November 18th, 2011

On November 18th, 2011, I was diagnosed with Multiple Sclerosis. Even though I received the diagnosis on the 18th, I had exciting plans in place for the 19th, which my parents did not want to ruin for me. On the evening of November 19th, my parents sat down with my brother, sister, and myself and explained the doctor's diagnosis.  At first, I subconsciously blamed myself. I thought that I had somehow caused the diagnosis- as if I had even wished for it. For many months I had wished I would get a diagnosis of something just so the mysteries would be solved. I asked my siblings to leave the room so I could talk with my parents alone.

With tear-filled eyes, my parents and I discussed what the diagnosis of MS would mean for me. The scariest part for me, was the though of the needed medications to prevent progression of the demyelinating disease.

The weeks following my diagnosis, my thoughts were filled with question and disbelief, and I continuously reminded myself that I have MS. I continued to work through the emotions while discussing the possibilities for my future with my mom and dad.

Not long after, I visited my new neurologist to learn about medication options. He explained the options to me; daily, 3x/week, 1x/week, or 1x/month injections. Of course, each medication had their own unique side effects. The thought of giving myself injections scared me. I had been poked by hundreds of needles in the last 14 months, that I did not want anymore. I prayed for weeks that I would not have to go through the pain and emotional stress of learning how to administer self-injections.

In late January 2012, my parents informed me that my medications would arrive that day. My eyes immediately filled with tears as the thought of an injection every day became reality. Upon arriving at the doctor's office, the nurse, whom my parents and I learned to love and trust deeply, showed me, and allowed me to practice giving an injection into a piece of foam. Then finally, it was time. It was time for me to receive my first dose of Copaxone. As I lifted my shirt to receive the injection on my stomach, my dad begun to cry, as he looked at my terrified face and said with a disappointed, frustrated, and worried look on his face, "I'm sorry. I love you." Then the needle punctured my skin, and the liquid entered my body. I experienced a burning pain at first. We stayed at the doctor's office to ensure no difficulties, and then left for home. My routine of injections had begun.

In late January 2012, my parents informed me that my medications would arrive that day. My eyes immediately filled with tears as the thought of an injection every day became reality. Upon arriving at the doctor's office, the nurse, whom my parents and I learned to love and trust deeply, showed me, and allowed me to practice giving an injection into a piece of foam. Then finally, it was time. It was time for me to receive my first dose of Copaxone. As I lifted my shirt to receive the injection on my stomach, my dad begun to cry, as he looked at my terrified face and said with a disappointed, frustrated, and worried look on his face, "I'm sorry. I love you." Then the needle punctured my skin, and the liquid entered my body. I experienced a burning pain at first. We stayed at the doctor's office to ensure no difficulties, and then left for home. My routine of injections had begun.

For the next 16 months, I learned how to manage the pain, bruising, and lumps formed on my skin from the medication. On many occasions, the pain was too strong to tolerate, and I would hold my arm, leg, or stomach in an effort to ease the pain.

But on March 27, 2013, my prayers had been answered. A new oral medication was approved for MS treatment; Tecfidera. I was no longer faced with the reality of painful injections every night. I could  say goodbye to those needles, and take two pills every day!

Many events and opportunities emerged after I learned of my MS. Stories and pictures will be shared in coming posts.

    

A Year of Questions

Have you ever had your foot fall asleep? Not the tingly-needle-poking kind. More of the "numb" feeling? On September 9th, 2010, I felt that numb feeling in my fingertips. I remember riding in the car with my mom, and telling her about the weird sensation. We looked at each other and wondered what may be going on.

But the next day, that feeling had spread to my whole hand. Soon enough, my whole right arm
felt as though I had a thick sleeve and glove on it. I went to a few doctors about it. None of them could come up with any explanation for this unusual feeling. That is when I had my first MRI. At that point, I had braces on my teeth. When the doctors tried to "read" the MRI images, it was quickly discovered that there was a huge reflection from the metal in my mouth, and the MRI images were unreadable. The doctor figured there wasn't anything on the scans anyway, and dismissed it as "teenage anxiety." Ha!

Two weeks later, the strange sensation subsided. My family decided to take a camping (okay, okay, we were in our RV. But we went to a campground! That's still camping...right?). As we arrived at the campground, I began complaining about pain in my hand. The next morning, I woke up and my whole body was tingling, head to toe. The kind of feeling when your foot falls asleep; this time the tingly-needle-poking kind. My parents suggested I sit outside in the sun to get some vitamin D. I just wanted to sit in bed, sleep, and not move.

The following day, we ended our camping trip a little early. We were about 30 minutes away from my grandparents house, where we decided to have lunch. Upon arriving at grandma and grandpa's, I went immediately to the couch. I pulled out my homework to try to get some done, but soon realized I was having difficulty reading. The words were jumping all over the page. My dad looked at my eyes, and saw them "jumping." The best way I can describe what I was seeing, is to reference those old scrolling televisions. This resulted in a call to the doctor, who said they could see me in 3 weeks...we all decided that was too far away, and I needed to be seen sooner than that.

I stayed home from school the next day. A family friend who used to be a nurse told us to go the emergency room at the University of Minnesota. As soon as we got there, numerous doctors, nurses, and medical students filed in and out of my room to try to figure out what was going on with me. Finally, the consensus was to have me spend the night in the hospital and have a lumbar puncture the following morning- Ouch!

The lumbar puncture didn't show anything, and I seemed to be improving, so I was discharged from the hospital after a two night stay. However, the neurologist ordered another MRI, which meant I had to get my braces removed four months early. The day after being discharged from the hospital, I had my braces removed, and had an MRI.

Wanting to be a normal teenager, I went to the middle school dance directly following my MRI. I was greeted by my best friends, and warmly welcomed by my teachers. It was great to see such friendly faces after being in a hospital room for a couple of days.

It was this MRI that finally brought answers to my strange symptoms. I had a single lesion in the center of my brainstem. No other lesions were visible, so I was diagnosed with Acute Disseminated Encephalomyelitis, or ADEM. Another name they gave me was Clinically Isolated Syndrome. In other words, they still didn't know what was going on with me, and this label seemed "good enough."

Things seemed to be going alright, which lead me to try to return to school. As I prepared for school, I noticed a strange sensation in my lips. My lips almost felt cold, and numb. Luckily, I stayed home from school, because only a few hours later I found myself back in the hospital. The neurologist put me on high dose steroids (1 gram per day) for 5 days. The neurologist showed us the lesion on the MRI, and we finally had an idea of what we were dealing with.The next 14 months were filled with dozens of doctor appointments, weekly occupational and physical therapy, and little to no school. I missed almost the entirety of my 8th grade year of school. Some friends came to visit me at home, which I was grateful for, however, many friends were too afraid of my condition. They were afraid I would be too tired or dizzy, or in too much
pain to visit.

On my birthday in July, I can remember wanting to go water tubing with my cousins, but being in too much pain. I didn't want to move my arm due to the intense pain. Eventually, the pain subsided, with a brief appearance on occasion for the next few months. However, the pain returned along with severe headaches in November, and I returned for another MRI. What this MRI showed changed my life forever.

My Childhood with the MS Society

Looking back, many of my memories are filled with MS Society events. When I was two years old, roughly 10 months after my dad was diagnosed with MS, I began volunteering. My mom would bring my older sister and I to the finish line of the bike events to cheer on the bikers as they accomplished their goals. We would often stay until the last biker crossed the finish line.

I remember biking the Twin Cities Ride (formerly known as the 60/30), from a very early age. I can remember sitting on the "co-pilot" bike behind my mom or dad. One particular year stands out, as I recall it was very rainy. With each mile I (my mom) biked, my face got muddier and muddier! The mud from the trail was splashing up onto my face! By the time we finished the 30 miles, I had a reverse skunk stripe up my front, and my back!

When I was in second grade, my friend Allie, her mom Lori, my mom, and I decided to help with the Saturday lunch stop during the 150 Bike Tour. We watched as a refrigerator truck pulled up to the rest stop. "Hey, do you want to help me unload this truck?" The truck driver asked us. We were all eager to help! SO, the four of us together (two 8 year olds, and their mothers) unloaded enough water, food, snacks, and various supplies for 3000 bikers and volunteers. I felt so proud!

When I was in sixth grade, I became the captain of the "Monkeys Team of the Future" Walk MS team. I had just started at a new school, and wanted to show my new friends and teachers how much fun it was to participate in MS events! The first year I had roughly 30 members on my team. By the fourth year (2013) our team consisted of 52 members (can we reach 60 this year?)!

The staff and volunteers at the MS Society are amazing. In many ways, they have been a part of my childhood. My memories are filled with the pictures of friendly, and even family-like faces of those staff and volunteers. As I look back at these events, I am constantly reminded of the love, dedication, care and support from the MS Society. Every time I see MS staff, I am greeted with joy and enthusiasm. They have a special way of making me (and many others) feel important. Perhaps this is because we share a common goal: Ending MS.

How I Became Involved

My family first became involved with the MS Society in 1998, when my parents rode their first MS 150 Bike Tour. After many invitations from church friends John and Jenny M., my parents joined team "Blazing Saddles" in honor of Jenny M.'s mother who had been diagnosed with Multiple Sclerosis. With no knowledge of what MS was, my parents raised a few thousand dollars, and were simply enjoying spending time with friends.

When I asked them what they remember most about that weekend, my mom answered that, "everyone was very friendly. Volunteers, bikers, and MS staff all had positive personalities." She also noted that the weekended consisted of perfect biking weather for the hundreds of bikers traveling from Duluth, MN, to the Anoka County Fairgrounds (near the Twin Cities).

Nine weeks later, while attending a family camp, my dad woke up with effects which appeared to be the result of a stroke. He noticed slight numbness in the left side of his face. Friends offered suggestions to why this might be. "Maybe you slept on it funny" was a common suggestion. However, this feeling persisted and increased as the day progressed.

By the next morning, the left side of his face was significantly worse. It felt very numb, and he had intense difficulty forming words, as he had little to no control of the muscles in his face. This startling phenomenon lead to a trip to the emergency room for my dad and my mom.

While at the emergency room at Mercy Hospital, a CT scan was performed. A doctor informed my parents that my dad had two lesions on his brain indicative of MS. My parents were frightened, confused, and unsure of what may lie ahead of them. At this point, neither of them knew what MS even was! The doctor then gave them a referral to a neurologist, whom they saw that afternoon.

The neurologist suggested a visit to the local MS Society chapter, which happened to be in Minneapolis. He gave them a few brochures about MS and the three medications available: Betaseron, Avonex, and Copaxone.

The thought of visiting the MS society initially scared them. Each person my parents met whom had MS was in a wheelchair, had very progressed MS, or both. Would my dad end up in a wheelchair? Would he be able to work? Would he be able to spend time with his two young girls? How long would he be around?

The answers to many of these questions were answered almost immediatly upon entering the MS Society. As they walked through the doors, they were greeted by a regular volunteer, who had MS. They were surprised to see that this woman was not in a wheelchair, did not have trouble with her speech or motor skills, and did not appear to have MS! She informed them that she had been living with MS for nearly twenty years. This one statement gave my parents emmense relief. Seeing someone whom had been living with MS or so long doing so well, was inspiring.

Purpose of This Blog

I wanted to start this blog to tell a little about myself, my story with MS, and give some helpful informational suggestions.
My name is Emily Blosberg, I am 17 years old, I live in Minnesota (yes, the high temperature for tomorrow is -10 degrees), and I have Multiple Sclerosis.

I am creating this blog to spread awareness of Multiple Sclerosis to everyone, but especially to people under the age of 25. If you are under the age of 25 and you have MS, I want you to know that you are not alone! There are (too) many teenagers or people your age throughout the country who are going through the same challenges as you.

I hope to update this blog every other week, if not every week. Please feel free to read, share, and comment on this blog. I would love to hear your stories too!

I know this is a short post. I promise future posts will be more interesting and longer.

Logging off for now,
Emily