straight to the ER and I was fully prepared. (More on that later though.) I learned from my past mistakes and my body rewarded me by not taking as long to heal the second time around; probably because I didn’t allow my body to damage itself as bad that time! After my second relapse I was back to work after about four weeks. Lesson learned: I needed to start listening better to my body. And when my body decides to act up, I need to seek medical assistance sooner rather than later.
Now when my body tells me to rest, I rest. Even when I’d rather be out doing a hundred other things. When my body says it needs medication, I stop and take it despite some of the nasty side effects. If I don’t listen, my body will punish me later and I know full well that my body can be a MAJOR bitch when she wants to be. But we are learning to get along better now, my body and I. I take it easy on her and in return she does her best to not cause me intolerable pain and discomfort; most days at least. It’s a working relationship; luckily we’ve got a lifetime to perfect it!