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 6^th. 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.

 

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 15^th 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?

I spent about six hours in the emergency room waiting to be seen by a doctor. The hospital was a trauma center; so there were tons of people coming in for help who simply had more pressing health issues than me. For example: There was the lady who came in a wheel chair, holding her chest and screaming that she was having a heart attack. Then there was another lady who came in ready to pop her baby out right there on the ER floor. (Thank god she didn’t!) There was the old man who came in barely breathing. And there was me. Sitting in my chair, I looked perfectly healthy. At times I was even laughing with Mom and the only thing that “looked” wrong with me was the limp I developed in my left leg. I was a non priority and to me that was okay; that meant that I wasn’t really THAT sick. 

 

Those hours that I spent in the ER that day absolutely changed my life; both physically and mentally. Physically, I was deteriorating by the minute; the minor limp I had when I arrived was now more of a dragging of my leg as I stumbled through the ER hallways. Emotionally, I felt as though I was falling apart, but in reality, I was just beginning to build the foundations of an MS Warrior. I could probably write a whole novel about the people and things I saw in the emergency room that night but I don’t have the time for that right now (maybe one day!). However, allow me to hit the highlights: There are three very important things I learned during those hours I spent in the waiting room that I think are worth sharing.

First, complaining gets you NO WHERE!!! The poor nurse working at the registration desk took more verbal abuse than my office receptionist on the Tuesday morning after a long holiday weekend. Every person in that room thought their family member was sicker or needier or dying faster than any other person there. Just wait your turn people! We all feel like crap, or we wouldn’t be here. You imparting your sour puss attitude isn’t making anyone feel any better.

My mom stayed in that ER waiting room with me that night until I basically forced her to leave around midnight. After the third or fourth time I caught her “resting her eyes” I called in my little sister for a shift change. My mom had to work the next day and despite her preparedness in bringing her overnight bag, I wanted her to go home and get some sleep. I was already anticipating that I would probably need her to be around to talk to some doctors with me the next day. Which brings me to the second pressing thing that needs to be noted about my time in the emergency room. Having a strong support system is key! Not everyone is as lucky as I am to have that support within their immediate family; I know how truly blessed I am. My Mom is the greatest person ever invented; plain and simple, it’s a fact. There are no words to describe the support my mom has waveringly given me throughout this entire process. I am truly grateful for her. There are no words to adequately describe how amazing my mother is. She learned from the best though I suppose; my grandmother was also a super mom. 

This disease can make you feel completely alone while standing in a room full of 100 other people. It is hugely important to have a strong support network available to you; ideally one that consists of family, friends, and other MS warriors. If you don’t have one, find one! (Or reach out to me, you are welcome to join mine!)

Lastly, and finally, the third pressing thing that needs to be noted about my time in the emergency room. You must be able to live in the moment. At the risk of sounding like a total cliché, I will remember every detail of this moment for the rest of my life. As I walked to the exam room with my little sister I knew I was running out of time to live in my “ignorance is bliss” world of not knowing exactly what was wrong with me and just enjoying life. I just KNEW bad news was around the corner so I made a conscience effort to focus on the positive and live in THAT moment, and not worry about what might happen in a few hours.

Turns out, in that moment, the fates must have known that we needed a good laugh because just as as the nurse pulled closed the curtain to my ER “pod” and we were left alone the theme song from ER started playing from down the hallway. Not playing, more like BLARING! I kid you not, on que as the nurse closed closed the curtain. My sister and I exchanged “WTF?!?!” glances with each other and began questioning whether we were so tired we were hallucinating! And then it repeated. And then it repeated AGAIN!  AND AGAIN!!! Susan and I were laughing so hard tears were streaming down both our faces. I swear at one point I told her I thought we were going to get kicked out of the ER for being too loud! At a time when I could have let fear paralyze me into tears of sadness I was able to live in moment and enjoy those last minute of “not having MS.” It was priceless. 

Even as I sit here writing this I am literally laughing out loud at the memory. That time that I spent with my sister is something I will always cherish because at a time when I should have been totally freaking out and stressing, I was able to put everything out of my mind, relax, and enjoy time with a person I love. And live life without worrying about things that are completely out of my control. Nowadays I remind myself of that time a lot. That if I could be that calm, and strong, and relaxed sitting there waiting for answers with my sister, I can be like that any time I want or need to be.

Yet another short summary of a doctor appointment, this time with the emergency room attending physician. The doctor told me my symptom were “weird”. Then he asked me a couple more questions, and said “hum, that’s very weird.” Then he did a couple more tests, and told me, “that’s really weird.”  The amount of times the word “weird” came out of this doctor’s mouth was ridiculous. Ask my sister, she’ll tell you. He was weird.

Basically, my case presented outside his “specialty area” so he called in the neurology team. (Whatever weirdo!) My sister and I were very hopeful that the neurologists would come up with an explanation other than, WEIRD!

The neurologist told me I was going to be admitted for an ocular, brain, and spinal MRI with and without IV contrast. And she brought up those two initials again, M.S. She told me I wouldn’t have my MRIs until later that morning and it was only about 4am, so I sent my little sister home finally to get some sleep too. I was now certain the coming day was going to be a long one for everyone.

Monday, March 14^th 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!

 

 

Monday, February 29^th, 2016. Leap Day 2016. I remember when it was a Leap Day in grammar school we would celebrate it. Well…I don’t exactly remember what we did to “celebrate” it, but I remember that in my little kid brain it was a “cool” day. It only happened every four years so there was something “special” about it just because it was rare. A “cool” day much worthy of “celebrating”. Not Leap Day 2016. That day was not cool at all and certainly nothing worth celebrating. Leap Day 2016 is, in my opinion, the day my first real MS symptoms started to show themselves. The day my body starting revealing to me it’s new “normal.”

I woke up with numbness in my left side. And now I could say for sure that my vision had become worse. It was borderline between blurred and almost double. But it seemed to come and go in bouts. And I had places to be, it was Monday morning and I was a busy lawyer! This was also the beginning of my many experiences of having to ask for help as I began to navigate my new normal. My eyes were so bad that I knew for certain there was no way that I could safely drive myself to Will County for court and then all the way downtown to my office; it was completely out of the question. Que my incredible fiancé. He got up early and chauffeured me to court in Will County and then dropped me off at my office downtown. As I worked throughout the day I began noticing that my left leg now was feeling numb/tingly, even all the way down to my left foot and toes. When I got home that evening I made a doctor’s appointment. By the time I went to bed that night I had that strange new feeling all the way down the left side of my body from my rib cage to my toes. I am no doctor but even I know that is NOT normal. But still at this point, I wasn’t thinking it would be anything too serious.

On March 1^st I went to see my primary care doctor again and brought him up to date on everything that had transpired  since my January MRI. The January MRI was negative for any abnormalities. Since then my headaches had gotten better, but my vision had gotten gotten much worse, and now I had this numbness thing going on which was really weird…so…yea…WTF DOC?!?!?!

This was the first time my doctor hit me with those two powerful letters; M.S. To be honest, I really didn’t pay much attention to them though because he all but dismissed them in his next breathe by saying the results of my brain MRI from January made it very unlikely. He told me it could be a number of other things, like a pinched nerve or a herniated disk and those both sounded like MUCH better options to me. So I focused on those, took the prescription he gave me to help with the symptoms and minor pain and went on my way. I expected that he give me his standard order to report back to him if it didn’t subside in a week or two, as he always does; (he’s been my doctor since I was a wee little kid) but he didn’t. Instead, there was a slight modification this time. He said to follow up with him in a week either way and let him know how I was feeling. Maybe I should have seen that as a bigger red flag, but I admit that at the time I probably made a subconscious decision not to. Unfortunately, a week later there was no more denying it. It was clear that the prescription he gave me wasn’t helping anything and things were just getting weirder  and weirder inside my body.

A week later, March 8th, I called my doctor to let him know my body was still going completely bananas. He ordered a spinal MRI and said that even though the January MRI was negative he was becoming increasingly concerned that something more serious was happening. This time he mentioned the possibility of MS and specifically told me that the spinal MRI would allow us to see what we needed to see in order to make a diagnosis.

SPOILER ALERT!!!!!!!!

(I have MS…duh)

When I called the next day, on March 8^th to schedule the MRI appointment, the soonest they could even take me was March 19^th. I was looking at another eleven days of wondering what in the hell was going on with my body. Thankfully the rest of that week was rather uneventful. I was just tired ALL THE TIME. I felt like the littlest things took all my energy. I got tired enough to have to sit down from only going up one flight of stairs. My vision was still impaired to the point I wouldn’t drive much and my side was mostly numb but not completely (yet). All in all, it was uncomfortable and annoying but not horrible or unbearable. I could last another eleven days like this until the MRI, no big deal. Or so I thought.

There’s no “good” way to start this. There’s no “right” way to lay it all out for you where it will all make sense and at the end of the story there will be a definitive answer, some “ah ha! moment” where everything is explained and you are satisfied with how the story turns out. This is not that kind of story. This isn’t just a story…this is my life. My new life. My new normal with Multiple Sclerosis.

 

On the one hand it seems like this has been going on for some time now. But in the same instant it feels like my life changed in the blink of an eye. The one thing I know for certain now is that my first symptom actually started back in November 2015 and it took me five months to figure out what my body was trying to tell me. Like they say, hindsight is 20/20.

In November I noticed some pain in my left eye. It only hurt when I looked all the way to the left, or all the way up and down. So I just tried not to do that for a day or two and eventually the pain went away. Problem solved, according to me.

Then a few weeks later it happened again, but this time it was in my right eye. Same thing though; it only hurt when I looked all the way to the right, or all the way up and down. Good thing I already knew the prescription for this! a.k.a. Just ignore it and try not to look that way for a day or two. Once again I didn’t think too much of this because after following my own (terrible) advice of ignoring the pain last time, it went away. Problem solved again, according to me, Dr. Julie. (Yes, I used to be one of those people who NEVER went to the doctor! I solved my own ailments via WedMD, Google and my nurse Mom.)

Turns out that apparently I am not as smart as I think I am because fast forward to January 2016 and the eye pain was presenting itself in my left eye again; but this time it was MUCH more intense. Also, this time it was accompanied by some pretty bad headaches and a tad bit of blurred vision as well. I went to see my primary care physician (PCP) who said I probably just have migraines, as they run in my family, but he ordered a brain MRI just to be sure. The MRI results were negative, a prescription steroid treatment seemed to dissolve the headaches, and I my head was finally on the mend! I decided to concur with my PCP that it must be migraines, problem solved.

Well, almost…I still had that minor blurred vision issue. I wasn’t comfortable driving distances or in the dark as it got worse as the day progressed. But my PCP chalked it up to just side effects of the headaches and instructed me to report back to him if it didn’t subside in a week or two. At this point there was still not a thought in my head that there could really be anything seriously wrong.

But then I waited another week or two and I still couldn’t see clearly. So I scheduled another doctor’s appointment. This time to see my eye doctor for her opinion. To make a long doctor visit seem short (which will be a recurring theme throughout this I’m sure) she diagnosed me with fluid on my left retina. This was the medical explanation I was looking for as to why I was constantly seeing things like I was wearing drunk goggles! Treatment plan according to my doctor: it will heal itself over time but you need to decrease your stress levels. (Let it be noted that this is what every doctor since this all started told me as well. Got it, thank you. I am a little stressed out of a person. It is a work in progress. Especially now.) But as I was saying… my eye doctor sent me on my way with a follow up appointment two months later in April, with the same order as my primary care doctor, report back to her if it didn’t subside in a week or two.

I waited another week or two and for a while I couldn’t seem to tell if things were getting better or not. One day I’d feel better but then the next I’d feel twice as bad. So I kind of just wanted, and then waited some more. Then on February 28^th I woke up and the left side on the chest felt sort of numb. I thought maybe I slept on it funny and quickly dismissed the thought and carried about my normal day. I had a lazy Sunday with my fiancé. I didn’t really notice it unless I touched it; it was numb to the touch. I vaguely recall noticing the feeling (or lack thereof really) was still there when I went to bed that night, mainly because I always lay on my left side to fall asleep. But it was terribly uncomfortable for me so I had to ask my fiancé to switch sides of the bed with me. Which he did, of course, without question; because he’s incredible. I went to bed that night blissfully unaware that lesions where eating away at my central nervous system.

At the time all of these little things happening in my body were just that, little things. Looking back now I realize that was MS just starting to rear it’s ugly head. I remember having a conversation with my Mom following my “all clear” MRI report in January and telling her that despite the doctors telling me everything looked normal, I didn’t FEEL normal. I felt…weird; but I couldn’t explain it exactly.

I spent weeks, months even, trying to put feelings and symptoms I was experiencing into words and terms that other “healthy” people could understand. However, when I tried to explain my symptoms even I thought I sounded like a crazy person…so why the hell would anyone else believe me?!?!?! What would you think if you heard me say, “Well Doc, I feel like I have champagne bubbles popping all over inside my head but then behind my right eye it feels like a giant ice cube is lodged in my brain. Oh, and when I walk it’s as if my brain is telling my legs to go but they aren’t comprehending, they stumble or go sideways instead and feel like they are made of lead.” That sounds like the ramblings of a crazy person, or a drunk person, but in fact those are symptoms (just a few) of a person living with MS.

My body was trying to communicate with me and I didn’t know enough about MS to understand what it was trying to tell me. There were warning signs that I can’t fault myself for not seeing because I didn’t even know to look. Hindsight is 20/20 though and the only way to get any answers with this unpredictable disease is to learn your MS’s individual pattern, (if there is one.) The best advice I received as newly diagnosed; keep a symptom journal. (Even when you’re feeling good, especially then in fact!) This will help you find patterns, triggers, etc. for your symptoms and make it MUCH easier to inform your neurologist at appointments on what has been happening with your MS! And don’t ever worry about sounding like a crazy person to your doctor, they’ve heard it all before and then some!