My name is Shelly. I am a Christian, a wife, a mom, and a writer- a published author in fact, and that is how the world knows me.

But the rest of the world, the people I’ve never met and the places I don’t often go, see me in my power chair.  Most of the outside world sees me as weak.  It’s hard for them to understand that just living, every day, takes more strength than most people ever need.

I have been living with idiopathic intracranial hypertension (IH) for over 7 years. This is #myinvisiblefight.

IH is a neurological rare disease. Cerebrospinal fluid (CSF) builds up within my skull essentially squeezing my brain and nerves. The incredible pressure results in symptoms similar to those of a large brain tumor, but there is no tumor. There is no specific lab work or imaging to help the diagnostic process; only a lumbar puncture and pressure analysis is the basis for diagnosis.  I went three years thinking I had Multiple Sclerosis. Test after test, doctor after doctor I was finally diagnosed with IH. I have a shunt in my brain that works like a timed high pressure valve moving the fluid to my abdomen to be reabsorbed as naturally as possible.

My life is different now.  I am not as busy as I was as a healthy person.  I am much less independent and am now disabled. I don’t leave the house very often as going out in public is very challenging for my body. I can no longer drive. I loved going on long drives. The IH has taken my peripheral vision and my reaction time has slowed so drastically that I haven’t driven in 4 years.

When I have to go to see my doctor, although maneuvering in and out of the car is tough, I cherish riding in the passenger seat. The drive is like finding water in a desert. As I stare out the window, I try to look at every single person, sign, cloud, color, and car that passes by; my eyes can’t capture enough of my surroundings.

When the receptionist calls my name in the doctor’s office, I just want to get up and strut across the room. I went from using a cane, to a walker, to a power chair. At one point in time, I took the ability to walk, even with my cane and walker, for granted. I want it back, every day. It is a constant battle to reclaim it.

Sleeping is a struggle. I have insomnia. They tell me it is from the pain and nerve confusion. A good night’s rest doesn’t come often, so I read on my Kindle – I can make the text size big enough! Soft music helps me relax.  I love to sing as well. Singing makes me feel connected to God.

Thanks to my husband Brian, I have this awesome app F.lux on my computer that automatically adjusts the screen lighting to avoid the native blue hues as they are a brain stimulant.  This app is incredible! It enables me to play Magic Puzzles-I highly recommend it, as well as write. Writing helps me to process life.  I used to journal, especially before I was diagnosed. But about two years ago, I participated in IIWK13, and with a lot of bullying, I mean, encouragement from my husband and mom, I began to publish my thoughts online.

I thought, behind every medical statistic and behind each big word you can’t pronounce, is a person like me. Someone who is looking for answers and support and hope. It is very frightening when you first realize you are sick; forever. It helps to know that there are other people out there and that you can survive this! I decided to start a blog, “Renewed Daily” to encourage messages of hope and strength.  I also recently published my first book!

Although IH and I have made peace with each other over time, the feelings of loss and isolation have been sometimes more overpowering than my physical and mental disabilities.  This disease had gone through my body and has left no stone un-turned. As of late, my doctors suspect that I may have a degenerative condition separate from the IH.  They recently ruled out ALS, which is such a relief but I am playing the waiting game.

It is difficult to determine what have been symptoms of IH and what may be a result of  whatever this new thing is. Daily, I experience vision issues— complete loss of site, what I call, kaleidoscope vision; bright spots and static, fuzzy spots. It comes and goes. I have chronic headaches, a tremor in my hands that gets worse the more I try to use them. Sometimes I reach for something and the tremor starts, then it is difficult to let go. Numbness, weakness and dizziness are all normal for me.  I have difficulty finding the right words, and I often forget what I am saying or thinking.

I am in an emotionally draining spot, but with #myarmy I know I will overcome this fight.  Family is my life. My family makes me feel like life still matters. We love laughing together and we live loving each other. I have a very supportive Mom, Dad, Sister, and Brother-in-law. My husband and children are true blessings to me. They bring true joy and purpose to my life.

They help me fight #myinvisiblefight.

So yeah, like I said, life is different now. But in a way, I live a more meaningful life now.  I have no trouble prioritizing anymore, and I don’t take the small things for granted.  Like showering! Oh, a hot shower is just heavenly. And even though my hubby tares the kitchen up when he cooks, he sure does make a mean chicken pot pie! We can clean up the mess later… we always do!

Editor’s Note: Patient Worthy welcomes Shelly to the family! She is an incredible women and we look forward to sharing her blog, and her powerful messages of hope and strength with you all!

What’s Worthy to Shelly:

Shelly’s book: You’re chronically ill so now what? is available on amazon.com.  Check it out!

Shelly’s blog: Renewed Daily

Here are 2 of our favorite YouTube posts: Just Keep Going and I am Not Alone

Shelly’s Recommended App: F.Lux