I long for the day in which MS stands for Mystery Solved. Mystery Solved. I can ponder that for hours if allowed. But, for me MS stands for Multiple Sclerosis.
I was officially diagnosed with MS on February 8, 2008. But, if I look back, like my doctor talked with me about-there were signs. Lots of them. I just didn’t think about those signs. I mean, would you? One of the signs occurred the day after Winter Break 2007, I went back to school and dove right into my teaching on January 7, 2008. I didn’t think anything was out of the ordinary. I was assessing my students upon how much they remembered over the break. I was impressed. They did well. I looked at the clock across the room and it was blurry. I thought-these glasses. I just got them in April, I guess I need another eye exam.
Within the week, my eyesight went from bad to worse. I mean, the blurry vision turned to double vision. You try seeing blurry, double vision while wearing glasses. It is scary. Everything looks worse when it is blurry and you are seeing twice the mess, people, etc. I mentioned this to my Mother. She said, ”Go to the eye doctor-the ophthalmologist. “ I went, on Monday, Martin Luther King, Jr. day. He dilated and looked into my eyes. He said there was nothing wrong with the inside of my eyes, so it must be the outside. I waved my hands in front of my eyes and told him the outside looks fine. He said the brain. He scheduled me for an MRI that afternoon.
The next day, I went back to the eye doctor. He said the MRI shows possible lesions which are indicative of Multiple Sclerosis. I was glad my Mom was there, because I was just in a daze-I mean, what is happening? The doctor sent me to a neurologist. This neurologist looked at the charts and said, yes, it looks like Multiple Sclerosis. But, l want you to have another test-a lumbar puncture (spinal tap). That was painful. Every time I stood or sat up, my head pounded. I could not function. I was prescribed coffee. (I don’t drink coffee, but you know a prescription to Starbucks isn’t so bad!) The tests came back and he wanted to see me on February 8. I was prepared for the diagnosis. I mean from January 7-February 8, I was expecting the diagnosis of Multiple Sclerosis.
After the diagnosis, the doctor was mentioning various types of therapies. I had no idea what he meant. I thought, me going to therapy. MS therapies. What? I was totally confused. Then he elaborated-and I heard, needles, injections, and daily, names, Rebif, Copaxone, and I thought-“Whoa!” Get me out of here. Copaxone was settled on. Daily injections. I have a fear of needles/injections/shots/pain. No, I REALLY have a fear. I began thinking we have an Awesome God with a mighty wicked sense of humor. I mean, I have to take daily injections, in different parts of my body and I am deathly afraid of injections? I was visualizing God sitting on his throne up above and laughing a belly laugh. The day came for my first injection. February 15, 2008. I am going to be giving it to myself in my right abdomen. Say what? Injection? Myself? Right abdomen? I was more than frightened. I was scared. I was a wreck. I was hyper-ventilating and quickly going into a panic attack. The nurse (who was teaching me to give me my injections), and my daughter were in my bedroom with me. Well, I wanted to lay down for this first self-injection. I mean, if I were to faint, I would already be in the prone position. She taught me to use an autoject. Just place it on the part of your body to be shot up and push the button. Easy, right? Nope. Not when you are deathly afraid of shots, needles, injections, pain. I pressed the button. I felt the injection. I went into a panic attack and I began sweating profusely. Blood pressure went up, and then as fast as it went up, it went down. I was feeling faint. Hot, cold, yucky. The nurse took out her stethoscope to monitor me, and then a miracle. I returned to being myself, and I stabled off. My body went to normal. It was over. I was still alive! OK, I got through this.
Then the next day I realized I had to give it again. My daughter was with me. Well, I want to live and be there for her. I want to teach. I want to be me. So, with all of my “I wants…” I settled down and knew I had to give myself this injection. With the autoject. I chickened out. My daughter gave it to me. I was getting used to that. Our bonding time. So days turned to weeks and weeks turned to months, and my daughter said, “You need to learn to give this to yourself. “
“Huh?” I replied.
“I am leaving for college in a few months, Mom,” she said.
“Just give me my shot,” I reminded her.
“Alright,” she said. Then out of the blue, after she gave me the shot in my right thigh, she took off her flip flop and hit the shot area with it.
“Why did you do that?” I cried fretfully.
“To make sure it went in,” she replied sweetly.
I began giving myself my own injections with the autoject after that. A few months later, I really studied the autoject and it dawned on me how that thing worked! I needed to coax myself into the shot. I mean, make it fun. So, I did my version of the Macarena dance. I called it the shot Macarena. I would touch the area I was suppose to give myself the injection first, and then touch the next area, etc. It went something like this right arm, left arm, right tummy, left tummy, right thigh, left thigh, right hip, left hip and shake….I did about 6 rounds of this before I gave myself the mighty injection. This was my norm until July 19, 2011. July 20, 2011-I began a new therapy. Tysabri. And, so, my journey with monthly infusions began.
The first time, I had no idea what to expect. I mean, me? Hating needles. I didn’t want to go. My daughter went with me. With about 10 LARGE stuff animals. (I needed something to hold onto and bury my face into and keep me safe.) When they were going to give me the infusion, it is required that they take your blood pressure, temperature before the infusion, during and after the infusion. My blood pressure was high. (I have been told that I have the White Coat/Doctor fear, it went back to normal when the event was over.) My daughter held my hand and said, “Mom, look at me, focus on me, breathe.” I think I just stared at her with glazed eyes holding onto my stuff animals. Afterwards, I fell asleep. Then next month, I had my infusion, but I only brought 3 stuffed animals. And, then, the medical company sent me a bag and a blanket and I began using the blanket. Even to this day. I get my blood pressure-and it is HIGH, but it goes back to normal. Me? Picture this. After the blood pressure, I put the blanket over my head, and they do their little magic of inserting the IV. I keep my head covered and my IV’d arm covered and sleep. After the infusion, my blood pressure is normal. And, this is usually the monthly ritual.
Now there were some”exciting” days so to speak. One time, I had my monthly infusion the first week of school. They took my blood pressure and it was high-I should have been comatose. I explained to them I am a teacher and every teacher has high blood pressure during this most sacred of times. Beginning of the school year. Another time that was memorable was when I was being given my third blood pressure check at the same time they were taking the infusion needle out of my arm. My blood pressure skyrocketed. They said, don’t worry, we know what happened. We will not count this one. And, the last exciting event-a few months ago. They needed a blood sample. I said, no problem, you get it when you stick that infusion needle in me. And, the infusion nurse (Don) said, “Not today, we are going to have to take that separately.” My mouth dropped, and I went pale. The other nurses looked up from what they were doing and their jaws dropped. And, Don said, “I am joking.”
One of the other nurses said, “Wrong type of joke with her!”
The infusions are working out well. My last two MRIs have showed no new lesions. This was after steadily having new lesions in brain and spinal cord. Your spinal cord isn’t that big, yet I have a dime-size lesion in it. But, since I have been on these infusions, there are no new lesions, I am holding my own. I am thankful for that. Yes, there are things I cannot do. But, there are things that I can do. And, I need to look at the positives and remember that I can do things, maybe not like I used to, but I still have a lot of life to live. And, that is what counts.
Lisa D. Graham
Does listening to music help lower the severity of your stress or MS symptoms?