I left the hospital on the evening of July 5, 2016, with an oral steroid prescription and instructions to return if my symptoms got worse. Sure enough, less than a week later, six days to be exact, I was back in the hospital for admission and Relapse Number 3; Part 2. I should have assumed I would not get off so lucky as to have a relapse without a hospital stay. While the numbness slowly progressed during the week I was free from the hospital, it was actually another new symptom that finally prompted me to call my neurologist. Personally, I was prepared to give the the oral steroids their full ten days to work before I gave in and made the call, but my left hand had other plans. By July 7th, not only was I now completely unable to grip anything with it, it had developed a terrible pain that I could only describe as “exploding”. Yup, you read that right; exploding! It felt like my hand was incredibly swollen, puffy, stretched and ready to explode if the pressure was not released ASAP. The pain began dull that morning but by mid afternoon I was in tears trying to convince my husband to just cut off my hand. (Thankfully he knows when I’m being a bit dramatic!) At this point I was wishing it would ACTUALLY explode so then maybe the pain would stop.

When I broke down and finally called my neurologist, I admit I was still not quite ready to concede hospitalization. Not again; not for the third time in just a few months! I was already becoming very skilled at downplaying my symptoms and masking my pain to the outside world. But when your neurologist asks you questions like “how long have you been unable to use your hand?” and “since when has your ENTIRE left arm been feeling weak?”, you are forced to answer truthfully or risk being misdiagnosed or mistreated. According to my neurologist, everything I was telling her made her 100% convinced that the oral steroids were not doing the trick. I needed to be admitted for IV steroids; and this time I needed to stay the full five days. No early escapes this time. Well shit! I knew at this point fighting admission was a battle I would lose.

However, the lawyer in me wanted to negotiate, of course. Even in the face of defeat, I wanted to feel like I was getting something out of this deal. I needed some sort of control. So I told her that I would go, but since according to her, she already “knew 100%” what treatment I needed, there was no reason for me to spend countless hours in the ER being poked and proded by some clueless doctor. I needed to be admitted to the neurology floor ASAP and IV Solumedrol administered every 8 hours for the next five days. I told my doctor that she should have someone call me when a bed was ready. I would start packing and wait for the call but I was not about to hustle my butt down there just to hurry up and wait. Thankfully, she agreed. (I think my attitude gave her little choice.) We hung up and as she went about trying to find me a bed, I started counting down the minutes until the dreaded phone call summoning me back to hospital prison. At least this time I knew exactly what to pack, who to alert, and the precise day I’d be returning home. As pissed off as I was at my MS, at least the frequency of these relapses was helping my learn my disease patterns REAL fast. Quite a bit faster than I would have liked.

Skipping the ER was absolutely the way to go! Total game changer! It took a few hours to get the call from hospital Admitting and Registration that my bed was ready but once I got to the hospital and checked in, I was in my room on the neurology floor within twenty minutes. As I walked to my room I was greeted by the familiar smiles of the nurses and their “oh no! Not again?!?” hugs. I felt like a hospital VIP! And rightfully so as this was my third stay there in five months. I was really getting to know the lay of the hand here.

Despite the fact that my neurologist had called the attending neurologist on duty at the hospital and informed him of exactly what I needed, I was still given a hard time when it came to dealing with my “exploding hand”. Yup, they looked at me like I was a crazy person. The IV steroids would eventually help (hopefully) all the symptoms of this relapse settle down but it would take a few days. Solumedrol is not an instant fix; in fact no drug is. There are medications that are  equivalent to putting a bandaid on a symptom until the steroids kick in, but the real healing wouldn’t come for a few days. So what the hell was I supposed to do about my exploding hand in the meantime?!?! Unfortunately for me, the attending neurologist was one of those idiots that believed that MS doesn’t cause pain. This is the BIGGEST myth/lie/misconception about MS!

MS causes pain of all kinds, severity, and in any and all nerves in the body. While I was absolutely convinced this exploding pain was a result of my MS, the neurologist wanted to rule out ANY and ALL other possibilities before she would do anything to treat it; or put a bandaid on it until the steroids started working. She made me bend, flex, and do every hand exercise under the sun until I was in tears from the pain. She insisted that she could find nothing wrong with my hand on the outside so she ordered an X-ray. I told her repeatedly that she was wasting her time (and my money!) ordering a test that would show nothing but she didn’t listen. What did I know anyways?!? I was just the patient, not the doctor. This was just another lesson in becoming my own advocate for my health. When the doctor doesn’t listen to you, you must talk louder! Yell if you must! And that is exactly what I did. Again I wasn’t winning any patient of the year awards, but it got me the treatment I needed.

Once that idiot doctor ordered the X-ray and left my room, I paged the amazing nurse who was assigned to my room. She had worked with my on both my previous hospital stays and she seemed to trust my opinions as a patient. I asked her to call my primary neurologist and explain to her what this idiot attending neuro was doing. She informed me that she had in fact already left her a message after overhearing my “loud conversation” with the attending. I LOVE NURSES! Within the hour I was finally given the pain medication I needed to stop me from trying to convince the nurse to cut off my hand. Oh and guess what? The X-ray showed NOTHING wrong on the inside either and cost me over $1,000. You better believe that me and that attending neuro had a lovely chat when she came to deliver those test results. I don’t think she found it as humorous as I did when I asked her if I could borrow the $1,000 to pay for the test since SHE insisted on it. Obviously I know things don’t work this way but I could tell by the look on her face, that question made her think. Maybe she’ll listen to the next patient better. Here’s hoping.

Dealing with all this idiocy was making me pretty frustrated and angry. I needed a little inspiration, some positivity, maybe some reassurance that all this crap I was going through was somehow going to make sense one day. I did a lot of reflecting on life during those five days, questioning my decisions, and honestly, a fair bit of blaming myself too. Once I was done with my little pity party, I found myself laying in bed for hours reading quotes on the internet. (I had lots of downtime and all the steroids made it impossible to sleep!) I read quotes about adjusting to change, overcoming obstacles, dealing with loss, resilience, and everything in between. I’m a sucker for a good quote. (I write them on colored Post Its and stick them all over my house.) Or hospital room in this case. While unable to sleep one night I came across this one that stuck out to me:

MS is not a death sentence, it’s a life sentence. While anyone could step into the street and be hit by a bus; people living with MS have seen the bus. We’ve been hit by the bus and we know that we walk a life along the bus route – with our backs to the traffic.”  

~ Trevis L. Gleason

At first, I didn’t fully grasp its meaning. I wrote it on a post it anyways because I wanted to think on it for awhile and come back to it. Finally, it hit me. The realization I had been struggling to make for some time now. After being diagnosed with MS I felt like my life was turned upside down. Also of a sudden, I had to worry about whether I would be able to walk the next day, or see well enough to drive home from work, or be the one to teach my kids to drive, or dance on my 50th wedding anniversary. These were all super scary thoughts to have to come face to face with. Living with MS meant trying to every minute that I could because one day I wouldn’t be able to; and I had no clue when that day would be. It could be tomorrow or forty years from now.

But you know what? NO ONE knows the answers to any of those questions! I didn’t know any of those things for certain before I had MS either; I just never had a reason to think about it back then. Your typical healthy 30 year old doesn’t wake up each day and do a mental check to make sure all her appendages are working. She don’t worry about stopping at the grocery store after work and not being able to make it through the entire store and back to the car before collapsing. These are the thoughts I lived with daily. I was a (almost) 30 year old living my life absolutely terrified of what the next day would bring. I was terrified because I had seen how bad it could be; and I knew that it would get worse. As the quote said, I had seen the bus…shit, I had been hit by the bus THREE times already! But each time I got back up. Each time I learned a new lesson that would help me in my fight against MS. I decided to start considering myself lucky instead of diseased. I was lucky because at the ripe old age of 29 I had seen and fully experienced what it feels like to be completely disabled, 100% dependant on other people; and I had come back from it. I had a new lease on the value of my life; my legs, my hands, my eyeballs…my everything basically! I was ready to crawl out of my pity party and starting fighting with everything I had. Game on MS!

On Wednesday, June 1, 2016, I was admitted to the hospital for my my second round of IV steroids. When I spoke with my neurologist over the phone the only question I had for her was how long would I have to stay? “Between three and five days, depending on how your body responds,” was her answer. That’s when I really lost my shit! BUT MY MOM IS GETTING MARRIED THIS SATURDAY! That’s in just THREE days. So being the stubborn ass that I am, I told her that I would come, but only on ONE condition; that I was leaving that hospital on Saturday no matter how my body “was doing.” I insisted that she promise me I could leave on Saturday. Obviously, she could not; but she made it very clear that come Saturday she could not force me to stay there against my wishes. Ok, fine, deal! I could slam five days worth of steroids and hospital recovery time into three, no problem. Challenged accepted MS! And if not, I was fully prepared to leave against medical advice if it came to that. 

Again I learned from my past experience and made the most of my time in the hospital. The first time back in March I was so blindsided by my diagnosis that I took any and every excuse to avoid dealing with it. I needed distraction; anything to not face my new reality. I welcomed visitors all day, every day, for the entire five days that I was there. I got steroid treatments every eight hours which required me to be hooked up to an IV drip for an hour or so. In between those doses there were a slew of other blood tests, x rays, MRIs…you name it, they tested it. I was lucky to get 3-4 hours of sleep per night, in total! This is very common in hospital life. 

By the end of my first adventure in the hospital I was more exhausted than I’d ever been in my life! When I finally left l I was excited to get home and back to my life. But instead I pretty much slept for two days straight. Well, I woke up to take my medicine and use the bathroom but that was about it. I didn’t even have enough energy to eat hardly at all.

Hospital stay Round 2 had to be much different though. There would be no time to sleep once I was discharged. I had the wedding of the century to attend! And by “of the century” I do mean literally…my Mom and her fiancé had been together for thirteen years on the day they tied the knot! There was no way I could miss it. Other than my immediate family I didn’t allow anyone to visit. I slept every minute that someone wasn’t trying to stick a needle in my arm or scan some part of my body, or try and explain what would happen next. I did everything I could (which, yes, meant doing basically nothing) to get ready for my mom’s big day.

I was glad to have Mom’s wedding as the light at the end of the tunnel because as pleasant a stay as Round 2 was, the future that came after for me was looking incredibly scary. In order to be “officially” diagnosed with MS you have to have had two separate relapses (or flares, exacerbations, episodes) with at least a month in between. Check! Now that I was experiencing my second relapse it was “officially” MS; which meant it was time to start treating the disease. Gone were the hopes that it would be another five or ten years until my next relapse. Not even close!

Sitting there in the hospital, realizing that my MS wasn’t going anywhere, and the lesions were continuing to develop along my spinal cord I knew I needed a plan. Time to take action! I had briefly looked online at some disease modifying drugs (DMDs) a few months ago but quickly dismissed the idea as future Julie’s problem. This was primarily for two reasons: 1. I was hopeful that I wouldn’t have to take a DMD for a VERY long time, and 2. Once I started reading about these drugs I quickly became horrified of all the side effects! (Hair loss, weight gain, skin welts, prophylactic shock, liver damage, brain disease, oh and DEATH!) Wtf?!?!? I thought these medicines were supposed to help me, not kill me! It didn’t take much more reading to realize that in the MS world most of what we put into our bodies to help fight our MS can be terribly harmful to the rest of our body. I quickly decided that researching DMDs was not going to put me in restful positive mindset, so I set that assignment aside for future Julie as well. Poor future Julie! 

In highsight, it was probably very beneficial to my recovery to have a goal to aspire to; I wanted doctor’s approval to leave on Saturday for the wedding. Mind you, I still would have left on Saturday without his approval but trust me, no one wants to piss of their neurologist. I was going to make it happen. It took a village to get me there, dressed, and standing up by my Mom’s side in all her bridal beauty. But I made it! And with the helps of my super sisters and step sisters, no one could tell I was released from the hospital just hours before Mom walked down the aisle. 

It was during this stay in the hospital that I realized how truly amazing the hospital staff all were. It was a team effort to get me out of there in just three, and not five, days. I told everyone that it needed to happen! From the attending neurologist who headed the team on daily rounds, to the lady who delivered my meals, and every shift of nurses in between, every person who saw me in those three days found out that my mom was getting married on Saturday. They made slight modifications to my medications times, expedited my lab work, and put me first on the schedule for morning rounds. If they could have carried me to the wedding themselves I think they would have.

I am a master procrastinator. I also don’t really enjoy dressing up. I suppose it was the perfect combination of the two that lead to me not having a dress to wear the week before my Mom’s wedding. To my credit, I still thought I had a week to shop as I wasn’t planning my second relapse for the week of my Mom’s wedding either.  Now I was just focused on getting to the wedding and completely forgot about needing something to wear. Thankfully I come from a family of four women who all wear (give or take) the same size. Between both my sisters’ closets and my mom’s, I had enough options to get me through all of wedding season! 

The highlight of hospital stay Round 2 came the day before Mom’s wedding. Once again it was my little sister to the rescue to bring humor to my hospital stay. She came to visit me so we could finish writing out the place cards for the wedding and she showed up to my room with a handful of formal dresses! (This I wish I had a picture of!) “You better pick one of these and were it tomorrow,” she said, “because I felt like a total freak walking in here with all these!” Who brings multiple formal gowns to a hospital room? Yea, I probably would have looked at her weird too! We had a mini fashion show right there in my hospital room. The giant hospital bathroom is actually a lot more spacious than most department store changing rooms! I modeled the dresses and my little sister and the nurses cast their votes. I thoroughly enjoyed myself that day. In the hospital!  

I was the first patient seen on rounds the morning of June 4, 2016, and I was out the door with just enough time to run home and shower before having the be at the venue. My Mom’s wedding was my first Oscar worthy MS performance. Although mostly everyone there knew I had just come from the hospital it was not because they could tell by the way I looked. People with MS often hide their symptoms from healthy people because they fear lack of understanding. Or they don’t want to complain. I was no different on this day (and many others to follow). I was in such pain that I was still on narcotic pain pills, my legs weren’t steady enough to lift my feet off the floor when dancing, and the sensory overload from the DJ and music made me want to claw my eye balls out at times. But when I look back on that day those are not the feelings I remember. What I remember is the smile on my Mom’s face as she danced the first dance with her new husband. I remember the hilarious bridal party dance; which was basically all of my siblings and step siblings dancing weirdly around our parents like a modern Brady Bunch. On the inside my body was reeking havoc on my nervous system but on the outside I was having the time of my life enjoying my Mom’s wedding. I made it through the entire night, my husband and I were even some of the last to leave! Then of course I went home and slept for another two days. I was in no rush to get back to researching DMDs and begin choosing a treatment plan.

Hospital stay Round 2 taught me an important lesson: Everything is as good or as bad as you choose make it. While the initial news of having to be admitted to the hospital for my second relapse caused me to break down and loose my shit…the hospital stay itself was actually not that bad. Trust me, I would never go so far as to say that it was “enjoyable” or anything crazy like that. But it wasn’t terrible, because I made it not terrible. I was able to make it that way thanks to a lot of other awesome people ‘s and the ability to maintain my positive attitude. MS is terrible. It’s super terrible! But my LIFE with MS doesn’t have to be terrible. Sure, it will be awful at times, and I can’t always control what my body does anymore, but I could control my mind. Facing my MS diagnosis taught me that I had the power to make things “not terrible” just by changing the way I think. I could control the way I viewed my life with MS and the obstacles it brought me. I had made life with MS not terrible, at least for a few days. For now, that was enough. It gave me hope that one day it would be possible to make all my days with MS tolerable, or maybe even some days…terrific! 

 

Life is about learning. I love experiencing new things, but I often find that I learn the most from reflecting on my past experiences. Especially those that didn’t go so smoothly. I learn best, and fastest, from my mistakes. My second trip to the ER and subsequent hospital stay was no different. I knew what I was in for this time so I came prepared. I wasn’t in a state of panic wondering what was going on with my body. I knew what was happening, the main difference being this time it was happening more inside my brain than my spinal cord. While I was definitely scared and concerned that my body was going haywire again, I felt more frustrated and angry than anything else. As I packed my bags for the hospital I cursed my body for betraying me again; and so soon after we had just started getting along again! I thought that all the hard work I had put in during my recovery would be rewarded by my body; but nope! My body was deceiving me again and there was nothing I could do about it.

As I paced around my house, trying to find the things I needed to pack I was alternating between cursing and crying. This is another one of those moments in life forever ingrained in my memory in minute detail. It was just a week or so before that I was telling myself that I would be one of the lucky ones; no more relapses for me again any time soon! And it wasn’t like I was just blowing smoke up my own ass either; the doctors and the MRI images agreed with me! But it was during this time, packing for hospital admission Round 2, that I think I truly realized I had MS and what that meant for my future. I was starting to realize that my MS was aggressive, permanent and that I needed to figure out a way to deal with it ASAP before any more damage was done. Knowing I had a very difficult road ahead of me full of unpredictable twists and turns, I wanted to be ready for anything. However, I was attempting to pack for an adventure I was completely unprepared to take. My first relapse made me lose control of my body, this second relapse made me feel like I was losing control over my mind. MS was dictating my life and I was just along for the ride; or so it felt.

 

On the bright side, I finally found a feeling associated with my MS that I had experienced before  – feeling completely out of control – and therefore I knew how to attempt to address it! Phew! Anyone who has had any level of life experience has probably felt out of control at some point, right?!?! I know I have more than a few hundred times. Whenever this happens it’s usually a major life issue that no matter how hard I try, or think, or plan, or analyze in that moment there is no immediate solution I can come to that will make me feel like I have taken back the control. It’s a fact of life really. Like they say, “Rome wasn’t built in day.” The solutions to life’s major issues don’t appear over night. Since I couldn’t “take control” of the overarching issue of my MS I decided to do it on a smaller scale instead.

After my initial pity party of cursing, crying, and ranting around my house like a crazy person,  I took control by packing and preparing as well as I could for my hospital stay. All of a sudden I went from a wildly frantic emotional nutcase to a relatively calm human being making a packing list and putting together a few bags in less than a half hour. By the time I was in the car headed to the ER, I was joking that I felt like Piper from Orange Is the New Black being carted off to prison. Thankfully I only had to stay a few days and not a few years!

When I went to the ER the first time I brought my cell phone, a book I was halfway through reading, and my toothbrush. At that time I thought this WAS prepared and given what I had learned from my past experiences with emergency rooms (which was very little as I was a normal healthy 29 year old) I was anticipating likely waiting several hours and being sent home sometime that next day; I really only brought the toothbrush because we left the house at 7:00 p.m. and I wasn’t SOOO unrealistic that I thought I’d be home in time for bed. Never in a million years did I think I’d be there for days! So this time I actually DID come prepared. I spent way too many hours bored with my own thoughts that first time and I wasn’t going to do that again. Not after all the crazy thoughts I was having in just the short time I spent packing. Being alone with my “what if” and “what now” thoughts was not a place I wanted to stay very long. I arrived at the hospital prepared to keep myself occupied. Very occupied. 

When I checked in with the registration nurse she looked at me a little funny. Yes mam, I brought a large duffel bag, a carry on travel sized tote bag full of stuff AND a big purse that most people would probably consider a small suitcase. She chuckled a bit and told me not to worry, that the wait time today was not too long. I kind of laughed back to her. She thought I brought all that stuff just to entertain me while I waited?!? I wasn’t going to take the time to explain to her that this was not my first rodeo; I knew I wasn’t leaving this hospital for days. While the ER wait time may not be too long (which I should add that her and I have VERY different definitions of “too long”), I knew the ultimate determination of the ER doctor and attending neurologist would be to admit me for IV steroid treatments. The only thing I didn’t know was exactly how many days I’d be stuck there. But before I could get up to the neurology floor, I would have to sit in the ER waiting room anywhere from 1-8 hours. Not too long, right?!?

Inside my giant tote bag was my ER survival kit. You may want to take note as these items will come in handy the next time you are trapped in the ominous waiting room. Save yourself from making the ER newbie mistakes that I made! 

• Phone Charger: If you remember only one thing this would be it. Mostly because you can do a million things on your phone these days and everyone knows you bring your cell phone everywhere you go already!
• Tylenol: The amount of screaming children in the waiting room is insane. You will swear every child in your city/town got sick today and is here too.
• Headphones: After you pop your Tylenol you will want to put these on to drown out the screaming children and/or whining of the sick adults. Often the whining of the adults is more annoying. 
• Blanket: I swear hospitals don’t believe in heat. It’s like they hope you just leave before you freeze to death in the waiting room so they can cut down on patients. In the event you are lucky enough to land yourself in a hospital that does believe in heat, your blanket can be folded up to double as a pillow because no way in hell are you going to lay your face down on any surface in that waiting room. Gross! 
• Face Mask: The majority of people in the waiting room are there because they are sick AND contagious. This is where it pays to have an MS exacerbation be the reason you are there; because contrary to some idiotic myth MS is NOT contagious! People will look at you wearing a mask and think that YOU are infected but in reality it is THEIR germs you are afraid of. Extra Bonus: people will sit anywhere else but next to you, the mask wearer, and you will have plenty of room to yourself while everyone else is crowded on top of each other! (Note – this tactic also works great on airplanes!)
• Snacks: Being in the ER is annoying enough. Add to that being hangry and you (and the people around you) are in for a disaster of a time. Plus, being the one with snacks usually makes you the most popular person in the room! After several hours aren’t you going to be bored of checking your phone a million times or whatever other technology device you brought? Bust out your snacks and offer them to an interesting looking person next to you and viola insta-friend!! Nothing passes the time faster than meeting someone new and having interesting conversation. 
• A Positive Attitude: I have a plaque in my house that reads, “Happy is what we make it – always has been, always will be.” There is scientific research that supports the power of positive thinking. This doesn’t mean that you have to be positive all the time. No way, who in the hell can do that?!?! It means, to me to least, being able to find at least one positive in every situation; no matter how negative that situation might be. Or how small the positive is that you find in it. What could be positive about sitting in the ER that day? There was a pretty HUGE positive actually! It was the date – June 1st – the first day of my new health insurance with super awesome coverage! BEST DAY EVER!

After my four and half hour wait, a nurse finally called my name. As I packed up my ER survival kit and followed the nurse into an exam room she apologized to me for the long wait. The first time I was here, when the nurse said that to me I wanted to rip her face off and scream, “You’re sorry?!?! Really!?!? Like THAT does me any good! I just wasted six hours of my life sitting in that damn waiting room with those annoying sick people and all you can say is SORRY?!?!”

But not this time. This time I was prepared with my E.R. survival kit and I was taking control of my situation the best I could. Most importantly, I remained positive and it made all the difference. 

After receiving the news that my follow up MRI looked good I was ready to embrace happiness again. I was ready to get back to living my life with a renewed sense of appreciation for my body. Instead of waking up on a Monday morning dreading going to work, I took great joy in being able to get out of my bed, dress myself on my own, and take the train to my office in downtown Chicago. Everywhere I went I had a little more pep in my step because my body was finally deciding to cooperate with me again!

At this point, while I knew that my MS was not “gone”, it had quieted down considerably and I thought the worst of it was over. I had made it through! Sure, in the back of my head I knew that maybe, POSSIBLY, one day in the far distant future, it MIGHT happen again. I MIGHT have another relapse like the one I had just endured (or worse) but LOTS of people went YEARS before having another. I decided that I was going to be one of those people. I told myself that my MS would not “come back” for another five years at least, maybe ten if I was lucky. I mean come on, I’m only 29 years old! You may be thinking that these are the naive thoughts of a newly diagnosed warrior. While you would be partially correct, I was actually completely justified in thinking this way because NO ONE could tell me when my next relapse would happen or how bad the damage would be. Sound terribly frightening? Welcome to MS. It never truly “goes away” either; there are symptoms and damage you deal with every day. But for people with relapsing remitting MS, like me, there are periods of bad relapse and then everyday stuff in between.

 

I was trying to get back into the swing of things at work but after a few weeks back at my job full time I noticed I was starting to struggle. My job requires a lot of analytical thinking and multi-tasking. While I was still able to do everything that I used to a few months before, it was taking me much longer to accomplish any specific task. I felt like I was getting dumber, or at least less smart, as silly as that sounds. I felt like I had the attention span of a two year old. I had to really focus and concentrate to complete assignments that were once second nature to me.

 

Towards the end of the month I reached another turning point in my disease. I was having a conversation with my assistant explaining to her a project that I needed her to complete for me. When I finished explaining the instructions she just sat there looking at me like I was bananas or speaking French. She then proceeded to “clarify” what I meant by repeating back to me everything I had just said to her (almost verbatim). I was so confused. Again, I felt like I was getting dumber! Why did she just repeat what I said like she was CORRECTING me?? Turns out what I said and what I heard were the exact opposite of each other. Confused? I was too.

Turns out I gave her the exact opposite instructions of what I meant to say. And I didn’t even notice! Good thing she is such a phenomenal assistant she knew what I meant anyways! Over the course of the next few days I was saying the opposite thing quite a bit. I would say hot when I meant to say cold. I confused up and down. And then pretty soon I couldn’t even think of certain words to say. I would call my husband to tell him I was on my way home, and couldn’t remember what that thing that gets me home was…oh right! The train! Or I’d ask him if he had finished the…oh you know…that thing you do that gets your clothes clean…oh right! Laundry! The last straw that made me call my neuro was when I was having a conversation with a coworker (at 10 am on a Wednesday mind you) and about five minutes into our conversation, he asked me if I was drunk. Excuse me? Was I drunk? At work?!?!?

Thankfully I knew from  all the research I had done after my first relapse that this was a common complaint among people with MS. Because MS can affect a person’s ability to walk straight, see straight, or think straight, their actions may sometimes resemble those of a drunk person. But I was sitting in a chair right across the desk from him so how could I possibly appear drunk? I wasn’t even moving! When I demanded an explanation he told me that during our conversation I had slurred my words multiple times. WTF?!?!?!?! I most certainly DID NOT!! What a crazy accusation! If I was slurring my words I would most certainly be aware of it. I left his office frustrated and slightly convinced that perhaps my coworker was the one who was drunk! I would never come to work drunk, what a crazy ridiculous thought.

I told my assistant about my coworker’s accusation a little while later and again she gave me that weird “you’re bananas & speaking in French” look. She then finally told me that she noticed it earlier that day too but didn’t want to say anything. That’s when I knew it. I was not going to make it five years until my next relapse. 

I called my neurologist and after explaining to her the symptoms I was experiencing she confirmed what I feared. “Sounds like another relapse. You need to be admitted for another round of steroids.”  My response, “but my Mom is getting married in 3 days…” When I hung up the phone with her I lost my shit. I yelled, I cried, I cursed my MS to hell and back. Here we go again.