New beginnings…I’m moving

Metamorphosis1

Skyewaters.com is born. If you enjoy reading what I have to write, then head on over to my new website. I’m excited about this new chapter in my life and would feel honoured if you’d continue walking on this journey with me.

This will be my last post on here and I look forward to seeing you on the other side.

I’ve been given my wings and am ready to fly…Blue butterfly

 

P.S. Let me know what you think of the new site.

I’m still alive..!

busy.jpg

It’s been 18 days since I last posted Hydrocephalus: Wow moments and leaving a legacy behind.

I am painfully aware that I haven’t put out another post since then and would like to apologise to you, my followers.   Life has gotten in the way but…in a good way.  I’m working on everything I wrote about in my last post and making sure I stay true to my mission in life…to leave a legacy behind and hopefully effect change.  Pretty soon, you’ll be visiting me at my new site and I’m super excited to share it with all of you and the rest of the world! (God willing…)

Aside from that, I have an exam, which I need to re-write next Saturday (4th of June), which has me a tad stressed as I haven’t found the time to do what I need to prepare for it fully.  On top of all that, I have fulltime work and family life, which all require my utmost attention and…now I feel like I’m just making excuses but hand on heart…it’s all true.

I am most thankful and happy to report that I am still managing to Stay afloat as my Hydrocephalus symptoms hasn’t given me any problems…touch wood!

All this makes me realise that life happens, and sometimes, it requires us to perform a juggling act of note.  Fortunately, I am passionate enough about this blog to see it through and promise – I won’t leave you hanging.

So this is me…signing out but not until I’ve personally told you – I’M STILL ALIVE..!

 

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Hydrocephalus: Wow moments and leaving a legacy behind

Journey of life

Talking to a colleague of mine the other day, Ravi K., the discussion stumbled across me having Hydrocephalus. His curiosity peaked, I cautiously explained what it is and how it is treated. It was quite amusing to hear him repeatedly say “So you’ve been cured” leaving me to explain that there is no cure just treatment, each time. He looked amazed…

These kind of discussions unnerve me to a point, at the onset at least, but eventually I reach a level of comfort. It’s unnerving because being in the corporate world and having experiences as I’ve had, unrelated to my condition, have made me aware of who I can entrust this information to and who not. Blatantly put, fears of being judged or even losing my job are at the top of the spectrum. This fear is probably born out of a paranoia that people will think me useless…which is what I feel (sometimes), regardless of the fact that I know I’m not.

However, the need for me to educate and share with the people I’m surrounded by, about this condition and causing a ripple effect in the big pond of this world we live in…is so much more important.

Here’s why:

  • There’s not a lot of knowledge about Hydrocephalus, not many people have even heard of it and more importantly, it does not change who I am if they know.
  • Whatever reaction people have to finding out about my condition and what I’ve had to endure and still do…well, that’s up to them.
  • Nothing I say or do will change the outcome.
  • I have not found a person who has been put off when I tell them I have a medical condition with no cure, just treatment. In fact, their reaction is quite the opposite.

They’re intrigued, curious and majority of the time I see a shift in the way they treat me. All positive though.

There’s always one or two who are just complete idiots, I expect an encounter with them. The people who have the ability to shrink your confidence to a grain of sand and make you doubt yourself, even if it’s only momentarily.  They don’t deserve such power in any way or form, so be aware of them.  These people, I cut off at the “limb” and move on…no loss felt because it’s not a reflection of who I am but clearly shows who they are.

If there’s anything I’ve gained from sharing my story, it’s the fact that I walk away feeling stronger than I do most days – emotionally, spiritually and mentally. I feel “proud” of what I have been through and more proud of the fact that I’ve actually accumulated “Wow moments” along my journey. Many people have a bucket list and feel the need to go bungee jumping or skydiving…for me, it’s surviving every day and getting to spend as much time as I can, with those closest to me.

I’ve said before, I won’t let this condition get me down (we all have our bad days) but it’s the getting back up and saying “Hell yes! Bring it on” or “Why not me” that gets my juices flowing and adrenaline pumping. I could very easily give up and I would probably be justified in displaying anger at God for cursing me with this wretched condition. But, let’s be honest, it’s not gonna get me anywhere now is it. I think all it will do is turn me into a miserable old cow and that’s not how I want to go through life or be remembered.

Lately, I’ve been on a mission to fill my jar of “Wow moments” (bonus if it turns out that I fill more than one).  A journey where I get to leave something behind for my children. A place where they get to go, long after I’m gone, to connect with me on another level. I most certainly will die one day (as all of us will) but leaving these posts behind, these living breathing words, will be a testament to what and who I am. I will leave them (this my children know) but for me, it brings satisfaction and immense peace to know they will have a piece of me for as long as they live.

For now, it’s this blog. I’ll be starting a website soon (watch this space) and fill it with all things related to me. This will be my legacy to my kids. They will be able to visit with me whenever the need arises and feel me close to them. Yes, there will be things that they should probably not know about or be reminded of but what is our life if not filled with both the good and the bad? I’ll be the first to say, life is NOT perfect…Bad things DO happen to good people and I am living proof of that.

The experiences I’ve had, am having, will have, are all what define me as a person. We all have them, these are the chapters of our lives, the stories we all have to tell, one way or another. Hopefully there’s something others can learn from, improve on and even steer clear of.

What legacy will you leave behind? Do you think it’s worth leaving a tiny footprint (your own) on the path of life?

Go on…give it a go.

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Hydrocephalus : Thanks to you…

Kitten High five

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 end my life and take away the pain.  However, more than these moments, I’ve had times where I’ve gotten back up onto my feet and taken a step forward toward a new breath, a new hour, a new day, a new year…

It’s not easy living life, knowing you have a challenge greater than those who are not touched by illness, and pushing on.  You can sink into bouts of depression and dwell there for days, not wanting to move, not wanting to eat, not wanting to do anything.  I know because I’ve been in this state too.  However, staying afloat in the stream of life, leaves you with little to no other option…

When I allow myself to sit still and think of what I’ve been through with this condition, I am almost left speechless and more so…in Awe of myself but to a greater extent, the love of God without whom, I would not have made it.  Now I know, most people do not believe in God and for that, I do not judge them, it is their choice.  Some have even asked me what makes me believe…I’ll be honest and say, there have been times when I have struggled with a clear answer.  In fact, there is no specific reason…I simply do.  My grandmother, was a great instrument in this part of my life.  She raised me and made sure that I attended church every Sunday.  I knew to say my prayers each night before going to bed and even sang in the church choir for most of my youth.  She laid the foundation of my belief in God and because of this, my experiences in life (no matter how bad) have been faced head on despite stumbling and failing from time to time.  I am by no means perfect, nor am I a model Christian but that’s not what this post is about.

I am touched by the responses and messages I’ve received thus far to the posts I’ve shared.  More than this, I feel humbled to have others share their stories with me in return.  The most amazing part of this, is the friendships I’ve struck with complete strangers…giving me hope for humanity.  Knowing that someone took the time to offer a few words of encouragement, share their own story or offer their well wishes, lifts my spirit to a new high.  I feel blessed and fortunate to be able to share these words/feelings/thoughts as I strike the keys, knowing that someone, somewhere will be reading what I have to say.

So to all of you reading this right now…Thank you!  Thank you for taking the time and thank you for giving me a platform where I can speak, breathe and live (though strong or weak)…it makes facing the unknown seem a little less…daunting.

 

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Hydrocephalus: Finding the words for what I feel in my head

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 visualized this spot to be where my ETV possibly is, as it left me wondering if this is where it resides.

I ignored the dull throb, thankful that it wasn’t causing me any pain but wondering if it would tip the scales at any moment. It’s like watching someone yielding a knife at you but you’re uncertain if they will actually take a stab at you or not. This feeling is filled with the same amount of uncertainty, fear and anxiety of the unknown.

Usually, the throbbing goes away after some time and doesn’t last too long. However, this time it lasted longer than normal, escalating and making my head feel…I struggle to find the words. How do I describe this?  Maybe something like this:

  • There’s a “full” feeling in my head? Or…
  • It feels as if I have pain but it’s not excruciating and unbearable? Or…
  • I feel off? Or…
  • I feel dizzy and need to blink my eyes a few times? Or…
  • I flex and arch my neck, stretching from side to side?  (This feels like a bad habit I’ve developed, repeated more than once). Or even…
  • Something doesn’t feel right inside my head?

I got through the day and made it to 4 o’clock, time to head home but I was left with these feelings and thoughts…best described as:

  • I start having thoughts of death and having to get home to see my kids…
  • A fear rises up inside of me and I question myself…
  • I never feared death, I don’t fear death but I don’t want to face it either…not yet.
  • I need to catch the train home, get in my car and drive home to my family.
  • I make deals with God all the time…not now, not like this, not here.
  • If I were to collapse on my way, would anyone even know that I have my medical info in my phone?
  • What if someone stole my phone? No, that won’t happen here…this is New Zealand.
  • What if there’s not enough time to get me to the hospital?
  • What if the emergency staff don’t act quickly enough and find out that I have Hydrocephalus?
  • Damn it! I pray all the time that I can just make it home to my kids and husband…
  • I’d rather if something were to happen, that it happen here.
  • I buy bread on autopilot before catching the next train home…because life doesn’t stop around me and my family will need lunch tomorrow.
  • I’m thankful to make it home and flop onto my bed.

Head off

The full feeling in my head hasn’t left me…I feel as if I could literally screw my head off my neck, clear out some of the fullness and rearrange everything back into order. Just a little breather from whatever stress, strain or crap I’m feeling. Like when you wear a tight pair of shoes and give your feet a break by removing the dreaded source of discomfort and pain…even if it be only temporarily.

Heavy and off…that’s how it feels. Happy to hit the pillow and relieved to close my eyes…

A few days later, and I’m left feeling dizzy and nauseous…

 

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Hydrocephalus: Memory and Processing information

StudentI 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 ease up, I still find it entirely hard to do.

I’m in the process of studying for an English test for Immigration purposes.  It’s not so much that I need to study to speak English (I’m a native English speaker of course, with English being my 2nd language) but more a case of me needing to get the hang of the test format.  More importantly and my biggest struggle, is reading a piece of text and then answering questions around it.  Interpreting something, which has been written down and then giving my own viewpoint or a summary of the text, seems like the hardest thing to do as well.  It’s the whole “processing of information” that is literally doing my head in!

Firstly, I think it’s completely ridiculous that I have to prove my command of the English language to begin with (just venting).  But, I shall comply for the sake of the process and because I know…I’m not more special than the next person who has to do the same test.

I passed the IELTS test I done 2 weeks ago but scored lower than I had hoped for in the Reading component by .5!..Simply because I need a certain score to get the desired number of points, I am now being forced to re-do the exam and hope for the best.

I don’t even know if I can claim that I have a “disability” and somehow get more time to complete the test or whatever arrangements they have available for people who have special requirements.  I have no “evidence of brain injury” to prove this and I’m not 100% certain that I can or should classify myself in the “disability” category.  Furthermore, I’m considering a different test altogether called PTE Academic where I believe there are other people in the same room as you, seated in little cubicles with a headset, in front of a computer.  I’m nervous about this type of setting, simply because I REALLY struggle to concentrate with noise around me.

After my first operation in 2007, I became aware of the fact that my learning was affected and no matter how much I brushed it aside, it was a struggle no doubt. I know that my short-term memory is affected and despite doing daily exercises to keep my brain trained and flexing it to improve my ability, I’m still not at the level I’d like to be.  (I see progress…but it’s slow).  After I had my 2nd, 3rd and 4th operations, I realized that the problem was a bit bigger than I had initially thought.  I struggled to read and retain what I had literally just read.  I became frustrated with myself because I used to love reading novels and immersing myself in the story-line but because I forgot what I had read before, I ended up having to go back a few pages…chapters even (I kid you not) just to refresh my memory.  I just gave up and in the end I completely stopped reading books.

I feel frustrated, weak and just want to give up…but, I know that I need to do this for my family (and more importantly for myself).  I would love to get some advice on how you deal with your memory issues but more importantly if you too struggle with processing information…

 

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Hydrocephalus: What if there are stages of Hydro?

Waterfall

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, I think I stopped “living” the day my eyes fell on the word Hydrocephalus on my MRI report and I started my frantic search online, to learn everything I possibly could about this condition. A downward spiral into a dark abyss is where I literally found myself…I compare being diagnosed with Hydrocephalus to a premature death sentence.

As much as I’ve read and know, I still feel there’s so much I don’t…Also, the things I already know, I read and re-read too many times to mention. Simply because, I feel a need to understand…understand what this is and understand how I can work it out of my body/life. Almost as if reading about it could wipe its existence out of me or help me fix myself. (I know it won’t). I think the biggest question I’ve been left with: “Is it all in my head?“.

Given this state, I think it’s fair to say Hydrocephalus has consumed me.

It’s not something I’m proud of. In fact, putting it like that makes me feel like I need to change and find my way back to the life I knew before diagnosis. It’s a bit easier said than done…I don’t know what that was…(And I may never get there).

However, here’s what I’m going to attempt. These doctors on my journey, the ones who say “there’s nothing wrong” with me, are the key. Because of what they have said, I’m going to give it the benefit of the doubt and start focusing in on exactly what they have said. I’m going to start living my life as if “nothing is wrong“. You might think this a bit “crazy” and wonder how I could possibly do that. The answer is simple:

I’ve been Floating Faithfully since my ETV, nearly 6 years ago and the 2 years before that, when I was diagnosed and shunted. I’ve managed my triggers with “success” and brought my incidence level down tremendously. I still have my bad days but they are nothing in comparison to what I’ve felt before. Life in general is not perfect, this is something all beings know. Therefore, I accept that my “good” days will not be perfect as they are tainted with a few bad days in between. (As I’m writing this, I’m aware of how nauseous and tired I feel. This could be attributed to just about anything right?)

P.S. This is me, changing my attitude and the way I think.

Maybe the doctor had some method in her madness when I visited the Emergency room. Maybe I “shouldn’t suspect Hydrocephalus at the first instance“. (I wish I could break that way of thinking too).

This has brought me to thinking…what if there are degrees or levels of Hydro? We all have the same condition and experience similar symptoms yet we are all different. So…maybe I’m different to a person who literally has pain every single day of their life due to the pressure in their head. I can’t honestly say that I have this level of discomfort and am thankful because of it. Also, maybe I’m different to the person who has had 100 surgeries (I could not believe that number either but there actually is someone who has had this number of brain surgeries, in fact more). I suppose it’s best understood in terms of the stages in Cancer…stage 1, 2, 3 or 4 or Diabetes…Type 1 or 2…hopefully you get where I’m going with this.

I wonder why it is that no-one classes Hydro the same way…Think about it

Does it mean I count myself lucky or more fortunate than the next person? Well…NO. It does however mean that there is room for me to start living the life I left behind at diagnosis.

I look at my sister-in-law, Bronwyn, a true inspiration to me in the face of being diagnosed with a beast of a condition…Cancer was her diagnosis a few years back. She’s been cleared of it though after intensive treatment. From what I personally witnessed, Cancer did not consume her, though it caused her unbearable physical pain at times…

It doesn’t run her life and she never talks about it. Whether it be her way of masking or dealing with it, that’s another story. She lives her life and makes the most of her time. Looking at her, there’s no evidence that she was ever touched by the disease. You might say that I can’t possibly compare the two but both could cause death and both are serious enough to be taken seriously. Besides that’s not the point of my post.

It’s a known fact that there is no cure for Hydro and so too there’s no known cure for Cancer. However there is treatment for both…Could I safely say I’ve been “treated” for Hydro just as she’s been treated for Cancer?

I want to reach for that level with my condition. I want to say “My hydro has been treated and is under control“…more than that, I want to believe it with all my heart and soul…to embrace life and live.

All publications I’ve read on this condition, does not leave much room for that kind of approach. I wonder if the mind over matter philosophy will work with my approach? If anything, I’d say it’s better than Giving up on myself.

 

 

Thank you for taking the time to read.

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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 one’s 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 veins is what joins us forever.

A very good friend of mine once recommended I read a book called The 5 Love Languages.  Even though this book is more for relationship counseling, it gave me insight into what my love language is in any given relationship.  For me personally, it’s a combination of Acts of Service and Words of Affirmation.  In fact, truth be told, I find myself naturally doing this more and more for the people around me and simply because it ties in with the saying “treat others as you would like to be treated”.

I think there’s a thin line between members of our family actually LOVING us and the language they use to interact with us, which can become a bit distorted at times.  From what I have gained out of the rest of the post to follow, I have to emphasize this.  I DO NOT DOUBT THAT MY FAMILY LOVE ME, they’re just using the wrong love language.

This is the feedback I received from two members of my “outer” family circle:

My Aunt Annette (married to my father’s baby brother)

  1. What is your relationship with me?
    • My niece by marriage
  2. Do you know what condition I have?
    • Not really.
  3. What is your understanding of this condition?
    • None at all
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • No
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent.  How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • Sorry, I have never seen you ill.
  6. What was your initial reaction when you found out I have this condition?
    • Shocked, and sad and wondered how are you coping.
  7. How did you feel when you heard I needed surgery?
    • Not good at all and not knowing what the outcome will be.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I do not know, cause you so far away with little contact.
  9. Have you noticed any significant changes in my performance?
    • No
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Prayed that the op will be successful and you will be back to your normal self again, cause I do not know what the outcome of the op was.
  11. Do you feel that (at any time), you changed towards me?  If so, how and why?
    • No.
  12. What frustrates you most about me having this condition?
    • I would not know cause I do not know how you react when you feel sick.
  13. Do you have any questions for me?
    • Yes, have the ops helped you in any way and do you think you will have any more ops?
  14.  If you could say one thing to me, what would it be?
    • Jehovah willing, I pray that you feeling much better now and we are promised that sickness, pain and death will be a thing of the past soon – please read Isaiah33:v24 and Rev 21; 3 & 4. And read with a open mind

What have I gained from this feedback?

My Aunt lives in a city about 8-10 hours drive away, same city as the rest of my family (Mum, Dad, Brother and Sisters).  I can understand much of what she has said in terms of not having any knowledge and since we lived so far apart.  I found it interesting that she said “Shocked, and sad and wondered how are you coping.

How often don’t we get a thought in our head about someone who is sick or going through a tough time and even think out loud “I wonder how so-and-so is doing?” But, we never actually follow through on the thought and find out…

My answer (in a nutshell) to her question was this :

The condition I have, Hydrocephalus, is a chronic incurable condition.  The only treatment for it is the OPs I’ve had:
  • either a shunt being placed into the brain to re-direct the excess fluid (this has been removed and was my first OP) or
  • a hole drilled into my third ventricle, called an ETV, for the fluid to bypass (my last OP).
Unfortunately, neither one of these are permanent solutions and could lead to further operations in the future.  The shunt can become blocked or you could develop an infection which will require further surgery to replace the shunt.  The ETV can close up over a period of time and therefore either will be re-done or a shunt will need to be implanted again.  
Unfortunately as I said, there is no cure and I would love to say the OPs helped but that’s not the case.  For now, I have my faith and I manage the condition as best as I can making changes and limiting my triggers.  I have an appointment next Wednesday, 30th with a surgeon to discuss some issues I’ve been having.  
I hope that makes sense, if not let me know and if you have any other questions, feel free to ask.  Prayers are always welcome too 🙂

 

My second-eldest sister, Glynnis

  1. What is your relationship with me?
    • You are my younger sister.
  2. Do you know what condition I have?
    • Now I do because you explained it to me.
  3. What is your understanding of this condition?
    • When the fluid on your brain is not regulated properly it affects you in ways that you don’t remember anything. You blank / zone out.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • NO
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • Not living with you makes it difficult to answer this question. But should I live with you I will support you 100%. 10 is my rating.Out of everyone in my life, I do believe this to be true. As my sister, you have always shown compassion and concern for my well-being.
  6. What was your initial reaction when you found out I have this condition?
    • Sad and hurt. Couldn’t understand that an intelligent person like you can have this.This is something which I feel I NEED to comment on. Hydrocephalus does not discriminate. It can touch anyone, from any walk of life and there are no barrier lines. I am not immune and in no way more special than the next person.

      Accepting this condition as part of me, has been the one thing I have HAD to do. It defines who I am now and I think, in it, I have found my purpose too. I don’t question why me, but why NOT me?

      If I can make a change in the Hydro world, then I’ll die a happy woman. In saying that though, I do bargain with God on a daily basis and purely because my kids still need me. I accept death when it comes no matter what because I know in the end, it’s not up to me.

  7. How did you feel when you heard I needed surgery?
    • Very scared. I was ignorant about your condition at the time and had so many questions about your well being afterward.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Yes. In a direct way. You call a spade a spade. You have become fearless!
  9. Have you noticed any significant changes in my performance?
    • You are self-driven. Being focused on your goals motivates you to be “hands on.” And you don’t waste time.
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • You were pregnant at the time and my fear was that you or the baby can die. But thank God you both survived the operation.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • This didn’t happen overnight but I started to feel distant from you since we stopped sharing our intimate moments with each other. It could be that I am not fully aware of your condition that it disabled me to be honest with you.
  12. What frustrates you most about me having this condition?
    • Oh boy when you : SHUT DOWN. You focus on what must be done and everyone must wait. It can be a good thing but at times I need to know if my sister is okay.

Being raised by my grandparents, everything else aside, I had to learn to fend for myself. I was my protection, in the palm of God’s hand, and that spelt out how my life HAD to be. I know my personality but in hindsight, I’d say it was the circumstances which molded me into who I am today.

  1. Do you have any questions for me?
    • How do you feel…Is all of this overwhelming for you?

It does become overwhelming at times (when I actually allow myself to think about it). Life is busy and sometimes it feels like that’s not a good thing but it helps keep my mind occupied so I don’t dwell on it too much. I don’t like self-pity so only when I am all by myself, I break down and deal with it at the time, allowing the emotions of it all to take over. I sometimes can’t believe that I’ve been through this or have Hydrocephalus to begin with. I do tend to forget that I do especially when I feel “fine”. It’s not easy but I get through it as best I can.

  1. If you could say one thing to me, what would it be?
    • I am so proud of you whether you have or not have this condition. You are a true inspiration to many of us. And this is a fact. I love you my beautiful sister.

What have I gained from this feedback?

My sister’s responses conjured up a lump in my throat.

It gave me insight into taking a deeper look at myself especially after the last post from my colleague and friend, Laureen. I did not have an easy life growing up (my next book to be published on Smashwords – watch this space) and developing Hydrocephalus later on in my life just feels like the ultimate cherry on this cake. I don’t do self-pity, as I said before.  I have my moments of weakness and break down but I grow stronger after that. It’s like metamorphosis though, each time feels more painful than the last especially since you’d expect it to get easier after the last time I visited this low level place.

To give you some perspective on my upbringing…I wasn’t raised by my parents but by my grandparents in a different city about 8-10 hours drive away. There were many times when I felt like an orphan and more as if they don’t care about me. Being older though and having a family of my own, I can understand that my parents didn’t have it easy and did the best they could under the circumstances. Let’s face it, parenting combined with life = damn hard…most times. I don’t hold it against them. However, I do have strong moments when I literally feel like I am “out of sight, out of mind“.

I feel almost justified in saying that, especially since I was hoping to get a response to this questionnaire from each one of my family members (Mother, father, brother and older sister). That obviously did not happen and I feel a tad disappointed to say the least. My older sister sent her apologies for not completing the questionnaire and honestly said she did not know enough to answer it adequately. This is fair enough.  However, if it were me, I would have made the effort at that point to find out more. It’s easy to feel as if they don’t care because their non-response warrants it. However, it is still their choice. This is a light bulb moment for me…Not everyone in your life, no matter how close they are to you or tied by blood, will have what it takes to deal with this condition. I can only deal with my own feelings and what I assume is the reason for them not responding.

As far as I’m concerned in any situation such as this, it’s the other person’s loss and I should just move on from it. I tried…supplied the opportunity and the saying comes to mind “You can take a horse to water but you can’t make it drink“. And, as someone else added to that phrase “But, I know how to hold its head down“. I don’t like this approach either…I will NOT force my condition on my family. They each have a choice to ask me any number of questions or comment on just about anything…They even have the fullest right just to show compassion and ask “How are you doing?“. As I said before, I don’t doubt that they love me as I’m sure they do but…

This would be the part in my first post where I said “Is it wrong for me to feel as if this VERY BIG THING in my life should be just as BIG to those around me?

What this little exercise is teaching me is that it’s not the blood that courses through your veins that will determine the amount of care or empathy you receive. As can be seen in my gaining insight from colleagues post.

Family is not about blood.  It’s about who is willing to hold your hand when you need it the most

Be thankful for the people who do show you the least bit of care. For me, it’s the concern that comes at a pivotal moment where I’m feeling so down and ready to give up that matters most.

Watch out for my next post where I share the responses from my sons

 

Thank you for taking the time to read.

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Hydrocephalus: ETV Failure or not…time will tell

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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 able to shed some light on what was going on and if he even suspected that my ETV is busy failing, would act on it.  However, the dialogue below is what transpired:

“So I saw you middle of last year is that right?

Yes, that’s right.

So what brings you in today?

I’ve been having sleeping episodes where I go to sleep on a Friday and literally sleep the weekend away.  Occasionally waking up to go to the toilet. I don’t eat and hardly drink anything, I can’t get myself to move and only come around by late Sunday evening.  However, it takes the rest of the week before I feel “normal” again…I’d probably say it feels like I’m…hung over…I struggle at work, can hardly concentrate and just amble through the day.

I see…So this only happens on a Friday?

Yes, thus far…I’ve actually had 3 episodes.  One in October last year, then December right before going on holiday and again in January this year.  If it was one isolated incident, I probably wouldn’t have taken much notice of it but this has happened 3 times now.  At my last consultation with you, you said because I have slit ventricles, I could slip into a coma…this is why I’m concerned and would just like to get some peace of mind…

I do understand.  However, there’s not much that I can do in terms of that.  I mean, I understand that you want peace of mind…obviously.  But, I’m not too sure it will be so easy to do.

I put your plan into place like you said with my last consult.  I contacted my GP on my way to the hospital to call ahead and let the ED staff know I’m on my way.  But, all that happened, was me being pumped full of pain medication and even after explaining that I would need an MRI with flow study to see if something was going on, they insisted on doing a CT scan.

From the notes, I can see there was nothing abnormal about your ventricles…which is good. 

Yes, but…the CT scan wouldn’t have shown anything anyway and that’s why I explained to the doctor on call that she needed to do the MRI.  She discussed it with her supervisor who agreed with me, that it would be what was required, and said that I probably know my condition better than them anyway.  They discussed it a bit more and the attending doctor came back saying that they would do the CT anyway as they needed some form of imaging.  It was apparently too late in the afternoon to do the MRI as people were going home…She  said the Neurosurgical team looked at the scans and were happy with it and that I could be discharged.

So my team looked at it?

Well, that was what she said.  Whether or not they actually did, I can’t confirm that.

I’ve had patients who are REALLY feeling sick and who’s CT shows enlarged ventricles but on the day of surgery when I repeat the CT, the ventricles have gone down and the pressure is gone.  I’ve even had shunts partially blocked and then unblock itself…So it might just be that when we do the CT Scan, your ventricles might look fine because right now, you look fine to me.  The MRI might not even show us anything either…

I know I look fine but I can tell you, I haven’t been feeling well.  My headaches aren’t as bad or frequent as they used to be either though I do wake up with a full feeling at the back of my head and over the middle.  If I do wake up with a headache, it usually subsides anywhere from 30 minutes to about 2 hours later and I feel fine again.  I can also understand what you’re saying about the pressure changing.  In fact when I woke up one Monday morning in December, when the sleeping episode happened again, I had my eyes tested the Wednesday  as the headache had subsided but wasn’t gone.  The pressure was apparently high but not high enough…so I’m assuming it was high on the Monday morning when the headache started and was at it’s worst?

Let’s just pull up that scan here and I can have a look at it.  The difficult part about your ventricles is that they wouldn’t show us much anyway.  I could order the MRI for you but if you are fine, it won’t show us anything.  If I look at you now…you look fine to me….You’re walking and talking, I can understand you.  Most patients I see are sick, really sick and most of them are even in a coma which then requires me to act.  In your case, there’s not much I can do because if I do operate on you when you are fine, I’m going to hurt you…every time we operate on you, we hurt you.

I understand what you are saying but I don’t want to go into a coma…I’m really scared of that happening.  I’d like to prevent it if at all possible.

I can certainly understand that but with your condition, it’s a bit difficult to preempt what’s going to happen.  I never follow-up any of my other patients who have shunts or ETVs.  I could have a follow-up with you through my Public clinic…you did say that you didn’t have insurance.  Is that right?

I do have insurance but it only covers 80% and with all the kind of investigations and tests you do with this condition, the 20% I have to pay is quite a big amount…

Do you have anyone who can attend the ED with you if you are feeling bad?  A friend maybe or your husband?

I had a friend  come to the hospital when I went to the ED but by the time she got there, I was too drugged to care or know what was going on around me.   They just pumped me full of morphine and sent me home…as I told you earlier.

Do you have family here?

Just my husband and children.

Well you’re going to have to get your husband to go with you next time and push back on your behalf.  He’ll have to tell them that you’ve been to see a Neurologist, you’ve seen me and you’ve been to the ED many times before with these symptoms.  They will have to get the Neurosurgical team to come and have a consult with you.  If you are too ill at the time to speak for yourself, that will be your only option.

Yes, but I did that…and it didn’t work…

The only thing I can do for you is refer you to a Neurologist who can then do the MRI with flow study, a lumbar puncture and see what else could be going on. 

I’ve already done that when I previously saw the other Neurosurgeon.  He too referred me to a Neurologist who just put me on this drug and then that, going from anti-depressant to anti-depressant.  She even referred me to a Neuropsychiatrist but that didn’t help anything.  Her final words to me were “we don’t know how to help you”.

There’s really not much else that I can do for you either.  I’m a surgeon.  If there is something wrong that needs fixing, then I can do that for you but looking at you…you look fine to me…

Is it fine for me to be feeling nauseous and dizzy every day of my life or struggle to concentrate?

No…it’s never fine to be feeling like that.

What about the sleeping episodes?

The sleeping episodes, could be an indication that the flow through your ETV is slowing down but we won’t know that without an MRI…it especially might not even show if you are fine and not symptomatic.  There really is nothing else that I can do for you…

Well, I think that’s it then.  Thank you for your time.

I could refer you to the Neurologist if you like…

No thanks…I don’t see where that will get me.  Besides, I’ll probably just have the same outcome I had the last time I saw one…”

He closed the door behind me as I walked away…

 

I wish I had the words to describe exactly how I was left feeling after my consult but 25 minutes later, I paid my $200 for the consult and left the hospital after shedding some uncontrollable tears in the bathroom.  I think I went into a state of LOCK DOWN…

After I published the ETV Failure Guinea Pig post, my colleague asked me a question to the effect of how I’ll know if something is wrong with my ETV.  I responded: “If you don’t get a blog from me for a while, then I guess you’ll know something’s up“.  The quote in the picture of this blog somehow seems appropriate – in more ways than one.

Am I now allowed to feel like giving up?

Thank you for taking the time to read.

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Hydrocephalus: Gaining insight from my children

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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 pregnant with her at the time and underwent 3 operations over a 3 day period.  You can read all about it here.

My boys have very kindly agreed to be part of this blog segment.

Each of my boys are so different in their personalities. Jamie…so much like his Dad, doesn’t show emotion easily and prefers not to dwell on negative emotions. He prefers to think of me as being “fine” and would rather I not wallow in negativity. He will attempt to see the positive in a situation and eagerly points it out to me. (I suppose it’s his way of trying to make me feel better).

Gabriel on the other hand…this boy takes after my soul in so many ways. Very attentive, kind and displays such loving care especially when I am unwell. There are times when I will be feeling ill and trying to mask it.  I’ll notice him looking at me intently, observing and without prodding, he will inquire about how I’m feeling, if there’s anything he can do to help or even just offer to make me a cup of tea. It’s something which comes naturally to him and makes me proud. He definitely speaks my love language in so many ways…

Both my boys were rather young at the time of my diagnosis and when I had my operations. From the responses, I can see that they attempted to answer, especially Gabriel, with their current mentality. I could almost feel him immerse himself into the situation as if it were unfolding at present.

This is what they had to say:

Jamie-Ethan – Age 14 (Age at diagnosis and first OP – 5, Age at OPs 2,3&4 – 7)

  1. What is your relationship with me?
    • Son
  2. Do you know what condition I have?
    • Hydrochephales
  3. What is your understanding of this condition?
    • Something about a fluid in the brain
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • No
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • 7
  6. What was your initial reaction when you found out I have this condition?
    • I didn’t know what it was but now I have a better understanding, but still not sure.
  7. How did you feel when you heard I needed surgery?
    • I was very young at the time and can’t really give an answer.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Not sure
  9. Have you noticed any significant changes in my performance?
    • A little
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not sure
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • Not sure
  12. What frustrates you most about me having this condition?
    • Your memory frustrates me the most…not remembering things.
  13. Do you have any questions for me?
    • No
  14. If you could say one thing to me, what would it be?
    • Try to live your life and enjoy each day. No matter what happens, we’ll deal with it as it comes. If you need another OP and let’s say you don’t make it, then at least you know you fought and gave it your all. I’ll know that too…it won’t be your fault. Just try to enjoy the time you do have and the time we spend together.

How grown up is that?!

Gabriel – Age 12 (Age at diagnosis and first OP – 3, Age at OPs 2,3&4 – 5)

  1. What is your relationship with me?
    • You are my mother.
  2. Do you know what condition I have?
    • You have Hydrocephulas. 
  3. What is your understanding of this condition?
    • I know that sometimes you can’t organize things and you get lots of headaches.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Whenever you come home and you don’t look like you feel that well. 
  5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
    • I’d give myself a 9 because I always ask if there’s any way I can help.
  6. What was your initial reaction when you found out I have this condition?
    • I felt really bad for you because then I realized why you had some struggles.
  7. How did you feel when you heard I needed surgery?
    • I felt like your hydrocephulas was getting worse and I felt concerned. 
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I’m not sure. 
  9. Have you noticed any significant changes in my performance?
    • I haven’t noticed any changes 
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • I was worried that you might’ve gotten hurt.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • I don’t feel that I’ve changed towards you.
  12. What frustrates you most about me having this condition?
    • That it causes you a lot of stress.
  13. Do you have any questions for me?
    • No.
  14. If you could say one thing to me, what would it be?
    • I wish you didn’t have Hydrocephulas.

 

The only talk my daughter and I have about my Hydro, is when she notices the scar on my tummy or head after I wash my hair or she brushes it. She’s normally curious and just asks “Is that where the doctor cut you?” and, then winces as if in pain and gives me a cuddle.
All she knows is mum’s not feeling well at times and in turn gives me TLC with a lot of kisses and hugs. She’ll say things like, “Mum are you tired? You can have a nap mum you know (matter of factly)” or “You can just relax“…

I feel bad for my children. I’ll be honest and say, it wasn’t all that easy to read what my boys had written. If I had a lump before, then this broke the banks of my tears.

Unlike the previous posts, I had a face-to-face discussion with each of them separately to answer any questions but mostly to clarify anything for them. I started with Gabriel on a Saturday morning when we went for a walk, just the two of us.

I explained how I had developed the condition, how it makes me feel and what happens when I feel unwell. He is a sensitive child so I decided that, showing him photos of children with Hydrocephalus (who have not had treatment), would not be a good idea. So… I brought it down to his level and used the character, Megamind as an example. He smiled but immediately understood what I meant when I told him what happens to children with all that excess fluid pushing against the skull.

It was good for me to explain some things to him that didn’t make sense or were unclear because it gave me insight into what he actually knew and understood vs what he didn’t. Going forward, I have no doubt in my mind that he will always have my best interest at heart. His responses, showed me that he thinks about this more than I was aware of. My hope through all of it though, is that it doesn’t stress him out too much. I feel a bit guilty about this, especially since I realized that while I thought I was masking so well, that at least one person is fully aware of what’s happening at that time.

Later the same week, I had a chat with Jamie… 

As with Gabriel, I explained the things he too didn’t understand…where it all began, what meningitis is and the effects. He was too young to remember anything from diagnosis to the last 3 OPs, as previously mentioned.

When asked what he thought would be good support from him to me, he asked if he could provide support by helping out around the house and taking care of his siblings when I’m unwell? I said this was perfect and would certainly help. I further explained the importance of when I ask them to be quiet and when I need to concentrate, as these things affect me too at times especially when I feel unwell.

I explained why I’m always tired and need to rest. I told him about my sleeping episodes, my fears and asked him to be the backup when his Dad is not around. Check up on me when I’m not well, be alert and not take it for granted that “Oh, mum’s just sleeping“. I realize this might be asking a lot and placing a big responsibility on his shoulders. However, I’ve taken into account his personality and weighed up the odds of not telling at least one of my boys, about the possibility of going into a coma, in the absence of their Dad. He is very mature for his age and has proven to me, that I can depend on him when I need to. His brother on the other hand…lets just say, his sensitive soul guides me on this one.

Obviously my memory, or lack thereof, is a frustration not only for him but for me too though for completely different reasons. There is nothing I can do about this for him though…He’ll normally get frustrated with me and say things like, “I told you blah, blah, blah! Why can’t you remember“. Or “You’re always tired“.

In the end, he felt that he understood so much better and that so much made sense to him.

What have I gained from my children?

For starters, they cleared the misconception I have that no-one cares or understands. I’ve learned that breaking it down and explaining things in ways that they can understand or grasp is probably key. Also, we all react differently in any given situation…be it our personality, maturity level or how we relate to things, etc.

If I was worried before about who will take care of me one day when I can’t, then I can comfortably say now, I’m not all that worried anymore. It’s not about me placing responsibility wrongly on my kids but it’s my kids showing me in so many different and little ways, that they actually do care and given the right information (or instinctively), will act in my best interest. I’ve also learned that it’s OK to lean on them and not always feel like I need to be strong. They accept me in my weak moments and love me regardless…

This little exercise has definitely brought about a shift in our house for the better.
I am proud of my children and thankful for the lessons they teach me on a daily basis.
Just as any parent, I always want what’s best for my children. I will always feel the need to protect and shield them from any ill emotion or harm. This has been my biggest driver to date. However, the biggest lesson I’ve learned from my children is…I don’t always need to protect them, that they worry about me just as I do about them and more importantly that…IT’S OK TO NOT BE OK.

 

Thank you for taking the time to read.

Feel free to leave a comment, share this post and connect with me via any of the following:

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