Generated by All in One SEO v4.9.5.1, this is an llms.txt file, used by LLMs to index the site. # Skyewaters Hydrocephalus And Brain Injury — Advancing Awareness And Patient Advocacy. ## Sitemaps - [XML Sitemap](https://skyewaters.com/sitemap.xml): Contains all public & indexable URLs for this website. ## Posts - [Pressure sensors are a godsend, but getting one isn't easy](https://skyewaters.com/pressure-sensors-are-a-godsend-but-getting-one-isnt-easy/) - Non-invasive brain sensor to measure intracranial pressure. From reactive to proactive! - [5 things to remember to improve your life after brain injury: Redefining your new normal](https://skyewaters.com/5-things-to-remember-to-improve-your-life-after-brain-injury-redefining-your-new-normal/) - Self-care is essential, especially when you live with a brain injury. The invisible nature of this disability leaves you at a societal disadvantage because others cannot understand what they cannot see. - [Shunt Over-Draining (With a Patent ETV): From Symptoms To Surgery. What You Need To Know.](https://skyewaters.com/shunt-over-draining-with-a-patent-etv-from-symptoms-to-surgery-what-you-need-to-know/) - Learn how shunt over-drainage can cause headaches, nausea and dizziness—even with a patent ETV—and why valve replacement with a SiphonGuard was needed. - [When mum goes on "Strike"](https://skyewaters.com/when-mum-goes-on-strike/) - This week, I decided I'd had enough. My family life has become draining. So draining in fact, that I no longer found joy in any part of it...my kids, husband, marriage or me. I started feeling very resentful a very long time ago, and truth be told, I was just about ready to call it - [Hydrocephalus : Dr...I am at your mercy...](https://skyewaters.com/hydrocephalus-dr-i-am-at-your-mercy/) - Monday, I had an appointment with Dr H whom I had seen before, a few years back (In my book Hydrocephalus: Floating Faithfully, I started using letters of the alphabet instead of real names for doctors whom I've consulted with since diagnosis. I hope I don't end up at Z). I opted to consult with him because of - [The devil is in the detail](https://skyewaters.com/the-devil-is-in-the-detail/) - Have you ever had a consult with a specialist for Hydrocephalus and walked away feeling like they simply didn’t listen? Or, maybe you read their report after your consult, and think: “Thats not what I said!”, feeling deflated by the same token. If you have, you are not alone! I’ve simply lost my confidence and - [Hydrocephalus: ICP Monitoring results leave me feeling "conflicted"](https://skyewaters.com/hydrocephalus-icp-monitoring-results-leave-me-feeling-conflicted/) - I’ve waited more than two weeks to hear about my ICP Monitoring results and eventually assumed that “No news, is good news”. And, as it turns out it is indeed the case. I should be relieved and happy, to say the least. But...I have mixed emotions... I requested a printout of the actual Monitoring results (which I - [The job description no woman would willingly sign up for…](https://skyewaters.com/the-job-description-no-woman-would-willingly-sign-up-for/) - When I met my husband, I fell in love. It was easy enough...so marrying him was a no-brainer. We weren't raised in a community where living together before marriage was a norm. Therefore, what I learnt about the love of my life only came after the fact...that is, the things that matter most. Marriage and kids were never - [Technology at the heart of an incurable brain condition](https://skyewaters.com/technology-at-the-heart-of-an-incurable-brain-condition/) - One can almost not imagine a world without technology these days. So, it makes sense that advancements in the medtech space moves into the arena of neurological conditions. ICP (Intracranial pressure) monitoring The physical sensor I had placed in 2021 to have ICP monitoring done. What can I say, I like souvenirs. My neurosurgeon was good - [Blocked shunt valve: Why trusting your gut is important!](https://skyewaters.com/blocked-shunt-valve-why-trusting-your-gut-is-important/) - I didn’t quite spot my treatment failure this time, at least not as I would have liked to. My previous shunt, a Sophysa Polaris (A.K.A. Sophy) was placed on 23 April 2022. If only shunts came with a warranty or refund policy. Given their high failure rate, I suppose that would likely be uneconomical. But, - [VP shunt obstruction leads to brain surgery #8.](https://skyewaters.com/vp-shunt-obstruction-leads-to-brain-surgery-8/) - Trusting your gut This is the ONE thing that I‘ve relied on the most. More importantly, I listened to my body. As I told Dr T, I don’t have a medical degree, but it’s the only thing I have to guide me. After having a shunt patency study on Monday, they’ve discovered a blockage at - [Medical gaslighting is abuse](https://skyewaters.com/medical-gaslighting-is-abuse/) - I found this quote a while back, but it still resonates with me. More importantly, it validates my experiences thus far. Not only has it been true since my hydrocephalus diagnosis (May 2007), but it’s especially true following the Intracerebral Hemorrhage I had, during a repeat ETV (May 2021). Life changed in an instant, albeit - [Be the change you wish to see in the world or, at the very least, be part of it.](https://skyewaters.com/be-the-change-you-wish-to-see-in-the-world-or-at-the-very-least-be-part-of-it/) - I didn't set out to be part of change. I also didn't aim for a possible improvement to the current state of my injured brain. Regardless, I stay eternally hopeful. I am nevertheless, driven by sheer willpower and determination as I continue to make progress. I know my brain is not (quite) where I want - [Hydrocephalus: The silent assassin](https://skyewaters.com/hydrocephalus-the-silent-assassin/) - Hydrocephalus does NOT discriminate. There’s no single cause and more people are diagnosed with it, than you, or I, could ever know. Globally! It really is a silent assassin. One you can’t see coming. Awareness and education provide the best armour. Saying; “It won’t happen to me”, is no guarantee. Thanks to having viral meningitis, - [Is it my shunt, or something else..?](https://skyewaters.com/is-it-my-shunt-or-something-else/) - While you feel like crap, you convince yourself you’re imagining it. And, there’s probably nothing wrong. - [Hydrocephalus hangover...](https://skyewaters.com/hydrocephalus-hangover/) - Hydrocephalus had me on my knees last weekend (literally). Saturday, I woke up with a lightly beating headache. I opened my eyes and thought "okay...how bad are you going to get?" The day passed by with little to no drama and no escalation in the pain. I was thankful at the end of the day...because - [Hydrocephalus: Giving up alcohol makes way for sanity](https://skyewaters.com/hydrocephalus-sacrifice-for-sanity/) - I enjoy a good glass of wine just like most people. One of my favourite things to do is soak in a nice full bath with a glass of wine in hand. However, I decided just over a year ago to give it up completely because I realised it was a trigger for my headaches - [Dealing with a chronic illness is not easy](https://skyewaters.com/hydrocephalus-but-ill-keep-smiling/) - I have Hydrocephalus but I'll keep smiling. I wasn't born with it, but was diagnosed 6 years after having my 2nd run with viral meningitis. The road has not been easy and I can literally say that my whole world changed the day I found out I needed a brain operation. Can you imagine facing - [Hydrocephalus: It's sometimes better to just forget](https://skyewaters.com/hydrocephalus-its-sometimes-better-to-just-forget/) - I am quite hard on myself when forgetting things. I forget that I tend to forget things...I also forget that there's a very good reason why I do. My kids know I forget things and remind me quite easily about it too. I've read a few inspirational stories of people with Hydrocephalus who have pushed - [Shunt patency study is on the cards](https://skyewaters.com/shunt-patency-study-is-on-the-cards/) - A week-long headache turned into dizziness and lightheadedness that felt very much like vertigo, with little to no appetite. Feeling like the world is spinning when you’re literally standing still, sitting and/or even laying down, is annoying and unnerving. A feeling akin to being on a rollercoaster, or out at sea, leaving you feeling nauseous - [What a whirlwind affair these last few years have been…](https://skyewaters.com/what-a-whirlwind-affair-these-last-few-years-have-been/) - Despite this long and winding road I’ve travelled, from: 2021 - brain bleed (surgery #6), 2022 - shunt placement (surgery #7) less than a year later, 2023 - I had to stop working to focus on my brain injury rehab, 2024 - I was dismissed after more than 10 years… 🎯My rehab goal: To get - [Brain injury: The missing piece you need to think about](https://skyewaters.com/brain-injury-the-missing-piece-you-need-to-think-about/) - If you’ve been diagnosed with Hydrocephalus and had brain surgery to treat it, does any of this resonate with you? Ever wonder(ed) why you're struggling cognitively? Does your short-term memory feel like crap!? Maybe you feel like your brain is literally in a sink hole and you simply can't get out. Or you may be - [My tired is tired..! Yet this post image, is my constant prayer](https://skyewaters.com/my-tired-is-tired-yet-this-post-image-is-my-constant-prayer/) - There some things in life that no one can prepare you for… For example: Take a diagnosis like Hydrocephalus, an incurable condition, at a pivotal time in your life. An interruption to your norm with brain surgery being the ONLY treatment option, for the rest of your days. It could be 1, it could be - [Faking being OK when you’re physically not, is far harder than faking being sick. ](https://skyewaters.com/faking-being-ok-when-youre-physically-not-is-far-harder-than-faking-being-sick/) - As someone diagnosed with Hydrocephalus and living with a brain injury, this is a sore point, obviously. People don’t necessarily have to say they don’t believe your symptoms; their actions (or even inaction) speak loudly and clear enough. Seeing beyond an invisible illness or injury, is a difficult one, I get it. How can you - [Brain Injury: The invisible disability.](https://skyewaters.com/brain-injury-the-invisible-disability/) - Hydrocephalus and brain injury won’t define my outcome, I reserve that right! - [The bittersweet journey continues...](https://skyewaters.com/the-bittersweet-journey-continues/) - For once, I have good news to share! Since my last post on losing my vision, my Neuro Ophthalmologist appointment was fast-tracked from 1 June to yesterday. Long story short, there are NO concerns about my vision! Thank God for small mercies...(Though losing your eyesight would definitely not be classed as "small!)" Not all things - [Cognitive impairment is NOT the same as intellectual disability](https://skyewaters.com/cognitive-impairment-is-not-the-same-as-intellectual-disability/) - It seems common for people to (incorrectly) assume that brain injury, causing cognitive impairment, is the same as intellectual disability. The extent of the injury will be dependent on the location of injury. In saying this, I do not presume to speak for the next person with a brain injury. But, I can attest to - [Incidental MRI finding: Highlighting what lurks beneath the surface.](https://skyewaters.com/incidental-mri-finding-highlighting-what-lurks-beneath-the-surface/) - Despite hearing my surgeon speak, providing medical information, sound no longer filtered through my eardrum. After some time (I'm not sure how long), I drifted slowly back to the sound of his voice. I heard Dr Tollesson half thinking out loud; “How do you get a patient not to worry when you tell them they - [Brain injury wreaks havoc on relationships so protect your heart](https://skyewaters.com/brain-injury-wreaks-havoc-on-relationships-so-protect-your-heart/) - Finding the balance, living life with hydrocephalus and brain injury, is tricky. Relationships take strain and fall apart. The loss of some relationships has been sad for me. But I’m realizing that this is inevitable unless the required effort is made by all parties. Truthfully, some have been easier to let go of than others...Maintenance - [It’s been a painful few days.](https://skyewaters.com/its-been-a-painful-few-days/) - I’ve been dealing with a headache that won’t go away, lasting all day and night. Nausea, no vomiting. Lack of appetite. And, my shunt felt tight initially, pulling down the right side of my head. Thankfully that’s subsided. I tried to see if I could hear “Sophy” (my shunt) this morning. It was quieter than - [Positive self-talk is so much better!](https://skyewaters.com/positive-self-talk-is-so-much-better/) - Ever hear of negative self-talk? I’m sure most people have and are VERY familiar with it. I know I sure am. There’s NO shame in that! However, I have found that the opposite, (though it requires effort), is much more beneficial. For those of us diagnosed with hydrocephalus, be it from birth or acquired later in - [Cognitive Impairment: Advice For Dealing With This Life Changing Event](https://skyewaters.com/cognitive-impairment-advice-for-dealing-with-this-life-changing-event/) - My top piece of advice in this instance, NEVER give up on yourself! I feel like I've been neglecting my website, that includes anyone who follows this blog. For that, I do apologise. Unfortunately, it’s not entirely within my control. Nevertheless, I also know it is far from the truth. In fact, I've been working - [Brain surgery #6 left it’s mark on me…](https://skyewaters.com/brain-surgery-6-left-its-mark-on-me/) - It’s been a while since I've managed to string two sentences together, read on to find out why… My repeat ETV surgery on 4 May 2021 and recovery have been unlike anything I’ve experienced before. My expectations were not high yet, truth be told, I had a feeling something might go wrong. Exactly what that - [Raising kids is not easy](https://skyewaters.com/raising-kids-is-not-easy/) - Falling in love is easy. Meeting someone special and knowing they are the one you want to spend the rest of your life with is a bit tricky, but the heart tends to trump in this arena...most times. Settling down and "nesting" comes sort of naturally, though awkward at first. And once you're over the - [Hydrocephalus can feel like being on a journey without a destination](https://skyewaters.com/hydrocephalus-can-feel-like-being-on-a-journey-without-a-destination/) - There’s no manual for surviving, or living with, hydrocephalus. The effects of the condition, and the consequences of treatment options, touch every aspect of a person’s life. Also, we all experience the condition differently. I still maintain, how YOU feel about YOUR own journey, is up to YOU. Don’t let anyone tell you how to - [We are not faking...](https://skyewaters.com/hydrocephalus-we-are-not-faking/) - I read a post on Facebook the other day, in one of the groups I belong to, that just angered me more than anything else. It wasn't even the fact that there seems to be a general belief that people with Hydrocephalus are faking their symptoms. It was reading a comment from a parent who - [When death comes in the morning...](https://skyewaters.com/when-death-comes-in-the-morning/) - Death, something I talk about often (maybe too often) and something, which has been at the forefront of my mind lately. I went through a phase when I was younger, where death did not bother me at all. In fact, I welcomed it to some degree... Don't get me wrong, I did not WANT to - [What you see, is what you get with me](https://skyewaters.com/i-sometimes-wonder-how-other-people-see-me/) - When I was younger, I was very shy. Painstakingly so, in fact. In certain situations and around certain people, especially the dominant, more confident personalities...I would not utter a word, much less smile. I found it easier to just shut my mouth and keep my lips zipped. I outgrew that at some point (not too - [Are you newly diagnosed with Hydrocephalus?](https://skyewaters.com/are-you-newly-diagnosed-with-hydrocephalus/) - I know at this very moment in time, your head is probably reeling with questions and your body is experiencing fears beyond anything you've ever experienced. The moment you heard the words, you probably shut down a bit or tried to absorb every word coming out of the doctor's mouth. But, you missed a few - [Pick yourself up when you're down, even when it's hard](https://skyewaters.com/pick-yourself-up-when-youre-down-even-when-its-hard/) - Somehow, those words fall into the "easier said than done" basket. And, it would be true. However, when it comes down to the nitty-gritty of life, that's exactly what you have to do. No matter what your experience, you are the only one who can get back up from a fall (disappointment, regret, life lesson, - [Hydrocephalus Awareness: What you need to know](https://skyewaters.com/hydrocephalus-awareness-what-you-need-to-know/) - What is it? Hydrocephalus is an incurable neurological condition that affects millions of people across the world. It does not discriminate. To date, the only treatment option available requires a person to undergo brain surgery (repeatedly), which is NOT a cure. The treatment options available CAN and DO fail, at any time. Too many people - [Phoenix rising](https://skyewaters.com/phoenix-rising/) - It’s been a while since I’ve posted anything on my website. I’ve slowed down to a crawl BUT, as long as I have words left in me, I’ll continue to speak out about the effects of Hydrocephalus and Brain injury. To bring you up to speed in a nutshell; the bleed during this surgery left - [Brain injury requires reducing your cognitive load](https://skyewaters.com/brain-injury-requires-reducing-your-cognitive-load/) - My brain can literally feel like a hornets nest (most of the time). A muddled space where thoughts, memories and information, go to die (a slow death). One coping strategy, that works (for me), is to reduce my cognitive load. I’ve had to learn a few and continue to do so, as I figure it - [The unexplained is complicated, and neurosurgeons don’t always have the answer…](https://skyewaters.com/the-unexplained-is-complicated-and-neurosurgeons-dont-always-have-the-answer/) - Let’s be honest: They are human too (despite some of them having a god-like complex). They can, and do, make mistakes but they also save lives. The difference: A surgeon who doesn’t make the effort, gives up because it’s too hard, or simply dismisses your concerns. VS A surgeon who goes the extra mile in - [From IT professional to brain injury survivor ](https://skyewaters.com/from-it-professional-to-brain-injury-survivor/) - I have worked in IT for more than 20 years of my life. After starting my career as a secretary, I soon moved into IT and learnt as much as I could, on the job. It was a field I felt drawn to. Over the years, I have successfully completed quite a few formal training - [The hard reality of living with a brain injury…](https://skyewaters.com/the-hard-reality-of-living-with-a-brain-injury/) - ***TRIGGER WARNING: This post touches on suicidal thoughts and death*** When you sustain a brain injury, in the prime of your life, things change in an instant. It hits harder still if you’re a high functioning person, independent and always doing everything for everyone else. Nothing can prepare you for what comes next as you - [Gert Tollesson, “saved my life and…my sanity!”](https://skyewaters.com/gert-tollesson-saved-my-life-andmy-sanity/) - Gert Tollesson, aka Dr “O”, is the 15th specialist I’ve consulted with regarding my Hydrocephalus. Most of you, who follow my blog, will know the uphill battle I’ve had to climb to finally get to him! And, thank God I have!!! Words I would use to describe him: Kind, Caring, Humble, Compassionate, Empath, Knowledgeable, Experienced, - [Reclaim your power](https://skyewaters.com/reclaim-your-power/) - It’s easy to feel powerless when you’re diagnosed with an incurable and invisible condition like Hydrocephalus. And, having to learn to navigate life with a brain injury. When life changes within the blink of an eye and your circumstances are unrecognisable. When the person staring back at you in the mirror, is more like a - [Brain injury changes the trajectory of your life…](https://skyewaters.com/brain-injury-changes-the-trajectory-of-your-life/) - That’s it for me. I’ll be closing my social media accounts and blog over the next few weeks. But, before I go, know this: Skyewaters has been a lifeline for me these past few years. Living with an invisible and incurable condition, is a challenge on SO many levels. Having to prove yourself and convince - [Dr “O” has done it!](https://skyewaters.com/dr-o-has-done-it/) - Finally! I have someone who has listened, not just by acknowledging what I’m saying but by actually validating EVERYTHING I’ve been saying. He didn't tell me I'm complex or try to palm me off on someone else. I felt genuinely listened to and experience so much empathy, which is so rare in a Neurosurgeon. I - [Hydrocephalus : Saying no to treatment the only way I know how...](https://skyewaters.com/hydrocephalus-saying-no-to-treatment-the-only-way-i-know-how/) - Being prescribed antidepressants a few weeks back to control my headaches more than anything else, I put starting them off because of my Hysterectomy surgery. (Though, I can't say I was all for the idea either). I didn't want the drugs to interfere with each other. I'm no pharmacist but after watching stories about the - [Hydrocephalus: An idea is brewing...](https://skyewaters.com/hydrocephalus-an-idea-is-brewing/) - There’s something which tugs my heart strings even more than the fact that so many people with Hydrocephalus endure endless brain surgeries. Children, babies to be more specific, the most vulnerable of all who go through this. As a mother, I’d be lying if I said it doesn’t stir something inside of me when I see a - [Open letter to Hydrocephalus](https://skyewaters.com/open-letter-to-hydrocephalus/) - Where did you come from..? Why did you happen to my body..? What led to me being the "lucky" one to have to grin and bear you..? Why did you choose me..? I guess I'll never know the answer to these questions... You caused an obstruction in the path of my cerebral aqueduct, making it - [Brain injury of a different kind…](https://skyewaters.com/brain-injury-of-a-different-kind/) - Between my post-op consult on Monday and listening to my Dad talk about his Last Will and Testament (following his COVID-19 diagnosis and recovery), I’ve been flung into the throws of a cry fest. My brain feels stuck…figuratively and literally! Warning: Vent ahead - Apologies in advance if this post is all over the place, - [Have you found your tribe?](https://skyewaters.com/have-you-found-your-tribe/) - When I was diagnosed with Hydrocephalus, 16 years ago now, I had to find my tribe: People who knew and understood what I was going through, because they shared the same diagnosis. Support groups on Facebook were great but, starting my blog, Skyewaters.com, was a step in the right direction. It gave me a much-needed - [Brain surgery: What you may not have considered…](https://skyewaters.com/brain-surgery-what-you-may-not-have-considered/) - Concussion, based on a true story, is currently playing on Netflix (until 9 June). It’s scary how being able to relate to something, so serious, can hit you so hard. Despite it being centred around the National Football League (NFL), the bottom line of this movie, and how it relates to me, is that brain - [Brain bleeds are serious and need attention](https://skyewaters.com/7302-2/) - 2 years ago I posted this: There’s always risk with any operation. Despite having a brain bleed during surgery last week, the reason for the blood in my CSF, I feel fortunate to just wait it out and have the blood clear. The discomfort and side effects of nausea, headaches and general unwell feeling, are - [No one asks for a brain injury.](https://skyewaters.com/no-one-asks-for-a-brain-injury/) - There are so many reasons why this happens to people: Concussions, domestic violence, sports injuries, motor vehicle accidents, etc. And yes, even brain surgery. You (literally) go from one moment to the next…injured beyond your own understanding. Like a butterfly, you have a rebirth of sorts. Becoming someone else in the process. It’s confusing. It’s - [When you feel like sinking to the bottom…](https://skyewaters.com/when-you-feel-like-sinking-to-the-bottom/) - Today marks two years since my repeat ETV. An operation that placed the cherry on my hydrocephalus cake. I’m navigating a brain injury caused by the bleed I had during surgery. It’s been hard to accept. It still is. (Time, patience and understanding is what I need, especially from myself. Easier said than done). So - [Celebrate the milestones, it'll help you face the next one!](https://skyewaters.com/celebrate-the-milestones-itll-help-you-face-the-next-one/) - A year ago today, I had a VP shunt placed. That was just less than a year after my repeat ETV (Endoscopic Third Ventriculostomy). A surgery which sealed my fate with a brain bleed (A post for another day). Statistically, shunts fail within the first year of placement. That doesn’t mean they can’t or won’t - [Brain surgery, it’s Not an easy decision](https://skyewaters.com/brain-surgery-its-not-an-easy-decision/) - We are caught between a rock and a hard place with this condition, WANTING and NEEDING help to make the pain go away but, NOT wanting to endure MORE brain surgery. The irony does not escape me..! It’s not an easy thing to go through, by any stretch of the imagination. It’s a vicious cycle; - [Finding the Joy](https://skyewaters.com/hydrocephalus-finding-the-joy/) - I recently completed and self-published my book Hydrocephalus: Floating Faithfully. This is a book that I had to write not because I was forced to. On the contrary, it was driven by my realization of, what I believe to be, my life purpose...To effect change, no matter how big or small. It serves so many - [Losing yourself…](https://skyewaters.com/losing-yourself/) - I have been feeling this way, more and more, each day. I have good moments and others less so. It’s a scary situation where you feel like you’re losing yourself. Like you’ve lost control. Helpless to your core and all you want, is out of the jail cell, which is your mind. Knowing how to - [Acceptance and understanding go hand-in-hand](https://skyewaters.com/acceptance-and-understanding-go-hand-in-hand/) - So much of what we face in life we have no control over. Some things we can change or simply eradicate from our lives. (That goes for some people too). But, sometimes there aren’t choices given with the challenges we have to endure. The only choice we get, is how we react, or respond to - [Haemorrhage during brain surgery has lasting effects…](https://skyewaters.com/haemorrhage-during-brain-surgery-has-lasting-effects/) - A repeat ETV (Endoscopic Third Ventriculostomy), performed on 4 May 2021, brain surgery #6, resulted in a haemorrhage during surgery. The effects of which have only escalated and is still ongoing. (Reading that post makes me realise it’s only gotten worse…). I have slowly been trying to piece it all together… There are a few - [There’s so much more going on beneath the surface than you realise!](https://skyewaters.com/theres-so-much-more-going-on-beneath-the-surface-than-you-realise/) - An iceberg seems appropriate for this post and, the sinking of the Titanic, is a perfect example of not realising the full extent of what lurks beneath the surface, hence the image I chose to use. IMHO! I wonder if the people on the Titanic had known what lay beneath the surface, what difference it - [Ever feel like you’re losing your mind..? Part 2 of 2](https://skyewaters.com/ever-feel-like-youre-losing-your-mind-part-2-of-2/) - For context, you can read Part 1 of 2 here. I know there’s not much I can physically do to change any of what I’m going through right now. As I try to process what is happening to me, willing myself into acceptance, I continue to mourn the loss of self. I feel myself “dying” - [Will you help get the conversation started..?](https://skyewaters.com/will-you-help-get-the-conversation-started/) - We Endure because we have to. We find ways to cope, survive and get through by being Resourceful. We gain Strength through and from it all, not by choice but, because there is none... People say: "You shouldn’t let your circumstances define you..." Hmmm…I say, there are times when you don't have a choice and - [Ever feel like you’re losing your mind..?](https://skyewaters.com/ever-feel-like-youre-losing-your-mind/) - Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those of us diagnosed with it, we - [Why is it so hard to find a good Neurosurgeon?](https://skyewaters.com/hydrocephalus-why-is-it-so-hard-to-find-a-good-neurosurgeon/) - I feel disheartened...almost helpless. Ever since I was diagnosed with Hydrocephalus in 2007, I've felt like I'm fighting an uphill battle. It's not with the condition so much, which has become a part of me and that I accept. But, with the medical professionals, I have to depend on for care. I struggle to understand - [Don’t go out without a fight..!](https://skyewaters.com/dont-go-out-without-a-fight/) - Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need unscheduled TLC. They are unpredictable. They - [Shunt infection is the last thing anyone wants or needs!](https://skyewaters.com/shunt-infection-is-the-last-thing-anyone-wants-or-needs/) - There’s so much you need to remember and be aware of and yet, it’s quite simple. Contradictory, I know! There are a few things we need to be aware of but, there are so many times you doubt yourself. The questions never end and nor does the second-guessing… I’ve learnt a few new things from - [Living with a VP Shunt is not new to me but, this time, it's different.](https://skyewaters.com/living-with-a-vp-shunt-is-not-new-to-me-but-this-time-its-different/) - For a start, I can hear my shunt draining CSF when I change positions or tilt my head a certain way. This is something I did not experience with my Medtronic programmable shunt. There are even times where I can hear the little ball inside the valve, rolling around like a bobble head. Especially, when - [Know your headache triggers and when to react](https://skyewaters.com/know-your-headache-triggers-and-when-to-react/) - Stress induced headaches are bad enough to mimic hydrocephalus headaches. The last 3 days and nights, I’ve had this kind of pain. Unfortunately, I haven't been able to take any pain relief strong enough to alleviate the discomfort. So, I grin and bear. Thankfully today, my 45th birthday, the pain has eased up (lingering slightly) - [Hydrocephalus…It’s complicated.](https://skyewaters.com/hydrocephalusits-complicated/) - You know when someone, on your friends list, updates their relationship status online to, “it’s complicated”? Generally, most people frown, but understand, and accept this for what it is. No explanation or definition, of what it means, required. The same can he said for this condition. At it’s very core, hydrocephalus is complicated. At the - [You can help me face the unknown. This is how!](https://skyewaters.com/you-can-help-me-face-the-unknown-this-is-how/) - When supporting someone with an incurable condition, there’s a level of trust that comes with great responsibility. It requires vigilance, and an awareness, as if you were protecting your own life…Without this, they might as well be fighting their battle in isolation... While recovering from surgery, I had a few nurses who spoke to me - [The most important daily reminder to myself; "You've just had brain surgery! Take it easy on yourself"](https://skyewaters.com/the-most-important-daily-reminder-to-myself-youve-just-had-brain-surgery-take-it-easy-on-yourself/) - I repeat this as soon as I catch myself being too hard on the one person who doesn't need it: ME Brain surgery does not leave you unscathed...the after effects are real and, under the right circumstances, can have a negative effect! It's what you do after the fact that matters most...Celeste A. Marriday Hopefully - [An Inside Look At VP Shunt Surgery. The Courage Within!](https://skyewaters.com/an-inside-look-at-vp-shunt-surgery-the-courage-within/) - It's been 3 weeks since I had a VP Shunt placed. There are spots on my skull where it feels like my head has been placed in a vice grip, (stealth machine, to be exact, according to one of the nurses when I asked why I have a covering above my left eye). This video - [Shunts are not for everyone but neither is brain surgery..!](https://skyewaters.com/shunts-are-not-for-everyone-but-neither-is-brain-surgery/) - Shunts save lives; they also cause more problems for those who need them, when they fail to work as intended. I believe each person with hydrocephalus is entitled to feel the way they do about their treatment option, regardless of what that may be. Our experiences differ and, depending on your own individual circumstances, you’ll - [Lifetime warranty. Lifetime guarantee…](https://skyewaters.com/lifetime-warranty-lifetime-guarantee/) - What is it about the fact that Hydrocephalus is incurable that people don’t understand? More specifically, that treatment options i.e., brain surgery is NOT a cure. It’s as tiring for me to continuously say, as it is to hear or follow someone else’s train of thought, on the matter. More so, when said person/s nod - [You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.](https://skyewaters.com/you-can-get-angry-you-can-get-sad-but-no-matter-the-emotion-you-have-to-keep-going/) - I wrote this a few weeks ago, it was meant to be my way of motivating anyone who needed it. But, I never actually got around to finishing it. Now, lying in a hospital bed (yet again), I find it more suited to my own situation. Current state: I called my neurosurgeon’s room yesterday and - [Feels like I’m fading away…](https://skyewaters.com/feels-like-im-fading-away/) - It’s not the life I’m used to. It’s not the life I want. I need things to go back to a time where I felt more in control. A time where I could make sense of my situation. I’ve only had 6 brain surgeries but the last one left me in a bad way. I - [Brain damage is not easily undone, after the fact! What you need to know...](https://skyewaters.com/brain-damage-is-not-easily-undone-after-the-fact-what-you-need-to-know/) - When glass is shattered, you can try to piece it all back together, however, the cracks will show, altering the appearance. And, any tiny shards you may have missed, will undoubtedly leave some holes and weak spots.C. A. Marriday The risk of inaction As someone diagnosed with Hydrocephalus, we are often advised to remain vigilant, - [Do you ever just feel like a waste of space?](https://skyewaters.com/do-you-ever-just-feel-like-a-waste-of-space/) - In one of my previous posts: “How I cope is much the same as being like a duck”, I talk about the best advice I was given by my ex-manager Ian, after my diagnosis and first brain surgery. I struggled at work, to get back to a version of my former self (who seemed nonexistent). - [Hydrocephalus and the art of war…](https://skyewaters.com/hydrocephalus-and-the-art-of-war/) - In the days of war (I can only imagine), facing an unknown opponent, you have no idea what their strengths or weaknesses are. Nor, do you know, what tactical moves they will use to defeat you. You either fear them or you don’t, strong in your resolve, to give this fight your best shot! Your - [Let your body be your guide!](https://skyewaters.com/let-your-body-be-your-guide/) - This condition has taught me to be, not only resilient, but also resourceful. The things I’ve had to do and endure, over these last few years, cause me to feel both anger and admiration (amongst other things). As a result, it forces you to figure things out for yourself! I feel anger because I’ve had - [The change within…](https://skyewaters.com/the-change-within/) - Hydrocephalus is by no means easy to live with The constant brain surgeries, doctors second guessing what you’re saying, refusing to help you, uncertainty and endless worrying. The list goes on… The biggest one, overall, was losing my vision intermittently. It scared me…Brain surgery #6 resolved all of that. The fight to get to that - ["Is this going to be wash, rinse, repeat ad infinitum?"](https://skyewaters.com/is-this-going-to-be-wash-rinse-repeat-ad-infinitum/) - To understand, you truly have to experience it for yourself "If you've been living with countless shunt revisions and replacements for a long time, I feel your pain. It must feel like a cruel punishment for a crime you didn't commit. As a young adult without someone in your corner to help ease your pain - [Hydrocephalus: A ticking time bomb...](https://skyewaters.com/hydrocephalus-a-ticking-time-bomb/) - You don’t know when, you don’t know how...but, you know it will. Each day goes by, turning into a week, a month...a year. Moments of happiness, moments of sadness and...moments in-between. Regardless thereof...the aching pain inside your head reminds you of your own reality. People come and people go, “each to their own”, as the - [Does the world turn its back on you, once you’re diagnosed with an incurable condition..?](https://skyewaters.com/does-the-world-turn-its-back-on-you-once-youre-diagnosed-with-an-incurable-condition/) - I know not everyone will agree with this post, and I’m OK with that. But, I’d like to believe that some of what I have to say, will resonate with people who have actually experienced it. For those who have, I hope this gives you a voice… My humble opinion To answer my own question, - [Let’s talk about it…post surgery depression!](https://skyewaters.com/lets-talk-about-itpost-surgery-depression/) - Trigger Warning: Depression, End of life/Suicide, Trauma. If you feel in the least affected, please do not read this. And, if you need to, seek help. I’ve gone through bouts of depression on and off throughout my life. I’m no stranger to this dark demon. Spiralling down the rabbit hole I didn’t really give it - [Hydrocephalus sucks! Validating your feelings.](https://skyewaters.com/hydrocephalus-sucks-validating-your-feelings/) - So often I've felt a need just for some understanding when it comes to this condition. I've reached a point where I know and commit to memory that this condition is invisible and, as such, others around me will unfortunately treat it the same way. They're simply oblivious to the effects and emotions that accompany - [Brain surgery cost is ridiculous. This is why.](https://skyewaters.com/brain-surgery-cost-is-ridiculous-this-is-why/) - This post is more about the total cost involved with care, treatment, surgery and overall recovery. I would go so far as to say; aside from the financial cost, there's an impact on ones mental, physical and emotional state as well. And, under the right circumstances, can have the same effect on your relationship with - [When there’s a “kink” in the armour….](https://skyewaters.com/when-theres-a-kink-in-the-armour/) - Shunts, a bone of contention for many people diagnosed with Hydrocephalus. I would almost go so far as to say there’s a divide on the feeling towards this “lifesaving” device. Not everyone feels the love when it comes to them, but we all know that without them, things would be “challenging”, to say the least. - [What are your little “quirks” before surgery?](https://skyewaters.com/what-are-your-little-quirks-before-surgery/) - It’s been quite a challenge getting back into writing. These last few months have certainly taken a toll on me but, progress is evident. I don’t know if it’s my last brain surgery in May, which left me paranoid but, I always find myself trying to solve the “world’s” problems before I have surgery. In - [Surgery again…but, thankfully, not brain surgery..!](https://skyewaters.com/surgery-againbut-thankfully-not-brain-surgery/) - It’s been a while since I’ve been able to focus enough and write. Recovery from brain surgery #6 is still ongoing but, every day is getting better…The Vitamin B and Ginkgo Biloba that I've been taking, is certainly showing the benefits in terms of my cognitive function. Even though I'm not 100% yet, I can - [Cancer is not something I want to consider in my life but sometimes, there is no choice…](https://skyewaters.com/cancer-is-not-something-i-want-to-consider-in-my-life-but-sometimes-there-is-no-choice/) - Surgery..again! It’s just over 3 months since my repeat ETV (brain surgery #6). I stared at a similar photo to the one at the top of this post last week, in my Endocrine surgeon’s waiting room. Having just had a consult with him and agreeing to go ahead with my right-sided hemithyroidectomy (surgically removing half - [I get so tired of the fight, all it’s detours and juncture points.](https://skyewaters.com/i-get-so-tired-of-the-fight-all-its-detours-and-juncture-points/) - It’s not always the same fight but regardless, I’m tired. To quote a fellow Hydro sister: “I know I am here for God's purpose and He knows my days here yet, I am tired of having to force my physical body to do what my spirit wants to do.” It’s ironic how much I can - [I’ve been feeling like I can do this, get to full recovery in a month, but…](https://skyewaters.com/ive-been-feeling-like-i-can-do-this-get-to-full-recovery-in-a-month-but/) - It’s been harder than I anticipated. Maybe I rushed it. Maybe I didn’t rest enough. Or, maybe this time, brain surgery has taken its toll on me. I’ve been feeling like I need to be stronger than I am, in all areas of my life: physically, mentally and spiritually. Thinking that if I’m not, somehow, - [Use the teachable moments when you find it.](https://skyewaters.com/use-the-teachable-moments-when-you-find-it/) - Mahatma Gandhi: “Be the change you wish to see in the world.” Regardless of whether you're advocating for yourself or someone you know/in your life who has Hydrocephalus, there's a teachable moment, no matter how big or small. While I was in hospital a few weeks ago after my repeat ETV surgery, ICU specifically, I had - [Divine intervention...](https://skyewaters.com/divine-intervention/) - My hydro sister Cindy, phoned a day before my surgery and asked if she could say the Hebrew prayer for healing, for me. I happily accepted. Then she asked me to do something before the operation starts: "Ask the surgeon to take a moment of silence". It reminded me of Lenox Hill, a documentary of - [Pre-op consult and what you may want to consider...](https://skyewaters.com/pre-op-consult-and-what-you-may-want-to-consider/) - A few days ago, I was faced with a heavy burden of having to fork out just shy of AU$5000 up front, which I normally keep under the mattress for a rainy day, like everyone else (sarcasm intended). It required an added level of perseverance and resourcefulness. Let’s just say, the financial strain of brain - [Money Or Your Life..?](https://skyewaters.com/money-or-your-life/) - It’s not an easy decision to make. It might seem obvious but reality dictates otherwise. And, unfairly so at times… I’m at a crossroad, one I’ve faced before, so many times. I finally found a surgeon who thinks outside the box and agrees my ETV is partially blocked. That leaves me with no other choice - [Doctors shouldn't be the reason why patients suffer...or die!](https://skyewaters.com/doctors-shouldnt-be-the-reason-why-patients-suffer-or-die/) - I've never been a person blessed with patience. If I had to be honest, I'm probably the least patient person I know! There's so much waiting you have to do in-between doctors appointments, for test results and even the follow-up consult after the tests are done. In my last post, I mentioned that Dr O - [Unreliable witness](https://skyewaters.com/unreliable-witness/) - What are your symptoms?How long do they last?Are there any triggers?What brings relief?Have you had these symptoms before?What else do you recall?What’s different this time?Blah...blah...blah... I often think that if I had to be part of a criminal investigation, where Hydrocephalus is the vigilante and I’m the victim, I would be such an unreliable witness. - [Ever feel like you’re falling apart...literally?](https://skyewaters.com/ever-feel-like-youre-falling-apart-literally/) - I feel like I’m being “chipped” away piece by piece. Apparently some body parts you can live without, who knew? Some surgeries improve things and others bring more complications than you bargained for. This has been a consistent (almost rebellious) communication from the doctors I’ve spoken with over these last 2 weeks. It feels like - [Know what imaging to ask for..](https://skyewaters.com/know-what-imaging-to-ask-for/) - Imaging, we have so many of them - you get used to it. But, do you know what to ask for and why? I often wonder how the medical staff, looking at the images on the screen, know what it is they're looking at. Don't misunderstand. I know they get years of training and with - [Onwards and upwards!](https://skyewaters.com/onwards-and-upwards/) - If life has taught me anything, and more specifically Hydrocephalus, it’s that you simply cannot give up. You can get tired of the fight, yes (repeatedly!). You can take a break, for however long you choose. Ok, realistically...for as long as Hydrocephalus gives you a pass...but I think you get the idea. You can even - [Life without Hydrocephalus](https://skyewaters.com/life-without-hydrocephalus/) - Many of us who have this condition have been born with it and therefore don’t have any idea what it’s like to live without it. Also, you can’t miss something you never knew. I posted this on Valentine’s Day and have had a few people ask: “What’s it like to live life without Hydrocephalus?” The - [What would you do?](https://skyewaters.com/what-would-you-do/) - O for “Oh no!”, “Onward and upward”, “Over it!”? Whatever it is, that’s where I’m at. Moving on should get easier, especially after consulting with so many specialists but... It’s as trying now as it was when I first started out! 3 countries later and I appear to either not be getting the memo OR - [Human pincushion](https://skyewaters.com/human-pincushion/) - I hate needles just as much as the next person. Always have, always will. A few nights ago I had an abdominal MRI to figure out what’s causing the pain I’ve been having for the past couple of years. For now, we suspect either scar tissue from my VP shunt, pancreas or an issue arising - [Forget you have it...](https://skyewaters.com/forget-you-have-it/) - Realistically, on a scale of 1 to 10, how easy would it be to forget you have an incurable condition? More specifically, Hydrocephalus. I’ll admit, there are days where my memory issues come in handy in this regard. To carry on with life, as if nothing is wrong, is a thing of “pleasure”. Truth be - [There’s bound to be casualties...](https://skyewaters.com/theres-bound-to-be-casualties/) - A diagnosis of an incurable condition will undoubtedly leave some casualties along the way. In this instance, I don’t mean anyone dying but rather loss of relationships. Some of us are born with Hydrocephalus, some of us are diagnosed somewhere in-between and others, towards our last stretch of the runway of life. Being one of - [What would you tell your younger self?](https://skyewaters.com/what-would-you-tell-your-younger-self/) - We all walk a different path despite being diagnosed with the same condition. Some, or all of these emotions, may play a part in your story (in no particular order and, sometimes, it may even be a case of repeating itself). Looking back at my own life with Hydrocephalus, before, I couldn’t think about what - [Looking after your mental health](https://skyewaters.com/looking-after-your-mental-health/) - Mental health challenges, are nothing to scoff at. I do believe that most people experience something (or even a few) that adversely them, at one point or another. I’m not ashamed to say I have my fair share of ups and downs. It’s never easy to deal with and, for some, it doesn’t end favourably...because - [Hydrocephalus: Nothing about this condition is easy...](https://skyewaters.com/hydrocephalus-nothing-about-this-condition-is-easy/) - Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain. After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My initial thought was, if this is - [Hydrocephalus: Vision loss is scary and Migraines suck!](https://skyewaters.com/hydrocephalus-vision-loss-is-scary-and-migraines-suck/) - My central vision blacked out on Christmas Eve, while working, sending me into a bit of a panic. People’s faces were reduced to half an image and text was darn near impossible to read! I smiled at the receptionist on my way out of the office, whilst freaking out inside. I decided to step away - [Hydrocephalus: Isn’t it ironic?](https://skyewaters.com/hydrocephalus-isnt-it-ironic/) - My husband fears me having more brain surgery and would rather pretend all is well with me. When it comes to Hydrocephalus, I fear so many things too, including sharing his fears. I understand what drives it. However, I don't have the luxury of pretending all is well, especially not knowing all that I do - [Hydrocephalus: Life interrupted…](https://skyewaters.com/hydrocephalus-life-interrupted/) - Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant... Day 1 - VP shunt revision of a Medtronic Programmable Day 2 - VP shunt replacement with an Orbis Sigma Day 3 - [Hydrocephalus: The heavy burden of being the main breadwinner despite living with an incurable condition...](https://skyewaters.com/hydrocephalus-the-heavy-burden-of-being-the-main-breadwinner-despite-living-with-an-incurable-condition/) - A condition like Hydrocephalus casts some of its own burdensome moments on the person diagnosed with it, amongst other things. It's unpredictable nature, leaves nothing to be desired. The burden wears heavy and so too does the responsibility of it all, like: Having to support your entire family - 5 in mine (thankfully my husband - [Hydrocephalus: When other medical professionals have a sense of urgency about your symptoms.](https://skyewaters.com/hydrocephalus-when-other-medical-professionals-have-a-sense-of-urgency-about-your-symptoms/) - To say I have been well and truly prodded and poked would be about right! Sunday - MRI, Monday - Endoscopic ultrasound, Endoscopy and Colonoscopy (ugh!), and Tuesday - Thyroid nodule biopsy. The anaesthetist yesterday asked me about my medical history, very interested in my Hyperthyroidism and Hydrocephalus. Her questions were priceless and struck a chord, an - [Hydrocephalus: Rooting for Roona](https://skyewaters.com/hydrocephalus-rooting-for-roona/) - Something that many with Hydrocephalus cannot believe, and rightly so is, how few people know about it. Some have never heard of it and, even in the medical profession, this is the case. I have found myself in many situations where I’ve had to simplify an explanation for someone else, because they simply don’t know - [Hydrocephalus: Have you ever considered the potential risk of radiation (i.e. Cancer) over time? What would your risk appetite be?](https://skyewaters.com/hydrocephalus-have-you-ever-considered-the-potential-risk-of-radiation-i-e-cancer-over-time-what-would-your-risk-appetite-be/) - Stupid question (partially)...I know! “Like other X-ray imaging exams, CT scans expose you briefly to a small, targeted amount of ionizing radiation. The radiation helps create an image of structures inside your body. At the low doses of radiation, a CT scan uses, your risk of developing cancer from it is so small that it - [Hydrocephalus: When you realise you simply can’t “fix” it!](https://skyewaters.com/hydrocephalus-when-you-realise-you-simply-cant-fix-it/) - Disclaimer: This is not a post to influence anyone else, nor should it be used as medical advice or guidance. I have an inherent nature to try and fix things. It doesn’t matter what it is; my situation, someone else’s problems or just the world in general (I know, overly ambitious!). I’ve had a while - [Hydrocephalus: Being sent from a Neurosurgeon (NS) to a Neurologist.](https://skyewaters.com/hydrocephalus-being-sent-from-a-neurosurgeon-ns-to-a-neurologist/) - A Neurologist focuses mainly on treating you with medication to control your symptoms. A NS is like a plumber, they fix the leaky/broken pipe (shunt) or reopen the blocked/partially blocked hole (ETV). Understanding the condition you have, is the first step to knowing what you need. For some, their faith, trust and belief in their - [Hydrocephalus: When do you stop searching?](https://skyewaters.com/hydrocephalus-when-do-you-stop-searching/) - One clear challenge I’ve experienced personally, and seen others with Hydrocephalus struggle with, is finding a good Neurosurgeon/medical team. We encourage each other to not give up, to keep searching for that one doctor who will listen. It’s not uncommon to feel unheard or be disappointed by the medical care you receive, or (more commonly) - [Hydrocephalus: Know, Understand...Appreciate!](https://skyewaters.com/hydrocephalus-know-understand-appreciate-2/) - I have Hydrocephalus and have had brain surgery to treat it, 5 thus far. But.., this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because of it, which is also the number one reason for brain surgery in children (some only a few hours or days - [Hydrocephalus: Invisible illness has a voice...](https://skyewaters.com/hydrocephalus-invisible-illness-has-a-voice/) - Hope. A word with so many different connotations, for different people, depending on their individual circumstances. Whether you’re the one diagnosed with Hydrocephalus or you know someone who is, it comes into play. And, since this is an incurable condition, your hope morphs as it ebbs and flows in an infinite loop! These are just - [Hydrocephalus: A hard way to learn what drugs to avoid!](https://skyewaters.com/hydrocephalus-a-hard-way-to-learn-what-drugs-to-avoid/) - Disclaimer: I’m writing this post in hindsight, which is a wonderful gift and at the tail end of practically poisoning myself, unknowingly. So, apologies in advance where needed…(Also, it's not so much Hydro-related but no doubt a piece of my Hydro puzzle). NB. This drug might work for some individuals and this post is in - [Hydrocephalus: The effect of loss...](https://skyewaters.com/hydrocephalus-the-effect-of-loss/) - This week has been an extremely poignant one in terms of loss for me. Isn't it funny how one thing can have a ripple, snowball or even domino effect, sending everything cascading down? So many factors hitting home overall, life dealing cards that just seem so unfair, making me question so much and yet... My - [Hydrocephalus: A pertinent question...](https://skyewaters.com/hydrocephalus-a-pertinent-question/) - When you keep getting stuck with the wrong one... I’m starting to feel like the woman who attracts the wrong kind of man. The question I’m left with; “What am I doing wrong?” I go into my appointments and, quite honestly, the closer I get to them, the more anxious I become. I already know - [Hydrocephalus: Saying “I’m fine...”](https://skyewaters.com/hydrocephalus-saying-im-fine/) - When someone asks me how I am in general, but especially, after a Hydro “episode”, I often respond with these 2 little words. It’s instinctive. The truth of the matter is, I don’t know that for sure. How do I truly know that I am fine..!? Fact is, I don’t (Truth). Surely, something must be - [Hydrocephalus: This is NO way to live…](https://skyewaters.com/hydrocephalus-this-is-no-way-to-live/) - I’ve had a few people say this to me. People at the end of their rope, dealing with pain and discomfort from living with Hydrocephalus, and some, living with more conditions/diseases on top of it all. I fully empathise and, in most cases, share their sentiment. More especially, today while I’m in the grips of - [Hydrocephalus: When You're At A Crossroad In Terms Of YOUR Care...](https://skyewaters.com/hydrocephalus-when-youre-at-a-crossroad-in-terms-of-your-care/) - I sometimes think this is such an unfair condition to have. One could argue and ask, compared to what? This would be a "relatively" fair enough question. But, I do feel, (as someone diagnosed with it, someone who knows the full extent of the pain and consequences of the diagnosis and, what you have to - [Hydrocephalus: Human being on the table…](https://skyewaters.com/hydrocephalus-human-being-on-the-table/) - Last week I binge watched Lenox Hill, a documentary, currently playing on Netflix. Not everyone has the stomach for watching brain surgery or women giving birth. So, if you’re squeamish, don’t watch it. Me on the other hand, I find it interesting...brain surgery, that is. For some reason, I want to know what happens after - [Hydrocephalus: Anxiety and Memory Issues](https://skyewaters.com/hydrocephalus-anxiety-and-memory-issues/) - I know this is probably an old topic but, for me, it never grows old simply because it affects me on a daily basis. I possibly haven't labelled it as such before, but I do feel anxious when someone challenges me on the validity of my memory issues. There's a noticeable build-up of fear, anticipation - [Hydrocephalus: Know. Understand. Appreciate...](https://skyewaters.com/hydrocephalus-know-understand-appreciate/) - I have Hydrocephalus and I’ve had brain surgery to treat it. 5 thus far, in fact. I've had a VP Shunt, which has been removed and for the last 10 and a half years, an ETV. But..., this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because - [Hydrocephalus: The Cannabidiol (medicinal cannabis) effect...](https://skyewaters.com/hydrocephalus-the-cannabidiol-medicinal-cannabis-effect/) - If anyone had ever said to me that I’d be using cannabis in any form, in my future, I think I would have asked them what they're smoking. I’ve always been one to toe the line and always try to do the right thing…I still do, mostly. But what is the “right” thing when it - [Hydrocephalus: Resilience grows on you…](https://skyewaters.com/hydrocephalus-resilience-grows-on-you/) - I seem to learn more about myself and this condition every time... A week ago, I was in unimaginable pain and for the first time, I made the decision NOT to seek medical help. Thankfully my headache has gone since then, that in itself is a huge relief. I’m not back to my normal self - [Hydrocephalus: How bad does it have to get?](https://skyewaters.com/hydrocephalus-how-bad-does-it-have-to-get/) - Waking up with a headache a few days ago is nothing new. One that doesn’t go away, also nothing new. In fact, nothing about that day was different to any other time. I took some Codeine early in the day because I sensed this one would not let up. I figured I’d go for something - [Hydrocephalus: My Hydro diagnosis becomes a teenager...](https://skyewaters.com/hydrocephalus-my-hydro-diagnosis-becomes-a-teenager/) - 13 years ago, today, my world changed. A “simple” visit to a Neurologist to find out what was causing my daily headaches, and subsequent CT scan, dropped a new word into my vocabulary. She was the first one to believe that there wasn’t anything sinister going on, that I was probably dealing with Migraines, or - [Hydrocephalus: Being sent back to an abusive relationship...](https://skyewaters.com/hydrocephalus-being-sent-back-to-an-abusive-relationship/) - Sometimes, being sent home after going to the hospital with, “Nothing’s wrong, everything is normal”, is equivalent to being sent back to an abusive relationship. You don’t know when the next flare up/episode will happen. You don’t know how badly you’ll be affected. You don’t know if you’ll be in a position to get help - [Hydrocephalus: Confessions at the edge...](https://skyewaters.com/hydrocephalus-confessions-at-the-edge/) - I don’t regard myself as suicidal. It’s a very serious thing, to say the least. Therefore, I will NEVER make light of it. Too many people have ended their lives this way and the after-effects do not escape me. Despite being told that I am, treated with medication and “diagnosed” as depressed (another thing I - [Hydrocephalus: Coronavirus (COVID19)](https://skyewaters.com/hydrocephalus-coronavirus-covid19/) - I’d be lying if I said, I’m not concerned. The outbreak of the coronavirus is a hot topic across the world right now. I also have no doubt that there are some of us, living with Hydrocephalus, who are questioning the level of risk to us. In fact, many have asked the question. This is - [Hydrocephalus: Throwing money at a problem that WON'T go away...](https://skyewaters.com/hydrocephalus-throwing-money-at-a-problem-that-wont-go-away/) - It’s no secret, money makes this world go round. (Some may suggest other things do but...). This week, I’ve been reminded again just how expensive, inconvenient and burdensome this condition is in my life. At my last visit, the Neurosurgeon told me to see an Ophthalmologist and also to get an MRI of my brain - [Hydrocephalus: I’m not scared to face all this on my own.](https://skyewaters.com/hydrocephalus-im-not-scared-to-face-all-this-on-my-own/) - There are days when I wish I couldn’t read people. The unspoken can sometimes be so loud. • A reaction to something said. • The change of tone in your voice. • The way your face changes: mouth, eyes, brows... • A shift in your posture and demeanour. • Even just silence through no verbal - [Hydrocephalus: The waiting game and getting in the way of life!](https://skyewaters.com/hydrocephalus-the-waiting-game-and-getting-in-the-way-of-life/) - Hydrocephalus doesn't ask you if or when it can interrupt your life, it simply does. No matter whether you fail your last year of school because you were symptomatic around exam time and your brain took such a beating that nothing would stick. Or you have your baby brother's wedding to attend and end up - [Hydrocephalus: Unfair question or not?](https://skyewaters.com/hydrocephalus-unfair-question-or-not/) - “What do you want them to do?” A question I’ve been asked by some well-meaning individuals in my life, and in general, when I’ve been at my lowest point of not having my symptoms treated. (They don’t have Hydrocephalus). Truth be told, there’s a physical reaction I have to these words being asked of me, - [Hydrocephalus: Would they even know what to do?](https://skyewaters.com/hydrocephalus-would-they-even-know-what-to-do/) - Do the people in your life, those closest to you, know what to do if you need help? How knowledgeable are they when it comes to Hydrocephalus and you? Honestly, I have the utmost respect for parents who fight fiercely for their children with Hydrocephalus and are so in tune, you'd swear they're the ones - [Hydrocephalus: Be kind and take care of yourself first!](https://skyewaters.com/hydrocephalus-be-kind-and-take-care-of-yourself-first/) - I never truly understood this saying. In fact, I suck at taking care of myself. This I know… It’s weird, I almost feel like I’m being selfish when I don’t respond to someone else’s request for help i.e. I can’t say NO. But, knowing myself, I can say with certainty that it’s not the same - [Hydrocephalus: The abusive relationship](https://skyewaters.com/hydrocephalus-the-abusive-relationship/) - With my last post about Hydrocephalus being the 3rd party in your marriage, this one seems quite apt to follow. This condition does not play fair. It robs you of so much: time, relationships, money, memory, sanity...so much. But it’s a union where you don’t get to call it quits unless you actually check out - [Hydrocephalus: The 3rd party in your marriage](https://skyewaters.com/hydrocephalus-the-3rd-party-in-your-marriage/) - For better or worse...in sickness and in health...till death do us part... When Hydrocephalus made itself known and stepped into my life, nothing could have prepared me for the road that lay ahead. Age 29, married, 2 kids and in the prime of my career…I would never have thought (in time), I’d be stepping into - [Hydrocephalus...It’s not OK!](https://skyewaters.com/hydrocephalus-its-not-ok/) - A diagnosis of Hydrocephalus, caused through no fault of my own, is something I can live with. I’ve had to learn so much in order to cope and, more importantly, accept this new way of life. It’s a constant learning curve! I don’t exactly have a choice. None of us do... You question. You cry. - [Hydrocephalus: Are doctors biased?](https://skyewaters.com/hydrocephalus-are-doctors-biased/) - A hydro warrior asked me this week: “If you've ever gone for a second opinion, have you ever felt the second opinion judging you because of previous treatment you've received?” I had to smile at this question because not only have I sought a second opinion but I’ve lost count as to the number of - [Hydrocephalus: Losing oneself without even knowing it...](https://skyewaters.com/hydrocephalus-losing-oneself-without-even-knowing-it/) - Something no one can prepare you for, is the moment your whole life changes. It doesn’t matter what it is really...you can read an article about something that happened to someone else and go, “Oh! That’s just so sad...” but you move on and forget. Then, life happens to you and everything changes. Sometimes it’s - [Hydrocephalus: Shame on you...](https://skyewaters.com/hydrocephalus-shame-on-you/) - When I wrote We are not faking, I meant what I said. What I didn’t know at the time was how much of a lifeline these words would become. A lifeline not that someone else throws your way but one that you need to remind yourself of, more than just a few times. It’s never - [Complex, complicated and sitting on the fence](https://skyewaters.com/complex-complicated-and-sitting-on-the-fence/) - Complex and complicated, two words that have been used, my entire life it seems, to describe any medical condition I’ve had over the years. My parents have told me that the reason for sending me to live with my grandparents at a very young age was because I was “a very sick child”. They can’t - [Hydrocephalus: A muddled state of affairs!](https://skyewaters.com/hydrocephalus-a-muddled-state-of-affairs/) - How quickly, or often, does your brain go into a muddled state? I find that having an idea is one thing, especially a good one but, when it comes to delivering the pitch, conveying it to someone else…I totally end up like a cat caught up in a ball of yarn! It’s crazy sometimes and, - [Hydrocephalus: Just another detour...](https://skyewaters.com/hydrocephalus-just-another-detour/) - There are moments in your life where you have no control over what happens to you, so many, too many to list. We all have them, we all go through “stuff” that either make us or break us. Situations which require us to go on a journey, into the unknown. Situations which poses challenges, conjuring - [Hydrocephalus: 10 Years Post ETV (brain surgery)!](https://skyewaters.com/hydrocephalus-10-years-post-etv-brain-surgery/) - It almost feels surreal. There are timeline estimates placed on the length of time a shunt or ETV could take before it fails, the likelihood decreases (or so I've been told). They have a lifespan in terms of success vs failure rate. Generally, 2 years for a shunt and 5 years for an ETV, if - [Hydrocephalus: What shunt type is right for you...?](https://skyewaters.com/hydrocephalus-what-shunt-type-is-right-for-you/) - After diagnosis (Age 29), I was told by the attending Neurosurgeon, that he’d be putting in a Medtronic Strata Programmable VP Shunt (Ventriculoperitoneal). It goes into the ventricle in your brain, fed down the side of you head, behind your ear, down your neck and chest, and into your abdomen. (Hence the 6cm scar, just - [Hydrocephalus: Resuscitation through conversation…](https://skyewaters.com/hydrocephalus-resuscitation-through-conversation/) - Do you ever have conversations, sit back later and realise there was a message in it for you? It’s no secret, my previous consultation left me a bit down in the dumps (Ok, very much so!). I slipped down the same slippery slope, like so many other times before, and I've managed to claw my - [Hydrocephalus : Advice for parents of children with this condition ](https://skyewaters.com/hydrocephalus-advice-for-parents-of-children-with-this-condition/) - Parents, You are the example your child will live by in time to come. I know for a fact that I don't need to be telling you just how scary it is not knowing if something is wrong. You've been there/are there and know exactly how torturous it is. However, your child will see how you - [Hydrocephalus: The validation effect...](https://skyewaters.com/hydrocephalus-the-validation-effect/) - After my last post, I withdrew from the world for a while. My way of coping I guess. In fact, I wasn’t too sure what my next post, if any at all, would be. I truly felt like the wind had been taken out of my sails and I lacked direction. I can’t honestly say - [Hydrocephalus: When someone throws you a lifeline...use it!](https://skyewaters.com/hydrocephalus-when-someone-throws-you-a-lifeline-use-it/) - When I stepped into that ring again yesterday, I was “prepared” for the outcome I got…or was I? Funny thing about it, with the softest blow, I feel like I’ve been beaten to a pulp. That’s how little it took. For me to know the possible outcome, thinking I could handle it, to the emotional - [Hydrocephalus: Waiting for an upcoming appointment...](https://skyewaters.com/hydrocephalus-waiting-for-an-upcoming-appointment/) - Read this if you'd like to gain a better understanding of the mindset of someone with Hydrocephalus, waiting for an upcoming appointment. (Generally speaking, of course, as we all approach situations differently). I posted yesterday that I'm feeling “anxious” about my upcoming consult tomorrow. Truth be told, there's probably many words I could use to - [Hydrocephalus: What does perspective look like to you?](https://skyewaters.com/hydrocephalus-what-does-perspective-look-like-to-you/) - Have you ever found yourself in a situation where you make a big deal of things and, after some time has passed, realise that it wasn’t as bad as you thought? I’ve certainly had my fair share of these moments and still do! Life hands us all lemons along the way, I have no doubt - [Hydrocephalus: Loneliness, a feeling which consumes you when you have an invisible condition. But, have a look at this!](https://skyewaters.com/hydrocephalus-loneliness-a-feeling-which-consumes-you-when-you-have-an-invisible-condition-but-have-a-look-at-this/) - The very word “invisible”, speaks volumes if you care to notice it. To look at a person with Hydrocephalus, you wouldn’t know they had it, unless they’ve told you, or the signs are unavoidably visible. Also, many of us, live our lives feeling very isolated and most of the time, very lost. It would probably - [Hydrocephalus: How seriously do you treat your “triggers”?](https://skyewaters.com/hydrocephalus-how-seriously-do-you-treat-your-triggers/) - Some "triggers" aren’t necessarily recognised as anything serious by the medical professionals we deal with. If this is the case, are we meant to ignore them too? Take for instance weather changes such as barometric pressure. Even as people with Hydrocephalus, it doesn’t affect all of us in the same way or even at all. - [Hydrocephalus : Patience while you wait...](https://skyewaters.com/hydrocephalus-patience-while-you-wait/) - It feels like waiting is one of the things you do a lot of with a condition like Hydrocephalus. Being a person with little to zero patience (I do try though), it can become quite “painful” at times. In saying that, the comparison cannot be drawn between just your average waiting for, “something in general” - [Hydrocephalus: Sharing the joys of upcoming brain surgery and a lightbulb moment.](https://skyewaters.com/hydrocephalus-sharing-the-joys-of-upcoming-brain-surgery-and-a-lightbulb-moment/) - A while back, I wrote a post titled, "When the thought of brain surgery "excites" you". It would probably seem like a strange thing to write about but the preconceived ideas of a title like this, at first sight, couldn't be further from the main reason behind it. Walter Little has literally gone most of - [Hydrocephalus: What does an angry brain look like..?](https://skyewaters.com/hydrocephalus-what-does-an-angry-brain-look-like/) - Being bounced around the system, regardless of where in the world it is, is no fun at all. I sometimes think that people assume if you look fine, you must be fine. Having Hydrocephalus has certainly made me feel this way, on one too many occasions, regardless of who the other party is. Some more disappointingly than - [Hydrocephalus: Figuring out the next move...](https://skyewaters.com/hydrocephalus-figuring-out-the-next-move/) - In my last post, I mentioned that I had something to be grateful for and realised since then, there's actually quite a few things, given my current situation. Firstly, I'm still breathing. That in itself is reason enough to be grateful. My job has kept my mind occupied and is a welcome distraction from all - [Hydrocephalus: Same shit, different country...](https://skyewaters.com/hydrocephalus-same-shit-different-country/) - There seems to be a universal law when it comes to the way we are treated as Hydrocephalus patients. (Or, I’m just being overly sensitive - you be the judge of that). I know for a fact that, what I’ve experienced below and so many times before, is not unique to me alone. There are - [Hydrocephalus: Category 1 triage - Not sure how I feel about that...](https://skyewaters.com/hydrocephalus-category-1-triage-not-sure-how-i-feel-about-that/) - A few weeks ago, I wrote about the visual disturbances I’ve been experiencing. Something, which at the time, freaked me out (naturally). I went to the eye clinic upon my GPs insistence and walked away with a clean bill of eye health. However, I was told a referral would be done to the Neurosurgery clinic - [Hydrocephalus: Do you ever downplay your condition? If you do, do you think it affects how others react or respond to you?](https://skyewaters.com/hydrocephalus-do-you-ever-downplay-your-condition-if-you-do-do-you-think-it-affects-how-others-react-or-respond-to-you/) - Some would say Hydrocephalus is not a big deal. I know quite a few people who have actually said this to me but, I also know quite a few who would claw your eyes out for uttering those words. (Ok, maybe not that extreme but they’d definitely take offence). Some people have their ignorance to - [Hydrocephalus: Do you ever wish you could just go back to before you knew you had Hydro?](https://skyewaters.com/hydrocephalus-do-you-ever-wish-you-could-just-go-back-to-before-you-knew-you-had-hydro/) - I know that there are many people who are born with Hydrocephalus so, this question doesn’t really apply in that instance. It’s more posed at people like me, diagnosed at age 29. I had learnt all the basic skills I needed by then, had no difficulties of note and went about my day and life - [Hydrocephalus: Eye trouble and the stress of not knowing...](https://skyewaters.com/hydrocephalus-eye-trouble-and-the-stress-of-not-knowing/) - When you go from care (practically non-existent) to doctors using words like: “You are high risk”, “This is serious”, “This is important to get checked out, sooner rather than later”, it leaves you feeling unsettled. The only way I can think to best describe it is, being abused - becoming accustomed to that way of - [Hydrocephalus: It scares the crap out of me](https://skyewaters.com/hydrocephalus-it-scares-the-crap-out-of-me/) - A few times now, I’ve had vision disturbances. Today was much like some of the other times. After initially freaking out, I reminded myself that it may just be a migraine starting. The Ophthalmologist I consulted with last year, helped me recognise the signs. But there’s no real migraine which follows. All I have, is - [Hydrocephalus : Finding support](https://skyewaters.com/hydrocephalus-finding-support/) - Once you, or a loved one, receives a diagnosis of Hydrocephalus, it's easy to get swept up in the whirlwind of emotions and lose track of life a bit. One thing I can almost guarantee is the support you will come to need, especially when you don't know which way next. We all have - [Hydrocephalus: Brain injury is hard to deal with, comprehend and explain to others.](https://skyewaters.com/hydrocephalus-brain-injury-is-hard-to-deal-with-comprehend-and-explain-to-others/) - Do you ever experience a sense of confusion, mixed with sadness, while talking about things you just can’t remember? I'm specifically talking about moments shared with family...or even close friends. Being close to family, after nearly 7 years, there are bound to be trips down memory lane. I’ve become more and more aware, of the - [Hydrocephalus : Let’s talk Incontinence...](https://skyewaters.com/hydrocephalus-lets-talk-incontinence/) - For anyone with Hydrocephalus, have you ever experienced incontinence as a by-product of your symptoms? Personally, I haven’t so can’t speak from experience. However, I have read somewhere that when you have a fair amount of pressure build-up, you tend to urinate often. Just how true this is, I haven’t a clue. Thinking out loud: - [Hydrocephalus: Are we our own worst enemies?](https://skyewaters.com/hydrocephalus-are-we-our-own-worst-enemies/) - How much do you stop yourself from partaking in a discussion or giving your opinion on something? In a work situation for example - Do you ever feel yourself withdrawing because you feel less confident? Because you feel that your opinion isn’t valid or maybe you struggle to make sense of the thoughts in your - [Hydrocephalus : What I wish you knew...](https://skyewaters.com/hydrocephalus-what-i-wish-you-knew/) - Just because I’ve had brain surgery does NOT mean I’m cured. There is NO cure - that’s the reality of the condition. If I have to face it then...it shouldn’t be too hard for you. And, just because I’ve accepted my reality, doesn’t mean I’m being negative. If anything, I’m being realistic in my approach. Not - [Hydrocephalus: The tides we face...](https://skyewaters.com/hydrocephalus-the-tides-we-face/) - Anyone who knows me, knows how much I love the ocean. A beach house, right next to or on the sand will be my wish come true. With that said, I don’t for one moment take for granted the powerful beauty it possesses. However, as much as I love the ocean and it’s beauty, I - [Hydrocephalus : How does a mother “take it easy”?](https://skyewaters.com/hydrocephalus-how-does-a-mother-take-it-easy/) - I’m a mother of 3, living with Hydrocephalus for the last 12 years, since diagnosis. For the most part, I’ve had a “good run” with the effects of the condition (well, as good as it gets, I suppose). Funny thing is, life didn’t exactly give way when it decided to thrust an incurable condition my - [Hydrocephalus: What’s your timeline look like?](https://skyewaters.com/hydrocephalus-whats-your-timeline-look-like/) - Why hasn’t it crossed my mind before? Only after my visit to the Neurosurgeon on Monday, did I think to build a timeline of “episodes”. Looking through all my blogs, I found a pattern and almost feel like I’ve been sounding like a broken record over the years. (Apologies to anyone who discovered this little - [Hydrocephalus: Never give up on yourself...](https://skyewaters.com/hydrocephalus-never-give-up-on-yourself/) - If there’s one thing I’ve come to learn the hard way in life, it’s to listen to your gut. No matter how many times life teaches me this lesson, I still fall prey, to learning the hard way. You know, that little voice that you hear but can’t quite place where it’s coming from or, - [Hydrocephalus : More than just a dream...](https://skyewaters.com/hydrocephalus-more-than-just-a-dream/) - Some time ago, I asked the question “Will there ever be a cure?” The general consensus was “Highly unlikely...”, not something anyone wants to hear (I for one, don't). But, being a realist, I could see why this response had a common trend. In short, there are too many causes of Hydro to produce one - [Hydrocephalus: How much do you “lie” to appease someone else’s response to the reality you face, of living with ill health?](https://skyewaters.com/hydrocephalus-how-much-do-you-lie-to-appease-someone-elses-response-to-the-reality-you-face-of-living-with-ill-health/) - “Hopefully by the end of this month all the medical drama will come to an end...” I uttered these words to a friend today and heard a little voice mocking me, saying: "Are you sure about that..?". Truth is, saying these words is like making a promise, you know you can’t keep. I’ve always had - [Hydrocephalus : When diagnostic tests show everything as “normal”...](https://skyewaters.com/hydrocephalus-when-diagnostic-tests-show-everything-as-normal/) - "Normal" . What the hell does that mean anyway..? Do you ever just get a tad cheesed off by results which show “normal”? When you feel all the discomfort which spurs you on to seek medical help, yet test results show "nothing is wrong". I think it’s a very fine line between knowing your condition - [Hydrocephalus: Rest In Peace Josh and Rise In Glory](https://skyewaters.com/hydrocephalus-rest-in-peace-josh-and-rise-in-glory/) - I’ve been known to get quite “emotional” about things, it’s in my DNA, something I accept, the older I get. It's what defines me... Aside from this, I carry my heart on my sleeve and feel the pain or joy of others. I think this must be why it’s so hard being Skyewaters sometimes. Hydro - [Hydrocephalus: Would you tell your child they have it..?](https://skyewaters.com/hydrocephalus-would-you-tell-your-child-they-have-it/) - Preparing yourself about all that Hydrocephalus encompasses, is probably the wisest thing you could do. I almost feel compelled to write this post today. To give you some perspective. I recently, had a chat with someone who told me about a young child (about 12 years old) whose parents never told her she has a - [Hydrocephalus : Ageing just one more "obstacle"...](https://skyewaters.com/hydrocephalus-ageing-just-one-more-obstacle/) - Obstacles are usually things you can overcome or navigate around...So, maybe saying "Ageing" is an obstacle, isn't entirely right. Meh! My 8-year-old daughter, constantly tells me “Mum you’re getting old”, as if to console me. This is usually in response to my reaction when I either forget stuff or complain about my insane loss of - [Hydrocephalus : Recovery in progress - Investigations ongoing...](https://skyewaters.com/hydrocephalus-recovery-in-progress-investigations-ongoing/) - Don’t you sometimes wish you could just hang a “Recovery mode in progress...investigations ongoing” (or similar), sign around or near you? Since starting my website, I’ve tried to do a blog post at least once a week, sometimes more because I’m passionate about creating awareness on this condition. But, I haven’t been feeling well for - [Hydrocephalus: Process of elimination is backward, with treatment failure (Shunt/ETV), being first...](https://skyewaters.com/5019-2/) - Feeling ill could be caused by anything, I know that... I’d be lying if I said, at the first sign of a headache, I don’t get my back up against a wall. Even being overcome with nausea and loss of appetite has me wondering if it’s the start of "something". Prolonged sleeping episodes are also probably - [Ventriculo-ureteral shunt - Have you ever heard of this before..?](https://skyewaters.com/ventriculo-ureteral-shunt-have-you-ever-heard-of-this-before/) - When I said before that there’s never a dull moment with this condition, I should have added that “There’s always something new to learn about, that you haven’t heard of before”. My family and I have recently moved to Brisbane, Australia. A new job, family and the hope of “better” healthcare are just a few - [Hydrocephalus : The effects run deeper than just physical pain...](https://skyewaters.com/hydrocephalus-the-effects-run-deeper-than-just-physical-pain/) - It’s been 9 years since I last had brain surgery, excluding the ICP monitoring I had a few months back. I feel fortunate, for lack of a better word, compared to others who endure more harrowing times. The moments in-between where I questioned and wondered if what I was feeling was ETV failure or not, - [Hydrocephalus: When your family relies on you for...(just about) everything](https://skyewaters.com/hydrocephalus-when-your-family-relies-on-you-for-just-about-everything/) - I have no doubt there are many of us, who are relied upon by our families, to be the one who holds it all together. I especially know this is highly likely if you weren’t born with Hydrocephalus (though not limited to) but, diagnosed later in life, like me. In my own family unit (myself, - [Hydrocephalus : Are you ever hesitant to start over?](https://skyewaters.com/hydrocephalus-are-you-ever-hesitant-to-start-over/) - There are so many situations we are presented with in life, where we need to start over. Some situations we shy away from and tell ourselves “Its not worth it” and, I guess (given the circumstances at the time), we’d be right. Some situations, however, require us to start over regardless of what we feel, - [Hydrocephalus: Do you have a Hydro buddy?](https://skyewaters.com/hydrocephalus-do-you-have-a-hydro-buddy/) - I often think back on what I’ve been through and how far I’ve come since I was first diagnosed a few years ago. What life was like before, escapes me a bit though, simply because there are parts I just don't remember. I do, however, remember how it felt seeing the word Hydrocephalus as my - [Hydrocephalus: Some food for thought...](https://skyewaters.com/hydrocephalus-some-food-for-thought/) - I can be angry that life dealt me the Hydro card. I can curse everything under, around or above the sun...but, it won’t make a difference. 29 years old and living a reasonably sheltered life (as far as this condition goes), that’s the reality I faced before I read the words “Mild Hydrocephalus” on a - [Hydrocephalus: Never underestimate this condition](https://skyewaters.com/hydrocephalus-never-underestimate-this-condition/) - When it comes to Hydrocephalus, I don’t underestimate anything, especially not what I’d do for myself. Not everyone will agree with the way you handle this condition, not everyone will understand your motivations or your disappointments. Truth be told, for some of us, this condition is less of a nightmare than others. Though we understand - [Hydrocephalus: Some conversations aren’t worth having...](https://skyewaters.com/hydrocephalus-some-conversations-arent-worth-having/) - Is it really worth having a conversation with someone who doesn’t understand what Hydrocephalus is all about? (I’m not talking about Awareness or education because that will always be worth it). Someone who doesn’t get that this is a serious condition, requiring immediate action, in some cases? Someone who doesn’t get your fears, anxieties and - [Hydrocephalus : Do you limit yourself when it comes to learning?](https://skyewaters.com/hydrocephalus-do-you-limit-yourself-when-it-comes-to-learning/) - Fear...a driver for most (negative) things in life. It’s certainly blocked me from doing a few things. In fact, had it not been for fear, I now know that nothing (physically) would have happened to me. But, I stopped myself before I could reach that point. When I started realising that my short-term memory was - [Hydrocephalus: The memories we retain (or forget) aren’t by choice...](https://skyewaters.com/hydrocephalus-the-memories-we-retain-or-forget-arent-by-choice/) - With memory issues being a challenge on any given day, a side effect of Hydrocephalus and the subsequent brain surgeries, it’s a pity we don’t get to choose which ones we retain or forget. (Don’t get me wrong, ageing definitely plays a part in it too but remember, this condition affects people of different ages. - [Hydrocephalus: The noisy upstairs neighbour...](https://skyewaters.com/hydrocephalus-the-noisy-upstairs-neighbour/) - A few years ago, my family and I made the mistake of moving into a two storey house with another family. (I don’t recommend this to anyone unless you have what it takes. It’s the kind of situation that can make enemies out of friends and split families apart - like borrowing money). The house - [Hydrocephalus : Some of us don’t realise how lucky we really are...](https://skyewaters.com/hydrocephalus-some-of-us-dont-realise-how-lucky-we-really-are/) - How many brain surgeries have you had due to Hydrocephalus? Some have had a few (2..maybe even 1) others, too many to mention. Personally, I would never dream of telling the next person that they’re lying when they say they’ve had in excess of 100 brain operations. As unbelievable as it may sound, I can - [Hydrocephalus Awareness is everyone’s responsibility](https://skyewaters.com/hydrocephalus-awareness-is-everyones-responsibility/) - Someone you love or, even you yourself, has Hydrocephalus. Or, you may have heard of the girl down the street’s cousin who has it. It really doesn’t matter. The effects of this condition, as well as the Awareness and Advocacy thereof, lies with all of us. We do it for ourselves, we do it for - [Hydrocephalus: Help me to help you...](https://skyewaters.com/hydrocephalus-help-me-to-help-you/) - This post is for all those living with and, supporting someone, diagnosed with Hydrocephalus. First off, I would like to acknowledge: The fact that you’re in this alongside your Hydro warrior is admirable. Not everyone is made to withstand the challenges life throws our way especially an Invisible illness like this. There are no warning - [Hydrocephalus: When you hear but don't listen...](https://skyewaters.com/hydrocephalus-when-you-hear-but-dont-listen/) - 2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience: A nurse who looked at me surprisedly when I told her I have Hydrocephalus and uttered the words "But you - [Hydrocephalus: What’s the reason why doctors “refuse” to help patients?](https://skyewaters.com/hydrocephalus-whats-the-reason-why-doctors-refuse-to-help-patients/) - I remember a time when things were so simple, medically speaking. You felt unwell, went to the doctor and they actually helped you. Illnesses like Cancer, which everyone knows has a slim chance of survival, depending on the stage it's at (but it’s possible), were/are accepted for the fatal nature of the disease. Doctors aren’t - [Hydrocephalus: The pressure test](https://skyewaters.com/hydrocephalus-the-pressure-test/) - ICP (Intracranial Pressure) Monitoring, something I’ve heard about before, seen other Hydro warriors go through but, hadn’t experienced for myself until last week. I went through the normal motions and feelings before surgery. Knowing that a piece of fibre optic transducer sensor would be going through my brain and resting inside one of the ventricles, - [Hydrocephalus: What is the right frame of mind?](https://skyewaters.com/hydrocephalus-what-is-the-right-frame-of-mind/) - This question pertains just as much to someone who has recently been diagnosed with Hydrocephalus as it does to someone facing brain surgery, which is never easy. For me personally, it doesn’t matter that people say one procedure is “not as bad” as the next, it doesn't stop me going on the rollercoaster ride once - [Hydrocephalus: When the thought of brain surgery “excites” you](https://skyewaters.com/hydrocephalus-when-the-thought-of-brain-surgery-excites-you/) - You’re probably wondering if I've completely lost my mind or how I can say that, well that’s because it’s only one of the emotions I feel right now - along with fear and anxiety. It may not be an ETV or Shunt surgery but it’s brain surgery nonetheless. The procedure I’ll be having is called - [Sometimes all you need is 1 person](https://skyewaters.com/sometimes-all-you-need-is-1-person/) - Having Hydrocephalus has certainly taught me some valuable life lessons. Some...more obvious than others. The last few weeks have felt like an unnervingly familiar road which I walked a few years back. History repeating itself, with doctors who outright refuse to help me BUT there’s 1 (FINALLY! - it only took 5 years) who will - [Do you have a backup plan?](https://skyewaters.com/do-you-have-a-backup-plan/) - My experiences over the last while have certainly not been unique to me (Confirmed by the comments and messages I've received). This past week, I have had various reactions consisting of outbursts and crying when I'm alone because of sheer helplessness and more. I regrouped and put my thinking cap on because a situation like - [The “protocol” ED is missing when it comes to Hydrocephalus](https://skyewaters.com/the-protocol-ed-is-missing-when-it-comes-to-hydrocephalus/) - Just an update, since my last post, with me ending up at the ED, despite my internal protests and reservations that nothing would be done...(I always give a situation the benefit of the doubt). But alas... There were a few things that stood out for me this weekend: Calling to find out if someone from Neurology - [Time...How a day can seem like an eternity](https://skyewaters.com/time-how-a-day-can-seem-like-an-eternity/) - Four days ago I was “fine” and now, each day closer to the next feels like an eternity as I will time to pass quicker. Time, something which feels like a luxury, a priceless possession I wish I had more control of, with a dash of patience. I’m at a crossroad (again), one no doubt - [Hydrocephalus, the condition that will make you work for it...](https://skyewaters.com/hydrocephalus-the-condition-that-will-make-you-work-for-it/) - It’s not enough that you or your loved one has been diagnosed with this condition, at least that’s the way I see it, from “life’s” point of view. ("Life" being whatever it is that controls all the "bad" that people endure). It’s not necessarily a death sentence but it very well could be (others have - ["A little Angel just got (their) wings"](https://skyewaters.com/a-little-angel-just-got-their-wings/) - A child dying will grab anyone’s attention, no matter the circumstances. It’s not to say that adults are less important but there’s just a definitive difference. In the Hydro community I know it affects each and every one of us, without a doubt. I find that it affects me (personally) in more ways than one. - [Hydrocephalus: Have you become complacent?](https://skyewaters.com/hydrocephalus-have-you-become-complacent/) - When you live with a condition like Hydrocephalus and, have the challenges that come with it, it’s easy to reach a level of complacency. However, the kind of challenges I’m talking about don’t include the physical but more the medical care (specifically the lack thereof). So many of us (thankfully) have excellent doctors to whom - [People with Hydrocephalus look no different to you...](https://skyewaters.com/people-with-hydrocephalus-look-no-different-to-you/) - We walk among you, have hopes, dreams and fears. We are employees, parents, children, students, adults, senior citizens and more. Anyone at any age can receive their diagnosis - we are not all born with it. But, those who are, experience their first brain surgery hours, even days, after taking their first breath. Likewise, head - [Who's with me..?](https://skyewaters.com/whos-with-me/) - Something has got to be said for surviving a milestone with this condition. However, it’s not just about surviving another week, month or year without surgery because that in itself is a priceless gift (any Hydro Warrior would understand and acknowledge it). I for one, have literally survived... Without that added extra...Medical care. Fighting against - [Stronger now than I was going in...](https://skyewaters.com/stronger-now-than-i-was-going-in/) - I find this line applicable to so many areas of my life. Experience truly does come with time (and age). No matter how much someone forewarns you or tells you about the possible outcomes for any given situation, we all learn from experience. It’ll be a positive or (in most cases) a negative outcome, that - [Do you ever suffer from depression? There's more to it than you think...](https://skyewaters.com/do-you-ever-suffer-from-depression-theres-more-to-it-than-you-think/) - A question asked so often, it seems, by doctors. Is this a standard question? Maybe I’m missing something... It’s definitely one that, once asked, gets my back up. Inside, I cringe in anticipation...I take momentary offence and at some stage feel wounded with the knowledge of having been here before. A De Ja Vu moment of - [Hydrocephalus: Would you abort?](https://skyewaters.com/hydrocephalus-would-you-abort/) - This is a sensitive issue for any prospective parent. We have advanced so much that some conditions can be identified while your baby is still in the womb. I remember when I was pregnant with my first child, the gynaecologist explained that we could have a test done to see if our baby had Down - [Have you ever been told not to dwell on the past?](https://skyewaters.com/have-you-ever-been-told-not-to-dwell-on-the-past/) - I wonder how this fits into the equation of dealing with issues from the past for mental healing. I get that there's nothing you can do about what happened in the past...it's self-explanatory. But, how should one deal with anything negative, torturous or heartbreaking, etc. to move on, without reliving or more specifically revisiting the - [Angels in the operating room...](https://skyewaters.com/angels-in-the-operating-room/) - This post is a bit of a tricky one for me to write about. Only because, I'm not too sure what to cover off but hopefully there's something in it for everyone. Last Friday, I had my Hysterectomy, something I'd been waiting for a little over 7 months on the public system. The months leading - [Hydrocephalus : I reckon these doctors need an intervention!](https://skyewaters.com/hydrocephalus-i-reckon-these-doctors-need-an-intervention/) - I've spoken before about the concerning aspect of the medical professionals, who treat Hydrocephalus patients, who are not on the same page. There are just too many people walking around without proper aftercare or dealing with medical staff who are uneducated in terms of Hydrocephalus. I myself am one of these people and am also - [Hydrocephalus : When people's comments cut like a knife](https://skyewaters.com/hydrocephalus-when-peoples-comments-cut-like-a-knife/) - How nice it must be when you don't have to worry about illness. When you don't need more than one type of medication to treat some disease, condition or symptom. Extremely nice to not have to worry about surgery being your only option for certain things. Or my all time favourite, not to have to - [Does having brain surgery make you "awesome"?](https://skyewaters.com/does-having-brain-surgery-make-you-awesome/) - "You're awesome", a response by someone whom I had told of my having had brain surgery. I was busy explaining to her about my short term memory loss as part of an apology in my forgetting our appointment. (I truly felt bad and beat up on myself, as I do, because I forgot and simply - [Hydrocephalus: Being around people who understand the language you're speaking](https://skyewaters.com/hydrocephalus-being-around-people-who-understand-the-language-youre-speaking/) - As a person living with Hydrocephalus, be it yourself or someone close to you affected by this condition, it's easy enough to understand the medical terminology. Well, at least better than anyone who is just an "acquaintance" of this condition. I remember when I was first diagnosed and heard the word Hydrocephalus. It was a - [It's fear that drives me...](https://skyewaters.com/its-fear-that-drives-me/) - Maybe that makes me sound weak...maybe it makes me seem like the biggest wuss...who knows? I've thought about why it is that every time I get a diagnosis (with the words life-threatening at the end of it), it gets me running around in a mental panic. I realise that amidst all of it, I probably - [Hydrocephalus : The pre-existing condition you wish you never had](https://skyewaters.com/hydrocephalus-the-pre-existing-condition-you-wish-you-never-had/) - Medical insurance/aid...a necessity or a nice to have? You decide... Most people I speak to nowadays, seem so blasé about their healthcare, a feeling I drool over for a split second. They seem relaxed while spewing out things like "We have a free ambulance service" or "Our public health system will take care of me". - [Hydrocephalus : What's your 2018 going to be like?](https://skyewaters.com/hydrocephalus-whats-your-2018-going-to-be-like/) - With every new year comes a wave of resolutions. We set out goals which, we hope to achieve or attain. Some we succeed at, some fail as soon as they begin and others...well, let's just say we manage to take detours that sometimes leave us pondering. This new year, I've decided that I won't expect - [Hydrocephalus the Elephant](https://skyewaters.com/hydrocephalus-the-elephant/) - Hydrocephalus has become...the elephant inside my head the room. The thing we never talk about, the thing people around me know exists but pretend is not there. The thing that, despite my trying to do the same as those around me (when in Rome, do as the Romans do), I've failed miserably to push aside, time - [Brain surgery equates brain injury IMO](https://skyewaters.com/brain-surgery-equates-brain-injury-imo/) - Anything which harms or penetrates the physical matter inside your head would constitute as a cause of brain injury. It can be caused by blunt force trauma to the head, something which doesn’t physically touch the brain itself but a blow to the head, hard enough to cause damage. Or, it can be an act - [What have you lost through brain surgery..?](https://skyewaters.com/what-have-you-lost-through-brain-surgery/) - Surgery, especially brain surgery, has always left me feeling extreme depression afterwards. It's not something I can pinpoint (when trying to find a reason for the way I'm feeling) or even recognise when it hits me at first. I've often wondered if the anaesthetic has something to do with it... In my mind, I’ve only - [Hydrocephalus: Will there ever be a cure?](https://skyewaters.com/hydrocephalus-will-there-ever-be-a-cure/) - The number of people undergoing shunt surgery over the last while seems to be on the increase. Maybe I see this because of the number of friend requests and follows I’ve received on Facebook as Skyewaters, who knows. You know what it’s like when you buy a new car, for example. The minute you get - [When life becomes bigger than you...](https://skyewaters.com/when-life-becomes-bigger-than-you/) - I used to pray that I could win the lottery or that I was born into a family with wealth (probably no more than the next person). Somehow, money seems to be the answer to all our (man's) problems, especially when we deem life to be "not quite going my way". Sometimes when I think - [Do you ever find yourself in this situation..?](https://skyewaters.com/4272-2/) - It seriously pisses me off! Sorry for my language but I’m feeling so frustrated not only right now, but for all the other times before. And, all the times I know are still to come. I’ve explained on so many occasions that I’m not good with directions and having short-term memory issues, on top of - [Don’t listen to statistics because...you’re not one](https://skyewaters.com/dont-listen-to-statistics-because-youre-not-one/) - I’ve written quite a few posts about having Hydrocephalus signs and symptoms outside the norm. It really gets to me that if a patient doesn’t fit the statistical norm, then doctors simply switch off. Admittedly, saying this, I know is a generalized statement (it applies to other health issues and things in life too) and - [Migraines...evil twin or camouflage for Hydrocephalus?](https://skyewaters.com/migraines-evil-twin-or-camouflage-for-hydrocephalus/) - Do you ever find yourself caught between not knowing if the pain in your head is just a headache, a migraine or the horrible beast, which is Hydrocephalus? I think it's fairly easy to distinguish between just a normal headache and something more severe. There's almost a point of escalation you reach, where the pain just - [I’m a member of the Hydrocephalus family...Never Alone](https://skyewaters.com/im-a-member-of-the-hydrocephalus-family-never-alone/) - Family. What defines it? Because of all the support groups for Hydrocephalus, I belong to and through my blog, I incorporated the phrase at the top of today’s post in my Hydro Logo. Nothing brings it home more just how big and affected this family is when one of our own succumbs to the condition. - [So how does it happen? A shunt breaking inside your brain, that is...](https://skyewaters.com/so-how-does-it-happen-a-shunt-breaking-inside-your-brain-that-is/) - I honestly don't have the answer to this question...all I know is, that it has and can happen. If I thought this condition was scary before, I’m definitely on a different page today. Travis Shumate was a fellow Hydro warrior who unfortunately had this happen to his shunt. It was too close to his brain - [Shunts & shunt malfunctions](https://skyewaters.com/shunts-shunt-malfunctions/) - What if the only way to save your life, was by inserting a thin piece of tubing into your brain and leading it to another part of your body? How would you feel about that? I get shivers every time I think about how they actually get this contraption into a human being. But, there - [Do we depend on doctors too much?](https://skyewaters.com/do-we-depend-on-doctors-too-much/) - This is a bit of a tough one for me and admittedly a double-edged sword. I tend to want to see the good in someone regardless of the wrong they do (within reason). More so, I remind myself to give people the benefit of the doubt, should the situation require it. With that said, it’s - ["There must be a reason...you know, a reason why you're alive..."](https://skyewaters.com/there-must-be-a-reason-you-know-a-reason-why-youre-alive/) - I didn't expect a wave of emotion to come over me just by someone else uttering those words to me. She was sincere in her questioning, compassionate in her approach and tender in her responses - the Sonographer who performed a pelvic and abdominal scan on me today. Why I was there...is not of importance - [Diagnosis with...no clear direction, guidance or full disclosure](https://skyewaters.com/diagnosis-with-no-clear-direction-guidance-or-full-disclosure/) - How many of you received your or your loved one's Hydrocephalus diagnosis ticking one, all or more than one of the boxes above? When I was diagnosed, age 29, the word Hydrocephalus was entirely new to me. To say it was foreign, would probably be an understatement. I went through that time, receiving my diagnosis - [“The real core of being a survivor is continuing to survive”](https://skyewaters.com/the-real-core-of-being-a-survivor-is-continuing-to-survive/) - Life doesn’t always afford us the choice of whether or not we’ll survive what it throws at us. Be it a challenge at work, life in general, family matters, ill health, etc. Some of us have a little more on our plates to deal with than others which is why some people who cross your - [Hydrocephalus : Do you think that your condition has consumed you?](https://skyewaters.com/hydrocephalus-do-you-think-that-your-condition-has-consumed-you/) - I mean all consuming...thought, word and deed? In all honesty, if I had to answer that for myself, I would have to give it a BIG YES!. There are days when I tell myself just to let it all be and carry on as if nothing is wrong. This would actually be easy enough to - [We are not meant to live forever](https://skyewaters.com/we-are-not-meant-to-live-forever/) - There's something I've always read and seen but never fully paid attention to. When we die, we leave this world just as we came into it, with nothing. All our possessions and wealth, no matter how big or small will be left behind. As a human race, we seem to be constantly wanting more wealth, - [Hydrocephalus : There's no such thing as a dumb question](https://skyewaters.com/hydrocephalus-theres-no-such-thing-as-a-dumb-question/) - There are times when I go through some of the various posts on Facebook and can't help but feel my tummy flip or cringe at what some people say to others. This happens on various posts and it doesn't necessarily have to be only in the Hydro groups. But, I'm writing this today with those - [Hydrocephalus : Being pregnant and having brain surgery](https://skyewaters.com/hydrocephalus-being-pregnant-and-having-brain-surgery/) - When I was diagnosed with Hydrocephalus, my husband and I had a pre-op consult with the surgeon, who discussed my upcoming shunt surgery. We talked about what to expect before, during and after the operation. More importantly, we told him that we were planning on having another baby and questioned whether this would be a - ["What we can do?"](https://skyewaters.com/what-we-can-do/) - Yes, you read that right. My colleague and friend, Gaurav Sharma, utters these words on a regular basis. We'd catch the train together some mornings and "complain" about work or a particular situation (As one does from time to time). After getting it all out, he would usually end the conversation with a shrug of - [Hydrocephalus : Is there really better care in the world...](https://skyewaters.com/hydrocephalus-is-there-really-better-care-in-the-world/) - I used to think that there must be better health care in the world, especially in places overseas (which could literally be anywhere depending on where you live). In fact, I moved countries specifically because people professed this view and seemed convinced beyond a doubt that better medical care existed outside the borders of my - [Hydrocephalus : Having an MRI is a stressful thing](https://skyewaters.com/hydrocephalus-having-an-mri-is-a-stressful-thing/) - There are so many things going through my mind, all at once...I feel anxious, scared and yet prepared for the worst. I'm in combat mode in case I get an answer to my prayer that "something is wrong". Yes, my prayer...It's the one thing I've been praying for ever since the surgeon told me he - [Hydrocephalus : When my analytical brain kicks in...](https://skyewaters.com/hydrocephalus-when-my-analytical-brain-kicks-in/) - I finally had my series of MRI scans last week. I will share it here with you So...it appears that everything is still the same...with the exception of one thing. The NSs plan of action is to "maybe do a lumbar puncture but" he "remains reluctant to operate". Here's the context though and where I - [Hydrocephalus : What happened to the oath doctors take to help their patients?](https://skyewaters.com/hydrocephalus-what-happened-to-the-oath-doctors-take-to-help-their-patients/) - The cost of medical care as mentioned in a previous post is just ridiculous. I'm not going to talk this point to death but I do feel that there is room for discussion. At my last consult, after being told off, I sort of lost track of the conversation as I licked my internal wound, while - [Selective Mutism (SM) : The start of a journey](https://skyewaters.com/selective-mutism-sm-the-start-of-a-journey/) - There are so many conditions, disorders, diseases, etc in the world affecting people around us. Most of these we have or will never come into contact with simply because those closest to us remain unaffected...life carries on in this case. However, Selective Mutism is something which has entered my life and just how I deal - [Hydrocephalus : Have you ever felt like you just want to walk away from something, not giving up but just walking away?](https://skyewaters.com/hydrocephalus-have-you-ever-felt-like-you-just-want-to-walk-away-from-something-not-giving-up-but-just-walking-away/) - This is how I feel right now. I had a follow-up consult today with the NS who ordered my recent MRI. And, unlike our last consult, we both remained calm and open to suggestions of a way forward. I was thankful for this...briefly. The bottom-line of it all is: He still doesn't feel that my - [Selective Mutism : Different from the start](https://skyewaters.com/selective-mutism-different-from-the-start/) - I am a mother of 3, 2 boys (15 and 12) and a daughter (age 6) who has Selective Mutism also known as SM. I hadn't heard of this before, had no clue about it but have recently decided to start blogging about our journey. It's a topic which needs attention and the frustration and helplessness - [Hydrocephalus : Feeling like a tangled mess inside](https://skyewaters.com/hydrocephalus-feeling-like-a-tangled-mess-inside/) - There are days when I really love my job but days like today, I feel like a complete waste of space. I know others appreciate what I do and I love nothing better than to alleviate the little stresses in my colleagues daily work life. In fact, I get satisfaction from knowing that doing a - [Selective Mutism : Connecting the dots](https://skyewaters.com/selective-mutism-connecting-the-dots/) - First big change In time, we made plans to emigrate and ended up leaving South Africa in February 2012, Kathryn was 22 months old. She had her 2nd birthday in New Zealand and stayed home with my husband who looked after her for the first few months of us getting settled. When my husband found a - [Hydrocephalus : When close family don't give a shit](https://skyewaters.com/hydrocephalus-when-close-family-dont-give-a-shit/) - A defining and disappointing aspect of having Hydrocephalus is when those closest to you disregard the effects of the condition. I wonder if there comes a time when family members in the same household possibly just reach a point where they've had enough. Enough of your moaning, complaining of how bad your headaches are (especially - [Happy Thanksgiving...](https://skyewaters.com/happy-thanksgiving/) - Yesterday Facebook notified me of Thanksgiving. I personally have never celebrated it but when I saw it with the suggestion to wish people on my Friends list...I thought "Why not?". It doesn't matter whether or not I celebrate a special day to be thankful. What matters is what it signified for me. It made me - [Selective Mutism : When the vulnerable don't fend for themselves...](https://skyewaters.com/selective-mutism-when-the-vulnerable-dont-fend-for-themselves/) - Kindy (Daycare) had become more enjoyable for Kathryn and I think this was because she now had friends. She is always selective in who she makes friends with. She's never been part of a group of friends but gravitates more towards one or two. She was able to "communicate" with her teachers via her friends - [When your body requires you to rest...](https://skyewaters.com/when-your-body-requires-you-to-rest/) - I’m not the kind of person who likes being told what to do. In fact, the more independent and self-sufficient I am, the better. My family know, despite their protests or advice when it comes to the way something needs to be done, I’ll still do what and how I want to. I’m stubborn like - [Happy Mothers Day](https://skyewaters.com/happy-mothers-day/) - Mothers day brings with it so many thoughts. Mostly there's a feeling of thankfulness and appreciation. Last year I focussed on mothers of Hydro babies who go above and beyond the calling. This year, I turn the focus inward in the hope that I am not alone in any of it. I am by no - [What would you rather have...Brain tumour or Hydrocephalus?](https://skyewaters.com/what-would-you-rather-have-brain-tumour-or-hydrocephalus/) - I had a chat with an acquaintance of mine not too long ago. We have one thing in common, but for different reasons, we've both had brain surgery. Therefore, it would set us apart from the rest of the "normal" people around us. We both don’t handle noise very well and therefore dislike an open - [Hydrocephalus: Yeah...I'm talking to you!](https://skyewaters.com/hydrocephalus-yeah-im-talking-to-you/) - Wherever I was in my life when you appeared (like a phantom) on the scene, doesn’t even matter anymore. Whatever was going on, whatever I regarded as important at the time...overtaken by the enormity of you. You threw me for a loop and left me spinning aimlessly, wandering on the playing fields of this thing - [Invisible illness vs looking for attention](https://skyewaters.com/invisible-illness-vs-looking-for-attention/) - This post is closely related to one of my previous Hydrocephalus posts, We are not faking... My teenage son made a comment yesterday and said to me. "Why do you post stuff like that on Facebook? It looks like you're...looking for attention". (To put it into perspective for you, there's one real difference between us - - [Thank you Vincent Barker](https://skyewaters.com/thank-you-vincent-barker/) - The story and death of 8-year old Vincent Barker, even though it's a few years old, has left me with a sadness for this little boy and his family. I've always had a lingering thought, "I hear about how dangerous Hydrocephalus is if left untreated but just how dangerous is it really?". I know this is - [When doctors develop a God-like complex](https://skyewaters.com/when-doctors-develop-a-god-like-complex/) - I had a consultation with a specialist earlier this week, not Hydrocephalus-related, who uttered the words "When doctors develop a God-like complex". These words struck me a bit and got my mind wandering. The consultation itself was one, which left my mind reeling as now I'm facing surgery...yet again. The thought of being in pain - [Change of discipline in schools](https://skyewaters.com/change-of-discipline-in-schools/) - Having a chat with my 6-year-old daughter in the car one morning, on our way to school, she asked "Hey mum! What was your school like?" This question had me delve into a childhood memory, which I had long since forgotten about. Our classrooms weren't as brightly coloured and filled with fun things to do as hers. - [Facing brain surgery and how you can provide comfort and support for the patient](https://skyewaters.com/facing-brain-surgery-and-how-you-can-provide-comfort-and-support-for-the-patient/) - When I was facing surgery for the first time, I was overcome with mixed emotions. These lasted a few days from the time the surgeon told me that he would need to operate until the night before I had to go to the hospital. The days leading up to the night before were the worst - [Hydrocephalus: "Mind over Matter"](https://skyewaters.com/hydrocephalus-mind-over-matter/) - There's a little well-known phrase I've come to adopt of late, "Mind over matter". My late grandfather used this quite a bit when he was still alive. He died from lung cancer about 8 months after diagnosis. The day he died, I was at his bedside but didn't realise what was happening at the time, - [September is Hydrocephalus Awareness month - help spread the word...](https://skyewaters.com/september-is-hydrocephalus-awareness-month-help-spread-the-word/) - In exactly 2 weeks time, it will be the 1st of September (where has the year gone?). As most people in the Hydrocephalus community know, September is Hydrocephalus Awareness Month. In aid of this, I will be dropping the price of my eBook Hydrocephalus: Floating Faithfully to $1.99, for the month of September, and donating - [Why let work make you anxious?](https://skyewaters.com/why-let-work-make-you-anxious/) - How often don't we let work stress us out? Is it really worth it? I'm sure, just like me, you've been there too. Getting all worked up because of something someone at work didn't do or, because of the decisions management make that affect you negatively. Maybe you're a person like me who prides yourself - [Hydrocephalus: "Oh, trust me...Everyones memory is bad from time to time"](https://skyewaters.com/hydrocephalus-oh-trust-me-everyones-memory-is-bad-from-time-to-time/) - As many people with Hydrocephalus will know, there are a few little words that when uttered, evokes an "ill" feeling. When you try and dumb down Hydrocephalus for someone else who doesn't have the condition or know about it, somewhere along the conversation, you will hear the words "Oh, I also get terrible migraines". Anyone - [Am I depressed?](https://skyewaters.com/am-i-depressed/) - A few weeks ago, I had a mental and spiritual outburst/breakdown. I've always been one to say things like "God is in control. Have faith and trust. See obstacles as challenges but don't give in and just believe". There is no end to the advice I would offer to anyone who seemingly has lost faith - [Hydrocephalus: Are you waiting for the other shoe to drop?](https://skyewaters.com/hydrocephalus-are-you-waiting-for-the-other-shoe-to-drop/) - Yesterday morning, a "weird" nagging feeling at the bottom of my head woke me from my sleep. Immediately opening my eyes, the first thought that struck my mind was "What the heck is that?". A nanosecond later, I wondered if it was my ETV, especially since I pictured the location of the spot to be at the - [The disconnect in Child and Adult Hydrocephalus care](https://skyewaters.com/the-disconnect-in-child-and-adult-hydrocephalus-care/) - Being an adult, diagnosed at the age of 29 with Hydrocephalus, I don't know what it's like to receive medical care for this condition from birth. However, when I read about other's who have been on the other side of my spectrum, it makes me wonder if there's a possible disconnect in the care we - [Hydrocephalus : Where do you find help for your child in the education system?](https://skyewaters.com/hydrocephalus-where-do-you-find-help-for-your-child-in-the-education-system/) - Any parent of a child with Hydrocephalus knows that the condition renders certain challenges and difficulties (Saying that feels like an understatement). It's a journey of discovery with many unknowns and scary pathways. No one person with Hydrocephalus is the same as the next, despite having the same condition. We are different but we can relate - [Hydrocephalus : A world filled with "Could it be..?" or "What if it's..?"](https://skyewaters.com/hydrocephalus-a-world-filled-with-could-it-be-or-what-if-its/) - There's something that gets me each time...the realization that my world is filled with "Could it be..?" or "What if it's..?" When I got my diagnosis of Hydrocephalus and subsequent shunt placement, these questions were probably the most commonly asked. If I felt anything out of the ordinary, the first thing I suspected was my - [Hydrocephalus : This s**t is real!](https://skyewaters.com/hydrocephalus-this-st-is-real/) - ***I wrote this post and intended to publish it before my last one. But, I never got around to it because of what happened.*** I've been trying to go days, weeks even where I just forget I have Hydrocephalus. I thought I was doing well but there's a little card in my phone pouch that reminds - [Hydrocephalus : Have you ever been told you don't have it?](https://skyewaters.com/hydrocephalus-have-you-ever-been-told-you-dont-have-it/) - Have you ever been told that you don't have Hydrocephalus after another doctor told you that you do, only to get told by the next one that you, in fact, do have it? Or, that your headaches are caused by an overuse of analgesics? Or, that it's caused by stress or life changes you might - [Hydrocephalus : The financial burden](https://skyewaters.com/hydrocephalus-the-financial-burden/) - As if having Hydrocephalus is not stressful enough, due to its unpredictable nature and challenges, there's something else associated with it that can literally give you a headache...the financial burden that goes along with it. The diagnostic tests that need to be done to ascertain if there is a problem, cost an arm and a leg. - [Another Monday morning hangover](https://skyewaters.com/another-monday-morning-hangover/) - I woke up on Sunday, to a throbbing in my head, the kind you feel before you even open your eyes. This was familiar to me like a long lost memory - a bad one at that. At the first sign of it, I could feel my stress and anxiety levels rising because I knew - [Having a shaved head bothered me](https://skyewaters.com/having-a-shaved-head-bothered-me/) - It seems a trivial thing to be concerned about but, when I came out of surgery (1st OP) and returned to all my senses the following morning, there was one thing that bothered me. Feeling the bandage around my head and seeing how other people in the ward stared at me, made me feel very - [Just keeping you updated](https://skyewaters.com/just-keeping-you-updated/) - A few weeks ago, I introduced and opened the doors to Skyewaters.com. However, along with the unknown of this blogging/website territory, comes a few errors and lessons learnt along the way. I realised that my followers from Skyewater33 (my previous site) had not actually followed me as magically as I would have liked. (This has now been - [Medical Alert Card](https://skyewaters.com/medical-alert-card/) - Do you have an alert card? Something which identifies your condition in an emergency situation. I've been searching endlessly for one standard, something that will "speak" for me when or if I can't. Trying to find something specific to ETV has been a fruitless exercise (Though this card can apply to both ETVs and Shunts. - [It's a matter of trust...](https://skyewaters.com/its-a-matter-of-trust/) - There's a certain level of trust I need before I (literally) let someone mess with my head. Some of the surgeons I've consulted with since diagnosis have definitely contributed to the realization of this. When I was diagnosed in 2007, I never knew the surgeon who operated on me upon meeting him for the first - [Has Hydrocephalus affected your relationships?](https://skyewaters.com/has-hydrocephalus-affected-your-relationships/) - I've been wondering about adults living with Hydrocephalus. Specifically about how Hydro affects your relationships... Has it been a deal breaker (as Dr Phil would say)? Has it added stress or strain and has it even managed to break you apart? I ask because I think about how it affects my own relationship. My husband - [A view of the scar on my soul](https://skyewaters.com/a-view-of-the-scar-on-my-soul/) - Today is a special day for me, it's my birthday! I love birthdays, I love the attention but absolutely cringe because of it too...confusing, right? I enjoy making other people feel special, I enjoy making a big fuss about everyone else - especially on their birthday. Yet, when it comes to me, I simply don't - [How I cope is much the same as being like a duck](https://skyewaters.com/how-i-cope-is-much-the-same-as-being-like-a-duck/) - In my book Hydrocephalus floating faithfully, I speak about a time where I had a defining moment. It was just after having my first surgery and shunt placement in 2007. I had come back to work after being off for a couple of weeks. Everything felt foreign to me and I felt very displaced. As - [Thanks to you...](https://skyewaters.com/hydrocephalus-thanks-to-you/) - The unknown is scary...this is true of any situation in life. Having a condition like Hydrocephalus, can either make or break you...this too, is true of any chronic illness life throws at you. I've had moments of weakness where I've been ready to give up, moments where I've literally begged and pleaded with God to - [Finding the words for what I feel in my head](https://skyewaters.com/hydrocephalus-finding-the-words-for-what-i-feel-in-my-head/) - At times, I get a slight throbbing feeling at the right bottom side of my head...I became aware of this a few months ago, though I thought nothing of it at first. Then, a few days ago, it nagged a little more than usual. I visualised this spot to be where my ETV possibly is, - [Memory and Processing information](https://skyewaters.com/hydrocephalus-memory-and-processing-information/) - I can't help feeling a bit frustrated at the moment. I'm trying to learn/study and am starting to feel like a complete failure or more precisely, like an idiot. I know that I have probably been the hardest on myself all these years and, even though I have moments where I remind myself to just - [Inside a Neurosurgeons head...](https://skyewaters.com/inside-a-neurosurgeons-head/) - I didn't actually mean that literally :-) I just finished reading “Do no harm” by Henry Marsh a little while back. A book, written from the perspective and view of a Neurosurgeon providing some insight to its reader, on what its like to be on the other side. Something attracted me to this particular book to - [What if there are stages of Hydro?](https://skyewaters.com/hydrocephalus-what-if-there-are-stages-of-hydro/) - For a long time I've convinced myself that my Hydrocephalus is a "problem". I have had doctors tell me that I don't have it only to have the next one contradict it with confirmation that I do. Being told things like "You could go into a coma" has been the worst yet. In all honesty, - [Gaining insight from the “outer” family circle](https://skyewaters.com/hydrocephalus-gaining-insight-from-the-outer-family-circle/) - Family...the units we are born into, without any choice. From the time we are born, these people teach us about love and life in general. They are the ones who build our foundation and help us plant our roots. Some we love, some not so much...it really doesn't matter because the blood coursing through our - [ETV failure or not...time will tell](https://skyewaters.com/hydrocephalus-etv-failure-or-not-time-will-tell/) - This will probably be the final post on the ETV Failure Guinea Pig topic from me (unless something significant happens and I live to tell the tale)...I have been patiently waiting to see the Neurosurgeon I consulted with last year to discuss the sleeping episodes I've been having. I was hopeful that he would be - [Gaining insight from my children](https://skyewaters.com/hydrocephalus-gaining-insight-from-my-children/) - In the final post on Gaining Insight, I've decided to post the responses I got from my children. I have 3, 2 boys and 1 girl aged 6. She is too young to understand all of this and yet, she played an important part in the last 3 operations I had. I was 5.5 months - [Gaining insight from colleagues](https://skyewaters.com/hydrocephalus-gaining-insight-from-colleagues/) - Work...the place we spend the majority of our precious time. Colleagues...the people we spend more time with than our own family. Just how important do you regard them to be? In my opinion, we need at least someone who knows that we have this condition at work. A person/s who has your back in case - [When I just feel like giving up...](https://skyewaters.com/hydrocephalus-when-i-just-feel-like-giving-up/) - Some days, much like today, I just feel like giving up. If I were connected to a life support at this moment in time and were able to, I would pull the plug myself. I'm not in pain (Thank God) but can't say I feel good either. I woke up this morning at 4 am - [Gaining insight](https://skyewaters.com/hydocephalus-interview-gaining-insight/) - For a long time, since diagnosis, I've known that my Hydro journey would be my own. It's crazy but despite knowing this, I can't help feeling a sense of abandonment by the people who say they love/care about me. Is it wrong for me to feel as if this VERY BIG THING in my life - ["Enjoy life Today because Yesterday is in the past and Tomorrow is never promised..."](https://skyewaters.com/enjoy-life-today-because-yesterday-is-in-the-past-and-tomorrow-is-never-promised/) - These words are what I've been saying to myself on a continuous basis since a few days ago. I am a natural worry-head, procrastinator and generally think too far ahead into the future. I will be the first to admit, this has driven my stress levels up and on one too many occasions, has threatened - [Who will take care of me when I can't?](https://skyewaters.com/hydrocephalus-who-will-take-care-of-me-when-i-cant-2/) - A concern most people have...I'm sure. Something, which insurance companies prey on...and, in hindsight understandably so (I'm sure they would justify it with "it's the risk we take at the cost of making our money"). With that said though, no insurance company will touch you with a feather if they know you have a condition - [ETV Failure Guinea Pig](https://skyewaters.com/hydrocephalus-etv-failure-guinea-pig/) - The past weekend was one for the books. I had another episode of sleeping the days away. I was going to write this post with a morbid feel to it...because that's how I've been feeling the last few days. Then, a little while ago, I decided to hell with it! I won't. Because doing so - [How do you know that your baby is unwell?](https://skyewaters.com/hydrocephalus-voice-how-do-you-know-that-your-baby-is-unwell/) - A question you will be able to answer...in time. It's not going to be easy to get to that point but get there, you will. I also know that it's not easy seeing your child in agony or pain. I wish that on no parent, however, it might just be the only way for you - ["Are people with Hydrocephalus unsociable"](https://skyewaters.com/hydrocephalus-are-people-with-hydrocephalus-unsociable/) - A search term used by someone who stumbled across my blog... It got me thinking and wondering why someone would type that particular string of words into a Google search. A few weeks ago, I had a discussion with a colleague who, after hearing about my book, Hydrocephalus: Floating Faithfully, wanted to meet up with me - [Hydrocephalus : Some scary situations are better faced with someone else walking the journey alongside you.](https://skyewaters.com/hydrocephalus-voice-some-scary-situations-are-better-faced-with-someone-else-walking-the-journey-alongside-you/) - The arrival of a new baby, a new member of your family, is one of the most exciting times in a new mother/father's life. I remember when I was pregnant. There was one constant prayer for each one of my children from the time of knowing of their existence. I wanted nothing more than for - [Hydrocephalus take a number](https://skyewaters.com/hydrocephalus-take-a-number/) - Earlier this week, my Hydro symptoms reared its ugly head. I woke up at 4:30 am with a throbbing headache, mainly in my eyes...I was miserable and felt very lethargic. I made it through work that day and hoped it would ease up. Lasting all day with constant nausea and dizziness, I was only too - [For all those who will be spending Christmas in hospital…my heart goes out to you.](https://skyewaters.com/hydrocephalus-for-all-those-who-will-be-spending-christmas-in-hospitalmy-heart-goes-out-to-you/) - As Christmas is on the horizon, I think of all the parents and children who are going through a challenging time with their Hydrocephalus. For all those who will be spending Christmas in hospital…my heart goes out to you. However, I pray that the time together will be the silver lining for you. I pray - [It’s one week to go to Christmas. Have you found what's most important to you?](https://skyewaters.com/its-one-week-to-go-to-christmas-have-you-found-whats-most-important-to-you/) - I’m sitting this morning and reflecting on how things have changed since I was a child. There’s been a definite shift in how I see or view what’s important at this time of the year. I’ve crossed paths with so many people…people from different backgrounds, circumstances and beliefs. A time when so many celebrate the - [Shunt vs ETV](https://skyewaters.com/hydrocephalus-shunt-vs-etv/) - When I was first diagnosed with Hydrocephalus, it was a whirlwind time filled with emotion. I can't really say that I registered much until after my first operation, which was literally within a few days. It was a little surreal...to say the least. I had my shunt placed on a Thursday and home by Saturday. - [Make time for yourself, your life and your loved ones](https://skyewaters.com/make-time-for-yourself-your-life-and-your-loved-ones/) - A few months ago, I read a post (Productivity Tip #2 - Schedule your time (and stick to it)), by my fellow blogger friend, Terence Brown of Help Grow Change After reading, I set a challenge before myself and decided I would give it a go...In doing so, I found the time I never knew I - [Let's make a difference to the Hydro world...](https://skyewaters.com/hydrocephalus-lets-make-a-difference-to-the-hydro-world-it-might-not-be-a-cure-but-its-a-way-to-help-make-a-change-at-least-for-the-more-vulnerable-and-voiceless/) - With all my blog posts on Hydrocephalus, I've been contacted by a few people who either have the condition themselves or someone they love has it, more specifically...babies/children. This got me thinking...We all seem to ask the same questions and go through the same emotions, even though our bodies handle the condition differently at times. - [A glimmer of hope in a long lost memory](https://skyewaters.com/hydrocephalus-a-glimmer-of-hope-in-a-long-lost-memory/) - 6 years ago, I had 3 brain operations over a 3 day period. I can't remember much about that time but last night, (the night before the first operation) I had a flashback. I could literally feel, hear and smell my surroundings. I saw myself lying on the bed and I heard the conversations in - [Being strong and independent can be your own worst enemy](https://skyewaters.com/hydrocephalus-being-strong-and-independent-can-be-your-own-worst-enemy-no-one-will-give-half-as-much-as-you-do-and-why-should-they-sowhyshouldyou/) - I've been guilty of being too strong and independent for my own good. Because of this, the people (closest to me) in my life don't give me a chance to ever be weak or needy. Truth be told, I don't like depending on others for anything. I hate it with a passion, especially if I - [What are we doing to each other?](https://skyewaters.com/what-are-we-doing-to-each-other/) - I look around and see the beauty of the place that I now find myself in. However, that beauty means nothing in a world cluttered with hate, crime and copious amounts of destruction. What has this world become? When did life lose its value and become something no more than a piece of garbage? People - [Quality of life...how do you define that?](https://skyewaters.com/hydrocephalus-quality-of-life-how-do-you-define-that/) - A few months ago, during a consultation with a Neurosurgeon, I was asked if my Hydrocephalus was affecting my quality of life. I got the impression that if my answer to this question was "Yes" I might have been facing surgery. I hadn't been asked this before so it took me a bit by surprise. - [How do I explain to her that I will not live forever...](https://skyewaters.com/how-do-i-explain-to-her-that-i-will-not-live-forever/) - A few weeks ago, I was mindlessly watching something on TV...the name escapes me now but it was much like CSI. In the end, some crazy guy shot and killed a teenage girl's parents and little brother in front of her. At the time, I didn't realize that my 5-year old daughter and her 11-year - [Don't lose the focal point of what we have in common..](https://skyewaters.com/hydrocephalus-dont-lose-the-focal-point-of-what-we-have-in-common-everything-else-well-thats-just-irrelevant/) - We all have one thing in common...We or Someone we love has Hydrocephalus. This in itself is enough to provide a link to sanity. Being able to converse with people (using terminology they understand) who can share your feelings, empathize with your symptoms and actually understand fully your paranoia and concerns. At times I feel - [Cognitive whirlpool](https://skyewaters.com/hydrocephalus-cognitive-whirlpool/) - I can't clearly remember when the first time was that I noticed the cognitive challenges I was facing. In fact, most people around me seemed to dumb it down or just plain dismiss the very notion from the start. I know I had memory issues especially after my first operation and this was hard enough - [Do you ever just feel Angry because of it?](https://skyewaters.com/hydrocephalus-do-you-ever-just-feel-angry-because-of-it/) - Do you ever feel like you just want to get angry at Hydrocephalus? Just the mere thought of it being a part of you or the person you love's life? I have to admit, there have been times when I literally despised the fact that I have this condition. I hated having a shunt and - [Hot milk and a blog post at 4:30am](https://skyewaters.com/hot-milk-and-a-blog-post-at-430am/) - I woke up at 2:30 am. Came upstairs to find my husband sleeping on the couch in front of the TV, woke him up and went back to bed. Problem is, it is now 4:30 am and I haven’t been able to fall asleep. I tossed and turned and just couldn’t find my slumber again. - [Keep your life simple, organized and enjoyable](https://skyewaters.com/keep-your-life-simple-organized-and-enjoyable/) - The picture I have in my head of what my life should be like as opposed to the way my life actually is, are two very different things. Opposite in fact… When I look around at my physical surroundings, I see clutter first and foremost. When I look inside at my thoughts, I see clutter…painstakingly - [For all the Hydro Moms and Dads](https://skyewaters.com/hydrocephalus-for-all-the-hydro-moms-and-dads/) - I’ve been meaning to write this post for a while now. In fact, today I decided will be the day since my hubby has just taken the kids out and I’m home alone. So the timing is perfect. This was a bit of a scary week for me as my previous post indicates, but I - [I'm so sorry I disturbed you doctor. Of course you know better than me...](https://skyewaters.com/hydrocephalus-im-so-sorry-i-disturbed-you-doctor-of-course-you-know-better-than-me/) - When I woke up on Saturday morning with a headache and slept all weekend I should have known it couldn't be anything serious. Even when I couldn't keep my eyes open at work on Monday, I should have just gone home, popped some Panadol and had a good sleep. I'm sure my body didn't get - [On the wave of positivity](https://skyewaters.com/hydrocephalus-on-the-wave-of-positivity/) - It's easy to get dragged down into a whirlwind of despair and depression. This would be true of almost anything in life. Hydrocephalus is not an easily digested condition and having to explain it, almost on a daily basis ever since I released my book Hydrocephalus: Floating Faithfully, has become rather draining. (Don't misunderstand because - [Getting rid of your sins](https://skyewaters.com/getting-rid-of-your-sins/) - My friend (Gaurav Sharma) who, every morning on his way to work, throws out some bird seeds to the birds at the train station. When I first saw him doing this, I commented on how nice it was of him to do. His response "I'm getting rid of my sins man". I thought about this - [The first step to understanding is through knowledge](https://skyewaters.com/hydrocephalus-the-first-step-to-understanding-is-through-knowledge/) - Understanding what Hydrocephalus is can be a little confusing, overwhelming or just plain and simply do your head in. I remember when I first saw the word on a scan result I had done. I remember going "Huh? Hydro what?" Since that day, now just over 8 years ago, I have learned as much as - [Appreciate what others do for you...](https://skyewaters.com/appreciate-what-others-do-for-you/) - Do you have people in your life who do things for you? It could be anything really...big, small or (in your opinion) insignificant. Have you ever spared a thought to them? Thought about the fact that they took time to do said thing for you or on your behalf. Whether they succeeded, failed or took - [Practice Patience, Compassion and Mindfulness...Each and every day](https://skyewaters.com/practice-patience-compassion-and-mindfulness-each-and-every-day/) - We never know what life will throw our way...there's also no guarantee that we will be strong enough to handle it. People go through tough times, and the scale just varies. Imagine a time when you were at your lowest point when nothing seemed to make sense and you just couldn't see the light at - ["Forewarned is forearmed "](https://skyewaters.com/forewarned-is-forearmed/) - I used to think that if I didn't put every effort into something...that it would be the same as failing...I no longer do. If I gave up because it was too hard and I just couldn't see a positive outcome...I'd be failing. Not true... If I gave a little more than the other person, then - [Find your passion, and create your life based on this passion](https://skyewaters.com/find-your-passion-and-create-your-life-based-on-this-passion/) - What makes you happy? Think of something that when you do it, it doesn't feel like work but brings you great satisfaction...The feeling I'm talking about is...a smile on your face once you're done, a feeling of accomplishment or even achievement. If you are lucky enough to be in a day job, which ticks all these - [Making time is easier said than done...Challenge accepted](https://skyewaters.com/making-time-is-easier-said-than-done-challenge-accepted/) - A few days ago, I read a blog post by a fellow blogger, Terence Brown, Productivity Tip #2 - Schedule your time (and stick to it). This post reminded me of the many conversations I've had about topics like Terence's blog. Finding time in my busy schedule just seems impossible. They tell you how easily - [Be content with where you are, who you are and what you have](https://skyewaters.com/be-content-with-where-you-are-who-you-are-and-what-you-have-3/) - How many of you struggle with this one? It most certainly can be a trying thing to do...especially when life throws some curve balls at you. Acceptance of your current state is more than just accepting things for what they are... It's about changing your mindset and realizing that you have the power within you - [Slow down once in a while, and take time to enjoy all the beauty around you](https://skyewaters.com/slow-down-once-in-a-while-and-take-time-to-enjoy-all-the-beauty-around-you/) - Sometimes, I think this is easier said than done. How often don't we get caught up in the day to day humdrum of life? The craziness with all it's unscheduled and unplanned instances. We become consumed with everything else around us, that inevitably is unimportant in the greater scheme of things. We even complain about - [Why is it so hard to let go?](https://skyewaters.com/why-is-it-so-hard-to-let-go/) - I've been thinking about this for a while now. There are various opportunities in my life where I've had the chance to do just that and never did. Letting go of ill-feelings (Forgiveness...give it a go!), letting go of tasks at the office and even at the various stages of my children's lives. My 5-year - [Hydrocephalus : The Faith and Science factor](https://skyewaters.com/hydrocephalus-the-faith-and-science-factor/) - Can you honestly say that the circumstances surrounding the death of Travis Shumate have not affected you? Or at the very least made you think..? Whether you have Hydro yourself or someone you love has it, really doesn’t matter. I’m sure many of us have hit a level of discomfort and have even wondered “Can - [Hydrocephalus : Losing your eyesight](https://skyewaters.com/hydrocephalus-losing-your-eyesight/) - There are so many what ifs with Hydrocephalus. What if I need further brain surgery? What if my short term memory doesn’t improve? What if I don’t recover from surgery? What if something goes wrong during surgery? What if my shunt/ETV fails? What if I don't recognise the signs or symptoms? What if I lose - [Hydrocephalus : What’s your medicine routine?](https://skyewaters.com/hydrocephalus-whats-your-medicine-routine/) - I hate taking medication but more importantly, I hate that I have to REMEMBER to take it. My memory is terrible, as is the case with most people who have Hydrocephalus and brain surgery. It’s not the same as “Oh, I’m getting old and can’t remember stuff anymore”. This is a literal black hole/Bermuda triangle - [Hydrocephalus : What’s your weather triggers?](https://skyewaters.com/hydrocephalus-whats-your-weather-triggers/) - “Whether the weather be hot, whether the weather be cold, whether the weather, whatever the weather, whether you like it or not…” Anonymous A few years back, my family and I visited our relatives in Brisbane, Australia. It was extremely hot and the first week I suffered to the point where I thought I was literally going - [Hydrocephalus: Another year without brain surgery...Woo Hoo!](https://skyewaters.com/hydrocephalus-another-year-without-brain-surgery-woo-hoo/) - 8 years today exactly...that’s how long it’s been since my last brain surgery. 3 operations over 3 days (5 and a half months pregnant) and yet, here I am, writing this post. 8 years since I had my emergency ETV (having surpassed the 5-year mark the surgeon told me, in which it could fail). It - [Hydrocephalus: What’s the silliest thing you’ve had to remind yourself of?](https://skyewaters.com/hydrocephalus-whats-the-silliest-thing-youve-had-to-remind-yourself-of/) - Living in a family unit where the majority of the members are male, has proven to be quite tricky. My eldest son is now at an age and physical build where he quite comfortably fits into my husbands Tshirts and even underwear. Hence the quarrels that ensue (because the one wears the others clothing items), - [Critical illness and disease : The effect of words](https://skyewaters.com/critical-illness-and-disease-the-effect-of-words/) - Words have the potential to do so much with very little to no effort. I suppose for me it started with the words Hydrocephalus and Brain surgery. My latest diagnoses of Hyperthyroidism comes with the “possibility” of, Heart failure and Cancer. These words somehow have been the cause of much anxiety, fear and uncertainty for me. They - [What do you do when you HAVE to be the strong one despite having Hydrocephalus?](https://skyewaters.com/what-do-you-do-when-you-have-to-be-the-strong-one-despite-having-hydrocephalus/) - Diagnosed at age 29, in full-time employment and a mother of 2 (now 3), I had no other choice but to be strong. The thing about being diagnosed with an invisible illness and going through 4 brain surgeries is that not even your own family gets it. They look at you through the same eyes - [Hydrocephalus:  "Remind me tomorrow" ](https://skyewaters.com/hydrocephalus-remind-me-tomorrow/) - 3 little words that have managed to evoke some anxiety and borderline fear when uttered by someone else, to me. At the beginning of my Hydro journey and first brain operation, I wouldn’t face the fact that I have a memory issue. This was probably because I convinced myself that I couldn’t possibly forget a - [Hydrocephalus: Do you ever exercise your brain?](https://skyewaters.com/hydrocephalus-do-you-ever-exercise-your-brain/) - The definition of Traumatic Brain Injury is: "Traumatic brain injury (TBI) is an insult to the brain, not of a degenerative or congenital nature, but caused by an external physical force that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning." Bluntly put, there is no nice - [Hydrocephalus: Clutter bug](https://skyewaters.com/hydrocephalus-clutter-bug/) - Does clutter bug you? I bet you’re wondering what clutter could possibly have to do with Hydrocephalus. Bear with me... I personally, looking at my surroundings, am a self-confessed hoarder praying desperately for a release to a calm Zen-like state. (Or maybe I just have too much on my plate and literally can’t get to - [Hydrocephalus...meet Hyperthyroidism](https://skyewaters.com/hydrocephalus-meet-hyperthyroidism/) - A few years ago, I went to listen to a motivational speaker called Robin Banks. At the time, I was severely depressed due to some major life changes and, in need of some extraordinary mind TLC. “How fascinating..!" are just two words in reaction, I learnt at the time, to use when things go...south of the - [Hydrocephalus: Deal breaker or not?](https://skyewaters.com/hydrocephalus-deal-breaker-or-not/) - “For better or worse, for richer or poorer...in sickness and in health, till death do us part”. Either you’ve uttered these words or heard them before. This is part of a wedding vow...A vow we make to each other on the day we become husband and wife. It’s a time when you view your whole - [Hydrocephalus : An invisible illness that's painfully visible to me](https://skyewaters.com/hydrocephalus-an-invisible-illness-thats-painfully-visible-to-me/) - What no person with Hydrocephalus wants or needs to hear: "Most people I see are in a coma and...you look fine to me" - Neurosurgeon So does that mean I need to be in a coma for you to take me seriously? ********** "I get bad headaches too" - Family, colleagues and acquaintances I don't - [Hydrocephalus : The friends and family you lose when living with an incurable condition](https://skyewaters.com/hydrocephalus-the-friends-and-family-you-lose-when-living-with-an-incurable-condition/) - I have only ONE out of the countless types of incurable conditions which exist at this point in time. ONE condition amidst ALL other illnesses and diseases that plague the human race. Therefore, I can only speak from the confines of that which afflicts me. I often hear the saying that “during times of difficulty, - [Hydrocephalus : Awareness begins with you...](https://skyewaters.com/hydrocephalus-awareness-begins-with-you/) - Before the start of this year's awareness month, I didn't have a plan of what I would do. However, a few days before, I felt a growing need inside of me to spread awareness simply because I recognise the need to shine a light on this invisible illness. It wasn't about making this condition bigger, - [Hydrocephalus: How do you deal with the card you've been dealt?](https://skyewaters.com/hydrocephalus-how-do-you-deal-with-the-card-youve-been-dealt/) - Most people say that your attitude towards something will determine how you deal with it (or any challenges presented). For the most part, I would tend to agree with this simply because I learnt a long time ago that if I let the negativity in, it might just consume me. Don't misunderstand...I'm a realist by - [Hydrocephalus : What other choice do you have?](https://skyewaters.com/hydrocephalus-what-other-choice-do-you-have/) - I’ve been “lucky” to not have daily headaches or symptoms related to Hydrocephalus. I have the odd episodes where I’m just knocked down physically and take a few days to recover. This can be anything from dizzy spells, nausea (sometimes vomiting). There have also been times where I’ve had headaches that lasted a few days - [Hydrocephalus the elitist club...NOT!](https://skyewaters.com/hydrocephalus-the-elitist-club-not/) - Over the years of dealing with doctors, some have made me feel the need to (overly) explain why and how I developed Hydrocephalus. Almost as if to justify it... Granted it's normal to be asked this at a first consult with a new doctor to give them the context and history they need, I'm not - [The reactive nature of Hydrocephalus ](https://skyewaters.com/the-reactive-nature-of-hydrocephalus/) - As I've mentioned before, I work in IT and have always had the approach that being proactive is better than being reactive. (In fact, this is my approach to life in general). If you have the opportunity to solve an issue before it becomes a problem, then why not do that? It's like finding a - [Hydrocephalus:  So how much pressure is high enough? Speaking of CSF of course...](https://skyewaters.com/hydrocephalus-so-how-much-pressure-is-high-enough-speaking-of-csf-of-course/) - Pressure...a thing that applied in any situation, in varying amounts, has different effects. Say, for example, the amount of "pressure" your boss puts on you at work or that you most likely put on yourself, will have a different effect than your screaming child throwing a tantrum. There's a build up of emotion associated with - [Hydrocephalus:  How touchy are you about the negative effects that Hydrocephalus has on you?](https://skyewaters.com/hydrocephalus-how-touchy-are-you-about-the-negative-effects-that-hydrocephalus-has-on-you/) - There are a few ways in which Hydrocephalus and having had brain surgery affects us, some in more ways than others. Cognitive skills, memory issues, being indecisive...these are just a few examples. By nature, I "shoot from the hip/say it like it is, don't take crap and can be quite straightforward" (sometimes to the detriment - [Hydrocephalus: I reckon having someone in your corner is better than the alternative.](https://skyewaters.com/hydrocephalus-i-reckon-having-someone-in-your-corner-is-better-than-the-alternative/) - If you've been following my blog, you'll know the challenges I've faced/am facing, just to be heard. Being told at my last consult, which always feels like it's the last, "We're just not going to operate on you because, you look fine and your tests show that too". Going down the slippery slope after this - [When you've just got to keep on going forward ](https://skyewaters.com/when-youve-just-got-to-keep-on-going-forward/) - How much of what life throws at you, don't you find yourself just wishing you could fling right back? How many times have you felt like enough is enough? How often have you felt like a complete and utter failure? Well...I want to tell you to STOP! Sure, life sucks sometimes and sure it's - [Hydrocephalus...Intermittent failure?](https://skyewaters.com/hydrocephalus-intermittent-failure/) - Intermittent : "Occurring at irregular intervals; not continuous or steady" Working in IT support for the last 20+ years, has definitely had its advantages. Take for example the word "intermittent", something used more often than not when faced with an unexplainable technical issue. For me to understand this term in the context of my Hydrocephalus - [What's a girl with Hydrocephalus to do..?](https://skyewaters.com/whats-a-girl-with-hydrocephalus-to-do/) - Fighting against doctors while you believe that something is wrong with your shunt or ETV, feels like a daunting thing to do. Helpless is the number one feeling that comes to mind. I remember when my shunt was failing, I fought about as hard as I am now to be heard. If that experience has - [Hydrocephalus: What are you doing to raise awareness?](https://skyewaters.com/hydrocephalus-what-are-you-doing-to-raise-awareness/) - Hydrocephalus, the reason why you are part of certain Facebook groups, the reason why you troll the internet looking for help or answers to the myriad of questions you have. Either you, or someone you know and/or love has this condition. The Hydrocephalus Association in the USA does it right, in my opinion, for the - [Why is depression a diagnosis that Neurologists like to jump to with Hydrocephalus patients?](https://skyewaters.com/why-is-depression-a-diagnosis-that-neurologists-like-to-jump-to-with-hydrocephalus-patients/) - Since my last post, I can't really admit to feeling much better. I sincerely wish I could just lie and shake this shit off me. Click my fingers and voila! But alas... My MRI results have come back with normal ventricles and a patent stoma - Meaning, my ETV is doing just dandy...or is it? - [How do you tell a (prospective) boss you have Hydrocephalus?](https://skyewaters.com/how-do-you-tell-a-prospective-boss-you-have-hydrocephalus/) - In my last and final post on "How do you tell your boss you have Hydrocephalus?". I've covered the past, where I was diagnosed while in full-time employment. And, I covered my present situation, having immigrated and starting a new job. Now, I'd like to take a closer look at any prospective employers. I suppose - [How do you tell your boss that you have Hydrocephalus : Present](https://skyewaters.com/how-do-you-tell-your-boss-that-you-have-hydrocephalus-present/) - My past experience has been somewhat different from where I am now. It almost feels like it could be worlds apart...in fact, that's exactly where it's at. Better..? Or worse..? Hmmm.. I left my home country, a few years after diagnosis, shunt surgery and eventual ETV, in search of and hopeful of better medical care - [Hydrocephalus 10...Celeste 0](https://skyewaters.com/hydrocephalus-10-celeste-0/) - I'm not a very sporty person (evident from my physique)...I kid you not. However, in any competition I find myself up against, I will admit to being a bit of a sore loser. I might not be an extremist in this regard but I do feel the pangs of defeat a bit more than I - [How do you tell your boss, that you have Hydrocephalus? 3-part post](https://skyewaters.com/how-do-you-tell-your-boss-that-you-have-hydrocephalus-3-part-post/) - Past When I was first diagnosed, at age 29, I was a full-time employee. Therefore, my manager at the time was with me from the start of my Hydro journey. I remember clearly when I got the results from my CT scan and what happened after discussing the findings with the Neurologist (if only my - [When your parents become like children](https://skyewaters.com/when-your-parents-become-like-children/) - Something I've always heard but not really paid much attention to is that as your parents become older, they become more child-like. I look at my own grandmother as an example. A strong woman in her younger days. I have a much better opinion regarding her ageing process (the young vs the old) than I - ["Make time for yourself, your life and your loved ones"...challenging to say the least](https://skyewaters.com/make-time-for-yourself-your-life-and-your-loved-ones-challenging-to-say-the-least/) - How easy this is to say but I find it increasingly difficult to do. A secretary at my former company used to tell me that I need to slow down. She shared how her mum always told her that if she didn't, God would find a way to make her slow down. Things happen to - [Parenting](https://skyewaters.com/parenting/) - There are so many articles and books on the perfect parenting skills or ways to help you be the best parent you can possibly be. Advice that swears to get you to the point in your parenting career where you will feel adequate enough to wear the badge with pride. Yes, I said "career" because - [To my friend who has just been told she has 3 months to live because she has stage 4 ovarian Cancer](https://skyewaters.com/to-my-friend-who-has-just-been-told-she-has-3-months-to-live-because-she-has-stage-4-ovarian-cancer/) - "I'm sorry..." seems to be the first words that come to mind. Sorry for so many things because somehow, I just feel this is wrong and unfair. Sorry because you were a little girl that I knew once upon a time, a girl whom I envied and loved because you were always kind and caring - [Hydrocephalus : When a headache plays chicken with you...](https://skyewaters.com/hydrocephalus-when-a-headache-plays-chicken-with-you/) - Ever feel like the beginning of a headache is the same as playing the game of Chicken? A few weeks ago, I had a lurking pain that started off subtly but like so many times before, had me wondering if it'll turn into something more. At times like these, I remain aware of the pain - [Hydrocephalus : My Issue Is Scar Tissue...maybe...](https://skyewaters.com/hydrocephalus-my-issue-is-scar-tissue-maybe/) - Abdominal Adhesions/Scar tissue "Abdominal adhesions are bands of fibrous tissue that can form between abdominal tissues and organs. Normally, internal tissues and organs have slippery surfaces, preventing them from sticking together as the body moves. However, abdominal adhesions cause tissues and organs in the abdominal cavity to stick together." https://www.niddk.nih.gov/health-information/digestive-diseases/abdominal-adhesions Scar tissue...something I've mentioned before - [Hydrocephalus : Well you look fine to me...](https://skyewaters.com/hydrocephalus-well-you-look-fine-to-me/) - These few little words have the power to evoke all sorts of feelings in me once uttered by someone else. A few days ago we went out for a team lunch and one of the women in the group asked me how I was doing as she had heard I was feeling unwell. I told - [Marriage is overrated ](https://skyewaters.com/marriage-is-overrated/) - We fall in love... Promises are made... A lifetime of happiness we imagine together as we are governed by a heart filled to the brim. Life happens and 2 become 3, sometimes 4 or even 5. In between all of that, feelings change as the illusion of it all slowly starts breaking down. We see - [Hydrocephalus : Again with the antidepressants](https://skyewaters.com/hydrocephalus-again-with-the-antidepressants/) - I've started thinking there's no point in fighting with the doctors I've dealt with (for now anyway). No matter how convinced I was at the time of seeking help again since 2015 that there was a problem, it's beside the point right now. Truth be told, after the series of consults that followed, I became - [Imagine having a way to communicate your invisible illness to those around you visually...](https://skyewaters.com/imagine-having-a-way-to-communicate-your-invisible-illness-to-those-around-you-visually/) - This morning I woke up at 4 am with the start of an excruciating episode of stomach pain (only too familiar to me). I lay waiting to see if it would escalate while praying that it wouldn't. However, that was a futile prayer because sure enough, it was one for the mother load of episodes. - [The depressive state of Hydrocephalus](https://skyewaters.com/the-depressive-state-of-hydrocephalus/) - Depression is a curse and in some instances, sadly fatal but it doesn't have to be. It can be very debilitating and make you feel like you've been severed at the limbs (with a blunt object), from the minds perspective. It's easy, in this frame of mind, to believe that there is no hope, no - [Hydrocephalus : It's the little things that count...](https://skyewaters.com/hydrocephalus-its-the-little-things-that-count/) - Have you ever looked at the next person, listened to their story and thought "Damn, I thought my situation was bad..."? Well...I have in more ways than one and on more than one occasion too. As an example, last year, a friend of mine was diagnosed with Cancer. Since I don't live in the same - [Hydrocephalus : Do you regard it as a disability?](https://skyewaters.com/hydrocephalus-do-you-regard-it-as-a-disability/) - A little while ago, I was asked by Anna Adams of the Rolling With Spina Bifida FB page, to write a story about my life with a disability for their website. Reading her request, made me sit back and think about it for a long while, having been caught off-guard. I have no problem writing about Hydrocephalus and how - [Hydrocephalus : Do you ever feel like you're jinxed? Well I do...](https://skyewaters.com/hydrocephalus-do-you-ever-feel-like-youre-jinxed-well-i-do/) - It feels as if every time I decide to have a positive attitude and WILL myself to feel good, it gets turned upside down. I started off the new year on a positive note and even posted this in some of the Facebook groups. Simply because I want us all to have a year of - [Hydrocephalus : Making sense of it all](https://skyewaters.com/hydrocephalus-making-sense-of-it-all/) - When I was 15 years old, I contracted viral meningitis - I was in my last year at school and this was just before my last exam. 7 years later, I contracted it again - nearly 3 months after giving birth to my eldest son and before going back to work. 5 years later, I - [Hydrocephalus : Thank God for GPS!](https://skyewaters.com/hydrocephalus-thank-god-for-gps/) - I've never been good with directions but since being diagnosed with Hydrocephalus, with all it's mental challenges, I'd say it's 1000 times worse. It really doesn't matter if I'm taking them or giving them. For example, if I were to be sitting in a car and directing someone, I'd physically have to wave my hand - [Hydrocephalus : Dealing with the different you Pre-diagnosis vs Post-diagnosis as an adult with Hydrocephalus](https://skyewaters.com/hydrocephalus-dealing-with-the-different-you-pre-diagnosis-vs-post-diagnosis-as-an-adult-with-hydrocephalus/) - Being diagnosed at the age of 29 with Hydrocephalus, I have a Pre-Me version of myself (in my head), lurking beneath the surface. I say lurking because that person somehow feels surreal to me...like a ghost. I am definitely not the same person despite what others may think or see when they look at me. - [When people take advantage of your good nature](https://skyewaters.com/when-people-take-advantage-of-your-good-nature/) - I don't think of myself as the kind of person who would purposely take advantage of anyone else. In fact, I know I'm not. But, it gets me thinking about people who do this though. What is it that drives them? How do they get it right to disregard the next person? Imagine if someone - [How stress adds to my memory issues](https://skyewaters.com/how-stress-adds-to-my-memory-issues/) - Regardless of what any Neurosurgeon or Neurologist has told me over the last couple of years, my short-term memory has definitely been affected. And, no it hasn't improved as the textbooks tell "them" it should after a short period following a brain operation. It feels like ever since my first shunt surgery, I've been fighting an uphill - [The weird thing about getting older (Well, maybe not so weird...)](https://skyewaters.com/the-weird-thing-about-getting-older-well-maybe-not-so-weird/) - When I was younger, I used to hear adults saying things like "Life goes by so quickly". Or "Kids grow up so quickly, enjoy them while they're young" Or "Don't live with regrets". Or "Look after your body and yourself". Most of these things escapes the mind of a young and naive person. Being young - [Hydrocephalus : Passing an ETV post op hurdle](https://skyewaters.com/hydrocephalus-passing-an-etv-post-op-hurdle/) - 2 December marks my 7 year post op hurdle. I've done it...defied the odds! (She says optimistically). I was told after my operation, that the ETV could close and it normally happens within 5 years. Whether I've come to the end of the track or am charging ahead toward the next hurdle...who knows? Every year - [Hydrocephalus : What kind of relationship do you have with your NS (Neurosurgeon)?](https://skyewaters.com/hydrocephalus-what-kind-of-relationship-do-you-have-with-your-ns-neurosurgeon/) - Good "bedside manners" is a quality sought in a relationship with a prospective partner and should effectively be the same when choosing your Neurosurgeon (figuratively speaking of course). Would you go into a relationship with someone who has a bad rep? How is one person's view different from the other? I've consulted with surgeons who, in ## Pages - [Inspiration...It comes in many ways](https://skyewaters.com/about/inspiration-it-comes-in-many-ways/) - When we ourselves are down and out, feeling like we have our backs against the wall, it's difficult to see clearly. It's easier to wallow in self pity and feel sorry for ourselves. However, there are also times when we will hear another's plight, or sad story, and think; "I thought my problems were bad - [Shunt patency study ](https://skyewaters.com/shunt-patency-study/) - 21 July 2025 A procedure only performed by a member of the neurosurgical team The registrar felt around for the shunt reservoir on my head. He shaved the spot he would use. Then, he covered it with a small sterile plaster. It hurt as the needle went in. I heard a suction sound as he - [Get to know me](https://skyewaters.com/get-to-know-me/) - [Get to know me](https://skyewaters.com/about/) - My name is Celeste, author and creator of Skyewaters, a pen name I chose when I decided to start this blog. I chose it because of this picture I had. See how the Angel looks as if she's playing with water...? It, together with the photo below, speaks to my soul...It encompasses so much of - [Cookie Policy (AU)](https://skyewaters.com/cookie-policy-au/) - [Checkout](https://skyewaters.com/checkout/) - [Welcome to the Hydro store](https://skyewaters.com/homepage/) - Best Sellers - [Endurance logo](https://skyewaters.com/endurance-logo/) - West African Wisdom: Adinkra Symbols & Meanings. AYA "fern" symbol of endurance and resourcefulness. The fern is a hardy plant that can grow in difficult places. "An individual who wears this symbol suggests that he has endured many adversities and outlasted much difficulty." When choosing this logo, my son commented that it doesn’t really have - [My Hydro Logo](https://skyewaters.com/my-hydro-logo/) - This new design still incorporates much of what my original logo below stands for. Every Hydro warrior dreams of the day when better treatment options will be available or at best, a cure is found. A day where no more brain surgery is needed and a day where we will be free from pain, suffering - [Purchase Confirmation](https://skyewaters.com/purchase-confirmation/) - Thank you for your purchase! - [Transaction Failed](https://skyewaters.com/transaction-failed/) - Your transaction failed, please try again or contact site support. - [Purchase History](https://skyewaters.com/purchase-history/) - [Shop](https://skyewaters.com/shop/) - [My Account](https://skyewaters.com/my-account/) - [woocommerce_my_account] ## Downloads - [Hydrocephalus: Floating Faithfully](https://skyewaters.com/downloads/hydrocephalus-floating-faithfully/) - 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 hope to leave the reader educated on this condition, which affects millions (if not more) around the world and hopefully shine a light on the Hydroid world, which is bound - [Hydrocephalus never a dull moment...](https://skyewaters.com/downloads/hydrocephalus-never-a-dull-moment/) - If there's one thing you can be certain of, living with a condition like Hydrocephalus, it's that there will never be a dull moment. Get your free copy by clicking the button below. - [Stronger than you know...](https://skyewaters.com/downloads/stronger-than-you-know-sample/) - *Not for sensitive readers* Sexual abuse robs young children of the life they were meant to live - it strips them of freedom, confidence and bestows qualities of low self-esteem and low morale. It is a silent killer of the mind and an inner torture chamber not easily seen with the naked eye. This book - [Hydrocephalus: Floating Faithfully](https://skyewaters.com/downloads/hydrocephalus-floating-faithfully-sample/) - 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 hope to leave the reader educated on this condition, which affects millions (if not more) around the world and hopefully shine a light on the Hydroid world, which is bound - [Stronger than you know...](https://skyewaters.com/downloads/stronger-than-you-know/) - *Not for sensitive readers* Sexual abuse robs young children of the life they were meant to live - it strips them of freedom, confidence and bestows qualities of low self-esteem and low morale. It is a silent killer of the mind and an inner torture chamber not easily seen with the naked eye. This book ## Categories - [When Life Happens...](https://skyewaters.com/category/when-life-happens/) - [Hydrocephalus](https://skyewaters.com/category/hydrocephalus/) - [Hydrocephalus Interview](https://skyewaters.com/category/hydrocephalus-interview/) - [Hydrocephalus Voice](https://skyewaters.com/category/hydrocephalus/hydrocephalus-voice/) - [Marriage-Self-Motherhood](https://skyewaters.com/category/marriage-self-motherhood/) - [Selective Mutism](https://skyewaters.com/category/sm-selective-mutism/) - [What is hydrocephalus?](https://skyewaters.com/category/hydrocephalus/what-is-hydrocephalus/) ## Tags - [Acceptance](https://skyewaters.com/tag/acceptance/) - [Advice](https://skyewaters.com/tag/advice/) - [Advice for Parents of Children with Hydrocephalus](https://skyewaters.com/tag/advice-for-parents-of-children-with-hydrocephalus/) - [Appreciate life](https://skyewaters.com/tag/appreciate-life/) - [Attitude](https://skyewaters.com/tag/attitude/) - [Babies](https://skyewaters.com/tag/babies/) - [Baby](https://skyewaters.com/tag/baby/) - [Being a burden](https://skyewaters.com/tag/being-a-burden/) - [Belief](https://skyewaters.com/tag/belief/) - [Better Life](https://skyewaters.com/tag/better-life/) - [Brain damage](https://skyewaters.com/tag/brain-damage/) - [Brain injury](https://skyewaters.com/tag/brain-injury/) - [Brain Operation](https://skyewaters.com/tag/brain-operation/) - [Call it quits](https://skyewaters.com/tag/call-it-quits/) - [Cancer stages](https://skyewaters.com/tag/cancer-stages/) - [Care](https://skyewaters.com/tag/care/) - [Caring](https://skyewaters.com/tag/caring/) - [Change](https://skyewaters.com/tag/change/) - [Change in attitude](https://skyewaters.com/tag/change-in-attitude/) - [Children](https://skyewaters.com/tag/children/) - [Christmas](https://skyewaters.com/tag/christmas/) - [Chronic condition](https://skyewaters.com/tag/chronic-condition/) - [Chronic medical condition](https://skyewaters.com/tag/chronic-medical-condition/) - [Cognitive](https://skyewaters.com/tag/cognitive/) - [Coma](https://skyewaters.com/tag/coma/) - [Compassion](https://skyewaters.com/tag/compassion/) - [Concentrating with noise](https://skyewaters.com/tag/concentrating-with-noise/) - [Consumed by illness](https://skyewaters.com/tag/consumed-by-illness/) - [Crime](https://skyewaters.com/tag/crime/) - [Death](https://skyewaters.com/tag/death/) - [Deja Vu](https://skyewaters.com/tag/deja-vu/) - [Depression](https://skyewaters.com/tag/depression/) - [Destruction](https://skyewaters.com/tag/destruction/) - [Diabetes stages](https://skyewaters.com/tag/diabetes-stages/) - [Dizziness](https://skyewaters.com/tag/dizziness/) - [Empathy](https://skyewaters.com/tag/empathy/) - [Enemy](https://skyewaters.com/tag/enemy/) - [Enjoy life](https://skyewaters.com/tag/enjoy-life/) - [Enough](https://skyewaters.com/tag/enough/) - [ETV](https://skyewaters.com/tag/etv/) - [ETV Failure](https://skyewaters.com/tag/etv-failure/) - [Expect the best](https://skyewaters.com/tag/expect-the-best/) - [Facebook](https://skyewaters.com/tag/facebook/) - [Facing it alone](https://skyewaters.com/tag/facing-it-alone/) - [Facing the Unknown](https://skyewaters.com/tag/facing-the-unknown/) - [Faith](https://skyewaters.com/tag/faith/) - [Family](https://skyewaters.com/tag/family/) - [Fear and Anxiety](https://skyewaters.com/tag/fear-and-anxiety/) - [Feeling helpless](https://skyewaters.com/tag/feeling-helpless/) - [Feeling hopeless](https://skyewaters.com/tag/feeling-hopeless/) - [Feeling off](https://skyewaters.com/tag/feeling-off/) - [Feeling sick](https://skyewaters.com/tag/feeling-sick/) - [Feeling unwell](https://skyewaters.com/tag/feeling-unwell/) - [Flashback](https://skyewaters.com/tag/flashback/) - [Food for thought...](https://skyewaters.com/tag/food-for-thought/) - [Foundation in Faith](https://skyewaters.com/tag/foundation-in-faith/) - [Friends and Colleagues](https://skyewaters.com/tag/friends-and-colleagues/) - [Frustration with studying or learning](https://skyewaters.com/tag/frustration-with-studying-or-learning/) - [Future](https://skyewaters.com/tag/future/) - [Gaining Insight](https://skyewaters.com/tag/gaining-insight/) - [Gifts](https://skyewaters.com/tag/gifts/) - [Giving](https://skyewaters.com/tag/giving/) - [Giving up](https://skyewaters.com/tag/giving-up/) - [Guinea Pig](https://skyewaters.com/tag/guinea-pig/) - [Happiness](https://skyewaters.com/tag/happiness/) - [Hate](https://skyewaters.com/tag/hate/) - [Head](https://skyewaters.com/tag/head/) - [Help](https://skyewaters.com/tag/help/) - [Helpless](https://skyewaters.com/tag/helpless/) - [Hope](https://skyewaters.com/tag/hope/) - [Hydrocephalus](https://skyewaters.com/tag/hydrocephalus/) - [Hydrocephalus Challenges](https://skyewaters.com/tag/hydrocephalus-challenges/) - [Hydrocephalus Milestones](https://skyewaters.com/tag/hydrocephalus-milestones/) - [Indecision](https://skyewaters.com/tag/indecision/) - [Independent](https://skyewaters.com/tag/independent/) - [Innocence](https://skyewaters.com/tag/innocence/) - [Insight](https://skyewaters.com/tag/insight/) - [Life](https://skyewaters.com/tag/life/) - [Life is precious](https://skyewaters.com/tag/life-is-precious/) - [Live Life](https://skyewaters.com/tag/live-life/) - [Love languages](https://skyewaters.com/tag/love-languages/) - [Love ones](https://skyewaters.com/tag/love-ones/) - [Loved ones](https://skyewaters.com/tag/loved-ones/) - [Make a difference](https://skyewaters.com/tag/make-a-difference/) - [Making a difference](https://skyewaters.com/tag/making-a-difference/) - [Making time for yourself](https://skyewaters.com/tag/making-time-for-yourself/) - [Memory](https://skyewaters.com/tag/memory/) - [Memory Issues](https://skyewaters.com/tag/memory-issues/) - [Mindset](https://skyewaters.com/tag/mindset/) - [Mother](https://skyewaters.com/tag/mother/) - [Nausea](https://skyewaters.com/tag/nausea/) - [Neurosurgeon](https://skyewaters.com/tag/neurosurgeon/) - [Opportunity to make a difference](https://skyewaters.com/tag/opportunity-to-make-a-difference/) - [Own worst enemy](https://skyewaters.com/tag/own-worst-enemy/) - [Panic](https://skyewaters.com/tag/panic/) - [Parents of Hydro children](https://skyewaters.com/tag/parents-of-hydro-children/) - [Persistent headache](https://skyewaters.com/tag/persistent-headache/) - [Pregnant](https://skyewaters.com/tag/pregnant/) - [Pressure](https://skyewaters.com/tag/pressure/) - [Processing Information](https://skyewaters.com/tag/processing-information/) - [Programmable Shunt](https://skyewaters.com/tag/programmable-shunt/) - [Protect](https://skyewaters.com/tag/protect/) - [Purpose](https://skyewaters.com/tag/purpose/) - [Push through](https://skyewaters.com/tag/push-through/) - [Quality of life](https://skyewaters.com/tag/quality-of-life/) - [Reassurance](https://skyewaters.com/tag/reassurance/) - [Religion](https://skyewaters.com/tag/religion/) - [Resentful](https://skyewaters.com/tag/resentful/) - [Respect](https://skyewaters.com/tag/respect/) - [Responsibility](https://skyewaters.com/tag/responsibility/) - [Sacrifice](https://skyewaters.com/tag/sacrifice/) - [Science](https://skyewaters.com/tag/science/) - [Serenity prayer](https://skyewaters.com/tag/serenity-prayer/) - [Sharing](https://skyewaters.com/tag/sharing/) - [Showing compassion](https://skyewaters.com/tag/showing-compassion/) - [Shunt](https://skyewaters.com/tag/shunt/) - [Sleepiness](https://skyewaters.com/tag/sleepiness/) - [Slit ventricles](https://skyewaters.com/tag/slit-ventricles/) - [Spare Time](https://skyewaters.com/tag/spare-time/) - [Strategies for Coping](https://skyewaters.com/tag/strategies-for-coping/) - [Strength in the face of a chronic condition](https://skyewaters.com/tag/strength-in-the-face-of-a-chronic-condition/) - [Strike](https://skyewaters.com/tag/strike/) - [Strong](https://skyewaters.com/tag/strong/) - [Sunsetting gaze](https://skyewaters.com/tag/sunsetting-gaze/) - [Support](https://skyewaters.com/tag/support/) - [Support for others dealing with Hydrocephalus](https://skyewaters.com/tag/support-for-others-dealing-with-hydrocephalus/) - [Support groups](https://skyewaters.com/tag/support-groups/) - [Supportive colleagues](https://skyewaters.com/tag/supportive-colleagues/) - [Surviving](https://skyewaters.com/tag/surviving/) - [Take a number](https://skyewaters.com/tag/take-a-number/) - [Telltale signs](https://skyewaters.com/tag/telltale-signs/) - [Thank you](https://skyewaters.com/tag/thank-you/) - [Thankful](https://skyewaters.com/tag/thankful/) - [There's nothing wrong](https://skyewaters.com/tag/theres-nothing-wrong/) - [Throbbing](https://skyewaters.com/tag/throbbing/) - [Time](https://skyewaters.com/tag/time/) - [Tomorrow is never promised](https://skyewaters.com/tag/tomorrow-is-never-promised/) - [Treading Water](https://skyewaters.com/tag/treading-water/) - [Treat others as you would like to be treated](https://skyewaters.com/tag/treat-others-as-you-would-like-to-be-treated/) - [True meaning of Christmas](https://skyewaters.com/tag/true-meaning-of-christmas/) - [Uncertainty](https://skyewaters.com/tag/uncertainty/) - [Understanding](https://skyewaters.com/tag/understanding/) - [Unknown](https://skyewaters.com/tag/unknown/) - [Unsociable](https://skyewaters.com/tag/unsociable/) - [Vomiting](https://skyewaters.com/tag/vomiting/) - [Wasting Time](https://skyewaters.com/tag/wasting-time/) - [When death comes](https://skyewaters.com/tag/when-death-comes/) - [Who will take care of me when I die](https://skyewaters.com/tag/who-will-take-care-of-me-when-i-die/) - [World](https://skyewaters.com/tag/world/) - [Yeah right](https://skyewaters.com/tag/yeah-right/) - [Yesterday is gone](https://skyewaters.com/tag/yesterday-is-gone/) - [You can do this](https://skyewaters.com/tag/you-can-do-this/) - [Dreams can become reality](https://skyewaters.com/tag/dreams-can-become-reality/) - [Marriage](https://skyewaters.com/tag/marriage/) - [Life purpose](https://skyewaters.com/tag/life-purpose/) - [We live to die](https://skyewaters.com/tag/we-live-to-die/) - [It's not up to me](https://skyewaters.com/tag/its-not-up-to-me/) - [True value of life](https://skyewaters.com/tag/true-value-of-life/) - [Too late](https://skyewaters.com/tag/too-late/) - [Not faking](https://skyewaters.com/tag/not-faking/) - [Trying to survive](https://skyewaters.com/tag/trying-to-survive/) - [Effect change](https://skyewaters.com/tag/effect-change/) - [Appreciate what others do for you](https://skyewaters.com/tag/appreciate-what-others-do-for-you/) - [Practice](https://skyewaters.com/tag/practice/) - [Patience](https://skyewaters.com/tag/patience/) - [Mindfulness](https://skyewaters.com/tag/mindfulness/) - [Karma](https://skyewaters.com/tag/karma/) - [Forewarned is forearmed](https://skyewaters.com/tag/forewarned-is-forearmed/) - [Ill treatment](https://skyewaters.com/tag/ill-treatment/) - [Failing](https://skyewaters.com/tag/failing/) - [Warning signs](https://skyewaters.com/tag/warning-signs/) - [Find your passion](https://skyewaters.com/tag/find-your-passion/) - [Create your life](https://skyewaters.com/tag/create-your-life/) - [Job description woman](https://skyewaters.com/tag/job-description-woman/) - [Marriage and motherhood](https://skyewaters.com/tag/marriage-and-motherhood/) - [Making time](https://skyewaters.com/tag/making-time/) - [Easier said than done](https://skyewaters.com/tag/easier-said-than-done/) - [Challenge accepted](https://skyewaters.com/tag/challenge-accepted/) - [Mind power](https://skyewaters.com/tag/mind-power/) - [Robin Banks](https://skyewaters.com/tag/robin-banks/) - [Be content with where you are](https://skyewaters.com/tag/be-content-with-where-you-are/) - [Who you are](https://skyewaters.com/tag/who-you-are/) - [What you have](https://skyewaters.com/tag/what-you-have/) - [Live simply](https://skyewaters.com/tag/live-simply/) - [Take it slow](https://skyewaters.com/tag/take-it-slow/) - [Slow down](https://skyewaters.com/tag/slow-down/) - [Enjoy the beauty around](https://skyewaters.com/tag/enjoy-the-beauty-around/) - [Take time](https://skyewaters.com/tag/take-time/) - [Life is a rush](https://skyewaters.com/tag/life-is-a-rush/) - [Hangover](https://skyewaters.com/tag/hangover/) - [Headache](https://skyewaters.com/tag/headache/) - [Chronic pain](https://skyewaters.com/tag/chronic-pain/) - [Migraine](https://skyewaters.com/tag/migraine/) - [Brain feels bruised](https://skyewaters.com/tag/brain-feels-bruised/) - [Sacrifice for sanity](https://skyewaters.com/tag/sacrifice-for-sanity/) - [Drinking](https://skyewaters.com/tag/drinking/) - [Purgatory](https://skyewaters.com/tag/purgatory/) - [Headaches and migraines](https://skyewaters.com/tag/headaches-and-migraines/) - [Why is it so hard to let go](https://skyewaters.com/tag/why-is-it-so-hard-to-let-go/) - [Forgiveness](https://skyewaters.com/tag/forgiveness/) - [Trust your gut](https://skyewaters.com/tag/trust-your-gut/) - [Ask for help](https://skyewaters.com/tag/ask-for-help/) - [Raising kids](https://skyewaters.com/tag/raising-kids/) - [Children are a blessing](https://skyewaters.com/tag/children-are-a-blessing/) - [Better to just forget](https://skyewaters.com/tag/better-to-just-forget/) - [Too many choices](https://skyewaters.com/tag/too-many-choices/) - [How do other see me](https://skyewaters.com/tag/how-do-other-see-me/) - [Introvert](https://skyewaters.com/tag/introvert/) - [Extrovert](https://skyewaters.com/tag/extrovert/) - [keep smiling](https://skyewaters.com/tag/keep-smiling/) - [Viral meningitis](https://skyewaters.com/tag/viral-meningitis/) - [Floating faithfully](https://skyewaters.com/tag/floating-faithfully/) - [Short term memory](https://skyewaters.com/tag/short-term-memory/) - [Pick yourself up when you're down](https://skyewaters.com/tag/pick-yourself-up-when-youre-down/) - [Things will get better](https://skyewaters.com/tag/things-will-get-better/) - [Angry](https://skyewaters.com/tag/angry/) - [Emotional turmoil](https://skyewaters.com/tag/emotional-turmoil/) - [Doctors don't help](https://skyewaters.com/tag/doctors-dont-help/) - [Questioning God](https://skyewaters.com/tag/questioning-god/) - [Don't give up](https://skyewaters.com/tag/dont-give-up/) - [Can't sleep](https://skyewaters.com/tag/cant-sleep/) - [Insomnia](https://skyewaters.com/tag/insomnia/) - [Keep life simple](https://skyewaters.com/tag/keep-life-simple/) - [Organized](https://skyewaters.com/tag/organized/) - [You are their rock](https://skyewaters.com/tag/you-are-their-rock/) - [You are their strength](https://skyewaters.com/tag/you-are-their-strength/) - [You are their hero](https://skyewaters.com/tag/you-are-their-hero/) - [They depend on you](https://skyewaters.com/tag/they-depend-on-you/) - [Doctor knows best](https://skyewaters.com/tag/doctor-knows-best/) - [Sorry I disturbed you](https://skyewaters.com/tag/sorry-i-disturbed-you/) - [CSF](https://skyewaters.com/tag/csf/) - [CT Scan](https://skyewaters.com/tag/ct-scan/) - [Triage](https://skyewaters.com/tag/triage/) - [Signs and Symptoms of Complication](https://skyewaters.com/tag/signs-and-symptoms-of-complication/) - [On the wave of positivity](https://skyewaters.com/tag/on-the-wave-of-positivity/) - [God send](https://skyewaters.com/tag/god-send/) - [Getting rid of your sins](https://skyewaters.com/tag/getting-rid-of-your-sins/) - [Bad choices](https://skyewaters.com/tag/bad-choices/) - [Good deeds](https://skyewaters.com/tag/good-deeds/) - [Act of kindness](https://skyewaters.com/tag/act-of-kindness/) - [Level of paranoia](https://skyewaters.com/tag/level-of-paranoia/) - [Knowledgeable doctors](https://skyewaters.com/tag/knowledgeable-doctors/) - [Knowledge](https://skyewaters.com/tag/knowledge/) - [ETV is not a cure](https://skyewaters.com/tag/etv-is-not-a-cure/) - [Boy who cried wolf](https://skyewaters.com/tag/boy-who-cried-wolf/) - [Appreciate what you have](https://skyewaters.com/tag/appreciate-what-you-have/) - [Be like a duck](https://skyewaters.com/tag/be-like-a-duck/) - [Coping skills](https://skyewaters.com/tag/coping-skills/) - [Shunt surgery](https://skyewaters.com/tag/shunt-surgery/) - [Inspiration](https://skyewaters.com/tag/inspiration/) - [Sexual abuse](https://skyewaters.com/tag/sexual-abuse/) - [Survivor](https://skyewaters.com/tag/survivor/) - [Stronger than you know](https://skyewaters.com/tag/stronger-than-you-know/) - [You can get through it](https://skyewaters.com/tag/you-can-get-through-it/) - [When life happens](https://skyewaters.com/tag/when-life-happens/) - [It's my birthday](https://skyewaters.com/tag/its-my-birthday/) - [Relationships](https://skyewaters.com/tag/relationships/) - [Strengthen the bond](https://skyewaters.com/tag/strengthen-the-bond/) - [Keeping relationship intact](https://skyewaters.com/tag/keeping-relationship-intact/) - [Trust](https://skyewaters.com/tag/trust/) - [Pre-existing conditions](https://skyewaters.com/tag/pre-existing-conditions/) - [Medical Insurance](https://skyewaters.com/tag/medical-insurance/) - [Medical Aid](https://skyewaters.com/tag/medical-aid/) - [Unforeseen circumstances](https://skyewaters.com/tag/unforeseen-circumstances/) - [Brain surgery](https://skyewaters.com/tag/brain-surgery/) - [Medical alert card](https://skyewaters.com/tag/medical-alert-card/) - [Peace of mind](https://skyewaters.com/tag/peace-of-mind/) - [Emergency situations](https://skyewaters.com/tag/emergency-situations/) - [Alert card template](https://skyewaters.com/tag/alert-card-template/) - [Being like a duck](https://skyewaters.com/tag/being-like-a-duck/) - [Hydrocephalus and relationship](https://skyewaters.com/tag/hydrocephalus-and-relationship/) - [Scar on my soul](https://skyewaters.com/tag/scar-on-my-soul/) - [Shaved hair](https://skyewaters.com/tag/shaved-hair/) - [What's important](https://skyewaters.com/tag/whats-important/) - [Seasick](https://skyewaters.com/tag/seasick/) - [Helicobacter Pylori](https://skyewaters.com/tag/helicobacter-pylori/) - [H Pylori](https://skyewaters.com/tag/h-pylori/) - [Pushing the limits](https://skyewaters.com/tag/pushing-the-limits/) - [Hydrocephalus sucks](https://skyewaters.com/tag/hydrocephalus-sucks/) - [Invisible illness](https://skyewaters.com/tag/invisible-illness/) - [You must be faking](https://skyewaters.com/tag/you-must-be-faking/) - [Vincent Barker](https://skyewaters.com/tag/vincent-barker/) - [Being reactive](https://skyewaters.com/tag/being-reactive/) - [Being proactive](https://skyewaters.com/tag/being-proactive/) - [A matter of trust](https://skyewaters.com/tag/a-matter-of-trust/) - [Doctors being God-like](https://skyewaters.com/tag/doctors-being-god-like/) - [Discipline](https://skyewaters.com/tag/discipline/) - [School](https://skyewaters.com/tag/school/) - [Punishment](https://skyewaters.com/tag/punishment/) - [Changing times](https://skyewaters.com/tag/changing-times/) - [Learning](https://skyewaters.com/tag/learning/) - [Parenting](https://skyewaters.com/tag/parenting/) - [Providing comfort and support](https://skyewaters.com/tag/providing-comfort-and-support/) - [Anxiety and fear before surgery](https://skyewaters.com/tag/anxiety-and-fear-before-surgery/) - [Treatment](https://skyewaters.com/tag/treatment/) - [Mind over matter](https://skyewaters.com/tag/mind-over-matter/) - [This too shall pass](https://skyewaters.com/tag/this-too-shall-pass/) - [Hydrocephalus Awareness Month](https://skyewaters.com/tag/hydrocephalus-awareness-month/) - [Finding a cure](https://skyewaters.com/tag/finding-a-cure/) - [Spread the word](https://skyewaters.com/tag/spread-the-word/) - [Gaining perspective](https://skyewaters.com/tag/gaining-perspective/) - [Work](https://skyewaters.com/tag/work/) - [Anxiety](https://skyewaters.com/tag/anxiety/) - [Do the best you can](https://skyewaters.com/tag/do-the-best-you-can/) - [Overcoming work stress](https://skyewaters.com/tag/overcoming-work-stress/) - [Diagnosis](https://skyewaters.com/tag/diagnosis/) - [Challenges](https://skyewaters.com/tag/challenges/) - [Bad memory](https://skyewaters.com/tag/bad-memory/) - [Life is not easy](https://skyewaters.com/tag/life-is-not-easy/) - [Am I depressed](https://skyewaters.com/tag/am-i-depressed/) - [Life happens](https://skyewaters.com/tag/life-happens/) - [Questioning life](https://skyewaters.com/tag/questioning-life/) - [At wits end](https://skyewaters.com/tag/at-wits-end/) - [Waiting for the other shoe to drop](https://skyewaters.com/tag/waiting-for-the-other-shoe-to-drop/) - [Education](https://skyewaters.com/tag/education/) - [Parent advice](https://skyewaters.com/tag/parent-advice/) - [Helping each other](https://skyewaters.com/tag/helping-each-other/) - [Medical care](https://skyewaters.com/tag/medical-care/) - [Consistency](https://skyewaters.com/tag/consistency/) - [Adult and Child medical care](https://skyewaters.com/tag/adult-and-child-medical-care/) - [Struggling with faith](https://skyewaters.com/tag/struggling-with-faith/) - [Aqueductal stenosis](https://skyewaters.com/tag/aqueductal-stenosis/) - [Overuse of analgesics](https://skyewaters.com/tag/overuse-of-analgesics/) - [Stress](https://skyewaters.com/tag/stress/) - [#makingwaves](https://skyewaters.com/tag/makingwaves/) - [Financial burden](https://skyewaters.com/tag/financial-burden/) - [MRI](https://skyewaters.com/tag/mri/) - [CSF Flow study](https://skyewaters.com/tag/csf-flow-study/) - [Paranasal Sinus Mucosal Disease](https://skyewaters.com/tag/paranasal-sinus-mucosal-disease/) - [Analytical](https://skyewaters.com/tag/analytical/) - [Hell on earth](https://skyewaters.com/tag/hell-on-earth/) - [Vaxxed](https://skyewaters.com/tag/vaxxed/) - [Doctors oath](https://skyewaters.com/tag/doctors-oath/) - [Selective Mutism](https://skyewaters.com/tag/selective-mutism/) - [Children who don't talk](https://skyewaters.com/tag/children-who-dont-talk/) - [Helping children who don't speak](https://skyewaters.com/tag/helping-children-who-dont-speak/) - [Fear](https://skyewaters.com/tag/fear/) - [#making waves](https://skyewaters.com/tag/making-waves/) - [Walking away](https://skyewaters.com/tag/walking-away/) - [Runway of life](https://skyewaters.com/tag/runway-of-life/) - [Going into a coma](https://skyewaters.com/tag/going-into-a-coma/) - [Advocate](https://skyewaters.com/tag/advocate/) - [Lead by example](https://skyewaters.com/tag/lead-by-example/) - [Finding help with Hydrocephalus](https://skyewaters.com/tag/finding-help-with-hydrocephalus/) - [Support groups for Hydrocephalus](https://skyewaters.com/tag/support-groups-for-hydrocephalus/) - [Working with noise](https://skyewaters.com/tag/working-with-noise/) - [Communication barriers](https://skyewaters.com/tag/communication-barriers/) - 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