MS4000 (over 4000 words that is...)

[lynspin]

Sandpaper and Potato Flakes:
My Experiences Living with Multiple Sclerosis

.....Even as I type the words “multiple sclerosis” my eyes tear up. You would think after living with the disease for more than a year I would be able to deal with six syllables. Still, the words affect me as if I was hearing them for the first time.
.....I have never sat down and documented my experiences with the disease after my diagnosis. I don’t know if it’s because I’m scared of reliving the terror I went through not so long ago or if it’s because I’m afraid I won’t remember the important details. See, with multiple sclerosis (I’ve learned to call it by it’s colloquial and cool abbreviation “MS”) there are lots of things that affect me on a day-to-day basis that I find out about only after I experience them. It’s a disease which is pretty much unknown. Unknown to how it’s caused, unknown to why it affects the body so randomly, and scarily enough, unknown to how it can be cured.
.....Here come the tears again. All you have to do is mention to me “THERE IS NO CURE” and I start bawling like a child. I presume that people who are emotionally stronger would look at that with bright smiles on their faces and say something like, “Oh! Not yet, but I’m sure there will be a cure soon! I know it”
.....Of course a little bit of optimism never hurt anyone, but pessimism is something you learn to live with when you’re diagnosed with the disease. I’m not saying I sit in my room everyday and cry while moaning a Nancy Kerrigan-like, “Why me?” but there are certainly the times, (like when I type out the m-u-l-t-see, I can’t even do it) when a few tears remind me of the person I once was, and a few laughs bring me back to the person I am today. Simply, I am a twenty-two year old Boston University senior majoring in journalism who just happens to be living with an incurable disease. This is my story.
.....I had always heard that the junior year of college was supposed to be the most tumultuous year of all. Apparently it ranks up there with your junior year of high school: recommendation letters and essays to get into college were now replaced with recommendation letters and essay to acquire a job. Though I have always been an A/B student, I still wasn’t looking forward to the all-nighters I had heard about from previous college juniors: “You’re going to be up all night typing a paper which YOU think is wonderful, but your professor is going to say is total shit. That’s just the way junior year is.”
.... I figured large quantities of coffee would be my best friend and I would do my my best to avoid my professors glancing at my papers with the description of shit on their minds.
.....After Christmas break a lot changed in my life. I broke up with my boyfriend and decided I would be better equipped to handle all of my schoolwork if I was sans significant other. He didn’t agree. I chalked it up starting a life where I did not play computer games at three o’clock in the morning, but did research at the library and started my assignments more than a week or so before they were due.
.....Like any other college student, these resolutions lasted approximately two days before reality television took over and decided Survivor was more worthy of our time than final papers.
......While procrastination had always been a part of my studying life, getting colds and sore throats had not. So, in late February, when I began to feel sick, I chalked it up to the common cold or perhaps the flu. I couldn’t have been more wrong.
.....On February 14, 2002, I woke up in the morning and couldn’t get myself out of bed. The room was spinning and I felt like I was going to throw-up at any second. Questions ran through my mind: Alcohol? No, I don’t drink. Food poisoning? No, I only had some chicken soup yesterday and I highly doubted Campell’s had ever caused anyone to suffer from nausea. The flu? While it would be possible if any of my roommates or students on my floor in my dorm were suffering, I knew of no one who actually was. I figured this was my sign to not go to class on that day and to just spend my time lying in bed and using the hours to catch up on much needed sleep.
.....The “much needed sleep” lasted for five days.
.....For five days I stayed in bed, only crawling on the floor in order to get to the bathroom. My roommates would go to the dining hall to get their meals and sneak me some bread or saltines when they returned. I would call my mother at home and just cry to her: “Why do I feel like this, what’s wrong with me?”
......She would tell me to visit the University infirmary, but the thought of spending a few nights in a fake hospital room didn’t excite me at all. All I wanted to do was sleep, and if that meant being able to sleep in my own bed with my stuffed bunny, then I was going to do so.
.....Until of course, the evening of February 19th came around. That night around nine o’clock I couldn’t stop shaking. I was so dizzy I didn’t want to open my eyes for fear I would get sick. I went into the bathroom in my suite shared by myself and two other roommates and kneeled down in front of the toilet, thinking I was going to throw up. While my stomach was extremely queasy, my legs and arms were as well.
.....I couldn’t get up from my spot on the tiled floor no matter how hard I tried.
......I guess in my state I had locked the door to the bathroom and was still frozen on the floor when my roommates knocked and yelled to offer their help.
......I couldn’t answer.
....They called my mother and though she was in New Jersey five hours away, she knew what had to be done.
......The roommates called 911 and I heard the sirens soon after.
.....I remember the EMT technicians beating down the bathroom door and lifting me into a wheelchair before taking me to the ground floor on the elevator and getting me into the ambulance on Beacon Street. I didn’t even look to see if people were watching me, I was too dizzy and I wouldn’t notice them if they did.
.....The ambulance ride seemed like it lasted for hours. I remember getting sick and looking around the ambulance hoping my mother or a friend would miraculously appear next to me.
.....No such luck.
.....Soon I was wheeled into Beth Israel Deaconess Medical Center’s emergency room. The whole ordeal was a game of give and take: nurses and doctors would come to take my blood, take my temperature, and take me for an MRI. I just wish someone would give me an answer.
......Why was I sitting in a dark room with unknown people coming in and asking me questions? No, I do not drink alcohol. No, I do not take drugs. No, I do not feel depressed. I kept telling them nothing out of the ordinary happened to me, I was dizzy for a few days and I just want to find out why.
.....I stayed in the hospital until the 24th. At this time the doctors just thought I was exhausted, needed to eat better, and needed to get enough sleep. I was just glad to be feeling a bit better.
.....Unfortunately for me, though, I was only better until April.
.....On April 2nd I saw that my glasses were foggy, which was nothing new for me since I hardly took time out of my day to clean my glasses with Martha Stewart expertise. I was scared, though, when I took my glasses off and the foggy, fuzzy view stayed in my right eye. On April 3rd the fogginess became darker and by April 5th I only saw black. April 6th brought me to my favorite vacation spot, Beth Israel.
......This time, however, my mother accompanied me. Say what you will about mother/daughter relationships in your early twenties, but I couldn’t think of a better person to be with me when I was dealing with the unknown. My mother was there to brush my hair (and my teeth) and describe to me what was going on in our favorite soap opera, All My Children. She held my hand when I woke up in the morning and hugged me tightly when I drifted off to sleep.
.....The give and take routine was back and this time I had something new to be taken: spinal fluid. Knowing only that a spinal tap was a fake band documentary, I wasn’t scared, but merely interested. Maybe this test would finally give me an answer to what was going on with my eye and my dizziness. As the long needle entered my spine I didn’t feel pain, but actually hope. A roadblock, though, met the hope when the technician giving the Lumbar Puncture started to speak haphazardly:
....."The doctor is ordering this test because it’s standard procedure in Multiple Sclerosis.”"
.....My heart stopped.
.....“Multiple Sclerosis?” my mother questioned. My throat closed up and I looked at her with a glaze of tears in my eyes. “No one mentioned anything about that to us. Could you please ask the doctor to come in?”
.....The technician looked like a young child who had ruined a surprise party. I didn’t know what to think; I didn’t know what to feel, hell, I didn’t even know what Multiple Sclerosis meant. I knew that the Mickey Mouse Club actress Annette Funicello had it, but wasn’t she old? Isn’t MS something old people get? Muscular Dystrophy went through my mind as well. Weren’t Jerry’s Kids the same type of people? I guess MS wasn’t a disease people knew about because it wasn’t “popular.” With the exception of Funicello, no one famous had MS, so why should anyone know about it?
.....I didn’t stop crying until my mother got on her cell phone and called my father back home to tell him what had just happened. Things were sinking in, and I knew my life was going to be different from this point on. Doctors came and went that day, and told me that my symptoms of being hit with two separate episodes, or “flares,” of symptoms were signs of MS. They showed me the MRI’s complete with blotchy white patches on my brain. Those were the areas that were hit by the MS. Of course, I had millions of questions about when my sight would reappear and when I would be sick again. Sadly, I quickly learned that MS will never tell you when it’s going to hit you with a new symptom, how long the symptom will last, or even if it would ever go away.
.....I started up my crying.
......When I was released from the hospital on April 10th I returned to classes and got ready for the summer I would be spending at home. I wanted to enjoy time with my family, swim in my backyard pool, and forget about all of the pain that had started in Boston. I started seeing Dr. Donahue, a neurologist in New Jersey. Dr. Donahue who made me feel at ease not only because he was compassionate and knowledgeable about my disease, but also because he uncannily resembled the late Saturday Night Live comic Chris Farley. (Say what you will, but anyone who reminds you of the guy who “lives in a van down by the river” can’t make you unhappy; it’s impossible.) Dr. Donahue tested my eyesight (the blackness is gone, but my right eye only sees in gray tones now and about half its vision is lost) and looked over the MRI’s from Boston once again.
......“Have you thought about which therapy you’re going to start?”
......I hadn’t. Therapy for MS involves injections daily, every other day, or weekly under the skin or into the muscle. The therapies are not vaccines or cures for the disease (I was told often) but should stop episodes from happening as frequently.
.....After viewing tapes about the different therapies, my family and I decided on Copaxone, a synthetic drug that is injected daily right under the skin. Copaxone is supposed to help myelin (the fatty tissue surrounding nerves) from deteriorating and thus furthering the symptoms of MS.
.....No one is happy with needles, but after being in a hospital and having nurses take my blood everyday I was pretty much used to being poked and prodded. A nurse came to my house and taught me how to administer the injections showing me how to put an ice pack on the injection site, swabbing it with iodine, using the auto-injector (a helpful tool which hides the needle and shoots it into skin like a toy gun so the squeamish can administer injections) on my thigh, stomach, upper arm, or hip and switching the areas everyday, and using frozen vegetables after the injection to keep swelling and bruising down.
.....The first few injections were painful. I got red lumps at the injection sites and I had to stop using my upper arm as a site because it hurt too much. I was actually crying when I had to give myself the shot. This was supposed to be helping me? If this was hope for feeling better then I was scared of what would make me feel worse.
.....A few bags of frozen corn and a few Tylenols later, and I became an injection queen. I was feeling good about administering the shots, but I wondered if that was actually me, or if it was the drugs I had been prescribed to make me feel “normal:” I had drugs to make me sleep normally, act normally, and even walk normally. I was told that MS leads to depression in people (gee, who would’ve known that an incurable life-long disease would make you feel sad? Ha ha) and was put on anti-depressants. MS also leads to sleep deprivation so I was put on Valium to help calm me down. Along with being calm and happy, I needed to take drugs to keep me from being dizzy. All in all, I was a human medicine cabinet. My pill case went from a few daily vitamins to a plethora of prescriptions. With every new drug I giggled at the warning labels (apparently drugs that make you sleepy should not be used when operating heavy machinery. Who knew?) And I was pleasantly surprised I was giggling.
.....It had been quite a long time.
.....That summer I swam almost everyday and enjoyed gardening around the backyard with my mother and father. Supposedly patients with MS are supposed to have problems with direct exposure to the sun and heat exhaustion. Although I had never been a fan of heat in the past, I didn’t notice any new problems with my body when I spent some time in the sun. I didn’t try to tan because I didn’t want to invite any problems in. After being “symptom free” since March I thought it best not to tempt fate by sunning myself or running for miles in ninety degree hot and humid weather (swimming in crystal-clear water and sipping on pink lemonade was a lot more enjoyable anyway.) I was happy and was enjoying my life. I figured I could live with a few pills, a gray eye, and a small injection as long as I was feeling okay in the big picture.
.....Still, while I was feeling pretty normal, I knew I wasn’t acting normal. My friends knew it too. I didn’t want to hang out with any of them because I get fatigued easily and it’s not fun going to a late night movie and having to leave at the same time as toddlers just because you need a nap. I never stopped to ask myself if my friends would actually care, I just didn’t want to be viewed as a burden and I didn’t give them a chance to even think about it. It was easier just to avoid people in general. I knew it wasn’t the smartest thing to do but I didn’t want anyone else to deal with my MS if they didn’t have to.
.....A few friends kept calling and e-mailing me to keep up with what was going on. I always had my answering machine ready to pick up, or turned off my cell so I wouldn’t have to talk to anyone. I enjoyed hearing from people but it was hard realizing that while they were enjoying trips to far off places and staying out until the wee hours of the morning I was going to bed at ten o’clock almost every night, spending my days working at my part-time job I’d had since high school, or reading about MS on the Internet. (Side note: never search around the Internet for facts and personal accounts of disease. You’ll often get yourself depressed and sad more than hopeful and happy.) Also, I didn’t want to talk to my friends because while they had stories about what they did the night before I would only have stories about what doctor I visited that day. For a twenty-one year old I wished I could live vicariously through the parties and the trips of my friends, but I only took in what was going on in my own life, even though it was often saddening.
......I realize now that shutting people out wasn’t smart at all. My friends talked to me after the summer and said they would never consider me a problem or a burden: “We are your friends so we are here for you no matter what!”
.....I know people are my friends because of who I am, not what I have, but since I am the one living with the disease I never know if they would feel different if they had to live with it as well. None of the books or websites ever mentions disease free friends as a symptom.
.....Though the summer was going well and my body wasn’t experiencing any episodes, it was experiencing something I had dreaded: weight gain. Because of the steroids I had been on to fight the inflammation with prior episodes, and to hopefully keep future episodes away, I had also gained some weight. To anyone else this would probably be a small price to pay for “flare freedom” but for me it was almost worse.
.....From my freshman year at college to the winter prior to my diagnosis I was on the Atkins diet which was a low-carbohydrate way of eating. I eliminated anything that added up to more than twenty carbs a day, which meant no bread, no sugar, no milk, no pasta, no cereal or anything that was low fat. I learned to like eggs, cheese, chicken, and beef and became a human carbohydrate counter. I knew how many pieces of tomato I was allowed on my salad and how much whipped cream I could eat of the can without destroying my progress. In total, I lost about sixty pounds and felt fabulous. I was no longer an overweight girl, but a cute and sassy female. I had the boyfriend, I had the clothes, I had the joy of going out with friends, but when the steroids kicked in, I slowly lost all that. (It didn’t help I had turned back to pasta and its friends for comfort over the summer but I denied I had anything to do with my weight’s demise.)
.....Still, I was happy I wasn’t dealing with episodes anymore. I looked at the start of my senior year as a new beginning for life. I was excited about living in an apartment with my three friends and enjoying my senior year. Even things like buying my own groceries and applying for jobs were thrilling to me. I stopped seeing my life as something fitting in between flares and finally as something with promise.
.....Fast forward to December 8, 2002. If a little bit of weight is something to embarrass a young woman, than a facial droop and a pulsating right eye is something to make her go insane. I knew the drill. My friend took me to the hospital and I went through the routine of waiting room to ER to flimsy hospital gown on the neurology floor. I was released on the tenth and had a medical home service come to my apartment for three days to administer my IV full of solumedrol, which is just a fancy word for liquid steroids. I would sit on the couch for an hour and fill out paperwork for the nurse specifying I still didn’t drink, do drugs, or think about killing myself. (Though I was thinking of killing the IV. The solution warmed my body as if it was on fire and the taste in my mouth was equal to the metallic taste of chewing on pennies.) My mother came up to school to bring me home for the holidays, and just as quickly as the droop came on, it left. By New Year’s Eve, things were back to normal.
.....I came back to my apartment and was ready for my final semester at BU. My classes were interesting and although the weather was bitter, my spirits were not. When my right leg was attacked by a sensation of pins and needles on January 31, 2003 I quickly called my neurologist in Boston and she swiftly sent the home therapy nurses over. By the fifth of February the tingling was gone, and my mother joked that it was because her birthday is that day and she sent me her extra birthday wishes.
.....On February 19, 2003 I experienced something I had never felt before. While my previous MS flares had only hit one side of my body and not the other, this new flare of numbness and the pin and needle sensation hit my left foot as well as my right. As the days went on, the feelings crept up my feet to my legs, to my stomach, and finally right below my chest. My friends and family joked with me about how I could bump into things and not even feel them. After talking with my doctor in Boston, though, she was not in the mood for joking:
.....“This episode happened too soon after your last one. I’m not going to be able to put you on the IV. We’ll try an oral steroid taper.” She convinced me this would be just as good as the IV therapy but would probably be a bit slower. I didn’t care as much as I thought I would. Though it’s a bit unnerving to have numb legs, it’s still better than being droopy, dizzy, and blind.
.....I called my mother and told her all about my legs:
.....“You can call me Sandy Legs!” I laughed. “I feel like I’m walking on sandpaper and potato flakes, cause that’s the feeling I always have.”
.....What started out as something new just became something I have become accustomed to. Now, nearing the end of April, the numbness and tingling in my lower body has gone back to being just in my feet. I had to use a cane to help me balance myself when the problems with my legs started, but because I got a “pimped out” decorated cane (as my friends call it) I looked at my flare as a chance to try out my fashion sense.
.....My MS has become something I am used to. Things I have to do in order to keep myself healthy are things normal people should do, like take vitamins and calcium, sleep at least eight hours a night, avoid stress and rest and relax from time to time. While getting upset is easy to do at times, I have to keep things in perspective: will freaking out over a lost sock really be worth risking another episode for? Will getting back into my old jeans be worth crying about if I’m maintaining my weight with Atkins and exercise while maintaining my health with steroids? Skipping out on a party on a Saturday night in order to sleep in on Sunday morning is more of a treat than chocolate will ever be.
.....Even though there is no cure for Multiple Sclerosis, I am coming to terms with how it affects my life. Is my life different than how it was a year ago? Of course, but in a way it is better. I appreciate the small things that make my life worth living. I am thankful for every day I have being healthy. And hen I walk across that stage to get my diploma from BU at the end of May it will not only be a sign of my accomplishments in college, but of my accomplishments in life. If I can get through 365 injections a year, I know I can get through anything else life sends my way. I’m no Mary Tyler Moore, but I have hope, “I’m gonna make it after all.”

The story is just a rough draft, and I have some things to add in it, but this is me, nothing hidden, nothing avoided.