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Reflection: How Writing Has Helped Me

Writing is my music; it allows me to express myself. Through the use of figurative language, like metaphors, I can put into words what walking through this journey has felt like. Often times people don’t understand what experiencing a difficult situation like this has been like because they are not in my body or have not lived life every waking second the past several months with an illness. Therefore, writing gives me a voice to express to others what living my life is like.

The use of words and writing has helped me through a handful of different circumstances. For instance, I have seizures and have been taught distraction techniques that are suppose to help abort the seizure from happening. Those techniques never work for me, they just prolong the time before the seizure occurs. Words helped me explain to health care professionals how the ordeal of having a seizure is similar to that of vomiting. Just as a person feels funny before it happens and exhausted but better afterwards, it’s the same with my seizures. I am exhausted afterwards as they take a toll on my body, but I feel better after it’s all done and over with as the severe symptoms I get as leading up to the event are finally gone. I won’t have been able to express how my body felt in this particular situation if it wasn’t for the use of words.

Despite words helping me to communicate messages from what I’m experiencing, there was also a time where I lost the ability to do that exact thing. My condition took away my ability to physically write pen to paper and use keyboards on an electric devices. I know, sounds kind of bizarre, but it really did occur for a period of time. The pathway from my brain to my hands that tell them how to move to string letters into words had stopped working properly. My hands weren’t able to carry out the message that I had in my brain. It was like playing the game telephone that when the message finally reached my hands it was not the same message that was at the beginning in my brain. (see example of how this translated into real life via text messages in the picture) However, I was determined to correct this and I did. How did I manage to restore this function? By using the same thing that was broken. I would purposely journal everyday to help to continue to re-establish that neural pathway. I would journal about whatever came to my mind that day whether it was the raw emotions I was feeling or analyzing a situation that occurred. Over time this method proved to work and my writing got better and eventually returned to a semi normal state.

As I continued to write I realized how much I stilled loved it as a way to express ideas, thoughts, and emotions. I have been journaling constantly for two years, but when I went through a health crisis I realize how helpful writing was as a way to cope and process what was going on. Over the past few months in particular writing has helped me cope and analyze what events have taken place, but it has also helped me in the areas of occupational therapy and speech therapy. It has helped me in the speech realm because it has helped to improve my cognition and be able to articulate my thoughts more precisely. In OT it has helped me to gain better motor control and coordination of my hands. (see paragraph above about learning to write all over again, the act of writing in an example of an occupational therapy task.) Along with helping my brain, it has helped me to emotionally cope and understand things that I didn’t think about when going through the situation at first. When I write blog posts many revolve around things that have already happened. Going back and reliving the memories associated with a certain time helps me to heal from going through it and make things I didn’t think about at first come to light.

Writing has been a therapeutic task for me in a number of areas. Just as musicians say that music is their way of expression and use of voice; it’s the same for writing with me. Writing is my voice and has helped me realize my identity. In the beginning starting this blog was hard due to how my writing skills where decreased as an effect of my neurological condition. However, just like with gaining back the physical abilities, I am slowly regaining my ability to flush out my thoughts completely in a coherent way thanks to blogging.

I encourage you to find what allows you to have a voice. Maybe it’s music, maybe it’s writing, or maybe it’s something else like art. Finding your voice through a type of media in the world can help you to express yourself in ways you didn’t think were possible. Every one of us has a story to share and finding your voice is the best catalyst to getting that story out into the world. You never know, your story might just be the inspiration that someone needs to hear to find their voice.

– The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***

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CNA to Patient – Part 3: My Why for Working in Healthcare

I woke up in a nightmare but it’s not just something you wake up drenched in sweat from – it’s my reality. Regardless if I like it or not it’s happening. I have to face it head on. Most importantly, I want to get better. As I lay here in my hospital bed and look out the door to the hallway, I want nothing more then to be roaming those halls as a healthcare provider of some kind. There’s a lot of new unknowns right now, but that’s okay as there are so many people here to help me. I have to accept the fact that I can’t do this on my own anymore. I need some extra help and there perfectly okay. There is no shame in needing some help. You will get better. You will become stronger, kinder, and wiser because of this. You just have to keep moving forward and put your fight face on. I want more than anything to be out there walking those hallways with scrubs on. Taking care of patients by giving the care and TLC that is needed. Maybe it won’t be in the form of a doctor, maybe it will be a nurse or a social worker. All I know is as I sit here in my hospital bed I would do anything, I mean anything, to be in scrubs going in and out patient rooms once again. Maybe this moment can be a reminder to you of your goal. When things get hard remember this moment and how you felt being the patient and would do anything to change places and be the health care provider.

I wrote these words of encouragement to myself just two days after getting diagnosed. It had felt like I had fallen down a rabbit hole of some kind and landed in an alternate universe. I wasn’t supposed to be the patient. Especially not on that day because I was supposed to be starting my fourth year of clinical rotations. Instead I found myself needed the assistance of my exact profession – CNA. So badly I wanted to toss the blankets aside and jump out of bed to go help all the patients that I saw pass by the doorway to my hospital room.

My view through the doorway of my hospital room

Looking back at this moment now, the doorway is symbolic in a way. Outside the doorway represented what my pre-illness like looked like; this included running in and out of patient rooms and answering call lights in between. Inside the doorway lied the new illness life I was about to endure for many months on end – hospital rooms, waiting for so many doctors, and medical devices attached to my body. Despite how vastly different this “new life” was, I was determined to make the best out of it and turn it into a learning experience.

This learning experience was mainly focused in two areas: my body and health care careers. Before getting sick I was full steam ahead on the pre-med/MD route. After getting sick there were some extremely difficult, but necessary conversations about how that route was not ideal for me now. It held too many risks for me winding right back where I was now, a hospital bed. I had to seek a new career route. Also, I had to learn my body. Yes, seriously learning to read my body like a book; chapters including knowing how my body reacts to certain things so I can handle situations when they arise.

These two areas of focus went hand and hand. Due to my circumstances I was coming in contact with medical professionals on the daily. Spending lots of time in the healthcare environment has helped me to realize that healthcare is still my calling. In no way, shape, or form do I like being in the setting as a patient, however that same yearning desire to hop out of bed to go help someone still runs in deep in my veins. My experiences in the medical setting as a patient have driven me to want to make that same process even easier and less scary for someone else.

Learning little tidbits of information from each profession made me realize I am on the hunt to find a job that that feeds my thirst for knowledge and keep my creative wheels spinning while also works without overexerting my semi-working body. I have numerous options for career paths as the medical field is so vast with variety. I have narrowed down my interested careers to: child life specialist, physician assistant, public health manager, and registered dietitian. (More blog posts to come in the future on these professions.)I have also learned from my time spent going to appointments there are so many more places to work than just a hospital or doctors office. For example health care providers can work in schools, fitness centers, outpatient clinics, and even private practices of their own.

My journey to become a full time health care provider is probably going to look very different than most because I have my own health to take care of first. I can’t be the healthcare provider if I’m the patient. Therefore, I will continue striving to get completely better, so that one day I can be standing on the other side of the hospital bed giving the same compassion and help that my healthcare team gave to me.

– The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***

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Keep the Faith

I swear hospital walls have heard more prayers than the walls of a church. It seems that in someone’s darkest moments is when faith really comes to life. Faith and religion are such taboo subjects in today’s society. Everyone has their own belief system and can get defensive if discussed in conversation. Some even hide their beliefs from others as they are scared to be open about such an intimate subject. However, when the unthinkable happens and someone finds themselves walking hospital hallways it is there faith comes to the forefront of people’s lives.

It’s ironic to think that the worst situations can bring faith to light because most people’s belief is that a God or higher power is supposed to protect them not hurt them. Some might question if this so called God is almighty then why does he put us through scary and heartbreaking events? Some might even get mad or angry and wonder: I go to church, I pray, I do good deeds for my neighbor why has this terrible situation happened if I am doing all the right things? Despite all the hurt feelings and frustration somehow people still have this strong desire to believe in a heavenly father or spirit.

Having a belief system rooted in whatever religion someone is apart of can help a person hold onto hope and explain the unexplainable. In the midst of a storm it can be really scary to bear witness of a loved one tethered to a hospital bed or worse you are the person lying on that gurney with the unknowns swirling in your head. I have been that person before. Strapped to a hospital bed being poked and prodded all over to try to find answers to what was going on. It was in that moment that my faith became even more apparent.

I remember it all too well. It was late into the night, I was lying in that hospital bed with tubes and wires attached all over my body and I was all alone. My parents had gone home as visitation hours were over and the only people left in the facility were the patients and night shift staff. I was terrified as no one had any answers as to what was going on and I was getting worse by the hour. My nurse came in to ask how I was doing and I said: “honestly very scared”. She asked if I wanted to talk with someone and of course I said yes. However, I was thinking to myself: “who is at the hospital this late at night to talk?” The answer – hospital chaplains. The hospital I was at had chaplains available to talk any hour of the day. A chaplain came to sit at my bedside and talked with me. It wasn’t until the moment that she told me this quote that I finally found some peace and comfort. She told me this quote by Shivani Hundare:”I asked God: why are you taking me through troubled waters? He replied, because your enemies can’t swim.” She told me this is a reminder that God puts us through hardships to make us even stronger individuals. The very next day I got a diagnosis and a treatment plan was put into action to get my on the road to recovery. Fast forward months ahead and this quote still rings in my head numerous times throughout every week. There has been many trials and triumphs throughout my journey and each one has shaped me into a stronger person.

Faith brings a lot of comfort during hard times as it serves to remind people that they are not walking this journey alone. There is a divine force watching over them and walking this same path alongside each person. Personally speaking, I truly believe that my faith has strengthened over the course of these months because I have seen the work of God as I continue to heal. (more on that in an upcoming blog post, stay tuned) My character, morals, and outlook on life have all grown stronger as well and are starting to truly take shape from this experience. Faith has a funny way of taking a backseat when life is going right and then comes to the forefront in times of crisis. I learned from going through my only crisis that faith should be in the forefront always. Life gets busy and people lose sight of that important aspect as it gets pushed to the side, but the minute something goes south it comes back into focus. Faith as a unique way of strengthening and humbling people. It is also the force behind why people who are in the worst situations of their lives hold onto hope and pray that God will answer their cries out for help in between those hospital walls.

– The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***

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Living Out My Best Life

The fact that my senior year is quickly coming to a close feels strange, as it feels like it’s just getting started. All year I have spent my time in and out of hospitals and doctors appointments rather than in and out of classes. All my time and energy has been devoted to my health and getting better – rather than parties, football games, and late night gab sessions with friends. Up until recently my life has been an all consuming world around my health, however my health is starting to stabilize and I’ve been finally able to see the light at the end of the tunnel.

This month, May 2019, it seems like my health has turned a new leaf. In the past couple of weeks I have gone to prom, a wedding, and seen friends more than I have all school year. Getting all dressed up including a full face of makeup felt refreshing. Dancing the night away felt exhilarating. Smiling until my cheeks hurt felt enlightening. When I took a step back from the scene for a moment a feeling washed over me: this is living. I am finally at the place that for so many months I hoped and prayed for.

When I had a major setback in December of 2018 and landed in the hospital, there were some scary conversations that took place. What my life trajectory would look like was among the hottest topics of discussion. I held on to hope that one day I would be able to have nights where all things medical would fade away for a few hours and life as I had previously known it would resume. I held on to hope that one day I wouldn’t just be surviving, I would be thriving.

I can finally say I am at that point: I am thriving. I am making leaps and bounds of progress in my recovery every single day and I’m living life. I am going on date nights with my boyfriend. I’m hanging out with friends. I’m going to family gatherings. This is all while I’m staying on top of school work and my PT, OT, Speech daily regimen. Therapy exercises have just become part of my norm; they are the very thing that has helped me get to where I am today.

Since getting diagnosed intensive physical, occupational, and speech therapy have become part of my daily routine. I realize that some aspects of my life still aren’t normal like having four days a week of therapies and multiple doctors appointments sprinkled in throughout the week. That’s okay, it’s just a part of my new normal. Date nights and friend gatherings are also a part of my life too, like any teenager. Maybe my life is not completely typical for someone my age, but it’s a lot more similar to young adults than it was say five months ago when every aspect of my life encompassed my health.

When I was first in the midst of my health journey, I remember talking to friends and only having medical news to share. However, now I have stories of how something hilarious happened on a date the other week or how so and so did a thing. It goes to show that I have finally made it around the tough corner of this fight and I’m on the other side now.

Honestly, I think a big part of learning to live my best life comes from the fact that I have completely accepted my condition and have learned to adjust to my new normal. Accomplishing both of those things has make life more enjoyable. I have settled into a new routine based upon what my body can handle, and I know how to pace myself so I don’t overdo it. This was a hard lesson to grasp as I am a natural go-go-go type of person. However, I have learned to slow down and really soak up all life has to offer. Also, I have made peace with my diagnosis. For a long time I was naive and turned a blind eye thinking eventually I would get better overnight. When I finally woke up and smelled the roses, I realized that wasn’t the case – this condition and I were going to be attached at the hip for life. After a long time of just getting by and grieving the loss of my old life, I got up and decided to go and live out my best life possible. We only get this one life so why waste it focusing on the suffering. Instead, I turned my mind set around and started really getting in tune with my body and enjoying life to the capacity that I can. By starting to truly live life I realized that a lot of doors have closed, but a whole new set of shining glowing doors have opened for me to explore.

– The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***

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A Letter to My Little Sister

Dear little sister,

It’s almost the end of your freshman year of high school; wow that flew by fast! This year you have truly blossomed into a beautiful young adult in more ways than one. I can still remember helping you get ready for your very first day of high school and how nervous and shy you were. Over the course of the year that little shy girl has developed in a well round young adult; from your fun bubbly personality to your up-to-date stats on anything pop culture related and even your musical talent. Each day I look forward to you coming home with a big smile on your face and telling me what you accomplished at school that day.

Now, I know this year hasn’t been all sunshine and rainbows either. I know my sickness has changed the dynamics of our family quite a bit. I can’t even try to image what it must have felt like to you. I can’t even comprehend how you kept it all together at school each day, even with knowing mom and dad texted you updates throughout the day. Or what it must have felt like the bouncing around from family and friends houses as mom and dad were in the hospital with me. Lately, when you did come into see me at the hospital, you could still make me laugh harder than anyone despite how scared you must have been from all the unknown medical equipment.

I know anything medical related makes you want to run the other direction, but when this situation was thrust upon our family you didn’t run; you stayed and helped me. To me, it felt so twisted as the older sister I’m suppose to be helping you not the other way around. However, neither of us had much of a choice in this situation. You stepped up to the plate and helped in the way you knew how, by being my sister. From our Disney music dance parties to showing me puppy memes when I was upset, you could always put a smile on my face. What also brings a smile to my face is how you kept up will all your school work this year and are passing with flying colors! The one thing that brings the biggest smile to my face is how strong this situation has made you.

I firmly believe this whole ordeal has made you stronger in two ways – you matured and know how to keep calm in the midst of the storm. When demands where asked of you at school, home, and on the social scene you handled them all with grace. No one, including me, could have known how scared, nervous, or upset you felt. For example, when I had a seizure and we were both in the same room you called for help because I couldn’t. Then afterwards you stayed with me and scrolling through Instagram finding funny animal videos to show me to help distract me from not feeling well. However, one of my favorite memories from the hospital was when you wheeled me out to the boardwalk in front of the hospital and we had a mini photo shoot with country music playing in the background. I look back at that night and smile because amidst the chaos going on you could get me to sing some of our favorite songs, laugh, and have a sister photo shoot. Now, as I watched you get ready for our cousins wedding this weekend I realized how much you have grown up into a young lady. You know way more about makeup than I ever will, have a chic sense of style, and know all the latest music and dance moves.

Watching you rock the dance floor all night at the wedding is what spark my thoughts in writing this letter. Why? Because for the first time is such a long time I saw you so generally happy – smiling, singing, dancing, and living life. This made my smile ear to ear because it’s like things are finally starting to turn upwards. I know missing your first month of high school, first school dance, first high school orchestra concert and many more events all because I was in the hospital was so hard on me. I wanted to be there so badly to bear witness to all your accomplishments in high school. While I will never get back that missed time, I have witnessed so many more of your accomplishments since. Even in the here and now, to watch you dance the night away and with not a care in the world made me feel like all was right in the world for a moment.

I know this year has changed you a lot and you have had to experience the evil of the world that I wish I could protect you from. However, you still find a way to handle each situation with grace and a smile. I am so proud to call you my little sister and I can’t wait to see what the future holds for you. Let me just say, I am so lucky to have a front row seat to not only your orchestra concerts, but also your life. Remember to keep singing and dancing through life because you are in such a beautiful performance that I am so lucky I get to witness first hand.

Love your older sister,

Caroline

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Feeling in Control When Everything is Out of My Control

One of the perks of being a young adult is getting to flex your right of being in control of when you do and how you do mostly everything. As a young adult you have the freedom to be in control. Let’s be honest for a moment, that’s probably one of the best parts about growing up. The training wheels come off and parents take the back seat as teens starts to make their own decisions.

Being in control is one of the most freeing feelings in the world to a young adult. That is, until illness enters the picture. Once I got sick all that control I had over my life was gone. I couldn’t just make plans the day of to go anywhere I wanted anymore. Instead, I had to plan things weeks in advance to make sure everything would be in line. That ranges from making sure I wouldn’t be too overly exhausted from having PT or OT beforehand, making sure the place I was going would be handicap accessible, and making sure I bring my medicines with me. Sometimes it feels like my illness is in control not me.

My symptoms depict what I will be able to do each day. If all my symptoms are flaring on a given day I might be able to make it to my physical therapy appointment and then back to bed I go. If I’m having a good day then I might be able to get out and go to shopping to one store, using my mobility devices of course. My body tells me what I can and cannot do on any given day. I have to listen to it otherwise it will yell at me. Okay, I know that would only happen in a fantasy,  but you get the idea . The minute I say “ who cares” and go ahead with something I know my body can’t handle, I will pay for it the next day. Pay for it I mean I will wake up the next day feeling like a truck hit me with symptoms raging. Therefore, it is imperative that I listen to my body.

Everyone’s body is like a book; they are all different, but each person learns to read their own.  I have learned to listen to my body with what it is telling me. Chapters have a history of repeating themselves if you don’t learn your lesson the first time. Therefore, tall tale signs like fevers, joint pain, increase in dizziness and seizures all signal to me to slow down and re-evaluate my actions. These symptoms signal to me something’s going on and if I don’t take care of it right now it might evolve into something worse. That’s not a chapter I want written.

Despite feeling like sometimes my body is in control instead of me, I have learned that I am still in control of some things. For example, I am in control of choosing my outfit for the day. Lately my fashion sense has included positive shirts with inspiring messages that I might need to be reminded of throughout any given day. I am in control of listening to my body then planning my day accurately. Most of all, I am in control of my attitude. Even on really difficult days, I am still in control of my attitude. Therefore, I chose to see the good in everything.

When I was in the hospital for the second time there were a whole new set of unknowns that came to light. I was scared and confused in trying to find a way forward. I needed to clear my head so I went out for a little stroll in my wheelchair to the outside grounds of the hospital that I was in. (don’t worry I had my nurses permission to do so) It was there on the grounds of the ocean side view that I met someone who gave me the advice that I needed to heard that day. We started talking because the man at first had whizzed past me in this really high tech wheelchair. It wasn’t until we started talking about what we were each doing there at the rehabilitation hospital that he told me some really valuable advice: “You can either say why is this happening to me or what is this teaching me.” I had the choice to see this situation as an awfully bad thing or a situation that is hatching a teachable life lesson. This was exactly what I needed to here as I was in the midst of my own storm at that moment. We are all in control of how we see any situation no matter how difficult and unsettling it might be.

I can’t control that I got sick and that my body does the exact opposite of what I want it to do some days, but I can chose my attitude. On a hard day I can chose to see all the negative and all the things that went wrong or I can focus on the things that went right. I focus on what goes right every day because that’s what keeps me going. Seeing the good in the midst of all the chaos, is what allows me to pick myself back up when something goes wrong and try again. If the negative is focused on, chances are I won’t get up and try just one more time. That one more time might be all that is needed to conquer what ever obstacle is standing in the way. That’s why I stay positive and look for the good in every situation. Even if it seems impossible that there would be anything good to come out of really poor situation trust me it’s there more times than not.

– The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***

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Singing With a Therapeutic Purpose

My body went through a intense period of having multiple seizures a day. Okay, reality check – more like multiple seizures every hour. Not only did this land me in the hospital but it also left my body in shambles. All over I was extremely weak to the point I couldn’t even tie my own shoe without it taking almost 20 minutes of trying. I found myself back in the place where I first started this journey – in a rehabilitation hospital. In all honesty, it felt like all the progress I had made over the past 3 months since getting discharged from the hospital in the countless hours in PT,OT, and speech therapy was gone. I found myself once again at the starting line. Thankfully, after only a couple of weeks of working with a team of physical therapists, occupational therapy, and speech language pathologists I was doing better. They helped me regain a number of skills that seizures and weakness had taken from me. However, an everlasting effect that seemed to still plague my body even after I was discharged was facial muscles weakness. This resulted in me having a hard time talking without slurring some or all of my words.

It’s a little embarrassing and frustrating trying to talk and all of a sudden the brain sends the wrong messages and words come out like “ahslgkjdsteg.” I learned from my speech language pathologist why this was happening to me; a combo between my muscles being weakened from countless seizures and a connection problem between my oral facial muscles and my brain. Understanding this helped me to develop a way to help myself get over this speech impediment hurdle.

In short, the technique I used turns an everyday activity and into a therapeutic one. In my experience, speech/facial muscle exercises had to be done a total of 30 minutes a day. Therefore, I took the act of sing along out loud to my favorite songs and turned it into my speech therapy for the day. At the time of doing this exercise there was a 30 minute drive to therapy for me and 99% of the time the radio is always on in the car. So, I would pull out my phone and google the lyrics to the song that was on the radio and sing along out loud to the song. Someone is always driving while I’m in the passenger seat, I don’t recommend doing this while driving – stay safe kids.

The reason this task works as an oral motor exercise is because it targets the same muscles that most speech therapy exercises do. I would make sure to really exaggerate my lip movements to get the most strengthening out of the muscles. For a neurological disorder like mine, signals are not be sent correctly between my brain and my mouth to make the correct sounds when trying to say multiple words. The reason why singing out loud works is the tempo of the music helps give the brain a pattern to follow and helps to retain those neurological pathways in the brain to receive signaling in the right sequence.

The Functionally Faulty Girl, Caroline

*** the information on this blog is meant for informational purposes only and is based off of the author’s personal experience and does not replace information given by a licensed physician***