XO Samantha Jo

Tag: Chronic Illness

  • Early Signs of Multiple Sclerosis I Ignored for Years

    It Started Earlier Than I Realized

    For most of my life, like as far back into my childhood as I can remember, my body has done weird stuff.

    I remember getting ready for a formal event as a teenager and telling my mom how tired I was. I went to lay my head down on the bathroom counter, but I passed out and hit my head instead.

    Another time, I was walking down the stairs. The same stairs I had walked down multiple times a day for my entire childhood. And I tripped and went head over heels all the way to the bottom. My poor mom heard the whole thing and ran to help me. I ended up kicking her in the face and breaking her glasses.

    There was also a time when my feet went completely numb. That numbness slowly crawled up my legs and lasted for about three weeks before it finally went away.

    What’s crazy is no one seemed worried enough about these things to run more tests.

    The Things I Learned to Ignore

    To be fair, I had been sick my whole life.

    I was hospitalized multiple times as a baby because of asthma. Being sick was just part of who I was.

    So when weird things happened, they didn’t feel like red flags. They just felt like… me.

    As I got older, it didn’t stop.

    The leg numbness came back more than once. I was always exhausted. Not just tired, but the kind of fatigue that takes over your whole body. I would come home from work, fall asleep, wake up just long enough to eat dinner, and then go right back to bed.

    Looking back, I honestly don’t know how I managed to do everything I did during that time.

    Because the truth is, I wasn’t thriving. I was barely keeping up.

    When It Got Hard to Explain Away

    At one point, I was fired from a job because I had to miss so much work for doctor’s appointments.

    The problem was, I didn’t have answers. No diagnosis, nothing concrete. And the people at that job didn’t have much empathy for someone who couldn’t push through long days nonstop.

    I was sleeping my life away, and every time I tried to get help, I heard the same things.

    Stress. Hormones. Anxiety.

    You know, the usual things women get told when they’re trying to figure out what’s wrong with their own body.

    After a while, you start to believe it.

    The Symptom That Changed Everything

    It wasn’t until the middle of the pandemic that something finally felt different.

    I woke up one day with double vision.

    And the crazy part is, I didn’t even take it seriously at first.

    After being brushed off so many times, I had learned to brush myself off too. I assumed it would go away like everything else always had.

    It wasn’t until I made a post on social media asking if anyone else had experienced double vision that I paused and thought, maybe something isn’t right.

    Even then, I didn’t go straight to the emergency room. I went to an eye doctor first. They took one look at me and told me I needed to go to the ER.

    This was May of 2020. Hospitals were overwhelmed and understaffed. I waited for twelve hours and was never even seen.

    Meanwhile, things were getting worse.

    My double vision wouldn’t go away. The right side of my face started going numb and felt almost paralyzed. I had burning sensations all over my head.

    And somehow, I was still going to work.

    I had to wear an eye patch just to drive, because my vision was fine out of each eye, but my eyes wouldn’t work together.

    Finally Being Heard

    Luckily, I have a primary care doctor who actually listens to me.

    She saw me as soon as she could and ordered MRIs.

    Those MRIs showed demyelination consistent with Multiple Sclerosis.

    Just like that, there was finally an answer.

    What I Wish I Knew Sooner

    It’s strange to look back now and realize how long my body had been trying to tell me something was wrong.

    The signs were there.

    I just didn’t know how to connect them. And honestly, I didn’t think anyone else would either.

    When you’re dismissed enough times, you start to question yourself. You start to minimize things. You convince yourself it’s not that serious.

    So you keep going.

    You keep pushing.

    You keep ignoring what your body is trying to say.

    It wasn’t just that no one else took it seriously.

    Eventually, I didn’t either.

    And that’s the part I’m still learning to forgive.

    If This Sounds Familiar

    If you’ve ever felt like something was off in your body but couldn’t get anyone to really listen, you’re not alone.

    I mean that.

    I’d genuinely love to hear your experience.

    XO,
    Samantha Jo

  • The Things I Had to Grieve After My MS Diagnosis

    Getting diagnosed with MS didn’t just change my health.
    It changed my expectations for my life.

    The shift was gradual and sudden all at the same time.

    Overnight, I had to start moving differently—medications, doctor’s visits, monitoring everything. But I didn’t immediately change who I was.

    I still had an active social life.
    I still competed in powerlifting.
    I still showed up the same way.

    At least, at first.

    The Version of Me I Thought I’d Be

    When I was first diagnosed, I had only been powerlifting for about three years—but I was obsessed. It had become a huge part of my identity.

    I pushed through workouts without consequences.
    I had what felt like unlimited energy.

    Three max-effort squats, bench, and deadlifts in a single meet? No problem.

    I was in my peak powerlifting era—and I was killing it.

    And then came the medications.

    The side effects lists.
    The appointments.
    The reality check.

    I didn’t lose that version of myself all at once.

    I lost her slowly.
    Little by little.

    She still shows up sometimes—on really good days. But even then, it comes with a cost.

    And there’s always that quiet thought in the background:

    Who would I be if MS hadn’t found me during this chapter of my life?

    In the words of Toby Keith:
    “I’m not as good as I once was, but I’m as good once as I ever was.”

    My Body Changing

    My body didn’t change overnight—but it changed in ways I couldn’t ignore.

    The first medication I was prescribed took a serious toll on my immune system. And at the time, my doctors weren’t monitoring it the way they should have been.

    When I switched neurologists, she told me my immune cell count was lower than an HIV patient’s.

    And this was during the height of COVID.

    She immediately took me off that medication. What followed was weekly lab work, waiting and hoping my immune system would recover.

    Then came infusions.

    At first, they were rough. I had allergic reactions and had to be pumped full of steroids and antihistamines—which came with their own set of side effects.

    Everything felt unfamiliar.

    I felt like I was living in someone else’s body.

    Not the one that could back squat 500 pounds.

    And somewhere in all of that, I stopped trusting my body the way I used to.

    What’s wild is that even before my diagnosis, I had symptoms. Weird things would happen—but I brushed them off. I pushed through.

    Part of that came from years of medical gaslighting. Not being believed.

    Eventually, I started gaslighting myself.

    Telling myself I was fine—until I wasn’t.

    I’m still strong. I still lift.

    But it doesn’t look the same. It doesn’t feel the same.

    And that’s something I’ve had to come to terms with.

    Spontaneity

    One of the biggest things I’ve had to grieve is my spontaneity.

    I love adventure.

    That version of me would book a random Friday night flight to Orlando for the weekend—or meet up with a friend for dinner and drinks without a second thought.

    My soul still craves that.

    But my body requires planning.

    I try to be spontaneous when I can—but even that requires preparation. I have to make sure I have the energy reserve to follow through.

    And there are some things I just don’t do anymore.

    I don’t drive long distances by myself.

    I deal with bouts of dizziness and vestibular migraines, and it’s not worth the risk. The anxiety alone—wondering if something might hit while I’m driving—is enough.

    So I’ve had to grieve the version of me who would hop in the car and drive two hours for a random weekend trip.

    That version of me doesn’t exist anymore.

    Time & Energy

    Grieving time has been one of the hardest parts.

    I get frustrated when I can’t spend my time the way I want to—especially because I have fewer “good” days than I used to.

    When I feel good, I want to live. I want to enjoy it.

    I don’t want to spend that time at doctor’s appointments or fulfilling obligations that drain me.

    Because of that, I’ve had to set hard boundaries.

    With family.
    With friends.
    With expectations.

    I can’t always do last-minute plans. I’ve had to learn how to say no—even to people I love.

    And honestly? Saying no has saved me from a lot of resentment.

    It’s easier to set clear boundaries than to silently feel like my time and energy are being taken from me.

    I already lose enough of both to fatigue and recovery.

    I’m not willing to lose more to things—or people—that don’t respect it.

    The Identity Shift

    More than anything, I’ve had to shift my identity.

    From:
    “I can push through anything.”

    To:
    “I’m strong—but I have limits.”

    And that’s not an easy shift to make.

    If you’ve ever tried to quit something like smoking or vaping, you know it’s not just about stopping the habit. It’s about changing how you see yourself.

    From “I’m a smoker” to “I’m not a smoker.”

    Until that identity shifts, the habit usually wins.

    Chronic illness forces that kind of identity shift—but without your permission.

    And it comes with grief.

    Because I didn’t just lose energy.
    I didn’t just lose spontaneity.
    I didn’t just lose endurance.

    I lost the illusion that I was invincible.

    I had what felt like an existential midlife crisis in my thirties.

    And I’m just now starting to come out on the other side of it.

    Grief doesn’t always look like sadness.

    Sometimes, it looks like adjustment.

    And learning how to move through life as someone new.

    XO,
    Samantha Jo

  • A Day in My Life with MS (Unfiltered Version)

    As a chronically ill girlie who also works a 9–5, I sometimes struggle with the most basic things. Here’s what a day in my life actually looks like.

    I’m giving you the raw, unfiltered version.

    No sugarcoating and no toxic positivity.

    Morning

    My alarm goes off at 6:15 every morning. The snooze button and I are best friends. I repeatedly hit that thing until 6:50 or sometimes 7:00, depending on how fatigued I am.

    It’s important to say that I’ve never been a morning person. My mom used to leave the house phone—yeah, I’m old enough to remember landlines—and an alarm clock by my bed before she left for work.

    The alarm would go off, and she would call me multiple times to wake me up for school. On several occasions, she had to leave work to come home and wake me up. None of us were happy when they happened.

    In retrospect, that should have been our first clue that something was wrong. I know teenagers are seen as tired and lazy, but this was a different level. I literally could not make myself wake up and get ready for the day. Mornings were the absolute worst.

    As an adult, I know I have responsibilities that depend on me getting up on time—like making it to work so I can pay my bills. So I’m more aware of it now. I set my alarm early so I can give myself time to wake up.

    Trust me, I’ve read all the personal development books. I know the benefits of waking up at 5 a.m. and getting out of bed on the first alarm. I know Mel Robbin’s famous 5-second rule. And on good days—when I’m feeling 90% or better—I can do that.

    But with chronic illness, those days just aren’t as common.

    So realistically, I’m out of bed around 6:50 or 7:00.

    From there, I go straight into my routine. I’ve simplified my mornings down to the bare minimum that still helps me feel put together and gets me out the door on time. My hair and makeup are basic.

    I have eyelash extensions because they help me feel pretty without spending energy on mascara every day. I have nailed my makeup routine down to a 10 minute process, and my hair—on a good day—takes about 15 minutes.

    Once I’m ready, I grab my gym bag (packed the night before), my purse, and my laptop bag—and I’m out the door.

    Now, all of that depends, on whether or not everything went completely smoothly that morning. I’m the type of person who seems to attract chaos no matter how much I try to push those vibes away.

    I also live in a house with two dogs, three cats, three adults, two teenagers, and a seven year old. Choas is practially my middle name. And a perfect morning routine? Yeah, definitely not going to happen most days,

    The Commute

    I live in a beautiful suburb outside a large metro, but I work downtown. On a good day, the commute is about 30 minutes if I take the highway.

    Here’s the problem: I rarely take the highway.

    Traffic is chaotic. Where I live people either drive 100 mph or 50 mph. There are multiple wrecks daily. It absolutely wreaks havoc on my anxiety and my nervous system.

    I would rather have a 45–50 minute commute than deal with the crazy drivers or be involved in a deadly accident.

    So I take the city streets.

    If I leave on time, I might stop for coffee. If not, I just hit the road, turn the music up, and go. My music choice depends entirely on my mood. Sometimes it’s music, sometimes it’s a podcast or audiobook if I’m feeling motivated—but most of the time, it’s just whatever I need that day.

    Workday

    Once I get downtown and into the building, my mornings are usually pretty smooth.

    I work directly with the public in an administrative office. Once everything is open and I’m logged in, that’s when I take my daily medication. I keep it in my purse so I know I’m taking it at the same time every day.

    Midday looks pretty similar most days. I get an hour and a half for lunch, which I know is something most people don’t get—and I try not to take that for granted.

    Sometimes I go to lunch with coworkers. Sometimes, if I’m feeling good and really locked in, I use that time to walk and get my steps in. Other days, I run errands I wouldn’t have time for otherwise.

    It all depends on how I feel.

    After Work

    Three nights a week, I go to the gym.

    How those workouts go depends on everything—how I slept, how I woke up, how stressful the day was.

    At the height of my powerlifting career, I was spending two hours a night lifting heavy. That’s just not feasible for me anymore.

    I was diagnosed with MS during that time—and I kept going for a long time after.

    Now, I’m about six years into my diagnosis, and things look different. I’ve scaled back, and my workouts are more of a powerbuilding style now. It works better for my body at this stage.

    Over the last few months, I’ve had new symptoms pop up, so I’m learning—again—how to adjust. I do what my body allows, while still pushing myself enough to remind it that I’m still here.

    But by the time I’m done working out, I’m exhausted.

    One night a week, I schedule a grocery pickup that I’ve put together throughout the day. I rarely go into grocery stores anymore. My energy is better spent elsewhere.

    I also schedule things like lash fills, hair appointments, and nail appointments in the evenings. It helps me avoid using my work time off for those things.

    Most of my sick time and personal time is already used for doctor’s appointments, flare-ups, or days when I physically can’t function.

    I’m incredibly lucky to have a job that offers sick time, personal time, and good insurance. I don’t take that for granted. I’m extremely aware that I’m an anomly in the chronic illness community,

    Night Routine

    My nighttime routine is simple.

    When I get home, I eat dinner, shower, and relax however I need to that day.

    I currently live with my best friend and her family, so there’s usually some time spent with them—laughing, talking, just being around people—before I go to my room to read, write, or play video games.

    Some nights, though, I come home and go straight to bed.

    It just depends on how exhausted I am.

    The Reality

    If there’s one thing you should take away from this entire routine, it’s this:

    Everything depends on my fatigue level.

    When I was younger—before my diagnosis—I would go and go and go until I crashed. I would hit a wall so hard that I needed one or two full days to recover. I never understood why I couldn’t keep up with everyone else.

    Exhaustion always seemed to take over my life.

    Post-diagnosis me still pushes too hard sometimes.

    But now, I’m more aware of the cost.

    My body has an alarm system—and it’s loud.

    Fatigue. Brain fog. Weakness.

    It doesn’t gently suggest that I slow down. It forces me to.

    And I’m still learning how to listen before it gets to that point.

    Some days I get it right.
    Some days I don’t.

    Every day I wake up and try.

    XO,

    Samantha Jo