FIRST ISSUE

🔷 From our corner of Texas to yours - welcome to our weekly journey with CIDP. Each week, we'll explore, share and maybe help a bit. I walk this path daily so let's make each day a little better.

A front porch view…

Let’s start slow on this first issue, I hope to have more soon….

With almost 10 years of experience with this disease and having tried multiple treatments to slow or stop my CIDP spread, I learned to be aggressive. We must aggressively use every possible resource to stop this NO CAUSE NO CURE disease that is eating us.

I wish there was no need for this newsletter, but being a freelance digital designer with CIDP threatening to ruin my work capability….well, here we are.

In coming issues I hope to go in depth on things like our doctors, our caregivers, and more.

Comments and feedback will always be a part of our trek. I hope there will be no need for more than a few issues. WITH A CURE and I can quit writing.

📚 THIS WEEK'S FOCUS

• "When CIDP Becomes Part of Your Marriage" - Your partner’s needs

• “Meet the Experts” - My newsletter, so my HERO first

• "Your Medical Team Works for YOU: Taking Charge of Your Treatment" - Don’t be a one man army

• “Normalcy” - CIDP never goes away

• “Personal Disclaimer” I am not your doctor!

 "DID YOU KNOW?" 

ADAPTIVE TECHNOLOGY 🔧 • Did you know there are smart utensils that stabilize themselves for easier eating? • Did you know that voice-activated home systems can now control everything from lights to thermostats? • Did you know there are shoes with GPS tracking for those with balance issues?

RESEARCH & STUDIES 🔬 • Did you know researchers are developing biomarkers to predict CIDP progression? • Did you know stem cell therapy trials for CIDP are currently underway? • Did you know artificial intelligence is being used to analyze nerve conduction studies?

💝 When CIDP Becomes Part of Your Marriage

Let's have an honest conversation about what happens when CIDP joins your relationship. Nobody hands you a manual for this, and the impact can be overwhelming for both partners.

The Early Days: When CIDP first hit, my partner and I faced challenges we never expected. Simple things like going out to dinner or planning a weekend suddenly became complicated. The stress? It was real, and it affected both of us in different ways.

Emotional Impact:

• Dealing with uncertainty

• Managing changing roles

• Handling frustration

• Processing grief

• Building new normals

Communication Changes:

• Learning to express needs clearly

• Discussing limitations openly

• Sharing fears and hopes

• Planning for bad days

• Celebrating good moments

What's Working For Us:

• Regular check-in talks

• Honest discussions about needs

• Planning ahead for challenges

• Maintaining individual interests

• Finding new ways to connect

Nobody talks much about romance when dealing with chronic illness, but it's an important part of life that deserves attention... 💕

Resources for Couples:

Marriage Counseling Directory

• Psychology Today Therapist Finder 🔗 https://www.psychologytoday.com/us/therapists/chronic-illness

• Well Spouse Association Directory https://wellspouse.org/find-support/

Support Groups for Partners

• CIDP Foundation Support Groups 🔗 https://www.gbs-cidp.org/support/support-groups/

• Chronic Illness Partner Support 🔗 https://www.chronicillnesspartners.com/

Relationship Workshops

• Couples Coping with Chronic Illness 🔗 https://www.nami.org/Support-Education/Support-Groups/NAMI-Family-Support-Group

HERO’S

Achieving—”NORMALCY”

🌟 Finding Your New Normal with CIDP: A Texas-Sized Journey

Y'all, let me share something from the heart about this journey we're on together.

When CIDP first showed up at my door uninvited , I had some pretty fixed ideas about what "normal" looked like. But like any good Texan knows, sometimes you've got to adjust your stance to stay in the saddle. 🤠

Here's what I've learned along this winding road :

1. Embracing Change

• Like Texas weather, CIDP can change mighty quick

• Some days are sunshine , others need an umbrella

• It's all about rolling with those changes

2. Celebrating Small Victories

• Tying those boots 👢

• Holding that coffee cup steady

• Every victory counts, no matter the size

3. Quality Over Quantity

• It's not about how many miles you cover, it's about making each step count

• Finding joy in the journey

• Gratitude

4. Building Resilience

• Like a Texas oak tree bending in the wind, strong roots keep us grounded

• Growing stronger through challenges

• Staying in the moment

Words from the Heart ❤️: "This disease might change our path, but it sure doesn't change our destination. We just might take a more scenic route getting there"

Remember, normal is just a setting on the washing machine!

💡 RESOURCE PAGE

• Chronic Disease Self-Management Program 🔗 https://www.selfmanagementresource.com/programs/small-group/chronic-disease-self-management/

Online Communities

• Reddit Chronic Illness Partners 🔗 https://www.reddit.com/r/chronicillness/

• Facebook Groups:

• CIDP Caregivers Support 🔗 https://www.facebook.com/groups/CIDPcaregivers/

• The Mighty - Partners Community 🔗 https://themighty.com/chronic-illness/

Local Texas Resources

• Texas Health Resources 🔗 https://www.texashealth.org/Health-and-Wellness/Behavioral-Health

• UT Southwestern Support Services 🔗 https://utswmed.org/conditions-treatments/support-services/

Please get educated on CIDP.

A back porch view……

Being positive is hard and being positive everyday has been way beyond me.

I have my “rock” and I hope you have yours.

A Caregiver’s Creed: The Three H's: Help, Heal, Hug 🤗

A Deep Dive into the Power of Human Connection

What Science Tells Us About Hugging: According to Psychology Today's research (https://www.psychologytoday.com/us/blog/keep-it-in-mind/202201/hugging):

The Magic Number: 20 Seconds ⏰ • Releases significant oxytocin (the "feel-good" hormone) • Reduces cortisol (stress hormone) • Lowers blood pressure • Creates deeper emotional bonds

Daily Hug Prescription: • Aim for 6-8 meaningful hugs • Each hug should last 20 seconds • Quality matters more than quantity

For CIDP Warriors: • Adapt hugging positions for comfort • Communicate your needs • Use support when needed • Remember: gentle hugs count too

Benefits Backed by Science: • Stress reduction • Improved emotional well being • Better sleep quality • Enhanced immune function • Decreased anxiety

Additional Resources: • Harvard Health: https://www.health.harvard.edu/mind-and-mood/the-health-benefits-of-hugging

• National Institutes of Health: https://www.nih.gov/news-events/nih-research-matters/hugs-may-help-protect-against-stress

Remember: Even with CIDP, the healing power of human touch remains important - just adapt it to your comfort level! 💝

Till next week…