Alicia's Journey with IIH

Alicia's Journey with IIH "Empowering Lives, Sharing Stories Together in IIH and Beyond”
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Alicia's Journey with Idiopathic Intracranial Hypertension (IIH) is a platform where Alicia courageously shares her experiences navigating life with this condition. Join her as she confronts her struggles, celebrates her triumphs, and tackles the daily challenges associated with this rare neurological disorder characterized by high intracranial pressure around the brain. From initial diagnosis to

exploring treatment options, Alicia's narrative illuminates the significance of awareness, resilience, and the power of community support in overcoming adversity. Whether personally affected by IIH or seeking to deepen understanding, Alicia's journey offers invaluable insights, inspiration,and a beacon of hope for all.

💚💙 Alicia’s Journey with Idiopathic Intracranial Hypertension (IIH) 💙💚This is more than just a ribbon.It’s a story of su...
28/07/2025

💚💙 Alicia’s Journey with Idiopathic Intracranial Hypertension (IIH) 💙💚
This is more than just a ribbon.
It’s a story of survival, faith, and relentless strength through invisible battles.
It’s for the days I smiled through pain, for the nights I cried in silence.
It’s for the procedures, the pressure, the prayers, and the purpose that grew through it all.

📣 “Empowering lives, sharing stories: Together in IIH and beyond.”
Whether you’re newly diagnosed or years into this journey, you’re not alone.
Let’s raise awareness. Let’s educate. Let’s support.
Together—we are rewriting the narrative of chronic illness, one story at a time.

Good Morning, Warrior.It’s Monday—but don’t roll your eyes, lift your head.You woke up with breath in your lungs and pur...
28/07/2025

Good Morning, Warrior.
It’s Monday—but don’t roll your eyes, lift your head.
You woke up with breath in your lungs and purpose in your heart.
Even if you don’t feel ready, grace woke up with you.
New week. New strength. New mercy.
God’s not done with you.

You’ve come through another week. Tonight, breathe, reflect, and surrender it all. Good night.
28/07/2025

You’ve come through another week. Tonight, breathe, reflect, and surrender it all. Good night.

Thank You, Lord. 🙏🏽God, I just want to say THANK YOU.Not because everything is perfect. Not because I have all I need. B...
27/07/2025

Thank You, Lord. 🙏🏽

God, I just want to say THANK YOU.

Not because everything is perfect. Not because I have all I need. But because even in the middle of lack, pain, and uncertainty — You are still good.

Thank You for the food I don’t have right now… because I trust You are still my Provider.

Thank You for the prescriptions I need to fill, the procedures I need funding for, the bills that are piling up, and the aids I’ve been praying for… because I know You are already working behind the scenes. 🙌🏽

Even when I don’t see the way, I thank You in advance.
Even when the doors seem shut, I praise You anyway.
Even when my body is wracked with pain, I still lift my hands and say… THANK YOU, LORD.

Thank You for life. For breath. For keeping me when I felt like I couldn’t keep myself. For grace that met me on my weakest days and mercy that covered me in the darkest nights.

I may not have all the answers.
I may not have all the strength.
But what I do have is FAITH.

Faith that You are still Jehovah Jireh – my Provider.
Faith that You are still the Great Physician – my Healer.
Faith that You are still God – and You are GOOD.

So today, I pause in the middle of the storm just to say...

THANK YOU, LORD. I trust You. I love You. I believe You. And I’m forever grateful.
’llDoItAgain 💚💙

Good morning! May your heart be full, your mind be still, and your soul feel the peace of a new day.
27/07/2025

Good morning! May your heart be full, your mind be still, and your soul feel the peace of a new day.

💭 It’s a wrap on today…I gave it what I could with the little strength I had. Headache, nausea, facial pain, neck tensio...
27/07/2025

💭 It’s a wrap on today…
I gave it what I could with the little strength I had. Headache, nausea, facial pain, neck tension, tinnitus, pressure behind my eyes, and that random pain by the shunt — it all followed me like a shadow. But I still managed to push through parts of the day.

Now I’m finally in bed, praying sleep will come. My body is tired. My mind is tired. The pain hasn’t eased, but I’m giving myself permission to rest anyway. Because surviving a day like today is an accomplishment.

Here’s to soft pillows, deep breaths, and maybe just a few hours of peace. 💚

Good morning! Breathe. Rest. Heal. Saturdays are for slowing down and showing up for yourself.
26/07/2025

Good morning! Breathe. Rest. Heal. Saturdays are for slowing down and showing up for yourself.

The week may have been heavy, but God carried you. Rest now, He’s still in control.
26/07/2025

The week may have been heavy, but God carried you. Rest now, He’s still in control.

💚 Life with an LP Shunt 💙“I’m just going daily… until I can’t.”When I say I’m just going day by day in pain, I mean exac...
25/07/2025

💚 Life with an LP Shunt 💙
“I’m just going daily… until I can’t.”

When I say I’m just going day by day in pain, I mean exactly that. It’s not dramatic. It’s not exaggerated it’s my reality. Every single day, I wake up to headaches that feel like they’re digging behind my eyes and pressing against my skull. The nausea follows, like a shadow I can’t shake. Facial pain that comes in waves. Neck pain that stiffens me out of nowhere. Then the tinnitus that constant ringing that makes silence feel loud.

And then there's the shunt.
My LP shunt. Supposed to help relieve the pressure building up inside my head and it does to an extent but it comes with its own set of pain. That catheter site? It doesn’t hurt all the time, but for a few days now, it sends these sharp, shocking pains through my back like someone flipped a switch. No swelling, no redness, nothing visible but the pain is very real and it always catches me off guard.

This isn’t just a post for sympathy. It’s the truth of living with an LP shunt. It’s the silent fight many of us face when we look “fine” on the outside. It’s the cycle of pushing through, praying for relief, and trying again the next day.

I'm not lazy. I'm not exaggerating. I'm surviving in pain until I can't anymore… and then I rest, cry, pray, or go quiet. Then somehow, I get up again. That’s what strength looks like for some of us.

💚 This is life with IIH. This is life with an LP shunt.
💙 Not always visible. But always real.

Good morning! You made it to Friday. Celebrate the strength that carried you here.
25/07/2025

Good morning! You made it to Friday. Celebrate the strength that carried you here.

Another day behind you, another victory in your story. Sleep in confidence.
25/07/2025

Another day behind you, another victory in your story. Sleep in confidence.

💚 Healing in an Uncomfortable Home 💙Healing whether physical, emotional, or spiritual is already a journey. It takes tim...
24/07/2025

💚 Healing in an Uncomfortable Home 💙

Healing whether physical, emotional, or spiritual is already a journey. It takes time, patience, intentional care, the right support, and most importantly, a safe and peaceful environment but when you're trying to heal in a home that doesn’t feel like peace…it hits differently. It shakes something in your spirit. You start realizing that it’s not just what’s happening inside your body that hurts it’s also what’s happening around you.

Your environment matters more than people realize. If the atmosphere around you is loud, tense, unpredictable, or filled with conflict, it starts to wear down your nervous system. That constant tension the kind that you can't always explain delays healing in ways people don't see. You’re not just dealing with your illness or your trauma. You’re also trying to manage the weight of a space that feels heavy. That’s a different kind of fight and sometimes, people around you don’t understand.

An uncomfortable home doesn’t always mean there’s abuse, loud arguments, or open chaos, it’s the quiet kind of pressure that builds up when you don't feel like you belong. It’s the lack of privacy feeling like there’s nowhere in the house you can fully breathe, stretch, or just be. It’s living around people who don’t understand your condition, or worse make you feel like a burden for needing support. Questions start echoing in your mind. “Am I too much?” “Am I overstaying my welcome?” “Why does it feel like I have to fight for peace, especially when I’m just trying to survive?” The room might be quiet, but your soul is screaming. Your spirit is exhausted.

For those of us staying with family, it can hit even harder. Especially when you're staying there because of your condition because you’re unable to live on your own or financially support yourself while fighting this battle. You try to make your space feel comfortable or sanitary for your healing. But then you’re reminded:
“This isn’t your house.” That statement…whether said with words or in looks or in energy…hits like a slap.
It confirms what you already know but didn’t want to hear out loud. You’re reminded you don’t own the space you’re trying to heal in. You’re reminded that even though you’re here out of necessity, not choice you’re still considered temporary and that stings. It hurts because it reinforces the very thing you’re trying to overcome: instability. But even then… don’t lose hope. Even in a home that feels heavy, healing is still possible.Even in a place where you feel like a guest, you can still find refuge.

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Kingston

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