Hello wonderful readers,
I want to thank each and every one of you for your
love and support on this blog. I was overjoyed by the response I received from
last week’s first post!
I was very hesitant to write my second official blog post on
my diagnosis of MS, but I would like to take the time and use this platform as
a way to educate readers, and share my experience with MS. After all, the first
word in the title of this blog is Ms. J
Being diagnosed with MS in January of this year was a large life altering event. It was not a negative life altering event, but a
blessing in disguise. Some readers may not understand how being diagnosed with
a neurological disorder that could take away my mobility, or the brain I have
worked so hard to fine tune, could be seen as a blessing, but I ask you to
continue reading to allow me to show you how I am viewing my diagnosis.
On November 23rd, 2016 (Thanksgiving weekend), I
began to experience numbness and tingling on my right cheek and my right ribs.
This numbness and tingling seemed to come out of nowhere, but it originated in isolated
areas, so I was not alarmed at its onset. If you know me, I am not a large fan of going into the doctor’s office, so of course I brushed off this sensation
and told myself I slept on my right side wrong. As the weekend progressed, and we were getting ready to leave for
Thanksgiving dinner with my mom’s side of the family, I remember telling my mom
that my right cheek and ribs felt “funny”. The nurse in her instantly asked
for me to take both of her hands and squeeze to make sure I wasn’t experiencing
a stroke or loss of strength on my right side. I proceeded to squeeze each of
her fingers without difficulty and she asked me to keep an eye on it and
mention if anything changes.
As the holiday weekend continued, and Trevor and I traveled to Door County to spend time with his family, my right cheek
and rib numbness persisted. By the end of the weekend, the sensation had stretched all of the way to the top of my head, down to my
right foot. I felt as though my whole right side had fallen asleep and I was
not entirely sure as to why. As my husband and I traveled back from Door County
after visiting his family, I found myself shaking my right hand to try and
regain sensation (as we might do if a body part fell asleep). My husband, being
the amazing man he is, said if it’s not better by the time we get home, we will
need to go in.
We arrived back in Sheboygan in the early afternoon and I
had not regained any sensation along my right side. We went into the walk in
clinic, which was completely dead due to the holiday weekend, and checked in. They said I would be called within forty-five
minutes to be seen by a doctor. My husband and I were able to leave the clinic
since they had a new texting option that updates us on our wait time.
We went back to our apartment to wait for my scheduled time
and I started to receive updates that my wait time was getting longer and
longer. What was once forty-five minutes turned into an hour, then two hours,
and so on. One of our very best friends, Eric, is an NP, and we consult him
often if we have any medical questions or needs. When Trevor heard our
wait time was getting longer, he turned to Eric for advice. Eric asked me about
my symptoms and told me it was time to go into the ER to have a doctor do an exam.
Trevor and I got into the car and headed to the emergency
room in Sheboygan. I have never gone to the emergency room for any medical
concerns, so this experience was very strange to me. At the ER they
ran blood work, completed an EKG, and other routine tests. After about two
hours, the doctor came in and told me she could not find anything abnormal in
my exams, but she has reached out to a neurologist in the area who would be
seeing me the next day. As many of you know, neurologists normally have a
waiting list that is weeks long, but the ER doctor was able to get me in right
away since this was a pressing issue.
My husband and I met with the neurologist the very next day
to discuss what symptoms I was experiencing. I informed him that I still had numbness and tingling along my entire right side and I was
very exhausted. After he completed a few tests, he suggested we get an MRI of
my brain scheduled. I had the MRI of my brain completed the very next day.
December 1st, 2016 is a date that will always be
ingrained into my memory. Trevor and I closed on our very first home together
in the morning, moved out of our apartment into our home that afternoon, and
had a follow-up with the neurologist to go over my MRI results. Talk about a
jam packed day! We were fortunate enough to have the help of our very close
friends, Halie, Eric (our NP friend mentioned early), Jess, Jaren, Austin, and
Willie. We were able to move everything from our apartment into our new home in
two hours! By the time we had all of our items thrown into our new home; it was
time to leave for my appointment with the neurologist. My mom and
Trevor accompanied me to my appointment.
The neurologist came into the room, introduced himself to my
mom and sat down at the computer. He then pulled up the results
from my MRI and began to explain the different images. The
first few photos looked like a normal brain, or what I thought to be a normal
brain since I had never seen MRI results before. There was one image showing
both sides of my brain that the neurologist stopped on. I instantly noticed a
large white spot on the right side of the screen that was not present in the
images before. The neurologist paused and stated that this white area was abnormal. He continued to explain that this lesion located on the right side of
my brain is what was causing the numbness and tingling and it is often seen in
patients with MS, Multiple Sclerosis. This is where time seemed to stand still.
I continued to stare at the large white spot in disbelief. I remember saying to
myself, “this must be a mistake. That is not my brain, the neurologist must
have the wrong room. I can’t have MS, no one in my family has MS. How is this
possible? I am a healthy twenty-three year old who exercises and eats well.
How can my brain have lesions on it?” I
remember looking over at my husband who was sitting next to me as tears began
to fall down his face. My mom, who was standing to view the images, had a very serious
look on her face and began to get teary eyed. The next thing I remember was the
neurologist handing me a tissue to dry the tears than began to form in my eyes.
Time continued to stand still. I took a very deep cleansing
breath, attempting to remain strong and present, before I simply said to the
neurologist “ok”. The neurologist went on to suggest a spinal tap, starting a
course of solumedrol IV treatment, and other blood work. I was still in disbelief,
staring at the white spot on the screen attempting to retain as much
information as I possibly could. Thanks goodness I was not alone in the exam
room, because I honestly do not recall hearing the doctors recommendations
after receiving the news.
I remember taking the elevator down to the parking lot level
with my husband and my mom in silence. My husband was holding my hand and my
mom was rubbing my back. When we got in the car and shut the doors, I think the
news began to sink in because I was overcome by a mix of emotions. One
particular emotion and thought seemed to be stronger than rest; I was hopeful
and I thought to myself “I would get through this”.
Since that appointment on December 1st, 2016, I
have experienced: two spinal taps, two rounds of solumedrol treatment, two
known episodes, more MRI’s and blood tests than I am willing to count, and
many, many tears. I have also experienced: the unconditional love and support
from my husband and our families, being blessed with a wonderful neurologist
and nursing staff, so many positive thoughts and prayers from people all over, and
the realization that I am truly not doing this on my own.
If you would have told me earlier this year that I was going
to be receiving challenging medical news, I would have told you that you’re
crazy. Life throws everyone a curve ball every so often, and I believe that it
is not what happens to us that matters, but it is the way we respond and move
forward.
MS is not something that happened to me, MS is something
that happened for me. I am not my diagnosis, and I refuse to live a life that
is defined by my medical history. My diagnosis has helped me realize what
really matters in life. I have been told many times that I am “too young” to be
experiencing this, but we all experience wake up calls in life, and I was
fortunate enough to encounter mine at a young age.
I could tell you some cheesy line such as “live life to the
fullest now, because you never know when your last day on Earth will be”, but I
think we have all heard that a thousand times over again. If I could give one
piece of advice, and I cannot promise it won’t be cheesy, because I like cheesy
(I am from Wisconsin after all). I would have to suggest finding what makes you
happy to be alive, and do that as often as you can. We all have this unwavering
potential within us, don’t let your life pass you by and not go for what makes
you happy. Okay, that was a little cheesy, even for a Wisconsin native.
I am not going to lie to you and say that every day has been
sunshine, rainbows, and unicorns throughout this whole process. I have
experienced many bad days where I felt as though I was being pulled into a dark
abyss of nothingness, but I was pulled out and tried to surround myself with the people I love who could pick me up. We all experience good days and bad
days, so I am not experiencing anything new or special. I do believe you have
to experience grave darkness in order to see the divine light that exists
around and within you. I can thank God, my yoga practice, all of the amazing
teachers, my husband, and my family for showing me this. As I stated in the
first post, I am not anyone special, just an ordinary twenty-four year old with
a story to share.
“Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.”
“MS is considered to be an immune-mediated disease in which the body’s immune system mistakenly attacks myelin in the center nervous system. Myelin-the protective coating around fiber in the central nervous system-is a primary target of the immune attack in MS.” (http://www.nationalmssociety.org/What-is-MS/Definition-of-MS)
“While the cause of MS is still not know, scientists believe that the interaction of several different factors may be involved. MS is not hereditary, having a first-degree relative such as a parent or a sibling with MS does significantly increase an individual’s risk of developing the disease.” (http://www.nationalmssociety.org/What-is-MS/What-Causes-MS)
“Multiple sclerosis is thought to affect more than 2.3
million people worldwide. While the disease is NOT contagious or directly inherited,
epidemiologists-scientists who study patterns of disease-have identified
factors in the distribution of MS around the world that may eventually help
determine the cause of the disease. These factors include gender, genetics,
age, geography, and ethnic background. Most people are diagnosed between the
age of 20-50, although MS can occur in young children and significantly in
older adults. MS is at least two to three times more common in women than men,
suggesting that hormones may also play a significant role in determining
susceptibility to MS.” (http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS)
At this point in time, there is no cure for Multiple Sclerosis. There is a great deal of research going into different medications and ways to help live with MS, but there is no remedy to take away this destructive
disease. With advances in technology and
generous donations, we know more now than ever before. I am remaining hopeful
that a cure will be found in the very near future and we will be able to break
the shackles that MS holds on more than 2.3 million people and their families.
I want to thank you all for reading my MS diagnosis story, and for educating yourself on MS.
If you enjoy my posts, please subscribe by entering your
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Thank you so much for reading!
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