4 Years

Four years ago today, I woke up with numb fingertips. I was on my way to the orthodontist with my mom, when I mentioned to her that my fingertips felt "weird." 

Weird was the word I used to describe many feelings in the last four years. I simply could not think of a better word to use. Sometimes my vocabulary included; tingly, sensitive, itchy, burning, cold, achy, painful, tired, and fatigued. Of course, over the last few years I have come up with my own words describing how I am feeling. Some include; ookey, blah, pooky, icky, "don't touch me!" and "I'm too tired to do anything." My mom and I have started our own language. She knows what I mean when I say I am feelin ookey vs pooky, or when I am feeling blah. It's actually kind of funny!

In 8th grade (2010-2011) I missed nearly the entire year. As you can tell by today's date, my symptoms started at the beginning of the school year. September 9th, 2010. Eighth grade included two hospital stays, weekly occupational and physical therapy, countless doctor appointments, visits to the Mayo Clinic, 4 MRIs, etc. It also included visits from friends, encouraging, supportive, accepting, and forgiving teachers, earning the "Youth Volunteer of the Year" award with my siblings, remaining the Student Council President, taking a trip to Seattle with my parents, and learning how to live my life to the fullest.

9th grade (2011-2012)  was an eventful year in many ways. 

August: Welcomed Amanda to our family from Denmark

September: Started my freshman year of high school at AFSA High School taking 3/5 classes

October: Spent a lot of time at home; I was too tired, and felt too "blah."

November: I had an MRI on November 17th. On November 18th, 2011, I was diagnosed with Multiple Sclerosis. However, I was selling my sock monkeys at a craft fair on November 18th and 19th, which my parents wanted me to enjoy. I did not learn about my diagnosis until the evening of November 19th.

December: Realizing that I have a potentially life long disease. I went to the doctor to learn about the therapy options available. I had to make the hard decision of choosing which medication I wanted to be on. I had to choose between the side affects, how often it had to be injected, and what the doctor though would be best for me.

January: I anxiously waited, and dreaded the day my medicaiton would arrive. It arrived around the middle of the month, and thus began my Copaxone journey. Matt (or MS nurse) walked me through setting up the "AutoJet" and how to prepare my injection. He showed me where to inject myself, as I cried. I was angry. I didn't want to cooperate. I didn't want to move. I did NOT want to have to give myself daily injections. My dad gave me my first injection. As he sat with the tip of the needle pressed against my skin, his eyes filled with tears. As he gave me my injection, he whispered "I'm so sorry. We didn't find the cure fast enough. I love you."

February: We welcomed Philippe to our family from France! Yes, we now had 7 people in our house. We were (are) kind of crazy.

March: Jenna from the MS Society emailed me asking if I wanted to be the Bike MS 150 ambassador. I was honored she thought of me, but terrified at the same time. I had not told any of my friends at school about my diagnosis. I was afraid I would be treated as "the sick kid." Being the Bike MS ambassador, would include creating a video, talking to the press, and speaking at the MS 150 (on stage, infront of a few hundred people). I accepted to invitation, thus began my passion for public speaking.

April: The video was finished. My school holds a monthly meeting where announcements are made, games are played, etc. I thought about making an announcement about the MS Walk. I though about showing the video. But showing the video, meant the WHOLE school would know I have MS. I was afraid. I decided last minute to show the video. The video played, and I confidently walked on stage. I told them who I was, and what I go through every day. I explained my fear of being treated differently. I ended my announcement with the statement "I am not asking for your pity, I am just asking for your support." I walked back to my seat, with a standing ovation leading me. How cool! At the end of the school meeting, I had students coming up to me just to shake my hand, tell me about their own illness, or hand me money as a donation. This was one of the most exhilarating experiences of my freshman year. (click here to watch the video mentioned above: www.youtube.com/watch?v=eIvrGxm7d9Y) 

May: 30 people joined me on the MS Walk. Over the course of the month, I spoke on Fox 9 news, WCCO (http://minnesota.cbslocal.com/2012/05/03/walking-for-multiple-sclerosis-side-by-side/), as well as a radio station in Duluth. I was becoming more and more empowered to share my story each time. Something inside of me lit up each time, and my diagnosis became easier and easier.

June: Sarina (our first exchange student from Germany), surprised us a week before Jessica's (my sister) graduation! Jessica graduated, we had an AWESOME party, and enjoyed spending time with friends and family. Jessica also left for Beijing a few days after graduating for an 8 week internship! The following weekend, was the MS 150. I was able to share my story with many bikers and volunteers, and learn about their stories as well. It is touching to hear how similar yet different everyone's story is.

July: My parents and I went to Europe to visit all of our exchange students! What a fun month!

August: Jessica returned home from Beijing, and we also welcomed Saskia to our family.

10th Grade (2012-2013) definitely had its ups and downs. Some high lights and low lights include: speaking at the Minnesota Twins Diamond Awards, receiving the Youth Volunteer of the year award from the MS Society, missing nearly an entire trimester of school, traveling to the Grand Canyon over winter break, and enjoying a visit from Saskia's family in April. In March of 2013 I was able to meet 4 other teenagers around my age living with MS. My dad and I traveled to Sioux Falls for a weekend to meet them. It was nice being able to share stories and experiences with one another. In addition, in March, the oral drug, "Tecfidera" was approved by the FDA! I was able to start on Tecfidera in April; we celebrated with a cake! No more injections!

11th Grade (2013-2014) was a good year. I was asked on my first date, and had my first boyfriend. I missed only a few weeks of school during the entire school year. This was also my first year as an "only child" at home! With Jessica off to her sophomore year of college, Peter living in a group home, and no exchange students in the house, it felt kind of lonely!

12th Grade (2014-2015) Has already been off to an eventful start. More on that later.

Teen Adventure Camp day 4

Day 4 of MS Teen Adventure Camp was an educational, relaxing, fun, and crafty day. Following breakfast, two professional yoga instructors came in and led us in a 90 minute yoga session. This session was most definitely the best yoga session I have participated in. The instructor was aware of our fatigue, and did not push us to hold difficult positions. Instead, we mainly focused on easy stretches, muscle building, and breathing. I was amazed how relaxed, and energized I felt afterwards!

We split into four groups and rotated to our "mentor led discussions." The four topics were education options, relationships, coping, and knowing your limits. Many of the things people said, were very relatable. For example: some of my friends at school do not think I deserve the good grades, and happiness at school, since I am never there. They think I get everything I want because I am sick. Wrong. Instead, they don't see the work I am doing at home to keep up with my class; the emails I send to my teachers to build relationships and get assignments, and the extra classes I take in order to graduate with my class. Another example is from the "knowing your limits" category. We all have to be sure to find a cool place away from the heat. Or ask our friends to slow down when walking from place to place. 

The afternoon was filled with crafts. Three people from Artists' Exchange came and led the groups in activities including giant Jenga, musical/creative writing, and creating mosaics. Jenga was particularly challenging for some, as we not only had to balance ourselves, but also the growing tower. 

For dinner, we had a "carnival" consisting of a barbecue, and informational stations. There were tents set up from areas such as: self advocacy, therapy dogs, nutrition, humor, accessible sports, and exercising. Some professionals came to share their area of expertise (i.e. nutrition), and some were led by camp staff. It was fun learning about the resources available, and how we can utilize our resources and knowledge. (bubblegum blowing contest pictured below)

Our day ended with a discussion focused around "the box." The Box, is a box of anonymous questions from campers throughout the week. As each question was read aloud by a staff member, campers, mentors, or staff members could help answer the question, and contribute to the conversation. Many questions were related to "are my kids going to get ms?" or "what is the probability that my siblings have ms?" or a lot about genetics. Unfortunately, there is still a lot of gray area when discussing the genetic factor of MS, but research is being conducted. Hopefully we will have answers to those questions in the near future. 

One of the last questions asked, was "If you were given the option to go back and not be diagnosed with MS, would you?" To my surprise, every person answered with a "no." Many explained that their MS helped them grow as a person; they had to become mature much faster. Some questioned who they might otherwise be? One shared how she appreciates her "MS Perks" or accommodations, and many said that Multiple Sclerosis is a 'Blessing in Disguise.' 

It was fun seeing the excitement and passion in the room. Most people participated in the discussion at one point. Everyone was able to learn, and teach to the rest of the campers. 

Teen Adventure Camp day 3

Last night after dinner, we gathered for our "Med Discussion." This was an opportunity for the campers to ask questions about the MS medications available, their side effects, as well as make suggestions for each other about managing symptoms, or compare experiences. It was really neat to see everyone interacting with the group. One person even recommended a neurologist for a girl who is moving! How neat! 

One of the girls in our group was recently diagnosed, and really didn't know much about Multiple Sclerosis. Through this discussion, and many questions/answers, we were able to help her gain a stronger understanding of the disease she is living with. 

What is interesting about this camp, is that we all have some of the same experiences, but we have all experienced them differently. For example, one camper was diagnosed with MS when he was two years old; one was misdiagnosed with cancer before her diagnosis of MS; one went completely blind in one eye; one was diagnosed three weeks ago; one gets dizzy on a daily basis. Each of us has our own version of our story. We were all diagnosed with MS at different ages, different times of the year, different lengths of time, and different severeness. 

We don't look like we have any disease, and are told that all the time. "You look healthy!" or "You don't look sick" or "Really? But you look fine!" are all things we hear. Yes, we are fighting a disease every day of our lives. No, we don't show it. MS is one of those diseases you cannot see. We joked about putting a sticker on our foreheads reading "I have MS" that way it would be visual like a cast on a broken arm.

Today, 16 more campers arrived at camp. These 16 campers are returning campers from pervious years. Many know each other, and all are excited to learn about the "newbies." Of course, the "newbies" are excited to learn about the "returnies" too! Most arrived around 4pm, just as we were returning from a day filled with kayaking, swimming, and sun tanning on the beach.

Dinner was filled with friendships being formed, stories being shared, and excitement in the air. I continuously heard others saying "I'm back with my family again!" We truly feel a sense of family while at camp. At camp, we are allowed to put our MS aside, and be ourselves. Everyone understands when a nap needs to be taken, or an ice back in use. No one has to explain to each other why they may be tired in the heat, or why they have poor balance. We all understand the symptoms of MS, and are supportive of one another. 

Tonight after dinner the entirety of the campers, staff, and peer mentors gathered for a team building activity, which also served as a way to get to know each other. I took a second and looked around the room. It was inspiring to see 33 people under the age of 25 in the same room, all living with MS. We come from all corners of the country. From Alaska, to Florida, to Minnesota, to New York, to Texas, to Colorado, and from Connecticut, to Maryland, and more, all in the same place being able to connect with each other. 

This reminds me of what I want to do. I want to continue to see this group, or other groups increase. Not because I want more people to be diagnosed with MS (of course not! Why would I want that?!?!?), but to connect those who have already been diagnosed. I want the girl feeling alone in North Carolina to be able to connect with the boy and girl from New York feeling as though they don't fit in with anyone. No one should feel alone. No one should feel like they don't fit in. This doesn't only go for people with MS, but rather any person in any situation. Everyone has something similar to others. It is just a matter of making those connections.

I apologize for the repetitiveness of the last couple of posts, and for the spelling errors. You must understand that I am writing these posts after very long, tiring, eventful, and exciting days! And I am exhausted! With that said, I am off to bed. More tomorrow! 

Teen Adventure Camp- Day 1-2

Approximately 10,000 of the 400,000 people in the United States living with MS are under the age of 18. Because of this, making connections with other teens is very hard! As of right now, I am the only teen in Minnesota with MS registered with the MS Society. I am sure there are more out there, but I just haven't been able to find them. Part of the purpose of this blog is to help others connect with each other. 

This week, I am in Rhode Island at a camp only for teens with MS. It is such a unique opportunity, and great way to meet others. This program is provided by Stoney Brook, out of New York. We all arrived yesterday (Sunday). In total, there are 9 first time campers (under 18, all have MS), 8 peer mentors (returning campers, older than 18, all have MS), and 11 staff members (many of which have MS). Tomorrow (Tuesday), 15 returning campers will be joining us for the remainder of the week.

As said before, it is very difficult to find anyone to compare stories with, share experiences, or just talk about challenges. I have found throughout the day today, and through talking with others here, that we share many of the same challenges. For example, I have needed a reduced school day since my symptoms started. This is very unusual at my school, and not many of my peers understand that I need the extra time throughout the day to rest. If I do not rest, I will not make it to school the next day, will not complete my homework, and will likely get sick. So far, I have met two other campers who also take a smaller load of classes to manage fatigue.

Another example, is fighting the heat. Heat is one thing that can make MS symptoms worse. The heat affects me by making me tired and dizzy, which can take a long time to recover from. Nearly every person here is fighting the same battle with the heat. Of course, we are in Rhode Island- hot, humid, and muggy. Fortunately, we are staying well hydrated, and are taking breaks often (usually in the air conditioning!).

This morning, we spent a few hours taking part in team building activities. Some of these activities really challenged our abilities, and some pushed us outside of our comfort zone. One activity included jump-roping. I continued to jump-rope as everyone else passed through the rope without getting touched. Unfortunately, the amount of energy I used to jump-rope, resulted in extreme fatigue. But, I was able to go inside, get some water, put on my cooling vest, and rest until I was well enough to join again (it only took about 20 minutes).

 

This afternoon, was spent at an indoor rock climbing facility. It was exhilarating to watch everyone work so hard to overcome their fears, push through their issues with balance, and cheer each other on. One of the campers has strong challenges with balance. However, he was climbing the wall every chance he could! He made it to the top a few times- shaking the entire way. He was working so hard; one step at a time, one rock at a time, as the rest of us cheered from below. He was so proud of himself for reaching the top, as were we!

My free time is nearly over. I will write more tomorrow about my experiences at camp. I am excited to share my stories and observations throughout the week

MS Sylvies

In 2010, my brother, sister, and myself were honored with the "Youth All Star Award" for all of the volunteering we participated in that year. Then again in 2012, I received the
same award.

In 2013, my sister and I nominated my parents for the Care Partner of the year award.

Below is the nomination I submitted:

"My parents, Dean and Andrea Blosberg are completely committed to fighting MS. Even
before my dad, Dean, was diagnosed in 1998, they have been volunteering. 
When I was diagnosed in 2011, and when my symptoms started in 2010, my parents never
stopped supporting me. Numerous doctor and therapy appointments left my mom with
very little time to herself. She continues to give. Although our life has become complicated with family members with MS, and one with FASD, they never give up.

They continue to volunteer, have fun, travel, work, and most importantly, love.
When I have "bad" days, or when my symptoms are limiting me from my activities, my
parents remind me that there will be bad days, and there will be good days. They have
supported me with many accommodations, allowing me to be a normal teenager; most
of these accommodations taking time away from time they need elsewhere.

No, it isn't easy. I don't know how they continue to move forward, but somehow they do.
They are always positive, or adding humor to the situation to make it easier. Having them receive this award would mean a lot to me. I cannot put into words how much I love and appreciate my parents. I truly believe they should be recognized for all of the support they give. 

JOY!
There are many things that give my parents, Dean and Andrea joy. To start, spending
time as a family. Our family has traveled many places and has become very close.

When my dad was diagnosed in 1998, my parents decided that they would live life to its
fullest. They would take my siblings and I sightseeing, camping, or just to a weekend at
the cabin. They did not want to miss out on any opportunity because of MS.

Our pets also bring my parents joy. Our goofy dogs, cats, chickens, and sugar gliders
are always providing love, joy, and entertainment!

My mom, Andrea, also likes to have time for herself. Reading a book, embroidering,
gardening, or coffee with friends are always things she enjoys. Unfortunately, she does
not have much time to do these things for herself as she is constantly caring for others especially me, my siblings, and my dad.

My dad, Dean, enjoys time at the cabin. While there, he enjoys "playing" with his ham
radios, spending time in the barn/garage, and just enjoying the peace and quiet. He too,
does not often have a chance to take time for himself. He constantly provides for us by
working, supporting, and caring for me, my siblings, and my mom."

Jessica (my sister) and I were informed in November 2013 that our parents would be
receiving the award. Together, we decided to keep this award a secret! For 4 months
Jessica and I kept in contact with the MS Society over email and few phone calls away
from our parents. It was easily one of the hardest things I have ever done!

A few weeks before we were to present the award, my mom and dad asked Jessica and
I if we would be okay missing the Sylvies awards dinner that year- NO! We had to
quickly construct an excuse why we should go! Eventually, we told them that we got a
phone call asking if we would present the Youth Volunteer of the Year award.

On February 1, 2014, we met at the MS Sylvies Awards Dinner. My mom and dad were entirely convinced that we were presenting the youth award. As Jessica and I walked on stage, I walked up to the podium and revealed our secret award. A link to the video is below, where you can watch their reaction: Luminary Award 2013

My parents truly deserve this award. They continue to fight, advocate, educate, and
support me, my family, friends, and thousands of people living with Multiple Sclerosis.

The MS Sylvies is an awards dinner received its name through Sylvia Lawry, the
founder of the National Multiple Sclerosis Society. "Sylvia Lawry single-handedly
launched an international war on multiple sclerosis, founded both the National Multiple
Sclerosis Society in the United States and the Multiple Sclerosis International Federation abroad, and who profoundly influenced research, disease management, and public policy concerning this complex neurological disease" (nationalmssociety.org).

Each year at the Sylvies, volunteers, supporters, and sponsors receive awards as a thank you for their support.

Minnesota Medical Foundation Diamond Awards

 Every January the Minnesota Medical Foundation hosts the awards dinner for the Minnesota Twins Baseball team. At this event, a patient is featured to put a face to their cause. The University of Minnesota Medical Foundation supports patients with Multiple Sclerosis, Ataxia, ALS, Muscular Dystrophy, and Parkinson's Disease. In October 2012, my neurologist called me asking If I would be interested in being

My family with Joe Mauer

My family with Dick Bremer

that featured patient at the event. I eagerly accepted, and soon met with the organization to create a video to share at the event.
(click the link to watch the Minnesota Medical Foundation video)

 The event took place at Target Field in January 2013. My family enjoyed meeting many of the baseball players (including Joe Mauer) before the event started, and then the event officially started.

Approximately an hour into the program, the video begun to play. My dad and I started heading towards the stage, with cameras following us the whole way up. As the video ended, I walked to the podium, introduced myself and my dad, and the two of us shared our story as well as thanked the crowd for their support. 

"Emily

 Hi everyone, my name is Emily Blosberg and this is my dad, Dean. My mom, Andrea, my sister Jessica, and our foreign exchange student, Saskia, are also here this evening. 

 Multiple sclerosis has been a part of my life since I was a little girl. I honestly don’t remember a time in my life when it wasn’t a part of our family. And, now today, it is impossible to ignore. I was a kid whose dad had MS. At a very young age, I began to volunteer for the MS Society to help bring

awareness to this horrible disease. As a pre-schooler, I cheered at the finish line as bikers completed the 150 mile tour from Duluth to the Twin Cities. My duties expanded as I grew and I knew I was a part of a unique group of people. But then, just over a year ago this group became a little more personal as I was diagnosed myself. 

Dean 

 As a dad, there is nothing worse than hearing your child has been diagnosed with a life-long condition that will impact every part of his or her life. I knew better than anyone else, what that would mean for her and it was a crushing feeling. 

While MS is very common here in the upper-Midwest among adults, it is not common for children likeEmily to be diagnosed. Andrea and I wanted the best care for Emily so we sought out the doctors the University of Minnesota. My care team is at the University of Minnesota and because of this, we never considered anywhere else for Emily. 

In addition to Dr. Adam Carpenter, who you saw in the video just a few moments ago, we are grateful to another doctor at the University – Dr. Peter Karachunski. It is Dr. Karachunski who compassionately spent over a year with us - trying to decipher her strange symptoms - and who later confirmed Emily’s MS diagnosis. As you heard in the video, when Emily first saw her scans, she knew she had Multiple Sclerosis. Emily had seen my scans before, so she knew what the brain looks like when MS has moved in. Truly wanting the best care for Emily and knowing his own specialty was not MS, Dr. Karachunski contacted Dr. Carpenter as he read Emily’s MRI results. Before he called us, he wanted to have options in

place and a capable colleague to continue the care for our daughter. 

Emily is, by all accounts, a remarkable and inspiring young woman. Pain is a part of her daily routine, as is a debilitating fatigue. Armed with a finite amount of energy each day, she must often choose between school and friends. She has become a remarkable advocate for herself and others with chronic illnesses. Her doctors and therapists at the University of Minnesota have helped to empower her to reach out, educate, and lead in a way not typical of most teenagers.

We both have a team of individuals who are helping us cope and live with MS – yes, we DO LIVE, with MS. We enjoy our family and friends and our children we have hosted from overseas. Most importantly, our family has hope for better treatments and we are certain that a cure will be found. (No pressure) :) 

Emily 

My dad and I have MS, but it doesn’t define who we are. We enjoy every part of our lives, although maybe at a slower pace than many of you and we, too, like the cooler spring temperatures in Florida, as those with MS don’t tolerate heat very well. Thanks to the dollars directed to clinical care and research at the University of Minnesota, our quality of life will continue to increase. (No pressure from me either!)  

I will not go to school tomorrow. I will be too tired from this evening. However, my family and I thought that this was too good of an opportunity to pass up. I have never been shy to stand up in front of a crowd and I especially wanted to share our story with you so you could join our fight. It is my personal mission to educate as many as I can about MS and to advocate for others with chronic and debilitating diseases.

As a way to spread my word and as hand therapy for nerve trouble in my hands, I make sock monkeys. I sell them at craft shows and by word of mouth and I donated one for the silent auction this evening. Over time, the monkeys have kind of become my logo or symbol. Along with my sock monkeys, I also make monkey pins. My family and I are going to hand out my pins at the end of this event—please take one if you’d like to Link Together to fight MS.

While our scientists and doctors have made progress, there is still so much to be done and many miles to go before we can declare victory on ALS, ataxia, muscular dystrophy, Parkinson’s disease, or multiple sclerosis, and I DO believe that the University of Minnesota is the best organization to lead this collected effort. 

We are grateful for your time this evening and ask that you consider making a gift right now to drive this fight against, not just multiple sclerosis, but ataxia, ALS, muscular dystrophy and Parkinson’s disease as well. 

Thank you!" 

Upon finishing our speech, one person stood up to give us a standing ovation- others followed, until

eventually the entire room was standing. My dad and I received one of the two standing ovations of the

night! What a fantastic feeling! 

Having the opportunity to share my story again was wonderful.

MS Ambassador

It took me a long time to accept that I had MS. I didn't want to share with many people, in fear that I would be treated differently. I had already spent over a year feeling like an outcast. I didn't want that to continue, so I tried my hardest to act "normal" at school, church, and any other social gathering. I continued to miss school due to fatigue and other MS symptoms, and struggled to create friendships. That spring, a staff member at the Upper Midwest Chapter of the National MS Society contacted me and asked if I would like to be the MS 150 Ambassador! Of course, I saw this as a great opportunity, but I also knew that meant people would find out that I have MS. I anxiously said yes, and within weeks, had a video created to promote Walk MS. 

On the first Friday of March, I received the video over email. My high school had its all school gathering that afternoon, where I had planned to make an announcement asking people to join my team; but my plan changed at the last minute. The leadership team asked me if I wanted to show the video. At first I said no, but a minute before I went on stage, I said yes. The video played, and the school was silent. Following the video, I went on stage and said to my peers, "I am not asking for your sympathy, I am asking for your support." The entire school now knew I had MS.
(Click the link to view the Walk MS Video)

After school that day, I sold "monkey pins" as a fundraiser for Walk MS. Although I was selling them for $1, students were handing me $20 bills as a donation. Some students just wanted to shake my hand. I was amazed at their reaction! For months I dreaded the day when my friends would know I have MS. I was afraid I would be treated differently. But, instead, I was finally treated normal. Others understood why I continued to miss school and accepted of that.

Sharing my story was one of the best things I had done. A few weeks later, my mom received a phone call from the MS Society asking if I would do an interview with Channel 4, WCCO an hour later...eek! My whole family met at home (in the middle of the school day), just in time to clean the living room to prepare for the interview. My dad and I were interviewed while walking around the neighborhood, in an effort to promote Walk MS.

(Click the link to watch the WCCO Interview)

In the following weeks, I also had interviews with Fox 9, Shoreview Press, a Duluth radio station, and the Duluth News Tribune.

With each interview, I felt more and more inspired and excited about sharing my story. The reactions I saw on people's faces when I shared my story made me want to share more. The typical diagnosis age for MS is 20-50 years old, and I was 15.  At that point, I knew I wanted to continue to spread awareness for the MS Society, and continue to share the story of my diagnosis journey. I wanted to, and still want to put and end to MS.