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november to remember on my CIDP journey

I’ve had my share of busy days, weeks, and months like everyone else, but November 2025 is definitely competing for the G.O.A.T. trophy —so much has happened that it’s felt like a whirlwind.

November 1st is All Saints’ Day in Poland, a very important holiday. I didn’t fully appreciate it when I was younger, and I drifted away from it during my years in the USA.

But now that I’m older — and after losing my mother and other precious souls I miss so deeply — I finally see how meaningful it is.

It’s become an important part of my grieving and honoring those who have passed.

All Saints went by quite peacefully, and then BOOM – out of nowhere, my calendar exploded with various appointments: dentist, family doctor, surgeon (who found out I have a hernia), and even the gynecologist managed to squeeze himself into the chaos.

As if that weren’t enough, I had to take my aunt to her cardiologist and my dad to his eye doctor — the latter of which I managed to delegate to my brother, who agreed with all the enthusiasm of a cat taking a bath.

Then on November 19th, I had my appointment with the disability assessment board.

The ironic part is that my CIDP-stricken left arm and hand — as weak and wobbly as they are — don’t actually hurt that much. The right arm, on the other hand (pun absolutely intended), has been screaming for mercy from all the chores it had to take over.

The pain got so nagging and relentless that I finally said, ‘Okay, enough — I’m addressing this. I cannot lose my right side to disability. I JUST CAN’T.’

I regret not dealing with this before my disability assessment, because the problem has been creeping up for a while, along with a sneaky inguinal hernia on my right side—both consequences of my Lewis-Sumner Syndrome/CIDP.

Since the motor limitations of my polyneuropathy stricken left arm and hand, my right side ends up doing most of the work, lifting, reaching, compensating… basically overworking itself.

This is a serious problem, which is why I was looking forward to rehab this time around—to give my arms and hands some relief with laser therapy, light treatment, electrostimulation, and shoulder girdle massage.

Rehabilitation is important every time; however, the true star of this whole November ordeal turned out to be my Monday pilgrimages—three in a row—to Father Pio Hospital in Przemyśl on November 10, 17, and 24.

And why all this?

It’s because I am switching from IVIg to SCIg, and I began SCIg immunoglobulin infusion training, so I can eventually give myself the treatments at home.

Since the very day of my diagnosis, I have been eternally grateful for my treatment, yet gratitude does not erase the weariness.

And through it all, the bittersweet truth remains: this is a journey I must continue for the rest of my life, a reality both humbling and heavy on the heart.

The hospital corridors, the endless appointments, blood draws, and IV catheter pokes — they became a backdrop of anxiety, stress, and generally feeling miserable.

So when my doctor mentioned before summer that SCIg could be a game-changer for me, I was left dazed — equal parts disbelief and excitement.

In my case, SCIg would bring me closer to freedom, a hint of hospital independence, and the delicious prospect of a less stressful life.

I dreamt, I prayed, I begged the heavens—every fiber of me desperate for that day to finally arrive.

Arrive it did, indeed—but with a small catch: the learning curve. And learning, as I’ve discovered, is always its own curious adventure.

In my world it wanders, it surprises, and—if you’re lucky—it leads you somewhere better.

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Surviving Hospital Life with CIDP: A Few Personal Reflections

Looking back at my hospital stays now, I can’t help but ask myself: what exactly is the big deal—why do I resent them so much?

I gave it some serious thought—almost to a soul-searching level—to figure out why hospitals aren’t my favorite place.

But before I even dare to open this Pandora’s box—let me be crystal clear: this has absolutely NOTHING, and I repeat, NOTHING, to do with the quality of care I received. None. Zero.

My experience has nothing to do with the medical staff at the Father Pio neurology ward or any other member of the hospital personnel. They are highly trained professionals—diligent, compassionate, and genuinely good at what they do.

If anything, they made the whole ordeal better for me. They are, truly, fantastic.

So why, oh why, am I such a dramatic hospital phobic?

I am hospital-phobic because hospitals feel stressful — and being hospitalized is stressful — for several very human, very real reasons.

I’m not making this up—my point of view is shaped by my own, battle-tested experience.

Hospital stays take a real toll on mind, body, and spirit, and here are the eight reasons why I—and many CIDP warriors—feel it so strongly.

Take a read…

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the 8 Ways Hospital Stays Affect You Mentally, Emotionally, and Physically

1. Loss of Control

At home, I decide when I eat, sleep, shower, or even take a walk.
In a hospital, those basic freedoms shrink dramatically.

Someone else, with all well-grounded reasons, tells you:

• when you’re allowed to eat or drink
• when tests will be done
• when someone needs to poke you with a needle
• when you can rest (or not rest, because machines beep!)

This loss of autonomy immediately raises stress levels.

In me at least.

2. Uncertainty and Fear

In general, being hospitalized often means you don’t fully know what’s happening with your body.
Questions swirl in your head:

• What’s wrong with me?
• How long will I be here?
• Will I get better?

Uncertainty is one of the brain’s strongest stress triggers.

Even though I fully understand why I’m there—CIDP treatment, plain and simple—every check-up still triggers full-blown scanxiety.

3. Sensory Overload: Noise, Lights, Interruptions

Hospitals are not peaceful environments. They can involve:

• constant alarms
• fluorescent lighting
• nighttime vital checks
• machines pumping, hissing, clicking
• roommates that are not match made in heaven
• people coming in and out of the room

Your nervous system stays in “alert mode,” never fully relaxing.

High “alert mode” is not good for my neurasthenia – I can tell you that.

4. Vulnerability and Exposure

Ah, this one is a real doozy. I’ve never been a fan of being exposed—physically, emotionally, or in any other awkward way.

And trust me, rehab centers don’t make it any easier either. Honestly, I still don’t know how to fully overcome it.

Think about it:

• strangers touching your body,
• discussing deeply personal health issues,
• being hooked up to machines (like an EKG—sometimes without even a bra on …yes, I said it!).

It’s physically and emotionally exposing, which naturally creates stress.

If anyone happens to know the secret to surviving this with your dignity mostly intact, please, do not hesitate to contact me—I’m desperate for answers!

5. Feeling Helpless or Dependent on Others

If you pride yourself on being independent, hospitals have a funny way of humbling you—suddenly, you might need help with the simplest things (even just sitting up in bed), and it can feel equal parts humiliating and terrifying.

Humans like to feel capable — hospitalization challenges that.

“Helpless” doesn’t really describe it; feeling like a wet monkey does.

6. Pain, Discomfort, and Strange Environments

Your body can’t relax when:

• you’re in pain
• the bed feels like a medieval torture device
• you can’t get comfortable
• your sleep is broken into tiny pieces
• you give blood for testing, and your blood doesn’t want to flow (this one is personal)

Physical discomfort increases emotional and mental stress.

When I was younger, sleeping in strange places was an adventure in itself. These days, it’s the small comforts—my favorite mug, my trusted pillow—that determine whether my day holds together or completely unravels.

7. Isolation From Normal Life

Hospitals separate you from:

• your home environment
• your routines
• your kids, spouses, friends
• your work
• your coping strategies

Even losing small parts of daily life increases emotional strain.

There’s an emotional weight that comes with losing even the tiny rituals of daily life. I’ve become so attached to them that I hardly enjoy traveling these days—and that’s coming from someone who once lived for it.

8. The Emotional Weight of Illness

Being hospitalized is a reminder that something is wrong with your health.

This alone triggers fear, sadness, anxiety, and sometimes grief.

This one follows me everywhere—hospital or not.

The pity party continues…

Of course, the reasons above are strong, but they’re far from the whole story. There are plenty of smaller, more personal stressors for me as well: the 1.5-hour drive to the hospital, rain or snow or shine; hunting for a paid parking spot to leave my car for four days; wondering if the hospital food will actually be… edible; the ever-present fear of germs; losing days of work; and, last but certainly not least, the very serious separation anxiety from my espresso machine.

It’s this mix of big and little challenges that makes hospital visits such a uniquely exhausting experience.

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Final thoughts

These eight big stressors and other smaller of hospital stays hit a whole new level of intensity when you have a chronic illness like CIDP and face constant IVIg hospital visits.

For me, they were absolutely decisive in switching to SCIg—they practically made me leap on the bandwagon before my doctor could even finish the sentence: ‘…there’s the possibility of self-administering immunoglobulins.’

I didn’t hesitate for a second. After years of hospital stress, the idea of taking control at home felt like a breath of freedom I’d been craving so much.

November 2025 had a couple of standout moments In my CIDP Journey that deserve special mention.

First was the ‘learning curve’—those three hospital visits for my switch from IVIg to SCIg—a massive experience that practically warrants its own blog post.

Second was something completely different, but equally meaningful: attending a CIDP meeting and workshop, and connecting with others living with the condition.

Both experiences were highlights of the month, so memorable and unique that I’ll be writing two separate posts to share each of them in full.

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Disclaimer: Everything shared here comes from my own journey with CIDP and is meant for reflection and support, not medical guidance—your healthcare team is always the best source for personal medical decisions.

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CARING IS SHARING – IF THIS SUPPORTED YOU IN ANY SMALL WAY, SHARING IT MAY SUPPORT SOMEONE ELSE WITH CIDP, MMN, GBS, OR SIMILAR CONDITION, AND SUBSCRIBING KEEP THIS CIRCLE AND AWARENESS GROWING