Mystorylivingwithlupus ,-"SM" (2025)

17/10/2025

Look At God

💜 When Lupus Touched My Heart

On August 20, 2025, I crashed — my heart was only functioning at 40%. Lupus had silently attacked it, and I needed a pacemaker to keep me here.

This device isn’t weakness — it’s a symbol of grace and strength. Every beat now reminds me that God isn’t finished with me yet. 🙏🏽

📖 “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” — Psalm 73:26 💜

13/10/2025

🌸 Living Fully With Lupus 🌸

Living with lupus doesn’t have to define you. With the right knowledge, the confidence to speak up, and a supportive community, you can shape a life that’s fuller, calmer, and kinder to your body.

💜 Read more: Living Fully With Lupus: You Are More Than Your Diagnosis — link in bio.

💬 Call to Action:
What helped you most when you were first diagnosed? Share your story in the comments — you might inspire someone today.

13/10/2025

🌟 Monday Motivation for Lupus Warriors 🌟

Every new week is a chance to prioritize your health, your peace, and your strength. Living with lupus can be challenging, but remember: small steps forward are victories too.

Take a deep breath, set gentle intentions, and celebrate the progress you’ve made — no matter how small. 💜

💡 Tip for this week: Focus on self-care first. Hydrate, rest when needed, and listen to your body. You are stronger than you realize.

13/10/2025

Indigenous Peoples’ Day Post

🌿 Honoring Indigenous Peoples’ Day 🌿

Today, we celebrate the rich cultures, histories, and contributions of Indigenous peoples across the world. Indigenous communities have shaped our lands, traditions, and knowledge systems for generations.

Let’s take a moment to listen, learn, and support Indigenous voices. Recognize the resilience, wisdom, and vibrant cultures that continue to thrive today.

💜 Ways to honor Indigenous Peoples’ Day:

Learn about Indigenous history and cultures

Support Indigenous-owned businesses and artists

Amplify Indigenous voices and stories

11/10/2025

🩵 “Lupus Often Fades With Age. Scientists Finally Know Why.”
📅 August 4, 2025 — ScienceDaily

New research from UCSF finds a striking insight: certain antiviral / immune genes become less active over time in people with lupus, which may explain why many patients see their symptoms ease as they grow older.
(ScienceDaily)

🔬 What the Study Showed

In lupus, the immune system’s antiviral defenses — especially interferon pathways — sometimes misfire and attack the body’s own tissues.
(ScienceDaily)

Surprisingly, as lupus patients age, the activity of these overactive immune genes diminishes, leading to lower levels of inflammation and interferon signaling.
(ScienceDaily)

In contrast to the usual pattern of “inflammaging” (where inflammation increases with age in healthy individuals), people with lupus showed a reversal: gene expression and inflammatory molecules were high in midlife but declined in older age.
(ScienceDaily)

However, even in older age, lupus patients still maintain somewhat higher inflammatory signals than healthy peers — the activity doesn’t fall fully to baseline.
(ScienceDaily)

🌱 What This Means for Our Community

The idea that lupus always worsens with time isn’t always true — for some, there is a natural “easing” of disease activity later in life.

This discovery gives scientific support to what some patients and doctors have observed: that disease intensity can lessen with age, especially past certain decades.

It raises hope for age-tailored treatments — maybe therapies that block interferon or other immune pathways could be adjusted based on a person’s age or stage of disease.

It’s a reminder that the immune system is dynamic. Even in chronic illness, change is possible.

💬 A Message for You

If you’ve noticed changes in your disease over the years — especially improvements or shifts in symptom intensity — I’d love to hear your story. Sharing experiences helps others in our community find hope and validation.

Let’s keep advocating, learning, and holding onto possibility. 💜

11/10/2025

🌸 Saturday Strength & Serenity 🌸
🗓️ October 11, 2025

This weekend, take a moment to breathe — really breathe. You’ve made it through another week of challenges, of pushing through pain, of showing up even when your body said “rest.” That takes courage. That takes heart. 💪🏽💜

Living with lupus means every day is different — some days bring sunshine, others bring storms. But even on the hardest days, never forget: you are still blooming, even in the rain. 🌧️🌷

✨ Rest isn’t weakness — it’s healing.
✨ Slowing down isn’t giving up — it’s listening to your body.
✨ Hope isn’t naïve — it’s your greatest strength.

So today, give yourself permission to simply be.
Drink your tea slowly, listen to music that calms your soul, and remind yourself — you are doing better than you think. 💖

Keep shining, warriors. The world needs your light. 🌞

10/10/2025

🧠 New Research Spotlight: Brain Changes & Mild Cognitive Impairment in Women with Lupus

A groundbreaking study published on October 9, 2025 via the Lupus Foundation of America has revealed that women with systemic lupus erythematosus (SLE) who experience mild cognitive impairment (MCI) show measurable changes in brain structure — even when conventional MRI scans appear normal.
Lupus Foundation of America

Here’s what the study found (and why it matters):

🔍 Key Findings

Using advanced MRI techniques, researchers compared three groups:
1. Women with SLE + MCI
2. Women with SLE but without MCI
3. Healthy women without SLE
Lupus Foundation of America

They observed reduced gray matter volume (GMV) in the medial region of the right superior frontal gyrus in both lupus groups compared to healthy controls.
(Lupus Foundation of America)

There was thinning of cortical thickness (CT) in regions including the left paracentral and postcentral gyrus, as well as the right pars triangularis and superior frontal gyrus.
(Lupus Foundation of America)

💡 Why This Matters

These morphological changes may act as biomarkers — early warning signs of cognitive decline in women with lupus, allowing more timely interventions.
Lupus Foundation of America

❤️ A Message for Our Community

To every woman navigating life with lupus, especially those noticing memory troubles, “brain fog,” or mental fatigue — you are not alone. This research gives voice to what many of you feel. It tells us that your experiences are real, and that science is catching up.

Let’s continue:

Advocating for cognitive evaluations as part of standard lupus care

Pushing for access to advanced imaging and better brain health monitoring

Supporting research that bridges the gap between subjective experience and objective findings

10/10/2025

Today, October 10th, is World Mental Health Day—a global initiative to raise awareness, mobilize efforts, and reduce the stigma surrounding mental health issues.

Mental health is fundamental to our overall well-being, yet too often it is overlooked. On this day, we are reminded that taking care of your mind is just as important as taking care of your body.

This year's theme, "Mental Health in Humanitarian Emergencies," highlights the urgent need to address the psychological toll of crises like conflicts, disasters, and health emergencies. It calls on all of us—governments, organizations, and individuals—to ensure that mental health support is a vital and readily available part of all emergency responses.

💙 What You Can Do Today:
Check in on yourself: Take a moment to pause and honestly assess how you are feeling. What does your mind need right now?

Check in on a loved one: Send a text, make a call, or grab a coffee with someone and ask, "How are you really doing?" Be prepared to listen without judgment.

Educate yourself: Learn more about mental health conditions, the signs of struggle, and the resources available in your community. Knowledge is power, and it builds empathy.

Practice Self-Care: Do one small thing that brings you peace or joy—a walk outside, a few minutes of mindful breathing, or simply unplugging from the news.

Remember: It's okay not to be okay. You are not alone, and reaching out for support is a sign of strength.

Let's continue to work every day to normalize conversations, break down stigma, and build a world where mental health is a priority for all.

10/10/2025

🌿 Keep Shining Through the Storm 🌿

Some days with lupus feel heavier than others — the pain, the fatigue, the uncertainty. But even in those moments, remember this: you are not your illness. You are strength, courage, and resilience wrapped in one beautiful soul. 💜

Every time you wake up and face the day, you’re winning. Every time you smile through the pain, you’re inspiring someone else who needs hope.

✨ Take it one step at a time.
✨ Rest when you need to.
✨ Celebrate every small victory — because they matter.

You are living proof that even when life throws challenges your way, your light can still shine bright. 💫

30/09/2025

What Is MASH Disease — & Why It’s Called a “Silent Killer”?

You might recognize NASH (nonalcoholic steatohepatitis), but the medical community has shifted terminology: it’s now often called MASH — metabolic dysfunction–associated steatohepatitis — to better reflect its roots in metabolic dysfunction.

But what does that mean — and why should someone with lupus or chronic illness care?

🔍 What Is MASH & How It Relates to NASH

MASH and NASH describe essentially the same underlying disease process: fat accumulating in the liver, triggering inflammation, cell injury, and scarring (fibrosis).

The shift from “non-alcoholic steatohepatitis (NASH)” to “metabolic dysfunction–associated steatohepatitis (MASH)” is intended to remove stigma and emphasize that this disease is tied to metabolic factors (obesity, insulin resistance, dyslipidemia) — not just alcohol use.

MASH is part of a spectrum — the milder form is MASLD (metabolic dysfunction–associated steatotic liver disease), formerly called NAFLD. Some people with MASLD progress to MASH.

Because of this progression, many people walk around with early liver changes without symptoms — hence why it’s often called a “silent killer.”

⚠️ Signs & Symptoms

Because the early stages are often silent, many people don’t know they have MASH until more damage has been done.

Possible signs or symptoms (especially in later stages) include:

Fatigue, weakness

Unexplained weight loss

Pain or discomfort in the upper right abdomen

Elevated liver enzymes on blood work

Jaundice (yellowing of skin/eyes)

Fluid build-up (ascites) or swelling of the abdomen

Confusion or “brain fog” (hepatic encephalopathy)

Bleeding or easy bruising

Signs of cirrhosis or liver failure in advanced cases

Because lupus patients often have multiple overlapping symptoms (fatigue, pain, etc.), it’s challenging to detect, which is why awareness is so important.

To learn more about MASH, check out the article in MEDPage Today ( September 17, 2025) Dan Marino's MASH Diagnosis: What to Know About 'Silent' Disease
— Doctors urge awareness, screening for liver condition that often has no obvious symptoms

30/09/2025

Why I Said No to Gabapentin: What You Need to Know.

I was once prescribed gabapentin 800 mg every 4 hours for SLE and fibromyalgia pain. Did I take this medication? Nope — and here’s why:

There are medical professionals who act as though a pill can fix everything. But when I asked questions about gabapentin — especially since it behaves more like a controlled substance in many respects — I got no satisfying responses. So I did my own research and firmly told myself: “Oh no, not me — I’ll deal with the pain.”

Here’s what I discovered:

According to a CDC analysis reported by MedPage Today, gabapentin prescribing has skyrocketed in recent years. It became the fifth most dispensed product in U.S. retail pharmacies in 2024.

Between 2010 and 2024, prescription rates grew from 79.5 to 177.6 per 1,000 people.

While gabapentin is often touted as a “safer” alternative to opioids, there are documented risks — including cognitive effects and other side effects — that many patients and prescribers underappreciate.
Facebook

These are my views. It’s vital you ask real, tough questions of your medical professionals. We are not a one-size-fits-all group — what works for one person might do more harm than good for another.

If you’re on gabapentin (or thinking about it), don’t accept vague assurances. Ask:

What are the risks and side effects specific to you?

Are there non-drug options or adjunct treatments worth trying first?

How will you monitor whether this drug is helping or harming over time?

Healing is personal. Speak up for your health. Check out the article in MedPage Today (September 29, 2025) Gabapentin Use Skyrockets Despite Risks, CDC Analysis Shows
— Anticonvulsant was America's fifth favorite prescribed drug in 2024

03/09/2025

Lupus & Rheumatoid Arthritis Hit Pregnant Veterans Hard

Recent research reveals a stark reality: pregnant veterans living with autoimmune conditions like systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) face significantly higher risks during pregnancy. A pivotal study of U.S. veterans aged 18–45 (with at least one VA primary care visit in the year before pregnancy, covering 2009–2019) found:

Pregnancy loss (such as miscarriage, stillbirth, or ectopic conditions) occurred in 36% of veterans with SLE and 30.4% with RA, but only 25.2% among veterans without these diagnoses.

Severe Maternal Morbidity (SMM)—serious complications during or within 42 days after pregnancy—was seen in nearly 10% of SLE patients and 4.3% of RA patients, compared to just 3.2% in others.

PubMed

Another abstract reinforces these findings:

Roughly 37% of pregnancies among veterans with SLE and 29% among those with RA ended in miscarriage or ectopic pregnancy, versus 25% in the general veteran pregnancy population.

Over 10% of SLE pregnancies and 5% of RA pregnancies experienced SMM, compared to 3% overall.

ACR Meeting Abstracts

A Personal Perspective

Reading these statistics, I can't help but feel a deep sense of compassion—and urgency. These aren’t just numbers on a page—they represent real people: women and mothers who have served our country and now face steep medical odds during one of life’s most vulnerable times.

I think about the added burden veterans often carry—stressors like PTSD, exposure to burn pits, or military sexual trauma—that not only heighten autoimmune risk but also complicate pregnancy outcomes. The emotional and physical toll this takes is immense.

Mystorylivingwithlupus ,-"SM"

17/10/2025

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