Beginning.

Hello everyone. My name is CJ and this blog will be about my unique experience with Multiple Sclerosis. Here I intend on sharing a multitude of things. Some of it may be random ramblings or things the need to be vented, because we all need that once in a while, but I mostly want to share my experiences as I strive to overcome this hand that life has dealt me.

My realization of wanting to do a blog came from when I was first diagnosed. When the news came to me from my doctor that he believed I had MS, I completely shut down. It was a complete shock to my system on all fronts. My mother instantly stormed into research mode to figure out what she could about the disease. In searching, she found MANY blogs by people with MS, telling their tale and showing that life isn’t over with a diagnosis of “You have Multiple Sclerosis.” These, ultimately, reassured me that my life had not been ripped from my hands, that I could still live the life I wanted to live. For a long time I have been unsure as to where to start, what to say. That was until a few days ago, when I reported to family and friends over Facebook about my experience with my first treatment. The words just sort of flowed and came to me easily. It is something that I feel needs to be shared here as well.

Today/Yesterday was fairly awesome, at least the parts I was awake for anyway. Me, Mom and Aunt Rhonda got to High Point, NC at around 10min to 9 after a 2 hour car drive, which was nice because I don’t get to be with the two of them at the same time as often as I like. The place my infusion was at is called Emerywood Hematology/Oncology, which has a beautiful facility I might add. The people, from the moment I walked though the door, were incredibly nice. This is especially true for the woman that heads the wing, who’s name eludes me. She wore a rather striking red dress under her lab coat and bore a shocking resemblance to Dolores Umbridge, with hints of Effie Trinket. I much nicer and less of a witch Dolores Umbridge, of course. After they got me settled in one of their chairs in front of their main desk, so they could keep an eye on me in case I had a reaction, I caught the familiar smiling face of the assistant from Dr. Jefferies office. She told me that Ashley, who organizes the studies, couldn’t make it as planned because she broke her foot because she didn’t stay off of it like her doctor had told her to. But she ran me though the cognition test, which is shapes that associate to numbers like a ( is 1 but ) is 9 while + is 8 and so on. I scored a 41/41 out of an either 60 or 90 second test, I believe it was 90 but still not bad and pretty close to what I scored the last time. Shortly there after, they did an EKG and gave me my IV Cannula, which was needless. They took OODLES of blood at which point “Dolores” told me I’d need a Transfusion. To be honest, I panicked at first until I realized she was joking because I hadn’t seen the crazy amount of vials. But after that, they started me with saline which I will never get over the taste of and then to the steroid, Tylenol and Benedryl to reduce the affects of any possible reaction. After about an hour of being there, they started me on my Ocralizumab infusion. Mom sat with me for a while and read while I listened to my iPod and they’d come by every 15 minutes or so to check my vitals, making sure nothing strange was going on. Since they were checking so often, I had my own “R2-D2” strapped to my right arm pretty much the whole time for checking my BP at regular, timed intervals that they programmed in. It didn’t take it too long for me to get sleepy, considering those are my regular sleeping hours anyway and I, not after too long, passed into slumber while they continued about checking on me and such. My body’s precise programing woke me up at JUST before 2:20, when I always have my phone alarm scheduled to go off. To my dismay, I missed everything and my Infusion was pretty much over. All that was left was the hour of observation they do, again making sure that nothing hinky happened. My BP, right after I woke up apparently dropped, but I think it was because I was trying to lower my leg rest and it tugged a bit on one of the cords. I never got light headed or dizzy, so I’m fairly sure that was why, but they were cautious none the less. I found the FUZE drink Mom had left me sitting on my armrest table and devoured it along with a cookie that a lady that volunteered there had given me earlier in the day. “Dolorous” then showed me how to do the Rebif injections, which is interesting since they go in around the bellybutton in a rotation, I never felt the needle insert itself. She was either THAT good or they are that painless. After that, they did one last EKG, which I’m STILL pulling the glue off my legs from, and set me free, but not before I got to speak a little more with “Dolores” before we left, told her how much I honestly liked her dress and she gave me a big, honest and caring, hug.

All in all, even though I slept though most of it, it was a good and interesting day. The best part might have been at the end though, just before we were getting ready to leave. A woman that had been sitting on the far right side of the room was at the front desk, getting ready to leave. That day had been her last day of cancer treatment. As part of your last cancer treatment there they have this little, but loud, bell at the front of the desk with a little plaque. The plaque, in big letters reads “The Bell of Hope” with something smaller under it that I couldn’t make out. But each person that has their final treatment there rings the bell and adds their name to a book to show that they were one of the many that had been there, had their treatment, and had beaten cancer, or at least were close to it. The room applauded as she struck the bell strongly three times. It was quite the moment, but it makes me hope that one day, I will get to ring a similar bell that indicates that I am one of the first people to beat MS.

That post meant only for family and friends felt slightly wasted. Not to say that keeping my family and friends who care about me informed is a waste, mind you, but I felt that the knowledge of the experience and the experiences to come could and should be shared with others that are falling into the world of MS, which is terribly similar to descending off that first hill of a roller coaster.

Thus here I am, 25 years of age and all I got for Christmas was MS.

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Aside

1 Comment (+add yours?)

  1. Steph
    May 26, 2012 @ 22:30:52

    Keep writing. It is definitely helpful to others and likely therapeutic for you.

    Reply

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