Mystorylivingwithlupus ,-"SM" (2025)

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.

15/08/2025

💜 You are stronger than you think. 💜

Living with lupus means facing battles that others can’t see. Some days, even getting out of bed feels like a victory. But every step you take, no matter how small, is proof of your resilience.

Remember:

You are not defined by your diagnosis.

You are more than your flares, fatigue, and lab results.

Your story is one of courage, hope, and perseverance.

🌈 Your light still shines, even on the cloudy days.
Keep moving forward, keep speaking your truth, and keep showing up for yourself.

💬 Comment “💪” if you’re choosing strength today!

14/08/2025

“Just diagnosed with lupus? Here’s a quick guide to what your lab tests may actually mean—helping you better understand your journey and what to expect. 💜”

Lab Tests You Need to Know — for newly diagnosed lupus warriors

2 — ANA (Antinuclear Antibody):

Detects antibodies targeting your cells’ nucleus.

Nearly 95–98% of lupus patients test positive, but it's only a clue—not a diagnosis.

A positive ANA prompts further testing.

3 — Anti-dsDNA (Double-Stranded DNA Antibody):

More specific for lupus—especially active disease.

Often used to confirm diagnosis and monitor flares, especially with kidney

4 — ESR (Erythrocyte Sedimentation Rate):

A general inflammation marker.

Often elevated during lupus flares, though not specific to lupus.

5 — mfERG (Multifocal Electroretinography):

An eye test that measures how your retina reacts to light through multiple spots at once.

Especially helpful to detect early signs of hydroxychloroquine-related eye changes.

More sensitive and precise than standard field tests.

6 — Encouragement & Hashtags:
“Understanding these tests helps you take charge of your care. Ask your rheumatologist about them—knowledge is power!”

Use hashtags like:

14/08/2025

🌄 When the mountain in front of you seems too big, remember Who moves it.

Living with lupus can feel like facing a mountain every single day—pain, fatigue, fear, uncertainty. Sometimes it feels impossible to climb. But here’s the good news: you don’t have to do it in your own strength.

📖 “Truly I tell you, if you have faith as small as a mustard seed… you can say to this mountain, ‘Move from here to there,’ and it will move.” — Matthew 17:20

Your “mountain” might be your health challenges, finances, or even just the mental battle to keep going. Whatever it is, speak to it. Declare that it will not have the final say over your life.

💜 Today, tell your mountain to MOVE. Stand in faith, trust God, and take that next step forward—no matter how small.

If this spoke to you, drop a 🌄 in the comments. Let’s encourage each other to keep climbing.

29/07/2025

📉 Health Insurance Cuts & Lupus Care: What You Can Do to Protect Your Health

Living with lupus is already a daily challenge. But for many of us, there’s a new threat: cuts in health insurance coverage that make it harder—and sometimes impossible—to access the care we need.

These changes can feel overwhelming. But this is not the time for panic. It’s time for a plan.

🛑 Don’t make a scared plan—make a strong one.

✅ Stay ahead of what’s coming, not behind it.

We cannot afford to be caught off guard. With lupus, delayed care can lead to flares, hospitalizations, and long-term damage. Staying informed and proactive is your best defense.

💪🏽 Action Plan for Dealing with Insurance Cuts
✅ 1. Review Your Plan Thoroughly
Don’t wait until you’re at the pharmacy or denied a specialist visit. Review your Summary of Benefits and Coverage (SBC) now:

Are your medications still covered?

Have specialist visit limits changed?

Are lab tests or infusions still in-network?

📞 If anything looks different, call your insurance provider immediately.

✅ 2. Ask for a Medical Necessity Letter
If your treatment was denied, request a letter from your rheumatologist. A strong medical justification can reverse insurance decisions. You don’t have to fight this alone—bring your medical team into the fight.

✅ 3. Get Support Paying for Medications
If your prescriptions are no longer fully covered:

Use discount tools like GoodRx, SingleCare, or NeedyMeds

Apply for manufacturer assistance programs

Ask about 340B pricing through local clinics or hospital systems

✅ 4. Explore Community Clinics & FQHCs
Community health centers often offer care on a sliding scale, with labs and specialists available. Use the HRSA Health Center Finder to locate resources near you.

✅ 5. Appeal Every Denial
Never accept “no” as the final answer. File appeals, request peer-to-peer reviews, and get advocacy help. Many patients win after persistence. Reach out to:

25/07/2025

🧘🏽‍♀️✨ July 24, 2025 – Mindfulness for Chronic Illness ✨🧘🏽‍♂️

Living with chronic illness can be overwhelming—but mindfulness offers a powerful way to take back control. 🧠💜

Practicing mindfulness and meditation can help:
🌬️ Reduce stress and flare-ups
🧘🏽‍♀️ Improve focus and emotional balance
💤 Support better sleep
💖 Create space for healing and self-compassion

Here are a few tips to get started:
🕯️ Start small – 5 minutes a day is enough
📱 Try guided apps like Calm or Insight Timer
🌅 Breathe deeply, especially during flares
🌿 Focus on what you can control, not what you can’t
📓 Keep a “Mindful Moments” journal

Your body may fight battles, but your mind can still find peace and presence.
🫶 Let mindfulness become part of your wellness journey.

23/07/2025

📚💜 Educational Resources for Lupus Awareness 💜📚

Knowledge is POWER when you're living with lupus!
We’re here to help you feel informed, empowered, and supported every step of the way. 🙌

🌟 Explore our FREE lupus resources:
📖 eBooks packed with insights on symptoms, nutrition, flare management & daily wellness
📺 YouTube Channel – My Story Living With Lupus – featuring expert tips, real-life stories, and powerful education to help you thrive

Whether you're newly diagnosed or a long-time warrior, these tools are made for you 💪💬

🔗 Visit our bio for links to our ebooks and YouTube content!
📲 Share this with someone who needs support today!

22/07/2025

🥗💪 Nutrition Tips for Lupus Management 💪🥗

Did you know that what you eat can make a big difference in how you feel with lupus? 🌿

A balanced, anti-inflammatory diet can help reduce flares, support your immune system, and boost overall energy.✨

✅ Focus on:
🥦 Leafy greens & veggies
🍓 Fresh fruits rich in antioxidants
🌰 Omega-3s (like walnuts & flaxseeds)
🌾 Whole grains
🚫 Limit processed foods, added sugars & sodium

🍽️ Explore how healthy eating can enhance your wellness journey and support better lupus management from the inside out.

💬 What's your go-to lupus-friendly meal? Share below!

Also check out our eBooks in our online store.

22/07/2025

After 20+ years of being on hydroxychloroquine .

🧬 20+ Years on Hydroxychloroquine • mfERG Test Day 🧬

📍 Today, after over two decades on hydroxychloroquine for SLE, I underwent a multifocal electroretinography (mfERG). Let me share why this matters and what the experience was like…

⸻

🧠 What is mfERG?
• A specialized, objective test that maps electrical signals across many small regions of my macula (central retina) .
• It measures the health of photoreceptors and bipolar cells — especially important in detecting early toxicity before any structural damage appears .
• The American Academy of Ophthalmology includes mfERG as one of the key tests for long-term hydroxychloroquine monitoring .

Have your rheumatologist suggested this testing for you.

21/07/2025

🧠💜 Mental Health Matters for Lupus Patients 💜🧠

Living with lupus doesn’t just affect the body—it takes a toll on the mind too.
Fatigue, pain, and uncertainty can lead to anxiety, depression, and emotional exhaustion. 😔💭

But you are not alone.

📌 Learn about the impact of lupus on mental health
📌 Discover real coping strategies that work—like mindfulness, support groups, therapy, and rest.
📌 Know that your mental health is just as important as your physical health.

👉 Let’s break the silence. Start the conversation. Support one another.
🫶 Because awareness is power—and support saves lives.

17/07/2025

🌍🎉 Happy World Emoji Day! 🎉🌍

Today’s the perfect day to express yourself with emojis! 💬✨
We want to see the emoji that best represents your wellness journey.
Is it 💪 for strength? 🌿 for healing? 🧘🏽‍♀️ for peace?

👇 Drop your favorite wellness emoji in the comments and tag us!
Let’s flood the feed with positivity, strength, and self-love 💖🌈

16/07/2025

🚨 Chronic Illness Community: Be Ready – Health Insurance Is Changing

The “Big Beautiful Bill” just passed—and whether you're cheering or feeling uncertain, one thing is clear: major changes to our health insurance system are coming.

For those of us living with chronic illnesses, this isn't just policy—this is survival.

Here's how to stay ahead, protect your care, and make sure your voice is heard:

💡 1. Know What You Have — And What You Could Lose
If you rely on medications like hydroxychloroquine, biologics, or infusions, now is the time to:

Review your current plan

Check if your specialists and treatments are still covered

Understand your out-of-pocket limits

📄 Tip: Screenshot or print your current plan summary for reference.

🧭 2. Don’t Miss the Transition Notices
You might receive:

A termination letter from your plan

A revised benefits guide

New open enrollment dates

🗓️ Stay connected to Healthcare.gov and Medicare.gov for real-time updates.

📬 Check your mail and email frequently.

💬 3. Demand Help — It’s Your Right
Don’t try to figure this out alone. There are trained healthcare navigators who will walk you through:

Finding a new plan that fits your medical needs

Understanding new rules around Medicaid, co-pays, and premiums

Filing appeals if your treatment gets denied

🔗 Find local support here: LocalHelp.HealthCare.gov

⚠️ 4. Check for Medicaid Cuts or Coverage Expansion
Some states may gain coverage. Others might slash services, especially for:

Long-term care

Home health aides

Durable medical equipment

Mental health support

🧾 Use this tool to check your state: KFF Medicaid State Profiles

💊 5. Refill, Restock, and Review Meds Now
Plans may change formularies, increase co-pays, or require prior authorizations for meds you've taken for years.

🏥 Talk to your provider about 90-day supplies, patient assistance programs, or potential alternatives now, before changes go into effect.

🔥 Final Word: This Is About More Than Insurance—It’s About Access, Equity & Life
We already fight every day for our health. Now, we must fight for our right to care.

Mystorylivingwithlupus ,-"SM"

03/09/2025

15/08/2025

14/08/2025

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29/07/2025

25/07/2025

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16/07/2025

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