News from June 2014
By Christine Brovelli O’Brien
“You have three white matter lesions.”
That was how, back in April 2013, I received my initial diagnosis of relapsing-remitting multiple sclerosis. My neuro-ophthalmologist, who was kind enough to call me on a Saturday morning, spent a few minutes explaining to me what white matter lesions are before revealing my MRI results.
And the entire time he spoke, I knew what the results were. I had known the night before, when my husband and I drove over an hour from his office to the imaging center for my MRI – he had pulled some strings to secure me an appointment at 5 p.m. on a Friday and promised to let me know right away what the scan results were.
But I already knew.
I am the third generation in my family to have RRMS. So I knew. But, it’s also how I saved myself from further suffering.
My journey began in March 2013, when I was scrambling to finish grading papers so I could go to bed before 2 a.m. It was right before spring break, and I had been grading for hours. My eyes were sore and tired; I remember looking up from a paper and noticing that the vision in my left eye was blurry. I didn’t have any blind spots, but something was definitely “off.” My husband and I chalked it up to stress and fatigue.
Later that same week, I came down with a virus and was so ill that I didn’t think much of the fact that my vision was still goofed up, but later that month, during a routine visit with my optometrist, I asked him about it. His scans didn’t result in anything alarming, but he referred to me to an eye clinic to follow up. I met with an ophthalmologist, who told me that everything with my left eye looked “fine” (I never had any problems with the right one), and that based on his in-office tests, I probably just had a “virus” because he didn’t see anything consistent with MS. I asked to follow up with the neuro-ophthalmologist, just to be sure.
On the way home from that first appointment, my mom asked me why I wasn’t happier that I got a good prognosis. It was difficult for me to explain that his diagnosis is what confirmed for me that I had a serious problem: If my eyes were “fine” but my vision is still wonky, that means that something is wrong with my brain.
Within the first few minutes of my meeting with the neuro-ophthalmologist, I knew I was in the right hands. He ran a battery of tests on me, including one that he hadn’t performed in over 10 years, and my eyes were “just fine.” Then he performed a very simple test that confirmed it for me. He held up a tiny eye drop bottle and asked me to close my right eye (the “good” one) and tell me what color that cap was. I said “whitish-pink” because that’s what I saw. I opened my other eye and saw that it was bright red. So I knew.
It’s a common saying that once your illness is diagnosed, you actually feel better because now you can put a name on it and being treatment. It’s no longer the great unknown. And that’s how I felt after the neuro-ophthalmologist’s phone call, and when I met with a neurologist two weeks later to receive my diagnosis of RRMS. I had found relief.
This is not to saw I was ok. I cried a lot those first few months, mainly out of disbelief that I actually had MS. Ever since I was a teen, I have been worried about “inheriting” the disease, and I have watched family members suffer.
But when they were diagnosed, they didn’t have the benefit of medications to help prevent the progress of MS, only ones to treat the various symptoms. This is why I didn’t hesitate to begin treatment right away after my diagnosis.
In the weeks and months that followed my diagnosis, I told close friends and family members, but I didn’t share the news with everyone. I wasn’t keeping it a secret, and I told people that they could tell others (it would save me from having to tell everyone myself), but many people in my life still don’t know.
Until recently, I kept the news a secret from our neighbors, who have become close friends, because I was worried that I would be treated differently, and I didn’t want them to worry. I waited until last month, after my yearly MRI scan, which revealed no changes to my lesions (hooray!) and no new lesions (double hooray!), and guess what? They were supportive and treat me exactly the same as before – everyone does, as a matter of fact.
At the time of my diagnosis, I made another life-changing decision: I didn’t renew my teaching contract. It was the first time in 13 years that I wouldn’t be teaching, and it was a tough decision, but it was the right one. I don’t regret it.
After all, I have a toddler to look after.
I became pregnant when I was 40, gave birth to my girl right before my 41st birthday (I felt awesome during my pregnancy, not even any morning sickness), and was diagnosed with MS the year I turned 43. Needless to say, the past few years have been filled with many game-changers. After I had my daughter, I frequently day-dreamed about staying home full-time, then after the MS diagnosis, I decided that life is too short to be unhappy and that stressed out all the time.
So now (many apologies for the cliché), I have less money but less stress, and more happiness. I also have been able to return to my own writing. Working as a freelance writer allows me to work around my own schedule, and my family is there to help with last-minute child care services (thanks, Mom!).
What I don’t always have, however, is enough energy to get through the day running after my three-year-old daughter. It’s not easy being a not-quite-so-young mom, and that’s why I try not to be too hard on myself.
I trust my instincts more than I ever did before, and if my instinct is to lounge on the couch with some chocolate and a magazine, then that’s what I’m going to do.
Christine Brovelli-O’Brien is a writer, mother, former English professor, and MSer. Her work also appears regularly on the What to Expect When You’re Expecting Word of Mom blog. Follow her on Twitter: @brovelliobrien
By Elys Bank
It has been one year since my life was turned upside down.
It was April, 2013 that it all started. I noticed this strange, persistent light flashing in the corner of my right eye. Of course, like anyone would, I Googled that symptom and spent a week sure I would be needing surgery for a torn retina. But when I went to the ophthalmologist, he referred me to the neuro- ophthalmologist, who sent me for my very first MRI. And when those results came back, I got referred to a neurologist.
That’s when I figured out that no surgery was going to fix my eye. The neurologist sat calmly in front of images of my brain, pointing out the 18 “holes”—areas that were lit up like holiday lights. My life was about to change dramatically because of the golf course being constructed in my head.
My good friend Sara did something then. She made me join her one Saturday for tryouts. Roller derby tryouts. She dragged me to the warehouse that contained the track. She strapped skates on my feet. Feet that have had no wheels on them for 30 years. She grabbed me by the hips and launched me forward into the pack of incredibly cool women that all harbored the dream that I had secretly had since I first learned about Derby. And I fell. And I fell again. I was fighting the side effects of a medication that I was taking that was making me shake. It was making me dizzy. And I tried to balance on 8 wheels.
My endurance was terrible. I couldn’t skate forward. I couldn’t stop. I was completely drained after a single lap. My legs burned from the exertion of muscles that had long since retired into a quiet existence.
Exhausted, shaky, and drained, I sat on the bench and watched these amazing women skate. And fall, and get up, and skate some more. I couldn’t hold the tears back. Trauma, the team medic, gracefully skated over and sat near me on the bench.
I’m not hurt,” I told her. “I’m just frustrated.”
“No you’re not.” Trauma looked at me and said, “You’re pissed off. Your pissed that your body has betrayed you.”
She told me to stand up, and try again. Then try again, then do better next time.
Biz, the Fresh Meat mama (that would be the veteran who is in charge of teaching the rookies how to skate), called me aside. She looked over my tryout sheet with notes about my woefully pitiful test scores. She asked, “Do you want to do this?”
I wanted to do this. Hell, yes I wanted to do this. If I had to go through the Fresh Meat class ten times, yes, I wanted to do this. I wanted to take my body back. I wanted to get strong in preparation for the days ahead when my physical abilities might be tested. I wanted to know that if I was in the emergency room, it was because I took an elbow in the nose while blocking the other team’s Jammer. Not because by brain was being rebellious.
That was a year ago. In some ways, my life is very much the same as it was a year ago. I work as a technical writer. I raise my amazing kid. I serve as a (somewhat) bad influence for my nieces and nephew. I eat too many Oreos.
But in other ways, everything has changed. I give myself a weekly shot of interferon-beta. My medicine cabinet no longer has much room for lip gloss or nail polish. I wrote up a health care directive and a will.
And I am skating my ass off. And loving every minute. I get exhausted and overheated. I have to rest more often than other skaters. I get shaky and weak. But I’ll be darned if I didn’t learn how to do a crossover.
I wish I had found derby earlier. But I am so glad I have it now.
Elys Bank was diagnosed with RRMS in 2013 at the age of 41. A technical writer for Fusion-io and the single mom of a 10-year-old boy, she lives in Salt Lake City and is well versed in nerd culture, preferring Wars over Trek. She started skating with the Wasatch Roller Derby in July of 2013 and is proud to say that she no longer falls at every practice. Only at every other practice. She skates under the name Velma Rinkley. Follow her adventures at becomingprime.blogspot.com. Or if you are a fan of sarcastic humor in 140 characters or less, her Twitter handle is: @VelmaRinkley
by Caroline Kyriakou
It’s been a while since I’ve made a post. I haven’t been feeling the best as I have been getting a lot of headaches and fatigue. While working a full time job, these aren’t the easiest symptoms to deal with. I have a hard time falling asleep and started a new medication to help me sleep through the night. The periodontal office where I work has been going through renovations and keeping the office open during the renovations has been challenging at times. Also, I have been having asthma issues (my inhalers are no longer working) and I am scheduled for testing next week to try to figure out what’s going on with me. (Look forward to the next post to find out!)
The past few months have also been busy as I am spending time with my sister and my new niece, Melanie. Melanie was born premature on February 7th (my anniversary with Abe!) but now is growing fast and becoming stronger and stronger every day! I visit my sister, her husband and Melanie on the weekends and help out any way I can. I have been enjoying seeing Melanie grow and her developments. She now smiles and I look forward to hear her giggle!
In April I participated in Boston’s Walk MS for the 6th year. Walk MS is such a fantastic event and I am proud to say I raised $3,673 and in total Team Kaliope raised $4,353! It always is amazing to see the amount of people who come together to find a cure for MS. The Boston walk was in a new location this year, and we walked 3.5 miles down Commonwealth Avenue by Boston University and looped around the Charles River for a bit before walking back up Commonwealth Avenue to the BU Indoor Track and Tennis Center. This year Team Kaliope was a little smaller, as I mentioned in my that my sister had a baby so she and her family were not able to walk with us this year. I am now looking forward to next year’s walk more than ever knowing my adorable little niece will be with us!
In May I had another JC virus test since I am on Tysabri, a monthly infusion, for my MS. I am thrilled that it came back negative! It is such a relief because Tysabri has been working so well for me, and if the test came back positive I am not sure I would continue on it. In comparison to other MSers, I know I have it pretty good. I thank Tysabri for that. July10, 2008 was my first Tysabri infusion, and am thankful I have been on this medication for almost 6 years! Next month will also be my 8th MS anniversary.
Regardless what is going on with MS, I just take one look at Melanie and all my problems just fall away! She has become one of the most important people in my life and my MS will not stop me from being the auntie she can count on!
Caroline Kyriakou was diagnosed with MS in 2006. She enjoys reading, blogging, and is working on her first book. Caroline volunteers as a mentor through MS ActiveSource. She also is an administrator of a Facebook MS Support group, Friends Against the MonSter and writes other Blogs on MS Relief.
For decades, women with multiple sclerosis have noticed that they tend to do better while they are pregnant. That has led to an experimental drug for the disease that’s based on a hormone associated with pregnancy.
The hormone is a form of estrogen called estriol. It’s abundant in a woman’s body only when she is pregnant. Adding estriol to treatment with an existing MS drug cut relapses by 47 percent in a study of 158 women presented at the American Academy of Neurology meeting in April.
The result is “quite remarkable,” says Rhonda Voskuhl, an author of the study and a neurologist at the University of California, Los Angeles. It suggests that estriol could greatly enhance the effectiveness of current MS drugs, Voskuhl says. Those drugs, which are designed to modulate the immune system, can cost up to $60,000 a year.
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