Later that morning they took me for my MRIs. I laid perfectly still in that stupid machine for two hours and seven minutes. I felt like I was going to crawl out of my skin by the time I got out of there. That is an incredibly long time to have to lie perfectly still and not move. I do not recommend it to anyone. However, I better get comfortable with this process pretty fast because it looks like they are going to be a big part of my life from here on out.
It was around noon on March 15th that I got back to my bed in the ER and had nothing to do but sit and wait for the neurology team to arrive and give me the results of my MRI. Thankfully I had already called in my support team (before I went in for the MRI) so my incredible fiance and mother arrived in my room within ten minutes of my return from radiology. So we waited together. To be honest, I have no idea what we talked about or really any other details of those two hours that we sat together and waited. Oh except for them both telling me that I should try and sleep. HA! Right, like that was going to happen. And that Law and Order reruns were on TV.
We waited. And then we waited some more. And of course it was just minutes after my mom left my room for the first time since she arrived, that the neurology team came walking in to deliver my results. Dr. Hernandez, or “Christian” as I would come to call him over the next few days, wasted no time getting straight to the point. “Your MRI shows very strong signs of MS. We found multiple lesions on both your brain and spinal cord. Let me show you.” And that was all I remember him saying. I cut him off and my response to him was, “ok. but you need to wait for my mom to explain the rest.” My fiance stepped out of the room to call my Mom and I just sat there, tears starting to fall down my face. We all just sat there in this terribly awkward silence until my mom came back after what felt like an eternity. (Apparently it was less than five minutes.) As Christian started explaining in detail what they saw on my MRI, I started going through a million questions in my head and couldn’t pay attention to him. Even if I was paying attention, I still would have no clue what he said because doctors speak in a medical code that us lay people find hard to understand. In the days that followed I probably asked my mom or my nurse for a “translation” about a thousand times.
Although I may not understand the medical speak, it is true when they say a picture is worth 1000 words. When Christian put the images of my brain and spinal cord on his computer for us to see, I was speechless. I’ll never forget him saying that my “MRI lit up like a Christmas tree.” No way could all that crazy shit going on in MY body. I had just done this in January and there was NOTHING weird going on in my brain according to those pictures! It was unbelievable. I’m not sure exactly how many they found all together, I lost count as he was pointing them out.
The next thing I remember was Christian telling me that I had just bought myself a five night stay in the neurology unit. Five days! I had never even been in the hospital over night before. (Well unless you count the lovely night before that I spent in the ER.) I think it was at this point that I stopped trying to force my brain to process everything that was happening to me. I was going to be stuck in this hospital for awhile so I’d have plenty of time to work it all out before I was released and back to my normal life. Or so I allowed my mind to think.
It would take another few hours for a room to open up in the neurology unit but the doctors didn’t want to wait to start treatment. They started me on an IV of heavy steroids within an hour after Dr. Christian delivered the bad news. It was around 8pm that night that I finally got settled into my new room. Which, might I add, was pretty bad ass. It was a private room, with its own bathroom, pull out couch, lounge chair and flat screen TV. Oh and my favorite part, an allstar view of the United Center. I insisted that my fiance and my mom go home and sleep because at that point I felt too tired to function. But even after being awake for 37 hours straight, I still needed a strong sleeping pill before I finally felt relaxed enough to fall asleep. I had quite a stressful day.
Even as I write this part of my story, I feel myself breathing an audiable sigh of relief. It’s as if just writing all that and reliving it through words has brought it all back as fresh as if it happened just yesterday. It’s incredible to think back at how far I’ve come…and how far I still have to go.
However, I realize I did leave out one part of that. Not intentionally, mind you. It’s like my brain just blocked it out knowing that it was the hardest part of the story thus far. But I’ll tell you what it was. It was the part where I was still in the ER pod, the doctors had left, my husband had left to go pack a bag for me, and my phone beeped that I had a new text message. It was my sister wanting to know if I had received any update yet from my MRI results. At this point very few people even knew I was in the hospital. However, my sisters and my Dad knew not only that I was having an MRI but exactly what time I was supposed to be finished and hopefully have some answers. That time had come and gone well over an hour ago. I knew that I could not avoid their concerned messages much longer, but I didn’t know if I could muster the words to tell them what was going on. Without going into major detail, those were three of the most difficult conversations of my life. Having to call my Dad and sisters to tell them I had MS was more devastating than hearing the news from the doctor myself. I hate giving people bad news. And I REALLY hate giving people I LOVE bad news. What made matters worse was that none of them really knew what MS was either, and I was in no state to try and explain it to them. All I could comprehend at that time was that MS was an incurable disease that wasn’t going to kill me, but would alter every aspect of life as I currently knew it. Pre-MS Julie was officially gone and replaced by this weird body that I could hardly recognize.
Despite being put on the steroid treatment almost immediately after my MRI, the lesions in my spinal cord were not going down without a fight. I woke up the following morning (Wednesday) unable to walk on my own. It was like I was telling my left leg to walk and it just wasn’t listening or comprehending. Well yea…that’s basically in a nutshell what MS does. It’s a disease attacks the protective covering around your nerves and causes damage to your nerves. So when your brain tells your body to do something, the damaged nerves send the wrong messages to the wrong place and crazy things happen (or in my case) don’t happen to your body.
Eventually the steroids started taking effect and by Friday morning I was walking on my own to physical therapy. It was not a very impressive walk, but I was walking none the less. If this was life with MS I was not looking forward to what lie ahead. I should have been feeling very proud of myself at that moment but I couldn’t help feeling like just a shadow of my old self. This was a feeling I would struggle with immensely in the weeks to come. But things would get better…eventually, right?