…to now. How it all started. A chronicle, so it can’t be forgotten.

My last post was titled “The Beginning” but I guess that’s not entirely accurate based on what this blog is about. Thus this post’s title is a sort of continuation, so I can give the full story as I remember it.

Everything began around Christmas of 2011. Due to ‘this and that’ the family didn’t have a normal Christmas and the family Christmas was moved to New Years Eve so that everyone could be together. I was a little Scroogish at the time because I wasn’t expecting to get much because the one thing I really wanted I wasn’t going to get until February, that was a plane ticket to Jacksonville, Florida to see the love of my life, Shelby. But the lack of the instant gratification was a bit of a bummer, to be honest. But, to only make my mood worse, my vision suddenly got extremely blurry. It wasn’t so bad that I couldn’t function, couldn’t read, couldn’t drive, couldn’t work, etc, etc, but it was significantly worse than normal. A coworker of mine had told me, after I mentioned it to her, that her eyes had been really dried out from the cold weather and she was suffering something similar, so she suggested eye drops and that it would probably pass. New Year’s Christmas came and my vision remained blurry, but I made the best of it and I got broken out of my Scroogishness by some rather awesome gifts that really surprised me, a rather awesome print of a Buddhist Monk sitting on a hill top with his cat at sunset that I got from my equally amazing Aunt Rhonda and some old coins from all over the world that I had been eying at a local antiques outlet mall with a WWII newspaper that is really well preserved from my loving, amazing mother, Treva. Other than all the wonderful gifts that I had gotten, one thing stuck out to me. In them wanting to celebrate New Year’s that night, which we sadly couldn’t stay for, someone needed to go and search for some champagne in the off chance that there was still a bottle somewhere in town. Matt, my cousin Nicole’s husband, and I got ‘selected’ to make the hunt since I had a pretty good idea where to look since I get asked similar things a lot from working at the hotel. We made our way to the local ABC store, which shockingly didn’t sell any, and then to the local Wal-Mart, which we scored the last two bottles of champagne in the store at. But in the car there was ‘something’ that embarrassed Matt. Based on what he said, in order to rationalize it I suppose, I knew what it was and it honestly wasn’t anything to be embarrassed about, but when I got a glimpse at it, I realized exactly how bad my vision was at the time. To Matt’s luck and relief, I was practically looking though Smoked, Paned, Beer Goggles and honestly couldn’t see anything other than a blur.

My vision stayed like this for about a week or so longer as I adjusted to it and sort of got used to it, which could have been it improving a bit and me feeling reassured that it was just my eyes getting really dried out, to my dismay it actually stayed like this for over a month, but did eventually get better. About half way though the month I was scheduled to have an Upper GI Endoscopy, because that past summer I had been diagnosed with GERD, and a wisdom tooth extration, back to back The wisdom tooth came out easily enough and the Endoscopy went by rather easily without any drama. Both being simple procedures, I was back to work the next day. Sitting there that evening, it being a pretty quiet night, Mom stopped by to bring me something to eat since she thought that I didn’t have anything with me. Standing there, talking with her, I was playing with my beard, which I had let grow out with Winter and the fact that I really hate shaving. I pulled down on the right side and realized something odd, I couldn’t feel it. I said something to the effect of “That’s weird,” and pulled harder. Nothing. Considering that with wisdom teeth extractions, they can cause you to go numb in your jaw for a few days, I didn’t think anything of it for the moment. As I sat at work, bored for the most part, I played with pulling on my beard to different degrees of strength in an attempt to get a reaction out of myself, still nothing. From that, I started to test other parts of my body to get a comparison. As the night passed I went from head to toe on either side as I discovered that I was numb on the entire right side of my body. To say that this worried me is an understatement and after getting home, changing, and talking briefly with a close friend, I was in the local ER shortly after midnight.

In the ER I saw a doctor by the name of Turski who, from his reactions, probably had a good idea of what the problem probably was, but couldn’t give a definitive answer. He and his two interns ran me though some tests, took blood, did an EKG and a CAT Scan. All he told me was that something showed up on the CAT Scan, but he couldn’t be sure exactly what it was without a better, more precise test. That following week I was scheduled for my first of MANY MRIs.

Shortly before this I started noticing other ‘symptoms’ that I didn’t realize were symptoms at the time. The first being a gurgling in my left arm. In the past, I had noticed a similar feeling in different parts of my body, but never as strong and never as frequent as this. The only way I knew to describe how it felt was like the air bubble drifting up from the bottom of a water cooler, but in my arm. This led to another ER visit, which in retrospect was highly unnecessary, and an eventual visit with my Primary Care Physician, Dr. Scotty Dove, who the results of my MRI would be going to anyway.

One day, about a week later, I got a call from Dr. Dove’s office to ask and see if I could come in. Fear started to set in right there. I called my mother, told her that they called and she met me at their office. We went in and when the receptionist recognized me the look on her face just sank. They sent me straight back to Dr. Dove’s office and there we sat for about a minute, waiting. Was the longest minute of my life. Dr. Dove came in, sat down and looked at me and said these words that I will never forget, “This the part of the job that I really hate.” From there forward, he began to explain that I had 7 lesions on my brain and that my symptoms fit the bill for MS. It wasn’t a 100% certain thing because there are things out there that mimic MS, but the likelihood was fairly high. I honestly don’t remember much from the meeting, other than what is written here. My world crashed down around me and the only thing I could think of and say at the time was “What do I tell Shelby?”

From there, he referred me to another doctor in Pulaski, although our first visit with him was at his offices in Christiansburg. My new doctor’s name was Dr. Nack, who’s first name sadly isn’t Nick. He’s a neurologist by profession and was tasked with narrowing down exactly what was wrong with me. In such a dark time for me he brought about a bit of light. Not only was he very professional, but there was never a sliver of pessimism in anything he said. We ran tests looking for mimics and confirmation of what was believed was wrong with me, one of which included a spinal tap that he preformed in an outpatient room at the hospital in Pulaski. He was rather surprised at how well I took it, compared with most men who tend to be sissies about the procedure. Honestly, I told him, that if doing that ten more times could lead to a cure for me, I’d be more than happy to oblige to something as simple as that. From that spinal tap, however, he found seven bands of protein in my spinal fluid to match my seven lesions and on February 9th 2012 he officially diagnosed me with Multiple Sclerosis. I had known this was the case, for a while. It’s just one of those things that, when you live in that body and you read about the symptoms and you compare it to what you’re experiencing, you just know. This caused me to take the official news from him much better than when I got the news from Dr. Dove.

From Dr. Nack I moved on to an MS Specialist in Winston-Salem, NC. I didn’t realize it, at the time, that he’s kind of a big deal. Although in speaking to him, you would never get that impression. His name is Dr. Douglas Jeffery. Dr. Jeffery has been a blessing, no disguise. His entire focus is the patients well being and health. Originally he wanted me on a drug called Tysabri because it is one of the best MS drugs on the market, especially for people with what he calls an aggressive from of MS like mine, which it looks like I’ve actually had for years but never realized the symptoms I had were symptoms. Unfortunately, Blue Cross/Blue Shield requires that you try a less expensive medication, like Rebif, first before they’ll approve Tysabri. Even then, the cost with insurance is pretty high. Him, wanting me to get a quality medication and something that I could afford as quickly as possible suggested that I try get into a clinical trial for two different drugs. This would mean that I would be getting a good drug and any treatment that I received would be 100% free. My biggest concern was getting treatment started and at that point, which was beginning to feel like forever, I didn’t really care what it was going to be. Regardless, we took some time to weigh our options and looked at two studies in depth. The first study we looked at was for ocrelizumab, which is in a stage 3 clinical trial and the other is called Medimmune a stage 1 clinical trial. The “Ocra” was my first choice until he suggested the “Medi”, which he had forgot about when we had discussed the options. So, since he is someone I highly respect and he is the Specialist, I elected to try the Medi study

Having made our decision, we headed back down to Winston to begin the process of the screening visits. They basically drew a lot of blood, a WHOLE LOT because I elected to let them have extra for research into the genetic aspects, did some tests based on my cognitive abilities involving shapes and how they associated with numbers, ran an EKG, peed in a cup and finally had another MRI done at Piedmont Imaging. All in all, it wasn’t a bad experience, but it it wasn’t meant to be. The new MRI showed that I now had 15 lesions total, which the study required that patients have less than 15. Surprisingly, while pessimistic about it and wanting to ask them to make sure they hadn’t miscounted, I took it pretty well and we rolled into the original choice of Ocra.

The Ocra required the same screening tests, which was pretty much a repeat of the Medi visit, but this time there was no ‘too many lesions’ to worry about. It was simply a ‘going though the movements’ process. All there was left to do was wait for my appointment, which would be at Emerywood Hematology/Oncology in High Point, NC. My original appointment was for May 29th, but lucky as I may be, they had a cancellation and were able to move me up a week, this past Tueday, the 22nd.

Me, my mother, and my Aunt Rhonda arrived there at about ten minutes to nine and they took me straight in and told me to pick a seat in the front, so they could keep an eye on me throughout the day. I picked one that would let me look down the hall and see people coming, maybe because I’m nosy. Upon sitting down it all began. Bobbi, an assistant from Dr. Jefferies, showed up shortly there after because Ashley, who is the study coordinator, couldn’t come because that Monday she had broken her foot and was on strict bed rest.  Bobbi ran me through a few tests that I had done before and brought in the actual drug. After they put in place my IV Cannula the process began. For something so important, it was very anticlimactic. I ended up sleeping most of the day away, missing out on lunch that Mom had brought me and really only waking up for the very end, which was them putting me though an observational period that lasted an hour.

Now we’re to now after well over 2000 words. This is by no means everything, mind you, because I’m not sure anyone could remember every detail that’s happened over the last 4 and 1/2 months and I really skimped on the details about the actual infusion since my first post and the Facebook post I shared cover it better.

Now is when I look to the future, the hope of the improvement from the treatment and maybe one day I’ll learn that being a part of this study helped lead to a cure for MS.

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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.

Aside

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