On Tuesday, January 27th, 2009, I flew back to New York to start the spring semester, arriving at 10 in the morning. I went back to my apartment with my roommate, Zoe, and passed out. I woke up later in the day, and noticed my vision was off, but thought it was because of the odd sleep schedule or 'jet-lag'--no big deal. I remember repeating to Zoe for the next 2 days that I felt my equilibrium was off, and that I couldn't see clearly. She responded with a giggle and said that I just looked out of it.
[ As I stand still, things are normal. It is when I walk, or when things are moving and I try to follow them with my eye that is gets out of focus and/or goes double. I had to blink a bunch to see things straight. I was walking as if I were drunk. I probably looked crazy. Student Center ladies even asked if I was okay/if i were stoned. Ha. ]
By Friday, the 30th, I went to the first day of my drawing class. My vision had progressively gotten worse. I left in the middle of the class, I just could not focus. Thankfully, Kathleen was in class with me and she skipped too. We went to eat. I ordered a sandwich from the deli. It's about 11:30 am and I notice I'm having difficulty chewing. I think it's the mozzarella or the bread- that its old and hard or something. I break up the sandwich and everything is hard to chew. Really weirded out, I just stop eating and carry on with my day.
[ This was the first sign of my mouth muscles dying. It felt as though my teeth hadn't chewed in years--like they had no strength to bite together and break up the food. ]
At 2:30, I go to the first tennis meeting of the semester, to discuss the future season. The meeting sucked. Hella sucked. My coach Amanda and I got into a little tiff. The meeting totally ruined my day and I just could not wait to get out there. After the meeting, a few of the girls and I walked down to the weight room to handle some business and this is when I can recall the extremity of my weakness. I felt as if I had no energy; Zoe kept repeating to me how out of it I looked.
At dinner time, I joined Karen, Greg, Shira, and DiCristo in the student center. (I hadn't eaten since the morning.) I ordered a wrap. I am half way through the first half (ha) and I can't chew again. My teeth are not chewing. They are not biting together. OK...WTF. I try to use my tongue to clear my teeth, and it is not moving. It will not jut forward. Panicked, I try to close my mouth, just bring my lips together--and they will not. They just are not going. My brain is telling it to go and nothing is happening. I'm freaking out, I start tearing up, describing to the table what is going on. Everyone tells me to calm down. I stop eating, and just take little, slow bites to get the food down. That night, I was supposed to join everyone in Brooklyn for Carno's going away party, but after what had just happened, Karen, Greg, and I elected to stay back. Zoe picks me up and we go home. We start to chat, I'm telling her about my day and my mouth starts acting up again. My tongue is not functioning. I have a lisp. I cannot control my lips. I freak out again, but I don't know what to do. I call my dad, he says if by morning nothing has changed, go to a hospital.
Saturday morning, I wake up at 11 am. I get out of bed, walk to the bathroom, and start to brush my teeth. My arm dies 20 seconds into brushing. It can't hold up, my arm is no longer moving up and down. I spit out, but my mouth is numb again and that was a struggle. I pour a bowl of cereal, try to eat the first bite and fail. My teeth, or lower jaw, had no feeling. There was no response. I call a cab, and I head to the hospital at about 12:30. I'm sitting by myself in the crowded waiting room at Winthrop University Hospital in Mineola. After an hour's wait, I describe to the young MD my symptoms. I take a CT scan. Everything is normal. He performs an eye exam. I can't see his fingers when they move right to left. I can read all the letters perfectly though, on the chart, while they are sill, right in front of me. Still have 15/20 vision. But my peripheral is completely shot. After 4.5 hours in the ER, he discharges me! He sends me off with a paper to follow up with a neurologist on Monday, and he scribbles down some letters of something he thinks it could be: miasthena gravis. I am able to walk out of there, and I walk down Franklin Ave to eat. I didn't realize it at the time, but it was quite a walk--ha I don't know how I pulled that off. As I'm walking, I have to cross the street, and cars are waiting so I try to pick up the pace to a jog and I almost fall on my face. My legs are wobbling, but somehow, I make it to the other side without falling. I walk into Wild Fig and go straight to the restroom. I struggle to stand from the seat. I try to button my jeans, and cannot. My arms have no strength to pull the button from one side to the other. I wait a few minutes, and real quickly button up. I was so close to asking the waitress to come in and help me too. Whew. I sit, order hummus, and can't eat the cucumber or pita bread. I can't even put my lips around the straw to drink water. I quit, take it all to-go. I call a cab, its a 50 minute wait, so I call Beth. She comes to the rescue and picks me up. Again, it was a struggle to get in her car because I couldn't lift my legs into the car once seated.
[ It felt as if my legs were strapped to massive weights and I just wasn't strong enough to lift them. But, at this time, I was still able to manage. ]
Alright, so we're back on campus. Beth, Karen, and I sit at the student center, and I kinda break down. I'm so scared, I have no idea what is happening to me. I still can't eat, I'm starving. The three of us are trying to solve this. Karen think its stress because of the awful day/meeting/back to school/etc. I just keep saying no, it can't be; there is something wrong with me, there is something in my brain. We look up what the guy from the hospital wrote down, and it sounds fiting. He spelled it wrong though, so we weren't positive. Whatever, its getting late, I want to sleep. Karen, the doll she is, sleeps over. Back in my apartment, I'm so weak. Getting on the bed, moving around, lifting my laptop is strenuous. We sleep. Something wakes me at 3 am. I try to move, but I can't. I can not move a single part of my body. My legs are completely numb. I can't lift my neck or back to sit up. I freak out, wake Karen, and she helps move me. AHHHH this is so scary, I'm like paralyzed!! I can't dress myself, everything is frozen it seems. Karen helps. We wake Zoe for a ride back to the hospital. I have to go up a flight of stairs to exit my apartment, and I can't climb them normally. I have to bring both feet to each step, very slowly. I can barely control my limbs; thank God Karen was there with me in bed, thank God Zoe was there. Thank you, thank you, so much.
It is technically Sunday morning at 4 am, and I'm back in the ER, the same place I left 12 hours ago. They ask me to do some basic exercises, like hold out my arms in front of me, and I can't. She holds them out, tells me to hold as she lets go, but my arms fall. Like dead weights. It is not crowded like before, so I get to go in quickly. We wait FOREVER. They take my blood, do some quick vital tests, and we continue to wait for hours. Zoe had to leave, Karen stayed still 9:30 am, and they still hadn't come back with any results. ah! This is so frustrating! Eventually, doctors arrive, and they run some tests and suspect it could be "Guillain-Barre" or "Myasthenia Gravis." I just want some answers at this point, I've been waiting so long. From there, they decide to perform a spinal tap. A spinal tap is said to be very painful, comparable to child birth. I was curled up into fetus position, held by a second doctor since I couldn't hold my body, and stuck in the lower back with 10 needles, one right after the other. The first 5 or 6 were for numbing, but they hurt. I just fell into a daze, and blocked out the rest of the sticks. It was over in like 6 minutes. I had to use the bathroom by now. Great. I had to use a wheelchair to be rolled 20 feet, once there, I couldn't sit or stand on my own, so the nurse had to help me. I couldn't lift my pants back up because my arms were so weak. This was so embarrassing. Well, thats the nurses job, so she helped me. I am taken to another part of the ER, where I dealt with THE rudest nurse during my stay. She was absolutely the coldest person I have ever met, and I hate her for the way she treated me. I'm too embarrassed to even type it out. She is the only nurse that I didn't check her name tag. But I know what she looks like, and I cannot wait to return to the hospital and spit in her face. Thank God I wasn't in that section for too long; I was transfered to 'trauma.' Karen rejoined me at this point, but I've lost track of the time. It has to be after 5 pm. Still, there is no word of what is wrong with me, just speculations. I am then moved to Neuro-ICU. I call my parents and tell them it's pretty serious at this point, and they should fly up. This night and the next are very hazy, I am not quite sure what happened. I remember they put a catheter in me. That is an interesting feeling. I remember Beth and Amanda joined Karen, and they visited for a little. :) That was nice. I also remember watching the last 5 minutes of the Superbowl, but that's all. Shout out to my baby, Polamalu.
Monday, February 2nd, Zoe and my coach, Amanda stopped in for a morning visit. HA. I love you, Zoe Lola. Amanda thinks this sprouted from my ovarian cyst rupture back in October. hahahaha. Oh! I forgot to say the best part! I got my period! Icing on the freaking cake, right? Oh, no, it gets better. (sorry, boys.) Hospitals don't allow tampons. Seriously, how fantastic: I get my period out of NOWHERE--AND I'm subjected to use pads. This is a nightmare. So...anyway.... my nurses from here on out are so awesome. I'm treated really really well. Just had to say. (I'm hooked up to 3 different IVs, and 2 heart machines by the way.) Different types of doctors swing by here and there to check on me, including a neurologist, and a speech therapist. I'm unable to feed myself, and I still can't chew, so a nurse has to feed me yogurt. I feel so weak and vulnerable and I just cry. My dad finally arrives at the hospital (flying from Florida) at 4 pm. What a guy, walks in with flowers. I start to cry the second I see him, and he won't let me. Stop crying, you have to be strong. The rest of the night is a blur.
It is Tuesday, and I have an excruciating migraine. The most painful pounding I've ever felt in my head. I can't lift my head without feeling like I'm going to explode. Today, tests have to be run to complete a diagnosis. Blood is drawn from me like crazy. I'm so weak, I'm so hungry. A new neurologist comes in wheeling this contraption next to my bed. He hooks up some wires to my arm and hand, which is connected to a machine which is connected to a giant computer. He tells me this is shock treatment. It is an uncomfortable feeling, but bearable. OK, let's do it. I am shocked once every 30 seconds for 2 minutes, then 10 times in a row 3 times. It IS a weird feeling, but I didn't hate it lol. I'm pleased to feeling the shocks, to see my arm being jolted. A good sign, right? Wrong. The doctor doesn't look happy. He then connects more wires to my neck and shoulder. This may hurt a little more he says. Show me what you got....OK same thing, except my entire body is being jolted. It looks like I'm in the electric chair. It was uncomfortable but oddly, I didn't mind haha. He looks even more concerned. He tells me he would normally connect more wires to my face and head, but the 2 previous tests were so definite, he didn't need to. Normally, the shocks wouldn't shock someone as they did me. This proved the suspicions. The diagnosis: I have a class 4/5 case of MYASTHENIA GRAVIS. I start to cry, but the badass Bulgarian neurologist wipes my tears and tells me I'll be fine. He wheels the machine away and I wait for visiting hours to see my dad. Throughout the morning, doctors come and examine my condition and the extremity. I feel like a science project, the way the look at me and talk amongst themselves about me, like I can't hear them. My brain is still working!! I'm not retarded. I just can't move. My headache is worsening. My vision is so double now, almost all of the time. That night is the worst night. I was in so much pain, they kept giving me shots of morphine and codeine--nothing is working. I am in and out sleep, constantly being awakened by the pain. At 6 am, I feel a rush of nausea and the nurse brings a bucket and I puke. I puke for 2 hours. As if puking isn't a nightmare in itself, it was extremely difficult because I could not hold up my neck, so I was vomiting sideways. It was awful.
[ They explained myasthenia gravis to me. For all of you that don't know, in simple terms: it is a neuromuscular disorder. It means that the juncture between my nerve and muscle is being bombarded by antibodies that block the message. My brain sends the message, through the nerve, and then it fails to be received by the muscle because of the antibodies. So, that is why my muscles failed me. 2 out of a million people are said to get this, I don't know how accurate that is.The first to go are the facial muscles. Eyes, mouth, etc. So, what has to be done: I have to take one pill 4x a day for the rest of my life to produce enzymes to fight the antibodies so the message can be sent and received. I'm also taking steroids for a while to help restore my strength. Also, in about 6 months, I'm going to have surgery to have my thymus removed. Usually, this gland disappears around 18, but mine never did. There is a chance with this removal that all my symptoms will go away, but it is very slim. However, there is no harm that can come from the procedure, so it is worth a shot I think. Plus, I'll get a badass scar on my chest. ]
Wednesday, the 4th, my headache has not subsided. The doctors start to suspect that it may be something else rather than just a migraine. Finally. My main neurologist comes in and tells me she wants to have a "blood patch" done to me. That will solve the problem, the pain will go away. HELL YA, do it now. No, gotta wait till morning because I'm on too much medication for the procedure, my system has to clear out. 24 more hours I have to experience this agony. The headache was due to a leakage from the spinal tap from 3 days ago. My spine apparently still had some holes in it, and it was leaking fluids which was causing my head to feel that way, especially when I sat up. I had never head of a blood patch, so I had to no idea what I was in for, so I didn't think about it. Things are still hazy, I don't remember who came when, but I want to thank my friends who came by. Ferrari, Beth, Tega, Karen, Carno, Craig...those I remember came up to this point. That really meant a lot, I love you!! I also want to say that I overcame a lot of my personal issues. I'm a very private person, especially when it comes to my body. But, being in hospital, under such conditions, I really had to let go. Haha, so many nurses saw me and had to do some crazy stuff to me and my body, including bathe me. And so, I'm not so shy anymore I think. hahahaha.......alllllrightyyyyy thennnnnnnnn
Thursday, 7:30 am, I am transferred to "mini-surgery" to have the blood patch done. I'm in so much pain STILL, i cannot wait to have this done. They tell me the precautions, the dangers, the aftereffects, etc, I don't care. I am so weak this morning, I'm a dead weight head to toe. I can't hold my head up, it just falls. Odd feeling. I want to look up, and I can't. Alright so the blood patch. Keep in mind, my arms and hands are covered with different IVs and old holes from blood being taken out. They are very sore. The nurse has to stick my arm with a larger than normal needle to collect blood. I'm a hard stick, also. So it takes every nurse like 3 tries to actually hit a vein. What luck, right? Ouch..... another dude has to hold me up since I cannot. Then the surgeon is sticking my back with anesthesia and it hurts so freaking badly. I have no idea what the hell is going on, I'm blacking out. He then transfers the blood from my arm into my back, I guess to close the leaking holes...I am going completely limp and numb, I'm crying from the pain, I'm screaming and cursing and wishing death at this point. That was the most awful, most painful thing of my entire life. I never want to do that again. Then I had to lay there and listen to the next patient. An old lady, crying, screaming she wants to die. That just broke my heart, and we held hands and then they wheeled me away. My back was so sore, I had so much pressure in my abdomen and lower back. I pass out, back in the ICU. My dad comes in the afternoon, and he stays for the visiting hours, every time. He is the best. When I wake though, happy day- My headache is gone! I can be sat up and not want to die! I can attempt physical therapy now! Things are back on track.... I'm still not eating, I'm dreaming about food, but I can't chew still. I can't see straight. Things aren't improving yet, really. My physical therapist moves me from the bed to a chair, where I try to do some exercises. I still can't hold my arms out. My legs are still completely immobile. Back to bed, we'll try tomorrow.
Friday. I feel a lot better, I'm not in pain. I feel a nip stronger. They transfer me out of ICU, to a room with just one other patient. Maria, is my roommate. She is a 52 year old woman from El Salvador who had a stroke and has been in the hospital for a week now. She is really loud and crazy, you all know who came to visit. She would tell me about her childhood and her 3 failed marriages. And then she would shit herself and scream for help at the top of her lungs at 2 am; and tell me how cute she thought my dad was and if he were single....My mom flies in the afternoon. I expect her to burst into tears immediately. That would be her typical nature, but she doesn't. She is smiling, and continues to be chipper for the remainder of her stay. In fact! My dad cried around this time! One of the only times I've ever seen him cry. Whoa, what really shocked me. Anyway, I had many visitors now, including Posh and the others from before, also Lauren M, Eric, Brittany, Jess, Mike, Chris, my Persian professor!, Berto, Fran, Dave, Sam, and Zoe and her french friend, also my dad's friend. It was a party at all times. Thank you guys for all the support. I can't tell you how much you helped. Thanks for the ipod Posh, you helped silence my nights from Maria. Thanks to everyone who called too! I freaking love all of you. Anyway, its been like 6 days in the hospital. My hair needed a wash before I got there, so at this time, you can only imagine. I mean....I dug the style, but the texture and smell was horrendous hahaha. Twas awesome. It only got worse too. I was also dying because I wasn't able to brush my teeth and I'm a psycho about that normally, so that was brutal. Ugh, I cringe thinking about it now!
I am able to eat a little now, not much, but soft foods. I am slowly getting not as weak. I am doing therapy, getting my arms up a little higher, and lasting a couple milliseconds longer. Progress!
Saturday, the 7th. My 7th day. I'm so bored! I'm getting so annoyed with all the IVs all over me, with the freakin catheter in me, I just want to walk to the bathroom myself! Hallelujah, they take it out. I WALK TO THE BATHROOM. It isn't easy, I need someone to walk with me, but I can do it. awesome. I continue with therapy, my "trunk" (back, hips, shoulders, thighs) are the weakest, because thats how it goes. But I am able to move more. I am happy. My mom brushes my teeth!!!!! I feel semi-clean!!!!! My hair is atrocious still though. I love it, secretly. I want to shower though. Another fun-filled afternoon with tons of friends visiting, and then another crazy night with Maria. ( Oh, they tell me Monday I will be discharged, so I am counting down the hours now.)
Sunday. I can walk to the bathroom on my own. I can stand, and I can walk the halls. I gave standing hugs. I am mobile again! But, not for long. I still can't lift my arms all the way up and do certain things on my own. But its ok! One more day!!!!!
Monday arrives. I am so freaking ready to leave. I am going on my 9th day. I'm dirty and smelly and bored and antsy. But of course, nothing wants to flow smoothly. My dad and I wait in my room the ENTIRE day. They tell us at 4 pm that it will be till 6. 6 comes and still nothing, I am so pissed!! Finally, my doctor comes in, tests me one last time, reminds me how weak I really am, instructs me on how to take my medicine, what I can't do, etc. He likes to scare me. Whatever. We leave and head straight for the mall where I go to the hair salon and get my hair washed 3x and blown out. Then, we travel all over long island to find a pharmacy that carries my obscure medicine because without, i will go back to what i started!! Finally we get it, I go to Hofstra at 9 pm, and am greeted by all my wonderful awesome sweet sexy friends in the student center. I felt so special. YAY i love you alllll thank youuuuuu. Then I go home.
Tuesday, the 10th. I wake up, groggy, shower, and dress myself. That took way longer than usual, because I still can't do certain motions. But i did it, no matter how long it took! I pack, and my dad and I fly back to Ft. Lauderdale, arriving at 7:30 pm. I eat normal, delicious persian food. YUM.
>> I took the semester off from school. I am in Florida to regain strength and be with my family, so I'm not alone and in case something goes wrong. I am going to be resting A LOT. minimal amounts of movement. I am obviously not playing tennis at the moment, and not for a while. But, even though I'm told I can't, I know I'll be back out there, eventually. Even if it takes years. I hope to return to NY, to Hofstra, and get a job, and see my friends, and be normal again in a month. Only time will tell though. As for now, I'm just gona veg out. Couch Potato is my new occupation.
I want to say thank you again for everyone's support. You all are so extraordinary and I love you all so much. I'm so grateful to have you in my life.
I'm a warrior, I will persevere.
