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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My Untold Story – Part III

After that prescription for the cervical spine, the saga with the receptionist at the neurologist’s office began. When I first started writing down, my MS story the back and forth with the doctor’s office was so painful, and I think some of my initial frustrations of the disease may have been misplaced. Therefore, I am only going to try as accurately as I can recall (It was just over a year ago this all occurred) list just the facts.

The neurologist had 2 offices – I will label them 1 and 2 to distinguish. It gets a little confusing.

  •  Called the hospital to schedule the MRI, and they said I needed an authorization number from my insurance, and said to get that from the doctor’s office.
  •  I called the neurologist’s office (1) and put in my request. I waited, about a week, and called back. She didn’t have the required number, but the next day she was able to provide it.
  • Made appointment for MRI 3/6/10
  • 3/6/10 – MRI completed00
  • 3/09/10 – Hand specialist wanted copy of the MRI report
  • 3/11/10 – Called Neurologist office (1) did not have the report
  • 3/17/10 – Received certified letter from neurologist office stating he tried to reach me 3/8 and /9 with no luck. Enclosed a prescription for post contrast MRI brain and cervical spine Immediately called office (1) neurologist is on vacation and was told no reasoning was left as to why the doctor prescribed new MRIs
  • 3/19 – Called back neurologist office (2) to see if they had received the MRI report to give to hand specialist. Said no so I asked if I could speak to someone about the note I received and I told I would need another authorization # for the prescribed MRIs. I receive the radiologist report I had been trying to get.
  • 3/20 – Tried to schedule the MRIs appointments but was given an old authorization #
  • 3/22 – I called office (2) and they said I would have to call office (1) to get a new number
  • 3/22 – Call office (1) no record of prescription in file will have to see what she can do
  • 3/23 – Nurse from neurologist office calls no info in file except the note the neurologist sent me
  • 3/24 – Office (1) calls says can’t get authorization # w/o more info so I fax her my copy of the MRI report.
  • 3/25 – Nurse calls back and says there is a suspected lesion on C2 and the doctor wants further testing to confirm. Office (1) calls with new MRI authorization #. Schedule appointment for testing a hospital. Call office (2) to schedule post MRI appointment made for 4/20
  • 3/28 – MRIs performed
  • 3/29 – Call office (2) saying I had prescribed MRIs completed and ask if I need an earlier appointment. They put me on Nurse’s list for call back
  • 3/30 – Had not received phone call from nurse. Called office (1) asking the same question as when I called office (2) the day prior. She said she would talk to the neurologist. Didn’t hear anything that evening called again said I would have to try in the morning
  • 3/31 –  Spoke with office (1) she was surprised no one had called said would speak with the MD directly. Later that day I received a phone call from office (1) saying I needed to come in as soon as possible. Made an appointment for 4/2 and was told to bring all MRI discs
  • 3/31 – went to the hospital to receive my disc which were given to me w/the radiologist report which read “The appearance of the cord lesion in the context of perientricular white matter lesions seen on concurrently obtain MRI examination of the brain is most consistent with a demyelinating process such as multiple sclerosis”

I remember reading that sentence in the hospital parking lot and just breaking down into tears. Almost 3 months from the onset of my original hand pain, I had an answer. Of course I still had my doctor’s appointment in 2 days. The next part of my story will further explain that appointment and how my life went on.

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My untold story – part II

The saga continues in part II …

Winter 2007, a pain and tingling in my fingertips won’t desist. No, it isn’t frostbite. In my typical fashion of dealing with any kind of medical problem, I let it ruminate until all I can do is complain. Seeking advice, I asked my father what he thought. Of course, he said that if it was that bad I should see a doctor. With finals approaching and the multitude of projects and papers that accompany the end of a semester, I put the medical visit on hold. I finally decided to go to an emergency care clinic because the pain wasn’t going away, and I had time. The doctor tested me in various ways. I touched my nose, I touched his finger, I pushed against his hand, I refluxed, and I walked. He had the nurses take some blood, and told me to take up yoga and deep breathing – I was stressed. Wow, I did not think taking a full class load and working part time would do that to a college student. Well, life went on.

The finger tingling and pain eventually subsided, well, until December 2009. I can’t recall the exact date it came back, or where I was, but I felt it again in my right hand. I took some advil and tried to move on, but on Christmas Day, the pain was excruciating. I remember taking a bag of frozen peas out of my grandma’s freezer to do anything to make it lessen. Every family member had a theory with the leading one being carpal tunnel. Even my uncle who is a rheumatologist swore it was from typing on my computer at work. I took his advice. I wanted relief so I went and bought a brace, and wore it religiously. A week later, it was New Year’s Eve, and I was out partying with my brace. I couldn’t work my hand properly as I was eating or hooking my bra. I recall all my friends say take off the brace – thinking the problem was that my brace was hindering me. The problem wasn’t the brace (I knew that full well) my hand just was not strong. It tingled and hurt, and the motions were not those exactly as I commanded. I told my mother enough is enough. I need to go to a doctor.

She has a hand specialist because she fell while walking the dog in 2004, and dislocated a finger or something (in the end the results of numerous surgeries is a hand that looks and acts like a claw). We thought it would be best to start there because I had no luck in the past trying to find the source of my hand problems. He agreed with my rheumatologist uncle and told me I had carpel tunnel, but wanted to verify by testing my nerves. He ordered an EMG – electromyography. Two weeks later, I arrive at the neurologists office. He goes in and out of the room several times, as all the stuff for the test isn’t in the correct room, and asks probably five times if it is too warm. He zaps me over 100 times with his little electrical wires, each time after the 50th saying just one more. He proceeds to poke me and tell me to remain calm as he is causing pain. The results – he sees no signs of carpel tunnel. Luckily, I had started to think back to December, I remembered that I had been rear-ended around the time the pain first started. As I told the doctor about this incident, he asked me several questions and thought it was best that I get a cervical spine MRI – magnetic resonance imaging – done just to rule out spinal injuries and a pinched nerve. This begins my dealings with my first neurologist’s office staff and a separate entry to follow.

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My untold story – part I

After being diagnosed with MS, I began processing the disease in the only way I knew how by writing.  I have broken down my experiences and hindsight into seven sections. Today, I will give you the first installment. I hope you enjoy.

My untold story.

ACT testing day, a huge moment in a high school junior’s life. For me, this day now represents more than a determination of which college I would be eligible to attend, but the start of a disease that would take years to diagnose. What I remember comes across mainly fuzzy, but with a small sense of clarity. I was choosing one of those dreaded letters A, B, C, or D and my hand would not cooperate. It wasn’t shaky, or painful. I just did not have the control that you master when you are three.  I completed the exam without the hand problem affecting my overall results, I scored one point higher than the previous time I sat for the test. However, upon trying to explain what happened to my parents, it was like trying to nail into a piece of cement, not going to happen. Life went on.

Later that year, I was privileged enough to travel with my French class to France. The scheduled 10-day voyage would test our language skills, and provide us with memories of a foreign land to cherish. I was so excited for this July trip that I wrote off and hid my small bouts of dizziness, believing I just needed to take better care of myself. I was also having trouble walking; my left leg felt like it was dragging, and I sometimes had to focus very hard to make it work naturally. Again, explaining this to my parents seemed like explaining calculus to a five year old. So I wrote it off. That is until, the day before the trip I was so light headed I passed out (not long, just enough for a scare). My dad took me to the doctor who, after performing some typical neurological tests, believed it was best if I go and get a CAT scan, and have some blood drawn. I remember the drive vividly from the doctor’s office to the ER. Tim McGraw’s “Live Like You are Dying” played on the radio, and the tears flowed freely, as my mind raced through possible scenarios, and my father explained the situation to my mom. All I wanted was to travel with my best friend to explore a culture I had learned so much about, not be on my way to find out something was seriously wrong with me.

We got to the hospital, and I was brought back to a large machine. I laid flat on my back and had to look up at a cross (at least this is what I vaguely remember). The test did not seem to last very long, but the waiting felt like it was forever. The doctor cleared me before we left the hospital, and off to dinner we went. I was still waiting for the blood work results to come back from my doctor, but the biggest scare was through, or so my family thought as we ate dinner, laughed, and carried on with life. The next day I boarded the plane to France with some extra granola bars, because the diagnosis was that I needed to eat better, and more often. Life went on.

Have you ever been to an amusement park on those hot days where the sun melts you? Picture me standing in line waiting about 40 minutes for one of the best rides in the park. Super excited, and pumped to be getting pretty close to the starting gate, I couldn’t let on to my friends that I wanted to get out of line and buy some water. What kind of amusement park goer would I be? Instead, the voices swam around my head into a high-pitched whistle, and down, down, down I went. The next thing I recall is this very kind woman offering me water, and it being poured over my head, and my then boyfriend of less than a month whisking me out of line and onto a bench. My other friends ran to find me a sports drink as I regained stability. After everyone felt that I returned to normal, we trekked on and rode all the rides, especially the one where we had to get out of line. There was some concern when I arrived home, but we all assumed I was just dehydrated. Life went on.

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