“How Scleroderma Has Changed My Life”

How has Scleroderma changed my life..?

Well this is a story all about how my life got flipped turned upside down and I’d like to take a minute, just get seated in your chair.. to tell you all how Scleroderma has become my one big affair.

January 25th, 2021 is the date that started it all…. the unknown was becoming known. In the beginning around 2019, it just started with knee pains that would be here and there but definitely a noticeable pain. Doctor said it was just a “growing spurt”, but my body knew it was something different, something wasn’t right nor comfortable. As time was passing things on my body were changing that I wasn’t even noticing as they were in the process of doing so until they were already in their state of being. First started with not being able to criss-cross applesauce anymore as well as squatting down. Then went into my skin having white spots on my face and hands which I had first thought was vitiligo and I told my mom I was turning into Michael Jackson! Next, around the winter/colder seasons I was getting these sores on my fingers that were so painfully peeling, changing
colors, and highly sensitive to touch. My body was changing progressively downwards and my family, myself and doctors were clueless. By October of 2020 I was very skinny, daily activities were highly difficult, my joints were extremely contracted and walking long distances made my legs feel like stiff rock, logs that had to be dragged. Also in October of 2020, the day after my mom’s grand opening anniversary of her spa, I had gotten very sick. I was throwing up green and yellow fluid and felt extremely weak, which my parents and I thought was food poisoning because I had McDonald’s that night of my mom’s business anniversary.

Fast forward to the first week of January 2021, I had been admitted to Kaiser Roseville because one of my heart blood tests had come back slightly elevated after I was having bad chest pains.

Being admitted to the hospital like that for the first time was new… but not the kind of new that I enjoyed.

I was there for about a week and a half and the diagnosis that the doctors had diagnosed me with was MCTD (mixed connective tissue disease). They prescribed me medications, such as steroids and this low dose chemo shot drug called methotrexate, which was to help with the inflammation. I arrived home feeling blessed to be back with my family and ready for that feeling of recovery… except the recovery was not the kind I was praying for. While being home, I had thrown up on myself almost every single night for about two weeks straight. Causing me to be as weak as a newborn baby, probably even weaker and so skinny that my spine was sticking out. I felt so betrayed by God and confused on why this was happening to me! Why did I have to be the one to go through this much pain that felt…endless. January 25th, 2021, was the day I had to go in for my first IVIG (intravenous immunoglobulin) infusion treatment at the Kaiser Roseville clinic. Two nurses struggled three times to put in an IV because of how dehydrated I was from all of the vomiting. After explaining to them what I was experiencing, at that moment they knew I had to be admitted for further help to which later that night I was. Instantly, January 25th, 2021 became more than just a date to me.. more than just a clinic visit.. it became the gunshot for the runner to begin her marathon.

At age 16 is when Scleroderma was introduced into my life. Completely unheard of and unknown to me, my family and my friends. I went from living a healthy and active life to being hospitalized for a year and a half, going to 4 different hospitals, being away from family and friends, being away from my own home/bed, getting all kinds of tubes/lines, multiple medications, not being able to eat for a WHOLE MONTH and surgeries that never in my lifetime thought I would have to get. It was a tremendously drastic change for, little 16-year-old me who was once healthy.

I remember after being in the hospital for about a month or two and I was sitting on my hospital bed with my mom standing a bit to the side in front of me. While I was looking out the big glass window into the bright blue sky, she asked me then what was wrong and instantly the tears came running like a waterfall as I poured out asking her when was I going to go home?! I was drained and felt like the dark hole was going to stay dark forever.. It was very hard.

Not only was adapting to the hospital environment already a challenge but adapting to the hospital environment WHILE trying to do schooling slightly made it even more of a challenge. While being hospitalized, I started off as a junior in high school during our second semester and we were on zoom. Then I did my whole senior year in the hospital while my school went back to being in person again. Now I am the kind of student who hates missing school or even being late to school so having to miss out on my senior year, even though it was because of my health wasn’t only crushing for academics but also not being able to do my senior year with my friends like I always imagined since freshman year was a big let down.

It was really all a mindset type of thing that I had to allow myself to realize and learn to come content with….health is over anything.

Although I wasn’t able to be in person, my lovely momma made sure I didn’t feel left out and felt as included as possible to the best of her abilities. For “prom” she drove my friends out of Sacramento, California (my hometown) to Lucile Packard Children’s Hospital in Palo Alto, California which is known as the Bay Area in California. We all dressed up in these hunter green long dresses and my brother had borrowed his friend’s professional camera so that he could take our “prom” pictures.

I was beyond blessed to have my momma come up with the idea and to my friends having the availability to make me feel special. It is something I will definitely cherish forever in my heart.

Now since we had done that in December, the actual prom was in May and I can admit I was pretty down seeing my friends dress up so beautifully while I was just in my hospital room, viewing everything on social media. Now to cheer me up after I had told my dad it was actual prom day, he decided that we were going to have our own prom in my hospital room and that we were each other’s prom dates since he was already in Palo Alto for work. Later that day after work he bought himself an all white outfit and got me an all white jumpsuit with a pair of white flower sandals. He brought me dark pink flowers, we took pictures and made a dance battle video with no music, just the music in our heads.

It was the best pops and daughter moment I ever had that just made me so thankful to have a pops like him, who just wanted to see me smile.

For my graduation, God showed me 100 plus reasons on why He gave me the continuous strength to never give up in this marathon. To feel that completion of graduating high school while being in the hospital and committing to an HBCU when I was in the ICU. To be surrounded by my family in front of the hospital standing tall in my cap and gown, behind my graduation decorations taking pictures while staff who walked by said “congratulations”… letting Scleroderma know that you have no power over me… that I am more than just you… that my life doesn’t end with just you! As being the first student at my high school to have their parent walk the stage in honor of them to collect their diploma, as my picture was up on the big screen at the stadium where we were graduating. To have friends post and send me videos of when they first called my name, saying how proud they were of me. God pushed me to get to that checkpoint in my marathon because He knew how amazingly proud I was going to be of myself and the love that I was going to receive that allowed me to take a glance at what I just ran and just give Him the Glory for it all…because He always knows best!

Now the number one thing that instantly changed for me after gaining Scleroderma and having to be in the hospital for so long is my perspective on being more grateful for everything in life.

To be grateful that you woke up today, that you have the ability to eat and to keep down that food. That you are able to walk, speak, hear, breath and think…having those 3 daily abilities is a blessing each day that they are being used.

To be more understanding on why someone may act the way they are in that moment or is having an off day because someone in their life may be fighting for their lives at the hospital and they just left them or got some news about them. To have more contentment and less complaining in your surroundings and situations that you encounter.,.that your whole day isn’t ruined because that lady in the jeep took your parking spot at target, when there are people in that moment who could be lying in their hospital bed in pain because they just got out of a surgery.

Throughout all of this God has allowed His light to shine continuously throughout my marathon. Allowing me to see the finish line far more closer than when I first started. Turning away from the enemy and showing him that God didn’t leave me….He’s been here this whole time and he’s going to lead me into something better than just this by the grace of His power!

He has sprouted out “#serenitystrong” which has inspired others around the world and in my community to know that you have the strength to shine through your darkness and your more than just the pain that you are feeling. “#serenitystrong” has been the way my family and I have given God His Glory for all that He has done in this marathon that felt like there was going to be a storm every day. He brought my relationship individually closer with my parents stronger than ever that has grown us in this ultimate seal. He elevated my relationship with my day one friends in the most beautiful way that we are completely locked in like no other. Now that I am less than a month from my Stem Cell Transplant, I can say that Scleroderma has changed my life for eternity.

That 5 years ago I would have never had the thought that this is what my state of living would be…but it’s a state of living that has grown me in a way that NOBODY can try to break me because God has strengthened me mentally, physically, and spiritually different for my own path. This runner is going to finish her marathon.

– Serenity