Blessings in disguise

My car died about 2 weeks ago, it wasn’t really tragic that the decision was made that it would be best to sell the car for several reasons.

  1. I really never liked driving anyway
  2. The car had seen better days and this had been a debatable issue for some time
  3. Extra money from the sale of the car was added to our wedding fund

The downside to not having a car is trying to figure out how to get to work. Fortunately, I live in a city where public transportation is able to get me to and fro. However, it meant changing up my schedule. I’m not a huge fan of change, but really it isn’t the end of the world.

So to get to the whole point of why I decided to write this post: I have extra time in the mornings as I now wake up at the same time, but leave for work a whole hour later.  I even wake up a little earlier so I can workout. This morning I thought why  not put my  time to good use, and go back to something I love — writing.

My goal in continuing on with this blog is not only to bring me some joy from writing, but to continue to share my story as I learn to understand and accept my MS diagnosis.

Happy reading!

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Happy Obstacles

So I got engaged a little over a month ago and I didn’t post anything here because I felt I hadn’t built any kind of following and thought it wouldn’t really matter. However, the more I delve into the world of planning a wedding. I think it is highly appropriate.

Planning a wedding = overcoming a life obstacle.

The obstacle isn’t choosing to be with someone who makes you a better person and you couldn’t think of living without. The hard part is making the many decisions all while trying to balance the opinions and feelings of not only your fiance, but also other loved ones.

I am just hoping that I can stayed organized and relaxed. I worry that if I begin to stress too much I will have a MS relapse. Stress seems to be one of my triggers, and if you can prevent any undo physical/mental side effects, I believe you should.

Overall though I am super excited, and can’t wait to marry my fiance who is more than I ever deserve in a partner. Just a little proof that life goes on!

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The other day I realized that I have been laying down on some figurative floor and letting some figurative rain pour on me and figurative feet trample me.  (Yes, my imagination is dramatic). I can’t exactly say what finally pushed me down but I know that the following two things played a role in my tumble.

  • I’ve only been diagnosed with MS a little over a year. I think I’m still angry and terrified all mixed up into one major emotional brain jumble.
  • My job makes me into a data entry zombie, and personally, I think I could do a lot better with my skills.

The best part of this revelation though was understanding that I had to pick myself up. I had to change my thinking. That is when this quote popped into my head: “It’s not whether you get knocked down, it’s whether you get up.” Vince Lombardi Originally, a teammate gave me this quote when I was playing soccer. (I ended up on the ground a lot and I was to take it literally.) However, now the quote captures more than literally falling, but reminds me that giving up isn’t an option.

It has only been 2 days since I imagined picking myself up and wiping myself off, but my resolve to make my life better has been present. I applied to a few jobs, exercised, and had an awesome Sunday with my fiancé even though I was completely exhausted from only a few hours of sleep the night before.

If there is one thing, I hope to keep with me from all this, it would be that even if something has knocked me down, I need to get up. Otherwise, I might lie there too long, and be too trampled to actually get up.

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My untold story – Part VII

The overall support and love that I have felt at this time is very palpable from family and friends – each person demonstrating these very differently yet effectively. I don’t think words will ever be able to express my gratitude. As difficult as this new diagnosis is for me, I know now loved ones struggle with it, too. Recently, my mother opened up to me about how difficult this has been for her. I hadn’t really wanted her to tell too many people because I don’t want people looking at or treating me differently. As much as I need a support group, so does she. I cannot deprive this of her, especially since she no longer can share things like this with her mother because my grandmother has Alzheimer’s. Speaking of my grandmother, that is one person that I had to tell about my diagnosis myself, even if she didn’t know who I was or what I was talking about. It was an emotional day for me and this was the one time that I broke down while telling someone about my MS. She just nodded and made some noncommittal noises, but for my sake, I believe she understands.

Family and friends just seem a lot more important these days. Therefore, I wish there was some way I could help ease everyone’s fears and worries, and reassure them that everything will be O.K. Perhaps this is where my drive to complete the Chicago Marathon came, I wanted to prove not only to myself, but to everyone around me I am strong. I signed up for the 26.2 mile run the day I was diagnosed. It was a personal achievement I wanted to complete since being on cross county in high school, but nothing motivated me to train for it until the fateful day. Not only did I run all those miles, I ran for charity – Children’s Memorial Hospital. Maybe through my support, I helped change one child’s life so they can get better, and don’t have to live a life of fear about their health. In addition, those little kids are so strong and positive, that the inspiration was endless and kept me going on those long runs. Most importantly though, the Chicago Marathon was my chance to prove to myself that I can take on any challenge presented to me and accomplish it, even if I have multiple sclerosis. Even though at the time of diagnosis my life felt flipped upside down,  I fight through the aches, pains, at times negative thoughts, and fatigue because LIFE IS GOING ON.

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My untold story – VI

I am sure a lot of different thoughts and other events relating to my disease has occurred since telling those I am closest with about my MS, but currently they remain in my mind only as in a dream like state. One day I am sure that these first few months of diagnosis and support will be those that meant the most to me. There are days when I feel like I talk about it too much to friends, and that no one really wants to hear about the emotional stresses that an unpredictable diagnosis does to one’s mind. Then there are those days when all I want to do is get all my fears out, and maybe if they are no longer trapped inside my head they won’t be able to occur. I never thought I would be in a situation where I felt so helpless (I lost control, and have no way to regain it).  Currently, my hand bothers me at times, but that isn’t what makes getting through each day so hard. It is fighting with myself that I will be fine, and I will lead the life I always dreamed of as a child.

I could wake up everyday with a dread that something unpredictable and horrible is going to happen, maybe that morning I won’t be able to walk, or talk. However, it is just as easy to wake up every morning in fear that you will be hit by a bus. At least now, when I have some unexpected pain, or inability to perform easy muscle functions, I know the cause. I still find myself mentally fighting daily over little comments someone might make that just throw me into self-pity, but like I said I am fighting. I will not allow myself to get depressed over a medical condition. If anything, I am trying to live more. Last year, My boyfriend and I planned a 7 day road trip to Colorado. Where hiking was the major option and attraction. I may not have wanted to endure such a physically demanding vacation before April 2. The chance to visit and explore Rocky Mountain National Park was amazing and absolutely breathtaking. Looking through a positive lens each day, and tackling obstacles and fears helps to remind me that I am an overall healthy 23-year old woman.

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My untold story – Part V

The hardest part for me came next: telling loved ones about my MS. It did not start so well. I was sitting on my good friend’s couch talking with her before leaving for a John Mayer concert. It started innocently enough asking if she knew what was going on with my hand, etc. It shortly took a turn for the worse. In the next instance, I recall the words blood, spinal cord, and brain coming out of my mouth. What was I saying? This isn’t the way you ease a friend into knowing you have MS. Eventually, after even more scary statements about the disease that probably aren’t completely accurate, the words (or should I say letters) came out. Surprisingly, my eyes stayed dried, and I tried to reassure her that everything is OK and there was no need for her to worry. I have a feeling she still worries, but isn’t that what friends are for to look out for you sometimes. (I apologized a few days later for the manner in which I told her about it all, but I still regret the way that conversation happened.)

Realizing my mistakes, I made a plan for telling other people. I would go straight from my hand to the diagnosis. No need for explanation until they processed the information, and needed their questions answered. However, I still don’t know if the settings I choose to tell my other two good friends were the greatest – a chipotle and a diner. (I guess it is just easier for me to say hard stuff while I am eating.) The second friend, a biology major, understood the disease, and asked a lot of scientific questions. Most of which I had the answers to, but I did not – and still don’t –  completely understand MS, so I was unsure about how to respond at times. She did ask one of the most difficult questions that I still deal with everyday since: Are you scared? At that point, I told her no that right now nothing too bad had happened and the doctor even had said it was a slower progressing form of MS. Soon after though, that question enters my mind almost everyday. Yes, I’m scared. Some days I’m scared of the unknown, and other days I’m scared of being judged. There are other days when I am scared that I am changing my identity around this recent diagnosis. I know though that I have friends, in particular this one, that ask the tough questions, and actually listen to the response. After dinner, we ended up at Target, and the night reminded me of our time spent together in high school – easy, fun, and meant to be. The next day I was instant messaging with this friend, and I truly realized how much the night before meant to me, and our friendship.

With the last friend that I told, I had previously mentioned that one doctor suggested MS. It was easy enough to get the conversation started after our waitress brought us our food. My friend asked a lot of questions because I left it very open-ended, and I felt comfortable answering what I could. She asked about my family, and how they were taking the news. In reality, I didn’t completely know because everyone had been being really supportive through it all. Putting up his/her tough guy face to support me.  All my closest friends knew now, and no one came across overly sympathetic, which was my biggest fear. Life went on.

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My untold story – Part IV

April 2, 2010, I sit in the waiting room of the neurologist’s office with my mother, father, and boyfriend.  Of course, the doctor is running behind, and my appointment time comes and goes. Finally, he emerges and I ask if they can all come with me. From there, only a few moments remain prominent in my mind.  He asks for my MRI discs and inserts them into the computer. He clicks through the pictures, and keeps talking about my car accident and the spine. I keep thinking get to it, I have read the report I know. At one point, he even clasps his hand together to show me how the spine works, but I couldn’t hear the words. Now he is done looking at the pictures of the spine, and the image of my brain comes up. He points out some white spots, and begins to finally give the diagnosis that unknowingly impacted my life for the past six years. He finally said it, “you have multiple sclerosis [MS].” He goes on to explain that the MRI showed it almost as a no brainer (no pun intended). The “Dawson’s Fingers” and even a gray spot showed the disease unmistakably, relapsing remitting multiple sclerosis. A blood test would later confirm it wasn’t an MS imitator. The diagnosis I knew in my heart of hearts was coming that day now clearly stated. I held into together. (I cried when I read the MRI report days before). I looked around the room everyone else was calm too.

The doctor went to explain other stuff (all a bunch of jumbled words now). I do recall asking if I could run the Marathon. His answer was yes, but that people with MS get tired more easily. I was concerned about my social life, as well. So I asked if I could still drink. In an attempt to be funny he said, “Drinking is bad.” It wasn’t funny, and no one laughed. He quickly said that drinking would be fine. The crying in the doctor’s office came when I misheard something he was saying, and asked about my brother. The tears came not only for myself, but out of fear that my brother could face the same problems as me. My dad rubbed my back, as the neurologist fumbled around looking for something I could use to dry my eyes. Gauze pads were his idea of a solution. The tears dried and the appointment wore on as he described treatments, etc. I left with a bag full of information, and emotional confusion. Life went on.

I knew even before I went to that fateful appointment that I no longer wanted to see that particular neurologist. He just didn’t ever make me feel comfortable. As I returned home, I looked up the doctors, experts in MS, that he suggested for a second opinion. I googled each, and decided I liked how one in particular looked, and that he practiced at the University of Chicago, one of the best hospitals in Chicago. I imagined I would not get an appointment for quite some time, but after a long time on hold the receptionist offered some fantastic news. There was an appointment available that upcoming Monday. I jumped at the opportunity.

My appointment with the new neurologist confirmed the diagnosis, but I left this appointment feeling more at ease with MS. I don’t know if everything was starting to settle, or if I just felt more comfortable with this doctor. He was actually funny, and seemed concerned about the cost of medical tests. I left with even more options for treatment, and more questions answered. Life went on.

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