This is my life-
For the most part as a fifteen year old girl your highest and most important priority is looking cute and being popular. Your trials are things like being late for curfew, getting in trouble for hanging out with boys, worrying about which boy is going to be your next boyfriend, or having a bad hair day. You have so much to look forward to and nothing seems to get in the way of your future plans other than the occasional parental guidance argument. So health doesn’t really seem to cross the minds of many teenagers, let alone ones that could care less about what they look like or how others view them. For the normal teenager turning sixteen is one of the best moments of their life, because now they can get their license and have at least some freedom. But for me, that wasn’t quite the case. While my friends were now learning how to drive and get out and enjoy their crazy lives and get into trouble, I was learning how to live a different kind of life with my newly found friend called Multiple Sclerosis. It all started a few months into my 10th grade year. As a little sophomore I had no idea what was about to hit me and my family. My case was very similar to many people that have been diagnosed. It started with a weird eye problem. I started having double vision and after a few hours I couldn’t move my right eye at all. So having the amazing mother that I do, she found one of the best eye doctors in Utah (a neuro-opthalmologist) and took me to him. After running several tests he told us it was a sixth nerve palsy but could find NOTHING indicating why I had gotten it. This my friends, was the beginning of my adventure. I like to call it the rollercoaster of hell. The eye doctor was concerned that I had something more going on so he sent me to get an MRI done at McKay Dee Hospital. At this point in my life I had never had even so much as an eye test let alone a freaking MRI. So you can see why I began to get nervous and wish that I hadn’t said anything about my eye. After spending an hour in the waiting room with the most annoying child in the world sitting next to me, it was my turn. I was terrified. For those of you that haven’t had an MRI the best way I can describe it is basically like laying in a tube with your nose inches from the ceiling and your neck secured so that you can’t move your head, while lying next to an ambulance while the sirens are going off. I have no idea why, but the MRI machines make a total of about six different insanely loud noises. I can’t say it was the most amazing two hours of my life, but I was happy to get to go home afterwards. After doing quite a bit of research my eye doctor recommended that I go as soon as possible to Primary Children’s Medical Center and see the Neurologist there. He said the MRI results were not conclusive enough to tell me what had happened to cause the palsy but mentioned to my mom that one possibility could be MS. He didn’t think that could be the cause but didn’t want to rule it out entirely. We went right away to the Primary Children’s ER. I was examined and given a series of simple tests on my vision and balance by the ER Doctor, then had to answer the same questions and perform the same tasks for two Doctors from the Neurology unit there. One of the Doctors there told us that she thought the palsy might be caused by there being too much pressure around my optic nerve/brain caused by my spinal fluid. She also said it could be Multiple Sclerosis. She called it a sixth nerve palsy. She decided that the best thing to do at that point would to be to get a spinal tap to measure the proteins in my spinal fluid and to regulate the pressure making sure it wasn’t too high. At that point I was overwhelmed to the point of no return. They scheduled the procedure and before I had time to really understand fully what was happening I was in a procedure room with my mom for the spinal tap. This is a procedure where they use a long needle to puncture your spine and remove some of the fluid. After a lot of complications with my hidden veins not wanting the IV and after the worst procedure of my life I finally got to rest. Riding home from the hospital was a joke because I had to remain lying down as much as possible and we live 20 to 30 minutes from the hospital. A few days later I started to get massive headaches. I couldn’t stand to move it was so painful!! My mom called the hospital and they said that the spot where they punctured my spine was most likely leaking spinal fluid and hadn’t healed properly. They advised strict bed rest because the gravity of standing made it leak more and it was less likely it would heal on its own. I was actually told by a Doctor to drink Caffeine! During this time I had to travel up to the Moran Eye Center to see another specialist named Judith Warner about my sixth nerve palsy. Traveling to the hospital and sitting in the waiting room was a miserable experience. After going through about every eye test possible I finally got to see Dr. Warner who also did a few exams. She told me that my eye was inflamed but healthy and she would like a follow up visit in a week or so to allow my nerve time to respond to the Spinal Tap. My headaches didn’t go away so I had to go back to Primary Children’s about a week after the Spinal Tap to get a procedure done called a Spinal Patch. They basically draw blood you’re your arm and inject it into your back near the puncture site. It then clots sealing the leak. It should have been an easy quick in and out sort of thing, but once again they couldn’t find a vein that would bleed enough and finally stabbed the top of my hand. That hurt like crazy, but at least it bled enough for them to finish the procedure. Shortly after that my eye started working again and slowly but surely it went back to normal. Dr. Warner said it could be MS but if she were forced to make a diagnosis it would be that it was 90% or higher probability that it wasn’t. The headaches went away almost immediately as well. So case closed! We thought we got off lucky. The final conclusion was that I had too much spinal fluid putting pressure on my brain causing my nerve to inflame. Sounds legit right? Well just to make sure that was all it was the ophthalmologist decided that it would be best if I came back six months later for a follow-up MRI to make sure all was well. We didn’t remember to schedule and time stretched out to almost a year since my palsy had first occurred. Dr. Warner was insistent that we get a follow up MRI to be sure things were normal and her office helped us get it scheduled. This time I got to do it at Primary Children’s Hospital, which was a much better experience. It still made the horrible noises, but during it I was able to watch and listen to a movie. After the long MRI I was sent home with not a worry in the world. I definitely thought that I got off lucky and I started to move on with my life. I was having an amazing day and nothing seemed to be letting me down. I was sitting up in my room cleaning my new hamster cage when my mom walked in and shut the door. She looked very upset and concerned. I was scared to ask her what was wrong because of the overwhelming bad feeling that I had in my gut. She told me that my MRI results came back and that they weren’t looking too good. We had known that MS might be a possibility but that was shot down and never spoke of again shortly after my spinal tap. But somehow I still knew. My whole life something had felt off about me. I was always different in ways that I couldn’t explain to other people without sounding insane. But surely enough the news that my mother had to tell me that day was life changing and devastating. After hours of sitting in shock not knowing how to feel I slowly started calling each of my family members to tell them the news. It was harder for some than others, but all in all they were upset. So now what? What was I supposed to do about it? What could I do about it? Was I going to die? Was I going to be disabled and not be able to walk again? These were the questions running through my mind. I had no idea what Multiple Sclerosis was, and I had no idea what I was going to become. A few weeks after my diagnosis I was introduced to a medication called Copaxone. It is a daily injectable shot that you can take in your arms, your stomach, your back, or your thighs. And honestly it didn’t seem too bad at the time, until I had to start taking it every single day. I started getting bruises and hard spots and painful sores all over my body in the places that I was taking the shots. I even had a few attacks instantly after taking the shots where I felt like I was having a heart attack and honestly thought I might die. I spent months being depressed and still not understanding why this was brought upon me, or what this disease even was. And that is when it hit me. What was I doing? This was my life now. It was time to nut up or shut up. I needed to get prepared for the rest of my life and figure out exactly what my disease was doing to me. So I started reading, and researching, and learning all of the things that I needed to know. I even joined a few groups on Facebook and was able to talk to people that had my very same problems. Things such as my body hurting and going numb all the time, or my body shutting down if I was stressed or if I got too hot or too cold, or my Insomnia, or even my mood swings and depression. It was so comforting to know that other people were going through the same things. Luckily after a few weeks of looking I heard about the National MS Society. It is literally a society of people and family and friends that are affected by this disease. They find us ways to cope and help each other learn things about ourselves. So now my journey is taking a turn for the better. My family and I are finding ways to help people understand what this disease is and how it can affect people’s lives. As a family we have started doing the MS walk in Salt Lake every year to help raise money for doctors and scientists to help come out with new medications and programs to help people like me live normal everyday lives. So that is why I have reached out to all of you. Not only to ask for your help, but to let you know about my disease and the struggles that I go through. My hope and dream is that one day we will find a cure, but until then I hope to find ways to cope and to find easier medications that are less painful and a little more enjoyable to take. If this disease has taught me anything it’s that life is short. So make something out of it. My name is Katie George and I have Multiple Sclerosis.