MS Journey

My two youngest kids are off having a blast visiting family friends, and while I’m thrilled for them, the house feels so empty without their lively chatter and laughter. Mornings are when I feel most productive, but after noon, time seems to drag, and I just wait for bedtime. Sometimes, I get an energy boost around 10 PM, but other times, I crash completely. This happens regardless of the season, but this summer, with its record-setting heat wave, I feel drained before I even open my eyes. Today started nicely, though I felt exhausted—not because of the heat, but because of Coco. His chatter woke me up for a potty break, and after letting the dogs out, I lay back down. Not long after, barking erupted outside, so I had to calm them down. It wasn’t a bird, a person, or a golf cart this time. It was a deer on the golf course. I called the dogs back in, and they joined me on the bed. I tried to nap, but sleep eluded me. Perhaps the lump I found is lingering in my mind, or maybe it’s the ch...

Today started off on a wonderfully cool note. I felt a refreshing breeze, and the world seemed to be in a gentle, calm mood. However, as I was getting ready, I discovered a lump the size of a small potato, or about the width of three fingers. It felt soft and squishy, with a bit of pain when pressed.  I immediately thought of calling my OB/GYN clinic, but unfortunately, they had closed at 1 PM today. I’ll have to wait until Monday to get it checked out. It's possible that it’s just a cyst. Though I can't deny a slight concern since cancer is one of the potential side effects of my MS medication, I realize there's no use in worrying now. Stressing about it won’t change anything and could potentially aggravate my MS symptoms, something I definitely want to avoid. So, instead of letting this overshadow my day, I decided to focus on the positive. This cool day is too precious to waste on fear. I shed some tears this morning, thinking about my brother and how much I miss him. It...

This morning began just like any other. I went through the usual routine of letting the dogs out, but today, they had other plans. The sky was pouring down rain, and my furry friends weren't keen on braving the storm. So, I waited.  The silver lining? The cool, fresh air brought a pleasant change from the usual humidity. I decided to leave the sliding doors open, giving the dogs the freedom to run out when they felt ready. As I was enjoying the serene ambiance, I heard Coco barking. Curious about what might be out there in the rain, I went to check. To my surprise, I found him digging at the grass. Upon closer inspection, I saw a tiny baby bird, probably fallen from its nest. Without a second thought, I grabbed a ladder and, improvising with a sock as a glove, gently picked up the little bird. Carefully, I placed it back into its nest, hoping it would reunite with its family. Every day seems to bring a new adventure. Just last week, I found a lost dog named Milo when I opened my ga...

Today started early, thanks to my dogs waking me up at 6 AM. I let them out and enjoyed the cool, pleasant morning air, wishing the whole day could stay like this. It would be nice to spend more time out of bed without the oppressive humidity weighing me down. Later, as I let the dogs back in, I found myself on the ground—not from a fall, but from my heart acting up. Living with both tachycardia and bradycardia means my heart can be unpredictable. One time, it landed me in the hospital. Nurses kept adjusting the beeping machines because my heart rate kept dropping below the threshold. The doctor told me my heart rate had dropped to 37 beats per minute overnight, and I might need a pacemaker. Hearing "you're so young" from the pharmacist about my strong pain medication dose has become a regular occurrence. But this is my life with MS— a condition that can affect young people and progressively worsen over time. I was diagnosed at around 30, full of energy, running and playi...

As I lay in bed, waiting for my medicine to start working, I'm reflecting on today with a smile. Today was a good day, and I'm grateful for the moments of accomplishment and joy it brought. I set out to clean the backyard, and I did it. Not only did I clean the backyard, but I also mowed the lawn and checked on the plants. The mango tree will flower soon, a sight I eagerly anticipate. Although I didn't make yogurt as planned, the day still felt complete and fulfilling. Using the self-propelled electric lawn mower was a game-changer. It provided the support I needed, helping with my balance and giving me a bit of exercise. It felt great to spend time outside, breathing in the fresh air and soaking up the sunshine. This was the most time I had spent outdoors in the past two weeks, and it felt like a significant victory. After completing my tasks, I was completely exhausted, but it was the kind of exhaustion that comes with a sense of achievement. I faced my challenges and fou...

After last night's thunderstorms, I woke up to a sunny and cheerful morning. The air was heavy with humidity, but the bright sky and fresh start filled me with determination. Stepping outside, I could feel the weight of the humidity on me. Despite this, I resolved to get back to my goal and complete at least one task today. I reminded myself to focus, ignore distractions, and take advantage of the cooler morning. My first mission: clean the backyard after the dogs. It's a simple task but one that brings a sense of accomplishment. I gathered my supplies and headed out, ready to take on the challenge. As I worked, I felt a sense of purpose. The fresh air, the sound of birds chirping, and the knowledge that I was making progress lifted my spirits. One small step at a time, I cleaned the yard, taking pride in every bit of progress. With the backyard looking tidy, I felt inspired to keep going. Maybe I'll make some yogurt next, turning this productive morning into a rewarding da...

Today was a better day, one of those rare moments when everything seemed to fall into place just right. I spent less time in bed, which already felt like a victory. I woke up early while it was still cool and took advantage of the pleasant morning air. I watered the plants and let the dogs out to run and play before the heat set in. Watching them chase each other around the yard brought a smile to my face. The morning had more in store. We went to get my daughter's cast removed from her broken elbow. It felt like a milestone worth celebrating, so we decided to treat ourselves. After her appointment, we went to a nail salon to mark the occasion. The day wouldn't be complete without a delicious fruit smoothie and a stop at Dunkin' Donuts. Simple pleasures, but they made the day special. I spent the rest of the time resting in bed, but I didn't mind. When I woke up, I noticed a painful bump on my hand. I must have hit something, though I can't quite remember when. It r...

Life with Multiple Sclerosis can be challenging but amidst the difficulties, there are precious moments that fill my heart with joy and give me the strength to keep going. This morning, I had one of those sweet, unforgettable moments. My 4-year-old son came into my room with a big smile, climbed into bed with me, and said, "I miss you so much, a million!" His innocent, heartfelt words were like a ray of sunshine, instantly lifting my spirits. He snuggled up close, wrapping his tiny arms around me, offering comfort and love without even realizing how much it meant. Meanwhile, my daughter was in the room, watching YouTube shorts on her phone. One particular video caught my attention—it was about racism, showing a privileged white lady harassing her neighbor. It struck a chord because my children have faced similar challenges. They've endured racist remarks, aggressive dogs, and even had guns pointed at them on multiple occasions. Despite these terrifying experiences, they r...

Today is another blistering hot day, the kind that makes even the simplest tasks feel like monumental challenges. I woke up feeling the weight of the heat pressing down on me, knowing it would be another day where MS and the weather conspired to keep me bed-bound. In the morning, I mustered the energy to get up and let the dogs in. As I tried to steady myself, the familiar dizziness hit me harder than usual. Before I knew it, I had lost my balance and landed on my rear end. The frustration of these moments is hard to describe. Balance and walking are already difficult with MS, but the added heat and fatigue make everything worse. Getting back to my feet took a concerted effort, and I was exhausted before the day had even begun. It became clear that today would be another one spent mostly in bed, trying to conserve my energy and cope with the relentless fatigue. The dogs, sensing my struggle, stayed close by, offering their quiet companionship. Their presence is a comforting reminder th...

Today was a scorcher, one of those days when the heat is relentless, and the sun seems to hang in the sky, glaring down without mercy. For most people, it's an inconvenience—a reason to crank up the air conditioning or head to the nearest pool. But for me, living with Multiple Sclerosis, days like this can be particularly brutal. The heat amplifies my fatigue, sapping my energy until even the simplest tasks feel insurmountable. By midday, I was completely bed-ridden, unable to muster the strength to move beyond the cool confines of my bedroom. The fan whirred softly, circulating the air in a futile attempt to bring relief, but the oppressive heat seemed to penetrate everything. Fatigue is a constant companion with MS, but on hot days, it feels like I'm carrying an extra weight, a heavy blanket of exhaustion that I can't shake off. It's frustrating and disheartening, knowing that the world outside is going on as usual while I'm confined to my bed, trying to conserve ...

Welcome to this quaint little nook of the vast digital realm, a space where I unravel the tapestry of my life, my musings, and the intricate journey I navigate while living with Multiple Sclerosis. Today, I embark on a heartfelt endeavor, a tribute to my beloved kids, a time capsule of words for them to uncover one day—a testament to the boundless love and care I hold for them. Dear children, this blog is more than mere text; it’s a mosaic of our shared experiences—the laughter, the tears, and the myriad moments that weave together the fabric of our lives. Should there come a time when I find myself unable to do certain things, please know it’s not a matter of desire or will; it’s the limitations of my body, no matter how fiercely I wish to defy them. It’s a truth I grapple with, and I hope you can grasp this sentiment as well. Moreover, this blog serves a dual purpose, acting as a diary to chronicle my symptoms ahead of my next doctor's visit. There are days when clarity eludes me...

The journey of exploring our personal narratives transcends mere self-reflection; it opens doors to a deeper comprehension of the human experience as a whole. Each story we carry is intricately woven with strands of joy, sorrow, triumph, and struggle, forming a vibrant tapestry that encapsulates the intricate nature of existence. As we delve into the depths of our narratives, patterns and themes begin to emerge, revealing the moments that have shaped who we are. You may discover recurring motifs of resilience in adversity or the significance of relationships that have navigated you through turbulent waters. Recognizing these elements can illuminate your core values and priorities, shedding light on what holds true importance in your life. Think about the profound influence of storytelling on our mental and emotional health. When we share our experiences, it becomes a powerful release, enabling us to process emotions and find clarity in our journeys. This act of externalizing thoughts t...