Hydrocephalus: Floating Faithfully

By Celeste A. Daniels

Floating Faithfully is a story, written from my own personal experiences, of the daily struggles I’ve endured and battles I’ve overcome while living with Hydrocephalus. I was not born with Hydrocephalus, nor am I over 60-years old, as these are the “normal” two opposite spectrum's of the condition. I was diagnosed at the age of 29 and therefore an unlikely candidate and part of the minority of Adult Acquired Hydrocephalus sufferers. Having undergone 4 brain operations, 3 of which while I was 51⁄2 months pregnant, this book details the survival of my baby and me at that time. Over time, my short-term memory has been affected and I literally see the strong, independent person I once was, slipping away. Faced with the possibility of going blind or possibly dying from it, it’s a daily fight to keep my head above water and keep up the façade that all is well...when it’s not. It’s a journey before, during and after brain surgery detailing the rollercoaster state of emotions.

Having exhausted any possible help in my home country going from one Neurospecialist to the next, we traveled overseas in the hope of finding better care. However, I have been left cleared of the disillusionment that help lies solely in the hands of Man as the sad reality hits home that Hydrocephalus care and knowledge is no better in our new country. I now turn to God, placing all my trust and faith in Him until he calls me home...This book serves as a source of knowledge and insight for both people who have this condition themselves as well as loved one’s who take care of them.

I hope to leave the reader educated on this condition, which affects millions around the world and hopefully shine a light on the Hydroid world, which is bound to become lonely. Providing useful resources, in the form of support groups to help make the journey that much more bearable and emphasizing the message that You need to be your body’s voice and advocate as other people’s ignorance is their bliss.

Hydrocephalus does not discriminate and affects millions across the world. Awareness is needed to kick-start required funding for research towards a Cure. You can help spread the Word.

• Language: English
• Publisher: Celeste A. Daniels
• Release date: Sep 19, 2015
• ISBN: 9781310422959

Celeste A. Daniels

I am a mother, wife, daughter, sister, friend and so much more. I write because it brings me satisfaction, I help others because it makes me feel good inside and out. These two things together, define my purpose in life...because I can.We all need motivation, which is Nourishment for the soul...like rain to the earth...This is my aim, pure and simple.

Book preview

INTRODUCTION

Dear reader

If you have found your way to this book, I am going to assume that either you or someone you know and love has Hydrocephalus. I am also going to assume that you are looking for answers, anything that can guide you to getting a better understanding of this condition and somehow make sense of the unknowns. The truth is, I might not be able to provide that…well at least not fully or in the sense that you might need. I have made these assumptions purely because I too have gone looking for answers and help. I too have felt anxious, overwhelmed and extremely helpless at various times, since my journey began.

I am not a medical professional, nor do I claim to have all the knowledge there is on the subject. However, I am a person who has been told that I have a condition called Hydrocephalus and I have had my fair share of experiences since that day.

Many people say that you shouldn’t use Dr Google…somehow I agree but to the minority of the extent. I agree only because it can be confusing since there is so much information to take in and you need to be able to use discernment. If it were not for Dr Google, I would not have had the moments of peace and conviction to actually stand up for this condition and myself. I would not have been aware of what I needed to regard as important when it came to my health and quite possibly my survival. The one lesson that I have learnt is that it is not an easy road to travel. It is not an easy condition to live with but more importantly…and I say this tongue in cheek…There is always someone else who is worse off than you…

If running endless searches on the Internet to find what you need is what gets you through, then I say go ahead and do it. Besides who knows, you might be the one who finds a breakthrough or, at the very least, you will form new networks and relationships with people who can provide the only true support you would ever have. The truth of the matter is…Hydrocephalus creates a lonely world…but it doesn’t have to be.

I read a book called Life Without Limits by Nick Vujicic. This book is a true inspiration and testament to the greatness of God. It opened my eyes to the power of God and how He uses each one of us irrespective of how we are made. Nick was born without arms and legs…Yes, let that sink in a bit. I mean can you imagine a life without arms or legs? I most certainly can’t. I have great admiration and respect for Nick, having overcome life’s obstacles and rising above his God-given talents. He has not rendered himself useless because of a few spare parts, even though others probably do or have. He chose his attitude towards the situation and placed his faith completely in God. I can’t imagine that his road has been easy but because of his story, I have found the voice to my own.

For further reference, use the Glossary at the end of the book to find the meaning of some of the medical terminology used.

This is my story…

* Doctor’s names have not been given

There is NO cure for Hydrocephalus...Brain surgery is the only option.

Finding sanity and support on a journey of discovery and loneliness.  You are not alone.

Medical professionals can get it wrong too...Let your faith keep you afloat.

#HydrocephalusDoesNotDiscriminate

#AwarenessMattersBecauseYouDo

#PrayingForACure

MENINGITIS

My journey began when I was 15 years old.

While in my final year of high school, I became very ill. I remember that Friday very clearly. Coming home from school, I hadn't been feeling well for most of the day. I had a headache, which seemed to last forever. No matter what pain relief I took, it was powerless to the pain in my head that grew stronger still. I felt drowsy and listless. I complained to my Gran but she didn't really take it too seriously, telling me to go and have a lie down after giving me some painkillers.

Nausea built up and a feeling of seasickness too, over a couple of minutes. I started vomiting until I sank to the floor, clutching the toilet bowl for dear life, the excruciating pain throbbing in my head and eyes.

After a while, pulling myself up from the floor, leaning against the wall on my way back to the room, I fell onto the bed and had a lie down. It felt like the room was spinning, like I was on a roller coaster going through 20 consecutive loops...I closed my eyes.

Falling asleep was easy despite the pounding pain in my head, eyes and neck. When I woke up some time later, the room was dark and the house bustling with life. The noise irritated me; the passage light shining into the room made me delirious and just added fuel to the throbbing pain. I closed the curtains and the darkness enfolded me with comfort and some relief. I vomited again and the pain in my head felt like it would drive me insane. I lay down but not for long because it just didn't help. I sat up for a while and just closed my eyes while the throbbing continued in my eyes and ears.

Getting up slowly as every move, of an inch of my body felt like torture to the pounding in my head. I started pacing the room; finally I walked around in a circle...round and round. I did this over and over again, going faster and faster...screaming inside, pulling at my hair. I literally felt like I could pull the pain out through the strands of hair on my head. Tears streamed down my face, it just angered the beast growing inside my head but crying was the only thing I could do. The feeling I remember most, other than the pounding pain, was that my brain felt like it would squeeze through my eyes, ears, nose and mouth. Looking for an escape through any hole in my head it could find.

I eventually fell asleep that night but it wasn't without any discomfort. The next morning I didn't feel any better and the headache just kept on throbbing. I refused breakfast since the mere thought of food made me sick to the stomach. Gran took me to the doctor. I was so thankful at this point because I desperately wanted help, as I knew something was wrong.

The doctor had me look into the light, which had me react like a vampire to sunlight – I COULD NOT do it. He lay me down on the bed and asked me to lift my head and touch my chest with my chin, stiff as a fiddle, I couldn’t do this either and winced from the pain. Upon further examination, he insisted Gran take me to the hospital immediately. He suspected I had *Meningitis and needed medical attention right away that could only be provided at the hospital.

Once we were there, I was admitted and given pain medication. I was also given my very first *Lumbar Puncture...

A Lumbar Puncture is something I do not wish on my worst enemy! It hurts like hell and is done while you are wide-awake and fully aware of what's going on around you.

You have to lie on the bed in a fetal position with your knees as close to your chest as possible. A local anesthetic is injected into your back to numb the area.

The most important thing to do is lie Very still, and because of this, you have a nurse in front of you offering support. She puts some force down if you squirm too much and only because it’s a risky procedure.

I feel the needle go in slowly and I wince, it's painful. I let out a soft whimper at first that reaches a crescendo almost immediately. The medical staff consoles me with words of comfort but all I'm aware of is the agony this is causing me. There we go...ok, you can relax the doctor says and I slowly breathe out. The ordeal is over and a few minutes later, he pulls out the needle. I can't remember that being as bad as when it went in.

When they were done, I had to lie flat on my back so that the flow of *CSF (Cerebrospinal Fluid) could return to normal.

I remember feeling a sense of great relief from the headache and all the earlier drama almost immediately.

I stayed in hospital for about 2 days before I was discharged. No further tests were done and it was the end of that episode...or so I thought.

Because this was a public hospital and communication is not always ideal, I never received the notification of having to come back for a follow-up *CT scan.

At this particular hospital, it is an accepted norm that paperwork and files will go missing; I guess this was one such case. A few weeks later a nurse, who is also a family friend working at that hospital, asked me why I hadn't come back for my scan.

I didn't know I was supposed to because no-one told me

Well, you need to have it done. I'll find out and let you know

Ok...thanks

A few days later, I received word from her about the booked date and time. I had my first CT Scan done then, which also caused me a bit of anxiety, purely because I had never had one done before. It wasn't half as bad as I had thought and didn't take that long either.

I went back to school and life as normal…well until I failed my final exam. I struggled to study and nothing I tried to commit to memory would stick. I could not understand what was happening, as I’d never had this problem before. I wasn’t an A-student; I was average…managing to get good enough grades to get through to the next year.

I remember sitting in my exam room, feeling anxious because I knew that all the hours I had spent that week trying to study had been fruitless because I couldn’t remember anything. I stared at my page for the duration of the exam and just about managed to fill in my name at the top of the page. I was near tears; no matter what I did…nothing came to the fore. I wrote something…anything that would come out onto the page but knew fully that the end result would not be good. What I wrote had absolutely nothing to do with the exam questions!

Walking out of the room, I bumped into my teacher who asked how it went. I smiled as best I could and lied:

It was ok…thanks… and left school as fast as I could.

With the exams over, I returned home