Hi. My name is Colleen and I have wanted to submit a blog here about my experiences with MS over the past few months, but am just finally getting the courage to do so. I was officially diagnosed with Relapsing Remitting MS in January 2012, after several months of testing. The symptom that lead to my diagnosis was a seizure, which I am finding is not the most common way to find out. My first neurologist and his nurse were my saving graces over the next year as I dealt with many of the emotions and questions that come from this type of news. The amount of emails that they answered for me got me through some of the hardest days. There are so many “what ifs” and so much information that it can be both scary and overwhelming.
I began taking Tysabri in April 2012 and am currently still following this course of treatment. I have not had side effects, remained JC Virus negative, have had no new symptoms and continue to show no changes on my MRI. The main issue I have had is with anxiety. My anxiety is not classified as a symptom, but more as my way of trying to feel safe in the midst of the uncertainty that comes with MS. This created havoc in my life as simple everyday things such as driving, taking the train, attending a meeting at work or exercising were met with panic and anxiety seemingly out of the blue.
This leads me to the reason I wanted to share a blog in the first place. As a way to take a stand against my MS and the anxiety it has been causing me, I signed up for the 2013 Boston Marathon. I had been an avid runner when I was younger and had done a few half marathons prior to my diagnosis, but I became paralyzed with a fear of working out or pushing myself too hard once the diagnosis was official. I applied to the National MS Society’s team and was accepted. I started training in December of 2012, as an unprepared, terrified girl and it was the best decision of my life. The training was hard, but my body was able to push through it and I met some of the most supportive and inspiring people. I went to the starting line that April confident I would finish and it would symbolize my control over MS. Unfortunately, the 2013 Boston Marathon was not as expected due to the tragic bombing and consequent events that unfolded and I became more determined to win this battle with MS.
The 2014 Boston Marathon and the training that went with it changed my life for the better in so many ways. For one, I started to see glimmers of my “pre-MS” self, not the anxious person trying to control every situation to protect against flairs that I had become. I got my confidence back, I made lifelong friendships with people who have similar goals and passions, and I became unafraid to go after what I want. During this time, I was also raising money for the MS society to help others too. When race day came, I didn’t have my “dream” race, but I enjoyed every mile, cheer, hug, high 5 and friendly face (family, friends, and strangers) along the way.
Crossing that finish line was the best feeling in the world – not only did I accomplish a lifelong goal, but it also symbolized a fresh start for me with my MS. It may be a long road (like a marathon) and there will be hills and rough spots, but there will always be supportive faces to aid you and a finish line to push toward and new journeys to look forward to. While I still have anxiety issues from time to time, I am able to manage them better after the mental aspect of marathon training and no longer flee situations as I did in the past. I may not always be able to run, but I am not going to let the uncertainty of the future prevent me from enjoying experiences today.
Summer break has been very active around here; we’ve taken trips to the beach and had endless BBQ’s. I will be sad to see summer go but as I look back I’m happy with the progress made in my ongoing journey towards a life less dominated by MS.
Getting back to Yoga Moves MS was great, I love the positivity and energy that Mindy and her team bring to each class. Being able to experience the power of the mind and body at work is a wonderful thing. MS plays a varying role in each class members life but while they are in class they are focused yogi’s and push their bodies and center their minds.
Over the summer I was able to spend a lot of time with my soon to be two year old son, which was so great. Together we played in the park, hit some whiffle balls and found as many pieces of heavy machinery and tractors as possible. Finding heavy machinery is not difficult as we live in Michigan the road work capital of the galaxy! In order to get to the parks in our neighborhood it is about a three block walk in either direction which my toddler can do no problem, me on the other hand…I get winded, but I can walk straight through to either park.
Just being able to walk to the end of my driveway was a goal of mine less than a year ago, now I’m able to walk all over the place but I need to build up my stamina both physically and cardio-wise. So I’m going to start timing my walks to the park with an end goal of eventually jogging there. I was never a big runner unless you count basketball, but now that I’m unable to run it’s been eating me up. It’s been nearly seven years since I last ran but I figure with some hard work and dedication I should be able to run right? I tried to run the other day and let’s just say it’s going to take a ton of practice I feel like a baby deer trying to get my legs underneath me! I will keep you updated and I will try to record some of it for your viewing pleasures.
Be a Warrior Today,
Often I find myself wondering what can I possibly write about on this site. It seems appropriate today to just send out a reminder that no one is alone. After hearing of the death of one of my favorite actors and comedians, it reminded me of depression in MS patients. When I was first diagnosed, I thought my world had ended. Despite everything I read, and my normal half glass full attitude, as the days passed by and the doctors appointments increased in numbers, depression ensued. I went from being a healthcare provider who supported patients and encouraged them daily, to a nurse who didn't want to wake up each and every day. A mother who only thought of how bad life was and who didn't want to participate in anything. I couldn't get motivated for anything. I became withdrawn and recluse, feeling so alone. Finally, I reached out to a nurse practitioner at my physicians office. She used the exact words I had been telling my patients for years. If you break a leg,you go to the doctor for X-rays and a cast. Depression is just another condition that affects the brain and is treatable. As much as I fought the treatment, once I began anti depressant, the fog finally began to lift. I began to enjoy life again. Depression is very common as we all know. I needed the drugs for around a year and once I became more educated about MS, participated in therapy, I found that I could accept my illness and come off the drugs. Don't despair. If you find yourself feeling alone even when you have family and friends in your life, get help. This feeling of being alone and wanting it to go away is temporary. Reach out to so done. Don't do anything permanent to end a temporary bump in the road.
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
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Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.