It’s not casual. It’s not polite. It’s emotional. I love it like a fool who knows better. My favorite is iced coffee with oat milk, a little honey, and just a tiny bit of creamer. That’s it. Cold, sweet, and smooth. Every sip makes me happy, even while my body plots against me.
Living with multiple sclerosis means almost every choice comes with conditions. Coffee is one of them. It helps me focus, gives me energy, and makes mornings less miserable. But the trade-off? It sends my bladder into panic mode. Some days, it feels like I’m going to piss on myself. And sometimes, I do. That’s the truth no one puts on inspirational posters.
Still, I drink it.
Every morning. Without fail.
Oh GOD please NO! I’m almost there.
It’s part of my routine, my mental ignition switch. Once I take that first sip, the fog that MS brings starts to lift. I put on my headphones, hit play on my endless playlist of over 250 hours of music, and I can finally think. My brain starts connecting again. I feel sharper, more capable, more me.
That’s the magic part of caffeine. Studies show it can boost alertness, concentration, and short-term memory. It gives your central nervous system a small jolt, helping you stay awake and focused. For many people with MS, that little spark can make a big difference when fatigue feels like a full-time job.
But there’s the other side. The one nobody romanticizes.
Caffeine is a diuretic. It makes you pee more. For people with MS, that can be a problem, especially if you already deal with bladder urgency or incontinence. It can also upset your stomach or make anxiety worse if you have a lot of it. And if you drink it too late in the day, it can wreck your sleep.
It’s a beautiful morning!!
So why do I still do it? Because it helps me start the day. Because it’s one of the few pleasures that still feels like mine. Because the smell of coffee in the morning makes me feel human before the rest of the world starts demanding things.
I know what the experts say. Keep it under 400 milligrams a day. Avoid it if it triggers symptoms. Listen to your body. And I do. But my relationship with caffeine isn’t about perfection. It’s about balance. Some days I win. Some days I lose. But most days, I get through the morning feeling awake and present, and that’s worth it.
Oh look a Dunkin Donuts on the corner!
Yes, my bladder might betray me. And yes, I can practically hear myself getting fat from the oat milk and honey. But that first sip is peace. It’s clarity. It’s control in a body that doesn’t always cooperate.
So no, caffeine and MS don’t make the healthiest couple. But like every messy relationship worth having, we make it work.
Me not being able to sleep at night.
Author’s Note:
Living with MS means choosing your battles. Some days, it’s walking. Some days, it’s bladder control. And some days, it’s deciding whether coffee is worth the risk. For me, it usually is. Because life with MS isn’t about perfection. It’s about finding small joys in the middle of the mess. This story is one of mine.
The path is always lit up for you. You just have to open your eyes.
Had a conversation with a friend today. Funny thing is, I was in the middle of writing a completely different blog post than the one I have for you today. But once we talked, I couldn’t shake the weight of our exchange. It felt like one of those moments you don’t want to lose to memory alone.
The truth is, I never really pictured myself writing for others to read. Putting words on paper is one thing, but letting the world peek through the window? That feels like standing exposed, naked in my truths and afraid of what people will think when they see me this way.
New phone who dis?
But here’s the part that keeps me writing anyway: I believe God places people in our path for reasons we don’t always understand. Sometimes they’re not here to teach you a lesson in the obvious sense, they’re here to remind you of who you are, and that He’s walking alongside you. I’m not the most traditional believer. Organized religion never fully spoke to me. Still, I can’t deny that certain connections run deeper than surface, brushing up against the soul in ways words barely capture.
My journey began long before multiple sclerosis came storming into my life and flipped everything upside down. Struggle, trauma, loss, self-destruction, I’ve sat with all of it. But when I sit with my friend, we don’t dwell on pain. We end up talking about gratitude, about how God moves through us and blesses us even when life feels heavy.
We are all one.
And maybe that’s the point. Maybe these people who enter our lives aren’t random at all. They’re living reminders that we’re never really walking alone.
What stayed with me after that conversation wasn’t just the words, it was the reminder that people themselves can be messages from God. We look for signs in the sky, answers in books, or some booming voice to show us the way. But more often than not, it’s the person sitting across from you, laughing with you, or even challenging you, who carries the reminder that He hasn’t gone anywhere.
My friend didn’t try to fix me or give me some profound sermon. Instead, the simplicity of their gratitude, the way they saw God moving in the everyday, reminded me that blessings don’t always wear grand clothes. Sometimes they show up in the form of a listening ear, a shared story, or a quiet moment that re-centers you.
I am Absolute.
When I think about the hardships I’ve carried struggle, illness, loss, it would be easy to let them define me. But gratitude changes the lens. It doesn’t erase the pain, but it shifts the focus. It says: yes, this happened, but look at what else happened too. Look at who walked in when you thought you were alone. Look at the way love still found you.
That’s what these connections do. They peel back the noise of life and point you straight to the truth: God is present, not just in church or holy texts, but in the people who remind you of your worth, who hold up a mirror so you can see yourself more clearly. And every time I encounter that, I feel less afraid to share my story because my story isn’t just mine. It’s a collection of all the people God has placed along the way.
A special sincere thank you to those who read my blogs, and are moved by my words. I do this not only for you but for me to leave something behind to remember me by. I love you and I hope you love me too.
It’s been quite some time since my last post, and I’ve been waiting until I had some good news to share. The past few weeks have been incredibly interesting, and I finally have something uplifting to talk about. This month, I received my infusion with the new drug Frexalimab. It’s a remarkable improvement compared to Ocrevus. The “O Juice” infusion is nearly an 8-hour affair, leaving me feeling sleepy and weaker than when I arrived in the morning. In contrast, the Frexalimab infusion takes only about an hour, followed by just one hour of observation. No need for pre-meds like Benadryl and steroids, which is such a relief! I feel so grateful for this change. The quicker process means less time spent at the hospital and more time feeling like myself. The new drug didn’t leave me feeling weak or tired.
There was a lot of blood that had to be drawn at the beginning before the infusion and then again right after it was done. Despite this, from the moment I arrived at the hospital, I was treated like a VIP patient. Everyone from the doctor to the research team and the nurse made sure I was comfortable and felt at home.
I’m so happy and grateful to have such a wonderful team of supporters. Although my wife didn’t come with me this time, and I felt a bit anxious without her, everyone’s kindness helped put me at ease. My wife is my number one supporter, and has always been there for me during my infusions, helping me with anything I needed. However, the day was so busy that I hardly noticed her absence. My wife had been with me earlier while I was waiting for my Access-A-Ride to arrive at our house. Spending that time together the morning of made me feel like I had an adventure waiting for me to tackle alone. She helped me with my wheelchair and gave me a playful pat on the butt, just like I was heading off on the short yellow bus. In a way it felt just like that, especially with those AAR vans resembling special needs buses, though they’re white instead of yellow.
My infusions will be scheduled once a month and administer at the same hospital. They say it will take a few months before I feel a little better. This is if I was given the real medicine and not the placebo. So why do this if I don’t know if I will receive the real thing or not. Well…I am doing this for other multiple sclerosis warriors who may benefit from this medicine. I want to contribute in some way, and I will continue to find other ways to help my fellow MS warriors.
Boy, do I have a story for you! When I say the Dominican Republic was hot, I mean H-O-T. Multiply that by ten, and you might get close. I couldn’t tolerate the heat for more than three hours before I went “Ctrl-Alt-Delete” on the whole situation. But let’s start from the beginning before I get into the part where I practically melted into a puddle. Our journey began at the ungodly hour of 4:30 am. Why? Because my lovely wife insisted we needed to be there three hours early for our international flight. The last time we flew as a family was to Puerto Rico last August, and it was a breeze. This time not so much. The airport was packed. I’m talking wall-to-wall people. My magic carpet, also known as my wheelchair had no superpowers that day. The priority line, which I paid extra for was just as long as the regular lines. So much for cutting ahead! When we finally reached security it was like I had a neon sign saying “Search Me.” I had to get my hands and wheelchair checked three times before they decided to pat me down again for good measure. The whole ordeal, excluding the time we spent waiting in line, took about 15-20 minutes. My family who was waiting looked utterly bewildered, like we had entered an episode of “Airport Security: Special Confusion Edition.” After all that, we finally made it to the gate, and I made sure the airline was aware of my wheelchair situation. Little did I know, the real adventure was just beginning. Stay tuned for more of our sizzling hot escapades in the Dominican Republic. Spoiler alert: there’s a lot of sweat, sun, and fun coming up!
Picking up where we left off, landing in the Dominican Republic was a bit of a challenge. Picture this: I step off the plane, expecting my trusty magic carpet (aka my wheelchair) to be waiting for me at the gate. Nope! They sent it off to the luggage carousel instead. Perfect. My wife had to flag someone down to get me a temporary wheelchair just so I could get to my actual wheelchair. Oh, the irony! But hey, being in a wheelchair does have its perks. I might have been the last one off the plane, but I was the first one through customs. The process took seconds, and before I knew it, I was at the carousel, reunited with my magic carpet. It was a similar story on the way back home. We zipped through the immigration process like seasoned pros. One minute we were at the gate, the next minute we were at baggage claim. I think my wheelchair secretly has some magical powers after all!
So, we stayed at the Hard Rock Resort in Punta Cana, and let me tell you, it’s quite the place. I personally love this hotel, and my kids? Well, they fell head over heels after discovering they could order room service a million times over. But seriously, they loved how massive the hotel is and the endless options of beach and pools. Now, let’s talk about the weather in the DR. It was scorching hot. I’m talking “is this where hell is located?” hot. As you may know due to my condition I have to avoid heat as much as possible. Unfortunately, there wasn’t much I could do to cool down in DR. The drinks were cool but never quite cold enough, and the pool? Let’s just say it was more like a warm bath than a refreshing dip. The one saving grace was laying on the beach well, sort of. You might be wondering how I managed that with my wheelchair. Well, this hotel has designated areas for people with disabilities, complete with huge bamboo umbrellas and accessible wood flooring to get you onto the sand. Of course there were a few times when I had to politely ask others to vacate the area. It’s frustrating when people take advantage of spaces meant for those who really need them. They really do not know how difficult it is to get around.
Check out this quick video to see just how accessible this hotel was for me. The video is in time lapse so pause if you want.
A quick tour. I was half way there before I decided to record. Look at my big belly!
Our family trip to the Dominican Republic taught us a lot, and I realized something wonderful: my kids are fully aware of my situation. I love them to death. They are the sweetest, most thoughtful kids any parent could wish for. For a long time, I thought they didn’t really understand what MS is or what it entails. But on this trip, I noticed they were more than understanding of my limitations and needs, often helping out without me even asking.
One of the highlights of our trip, aside from stuffing our faces with massive amounts of food and drinks, was tackling an Escape Room. It felt like a little team-building exercise for the family. Evan was hands-on with all the puzzles, while Jacey was busy researching the room and solving riddles. Mom and I were the backups. I mostly provided moral support and talked a lot, while Mom probably helped with one or two puzzles. But guess what? We did it! We made it out of the room with five minutes to spare. Honestly, I didn’t think we’d make it out in time.
This week brought a touch of adventure and a sprinkle of excitement. On Friday, I ventured to the MS Center in Manhattan for a series of tests to determine if I qualify for a new drug trial. This trial is for a promising medication called Frexalimab. Over the next six months, I’ll be visiting the hospital once a month for an infusion. Whether I receive the actual medication or a placebo will remain a mystery, but if I’m fortunate enough to be included, it could lead to a four-year commitment to the study.
I’ve never been part of a test trial before, so you can imagine my excitement. Being part of something that might help other MS warriors is exhilarating. Frexalimab was designed for relapsing MS and has shown great results in slowing down the progress of this uninvited disease. Researchers hope it can do the same for secondary progressive MS.
My Friday was packed with a slew of tests—blood work, urine samples, a physical exam, ECG, mental health evaluations, and an MRI with and without contrast. They really wanted to know me inside and out. They asked if I was suicidal or depressed. The questions seemed silly to me because I love my life and everything in it. They also wanted to know every single medication I was on. The list was about nine items long, including my holistic consumption of marijuana. Just for the record, I don’t smoke it recreationally; I use it to calm myself and help me sleep. By the end of our six-hour visit, my wife and I were running on fumes, with our social batteries depleted to 10%. We didn’t talk to each other all the way home, but that didn’t stop other people from talking to us. I didn’t engage politely.
How do I feel about this journey? Well, let me start by saying that my current treatment, Ocrevus, hasn’t been the beacon of hope I envisioned. Limited to only two medications due to being JCV positive, this trial could be a game-changer for those of us with secondary progressive multiple sclerosis. I’ve been on the “O-juice” since 2022, and my symptoms continue to worsen. So, I’m more than willing to be a guinea pig for the greater good of the MS community. The risks? Blood clots and potential death, but I refuse to let fear dictate my life.
Date Night and Final Thoughts
On a lighter note, my wife and I enjoyed a delightful “date night” on Saturday afternoon. I usually get anxious and stressed about going out. I worry about the temperature because I can’t tolerate the heat. That’s an MS symptom I wish I didn’t have because I love to be energized by the sun. Now a days get renders me useless if I am out for too long. I also get anxious about going to new places, wondering what obstacles I’ll encounter. If I’m going somewhere new, I get stressed. When my stress kicks in, my legs become spaghetti, and I forget how to walk. But then I remember I have my electronic wheelchair with me. This makes getting around a breeze for me and I have the freedom to get around.
I love going out with my wife when it’s just the two of us. So, we went to watch “Bad Boys” at the AMC theater. Now that I use a wheelchair, I get to sit all the way in the back with all the others. The back of the theater has always been the best seat in the house. It was an exciting outing, especially because I got to show off my new wheelchair. The compliments it garnered made us feel our purchase was indeed a great one. My wife and I felt a bit out of touch with modern conveniences at the theater when we ordered our drinks and snacks through a kiosk instead of a human. I’m not complaining about the change, but I do prefer human interaction. Navigating the kiosk felt like using the self-checkout at the grocery store—we weren’t quite ready for it! I couldn’t shake the feeling that I was getting old and that the world is changing so fast. But by the end of the afternoon, I only crashed into the wall once, which is progress! I usually average double that on a good day.
I always say that when people see me cruising in my wheelchair, they react in one of three ways:
They smile at me and look for ways to help.
They stare, checking out my cool wheels.
Or they see me walking with my hiking poles and can’t quite GET OUT OF MY WAY!!!
I’ll leave you with this thought: I often face hard days and nights, plagued by numerous health issues. But rather than being perpetually angry or frustrated, I wake up each day ready to see what new challenge wants to tango with me. I’m determined not to let MS ruin my day. Complaining is exhausting, and I choose to save my energy for better things. My complaints are often silent, with my beautiful wife being the only one who hears them. She would probably say I don’t complain much, and for that, I’m grateful.
Me Myself, and MS 