After five days of steroid treatments I was finally released from the hospital. I couldn’t wait to get out of there, but I knew my real struggle would begin when I got home. I had to ride the entire way home with my eyes closed because the road was so blurry it made me feel like the car was moving 200 miles an hour. Opening my eyes for even a few seconds made me feel like I was going to throw up. After the ride home, and the fifteen foot walk from the car to my front door (which took me a solid five minutes) I was exhausted. I was basically in and out of sleep for the next two days. Weening my body off the steroids was quite a kick in the ass. I didn’t even leave my house for the first five days that I was home from the hospital. On day six I made it out of the house for an hour before I felt like I needed a long nap. And everyday after that I tried to make it out of the house for a little bit longer.
Those weeks following my first relapse were some of the most trying of my life. Or so I thought at the time. There were two main thoughts running through my head at that point. 1. I need to get through this relapse and back to my normal life. 2. I need to hope and pray and cross my fingers and toes that I am one of the lucky ones who doesn’t experience their second relapse for many years to come.
I put 98% of my energy into focusing on thought number 1. I did my physical therapy, my occupational therapy, I walked a little farther around my block each day, I read up on what I missed in my cases while I was out of the office. I did everything I could to push this MS bullshit out of my life and get it back on track. About two weeks after being released from the hospital I went back to work. Just for a few hours that first day, and I slowly increased my hours back to almost full time by the start of May. Things were looking up for me!
During the first week of May I was scheduled for my six week follow up MRI. I think I was more dreading the process of going through another MRI than worrying about getting the actual results. I now knew full well that another round of MRIs meant three hours in the scanner with nothing but my owns thoughts and the beeps, wirls, and bangs of the machine. Oh and don’t forget the “lay perfectly still or we will have to redo the images and it will take even longer” part. That was obviously my favorite!
I woke up on the morning of my MRI, May 4, 2016, feeling so nervous I thought I was going to throw up. Something that you will learn about me is that when I am alone with my thoughts for too long my brain starts to run through all these “worst case scenario” possibilities. I try to anticipate anything that could go wrong in a given situation and find a solution so that I am prepared. It’s the lawyer in me I suppose. However, that trait that makes me a good lawyer has proven to be the largest obstacle in my acceptance of MS. By the time I laid down on the MRI scanner I had all but convinced myself that I could feel the lesions still inflamed in my brain and that once again, this MRI was going to “light up like a Christmas tree” as Dr. Christian so eloquently put it a few months back.
Between my diagnosis and my follow up MRI I had read everything I could get my hands on about MS, the suspected causes, the different drugs, how other people were living their lives with MS, etc. I watched videos and called support hotlines; you name it and I looked into it. (Like a good lawyer I did my research!) There is so much about MS that is still unknown that it makes it impossible to know how any one individuals particular case is going to play out for them. I cried when I read about people who were wheel chair bound before the age of 40. I cried when I read about a 70 year old with MS who still runs marathons. Mostly I cried about everything I read because I had no idea which one of these people I was more likely to turn out like. So while I hoped for the best out of my MRI results, inside I was expecting the worst. I also had already begun implementing a solution for when my results came back with bad news, just in case.
Other than the loud banging, obnoxious clicking, and uncomfortable table to lay on the MRI was uneventful. As I got dressed and prepared to leave I was glad that the worst was over and now all I had to do was wait for the neuro to call. Thankfully I did not have to wait long too long because right before I left the MRI office a terrible thing happened…the nurse asked me if I wanted a CD with all the images from today to take home with me. What?!?!?! You mean I could see these images the minute I get home?!?! These images that would determine the entire path of my health were so close I could taste it. So of COURSE I told her I NEEDED one! (Actually I got two; always have to have a copy!)
As I waited for the CD to print, I started to remember back to the neurologist showing me my first MRI results in the Emergency Room and I could CLEARLY see the active lesions. They are bright white spots, how can you miss them, right? So I thought I would just go home and look at the images myself and that would I would have instant answers! TA-DA!!
Let me tell you, there is a reason that it takes years of study to be able to read these things because I couldn’t tell what was supposed to be showing up on my brain and spinal cord and what was not. So I sat there, for about two hours, and Googled “brain MRI with MS” and “spinal cord MRI with MS” and compared those Google images to my scans. I know, I know, this probably sounds insane to a normal person. But I was sitting there with this CD that held such important information to me and I couldn’t even read it! I was frustrated beyond belief. I had also, of course, started to convince myself that I was seeing new lesions that were not there in March. Quite the irrational thought since I could barely even remember the neuro even SHOWING me the MRI images in March; let alone what they showed and be able to accurately compare them. As I said earlier, I like to prepare for the worst.
My neuro called me while I was on the train home from work on May 6th. She gave me the first good news I’d had in months! My MRI showed no new lesions and the ones that were already there had decreased a bit in size! While I was still not completely recovered 100% at that point, I felt confident in saying that I had survived my first relapse. I went through hell and back and was ready to put this all behind me.
With that good news from my neurologist I finally allowed myself to start thinking positively. I knew that technically MS would be something I would “have” for my entire life but I was hopeful that I wouldn’t have to deal with it again for many years. Feeling much better physically, I was able to change my mindset as well to take this diagnosis as a wake up call from my body. It was telling me to slow down a bit and start appreciating life more. It was telling me to “work to live, not live to work”; a lesson that I thought I had learned a year earlier when I quit my job and moved to Australia (more on that later.)
In the hoopla of career, marriage, and just life in general, I realized that I had forgot that lesson. I was running myself ragged, working my ass off and treating my body like crap. I figured this was my body’s way of reminding me, that although I no longer lived in a paradise halfway across the world, I needed to remember what I learned there. Point taken MS, got it! No need to remind me again for a VERY long time! Everything that my body had gone through in the past two months since my trip to the ER was enough. I was ready to get back to my “normal” life and I wasn’t going to take even the smallest thing for granted.