Enemy In My Head There’s an enemy in my head, Slowly taking my life away, I can feel it all the time, It’s always with me every day. I am so tired of hurting, Tired of the constant pain, It’s weakening my body, It’s destroying my brain. There’s an enemy in my head, I’m feeling broken, sad and scared, New demons to face tomorrow, Constantly feeling unprepared. There has to be an answer, And there needs to be a cure, How can I take this pain? There’s so much I have to endure. There’s an enemy in my head, This battle going on inside, With each breath that I take, I face an emotional ride. Not ready to give up yet, This enemy I have to fight, Each day I’m reminded, That it is taking away my right. There’s an enemy in my head, Making me lose my mind, The path back to health, Something I may never find. I’m fighting a constant war, That no one else can see, Trapped like in a prison, Will I ever break free? {©2010 Jan Brooks} This is not exactly about me, but I wrote it from my point of view anyway! Someone said to a friend recently, that there was "An enemy in their body' (Meaning, cancer.) and I thought that was a good line...so I changed it to "An enemy in my head"...and I was inspired!
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Rollercoaster Ride I've been way down, And I've been up on top, A rollercoaster ride, When will it ever stop? I've fallen so fast, Into the depths of despair, It's a slow climb up, Never believing I would get there. I've been down so long, It's so hard to keep up the fight, An impossible struggle, Never knowing if I'll find the light. Getting back on top, Always seems to take forever, There's so much doubt, Sometimes I feel I will never. So many obstacles, Always seem to get in the way, No matter what I do, It's so hard to face another day. But I always fight on, And pretend I don't feel the pain, Put on a brave face, Take hold and climb back up again... {©2004 Jan Brooks} This is a poem I wrote when struggling with depression after my marriage ended. (7 years ago now!) But I have battled with depression and anxiety for most of my life...(especially before and after my AC and DW diagnosis!) I'm sure there are others who struggle with depression...especially when you or your child is going through this fight with an AC, or other related problems...
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Fear of the OR! I had been very nervous about having these Colonoscopy/Gastroscopy procedures, for a while. But, yesterday, when the time came, (after sitting at the hospital waiting for 3 long hours!) I walked into the Operating Room, and I freaked out! When I saw all the equipment and all these people standing there waiting for me…I had a panic attack! I just wanted to run! I turned away and covered my face with my hands…and I just said, “I’m tired and hungry, I can’t do this!” I did get onto the bed after a moment, and some coaxing, but I was crying by the time they tried to get the needle into my hand. That hurt like hell, and didn’t stop hurting even after the line was in. The nurse said to grip her hand while it was being put in, but I said… “I don’t think so, unless you want your hand crushed!” I just squeezed my eyes shut and went stiff all over…I am such a wimp when it comes to needles and pain! lol I don’t even remember any faces in the room, because I had my eyes shut most of the time! lol Thankfully I had full anaesthetic, and didn’t see, feel, or know anything until I woke up an hour or so later! My throat was fine afterwards, but my butt was another story…and it’s still sore now!
Thinking about it all last night, (No wonder I didn’t get much sleep! lol) I’m sure I have this fear of the operating room, (Looking back, I think my AC surgery, was probably to blame! lol) I guess my mind associates the OR with PAIN! Maybe not at the time, while I’m asleep, but definitely afterwards! Oh…I’m such a wimp…sook…coward…when it comes to Hospitals, and the OR in particular! lol
As for the results…I don’t know much yet, but someone said they didn’t find anything bad in my bowel/colon, (I did have some, as yet unexplained, bleeding!) but mostly confirmed what I already have (Hiatus Hernia.) in the upper digestive system. I will see the Dr. in 3 weeks. Hopefully I’ll get some answers then… ~Jan~
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We Have Something
We have something in common, With stories we can share, We truly understand, And we really do care.
We have something to discuss, How we suffer each day, What we have to go through, We have to find a way!
We have something to teach them, The doctors need to know, Take us seriously, We have the proof to show.
We have something they don’t have, The support of our friends, We will raise awareness, A fight that never ends!
{©2010 Jan Brooks}
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All In Your Head
“It’s all in your head”, They say it all the time, It’s so predictable, But it’s not their only crime. “Your symptoms aren’t real”, They have the nerve to say, You know too well they are, There’s a high price you pay. “It’s a harmless Cyst”, Maybe some of them are, But you know differently, The worst symptoms by far. “It’s not causing pain”, How would they really know? They don’t have to suffer, Compassion they don’t show. “It’s all in your head”, In a way, it is true, The cyst is there inside, And it’s slowly killing you! {©2010 Jan Brooks}
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Your Fight
In your head, In your brain, Like a vice, Gripped with pain.
Pressure builds, Pressure grows, What it does, No one knows.
Feeling faint, Feeling weak, Relief is, What you seek.
Needing help, Needing hope, Finding it, Hard to cope.
Curse the cyst, Curse the pain, Is your fight, All in vain?
{©2010 Jan Brooks}
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Thinking Of You
Thinking of you,
In times like these,
And your battle,
With this disease.
Thinking of you,
Suffering in pain,
Every day,
It’s so insane.
Thinking of you,
More than you know,
Because I care,
When you’re so low.
Thinking of you,
When times are tough,
You’re going through,
More than enough.
Thinking of you,
More than just friends,
And this battle,
That never ends…
{©2010 Jan Brooks}
They Could Never…
They could never imagine,
What you have to go through,
The depth of your pain,
And the disabilities too.
They could never understand,
How you struggle every day,
Just to live your life,
In a manageable way.
They could never comprehend,
Why you feel so much pain,
You hurt all over,
So hard to survive the strain.
They could never quite believe,
Just how much you endure,
What you really face,
Forever hoping for a cure…
{©2009 Jan Brooks}
Living With…
Living with this condition,
Is a continuous fight,
Having to live this way,
Isn’t fair or even right.
Living with uncertainty,
Never knowing how we’ll feel,
Each day is different,
No one believes this is real.
Living with complications,
Battling the constant pain,
Taking medications,
Getting around is a strain.
Living with limitations,
It controls all that we do,
Fatigue is consuming,
We struggle to make it through.
Living with this condition,
Is a struggle every day,
Often so overwhelming,
But we always find a way…
{©2009 Jan Brooks}
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Not Alone Anymore Back in 1996, when I was diagnosed with my Arachnoid Cyst…I felt so alone. Nobody understood what it was and what it all meant, I didn’t understand either. When I was told I needed surgery, I was petrified. I did have the support of family and friends. But I didn’t have anyone to talk to who knew what I was going through. I had lived with the symptoms for so long, but I didn’t know what to expect after the surgery. Every one thought and said I would feel great after the surgery, so I thought I probably would too! But after the surgery, the pain was worse, and recovery was slower than I expected. Nobody wanted to listen to how I felt, they expected me to be ‘cured’ instantly! Eventually, I recovered and the symptoms mostly disappeared. I got on with my life and tried not to think about it. But I had a scar to remind me. And still…I had no one to share my experiences with. But it’s only in the last 3-4 years that I have started searching online, and found groups with people who had been, or still are, going through similar situations to what I went through all those years ago. I have also educated myself more with information from the net, and from other people’s experiences. I started to feel comfortable again, sharing my experiences. But I also realized that…although my experiences were similar to some, they were different to many other people’s struggles today. I’m thankful that I had what I would now call, successful surgery, by a good Neurosurgeon, who took my symptoms seriously. I only wish that everyone else could get the help they need, instead of being treated shamefully by many in the medical world… ~Jan~
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I was reading some of my old poems this week, and found this one I wrote while I was in hospital after my AC surgery! I was in the hospital for 2 weeks, and it felt like a very long 2 weeks...like I was in prison! lol A Prisoner
I feel like a prisoner, Not allowed to leave this hospital bed, So hard to fight depression, When there’s this awful pain in my head. I feel like a prisoner, Being stuck here every lonely day, It’s so hard to pass the time, When the pain won’t fade away. I feel like a prisoner, Lying here in this empty room, Nothing to do or see, To try and push away all the gloom. I feel like a prisoner, I’m here and so far away from you, Never knowing when I’ll leave, And there is absolutely nothing I can do!
{©1996 Jan Brooks} I realized while looking back through all my old scrapbooks of poems...I have been writing poetry for 30 years! Yes, it makes me feel so old now! lol
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Something I have thought about often… You would think that a Doctor, became a Doctor to help people, in any way they can…that’s the logical reason…but some Doctors really defy logic! Also, you would think that a specialist Doctor, like a Neurologist, who is supposed to ‘specialise’ in neurological disorders and other related problems…would want to know about ALL neurological problems, not just the ‘interesting’ or ‘terminal’ ones. That would also be logical…but most of them defy logic as well! Is there any logic left in this world? Hmmm…I often wonder!
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Acrostic Poem ARACHNOID CYST Aching head Rising pressure Ataxia Chronic pain Hydrocephalus Neuralgia Optical problems Insomnia Disorientation Confusion Years of pain Symptoms so bad Too much to take… {©2010 Jan Brooks}
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RPA - 8:30pm - Wednesday, March 17 on Channel Nine Preview... Teenager Talya comes in to the Royal Prince Alfred this week complaining of tiredness, fainting and constant headaches. A nursing student, she knows only too well that the symptoms could be the first signs of something very bad going on in her head and sadly the scans confirm her fears: there's an arachnoid cyst expanding in her skull and putting pressure on her brain. Surgery to tackle this is possible, but risky and she's under no illusions about what could happen. She discovers that things don't always go to plan. Last night I watched a medical show on Australian TV, called ‘RPA’ (Royal Prince Alfred Hospital, in Sydney), (I recorded the show, and have been re-watching it today without distractions! lol) and one of the stories was about an 18 year old girl, who had an Arachnoid Cyst, actually it was like many cysts next to each other at the back of her head, (partial walls or 'cavities' in the large cyst) high up on the occipital lobe. You could definitely see how big it was on the scans! The female Neurosurgeon, explained it well, everything she was doing. They did fenestration surgery on the cyst. The cyst was quite large and we could see the CSF squirt out when they cut the arachnoid membrane, as the pressure was pretty high! The surgery went well, and the girl (Talya) was recovering well. But then a few days later she had a CSF leak out through the surgery holes (She had 2 holes in the skull, as they went through one and out the other to make the cyst cavaties communicate again!) They just repatched the surgery holes again, and put in a lumbar drain. But then, 9 days after the surgery, she was having a CSF leak again and the pressure had built up again. So, then she had to be taken back into surgery and have a shunt placement. (I got to see my first ever shunt surgery…plus the initial fenestration surgery!) But I guess I was disappointed it had come to that after the fenestration seemed to be a success. But she ended up with hydro because the cysts had got really big before she had the surgery. All in all, it was very interesting and informative show…the whole episode was. I never used to be able to watch surgery on TV, but now I seem to be able to watch some of it! I don’t regularly watch ‘RPA’, because my mother (who lives with me) refuses to watch that sort of show…she can’t handle the gory stuff! lol I’m just glad I managed to catch this episode on ACs!
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Sharing a few of my older poems of inspiration... Keep Up The Fight When you're suffering,
When you're in pain,
You've got to fight,
Got to get back up again.
When you're struggling,
When it all becomes too much,
You've got to hold on,
You've got to keep in touch.
When you're feeling down,
And nothing seems to go right,
You've got to be strong,
And try to keep up the fight.
When it all seems so hard,
Just to even survive,
You've got to let them know,
That you're still alive! {©2006 Jan Brooks} Thinking Of You Thinking of you, In times like these, And your battle, With this disease. Thinking of you, Suffering in pain, Every day, It’s so insane. Thinking of you, More than you know, Because I care, When you’re so low. Thinking of you, When times are tough, You’re going through, More than enough. Thinking of you, More than old friends, And this battle, That never ends… {©2008 Jan Brooks} I Refuse To Accept I refuse to accept, A life controlled by pain, Even on my worst days, My dignity I will retain. I refuse to accept, A life over ruled by pain, Even my weakest moments, My inner strength I will regain. I refuse to accept, A life consumed by pain, Even on my darkest days, My positive thoughts will remain! {©2008 Jan Brooks}
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The Fight We’re fighting for awareness, And fighting just to survive, We need more than compassion, Just to keep our hopes alive. We’re fighting for dignity, And fighting for peace of mind, We need only to be believed, Honesty is hard to find. We’re fighting for understanding, And fighting the ignorance, We need people to listen, To give us a second chance… {©2010 Jan Brooks}
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I love my scars I know I don’t have as many scars as other people might have. I have many little scars from my horse owning/riding days. But the one large scar on the back of my neck, that runs the full length of my neck, is the one I will always remember… At first, I hated this scar, because it was so noticeable, and I feared everyone was looking at it. But, with time and healing, the scar faded…although, it never totally disappeared. No scar ever totally disappears. This scar of mine was a result of surgery to remove (fenestrate) an Arachnoid Cyst. At the time, the surgery was necessary, and I felt that the resulting scar was a necessary thing, even thinking of it as a necessary evil. At first, I didn’t want to look at my scar, (I could only see it using 2 mirrors anyway.) and I didn’t look at it for a long time, and never took any photos of my scar at the time, (Not that I could myself anyway, someone else would have to do it!) now, I regret not taking any photos of the healing process… I was always self-conscious about my scar; I covered it by growing my hair longer at the back. If people asked, I would tell them how I got the scar, but not in a lot of detail…like I do now! Then there were those who didn’t want to ask, but I knew they were either curious, or just liked to stare...which did make me feel uncomfortable But, after a few years, when the scar was less noticeable, I got my hair cut shorter again, and was less self-conscious about it. But it wasn’t until after my life changed, and I became single again…I changed my attitude towards my surgery and scars, and other medical conditions. Now I wanted to talk about it, I wanted to share my experiences…and I also wanted to learn more about these conditions, and talk about my surgery. In late 2004 I bought a new computer, (one I didn’t have to share with anyone!) and decided to research all I could about Arachnoid Cysts, Dandy-Walker Variant Malformation, Occipital Neuralgia, Osteoarthritis, and anything related to these conditions. I also joined support groups, one by one, and read other peoples stories, before I got up the courage to participate and share my story. Now, after 13 years, I have accepted my Dandy-Walker diagnosis, accepted my Arachnoid Cyst and the successful surgery I had that made life so much better. I have accepted my scars as a part of me…a part of who I am!!! I love my scars… Do you love your scars? {©Dec. 2009 Jan Brooks}
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This is a 'story' I wrote last year, about the confirmation my Neuro gave me of my Dandy-Walker diagnosis a few years before. I don't actually mention the DW. but you know what I mean...lol Answers As I waited for my transport to come and pick me up, outside the hospital, I was thinking about what Dr. M. said to me a few minutes ago. I had just left my appointment with him, feeling both relieved and scared. I couldn’t believe I had finally got some answers! Great, I thought, but this is so overwhelming, it’s hard to take it all in… Finally my transport came and we headed off out of the city. Oh, I hate the city, I thought, I’ll be so glad when I get home! Yes, and no more appointments with Dr. M. for a while, well, not for another 3 months…great! During the 2 hour trip home, I couldn’t stop thinking about what Dr. M. said. It seems I’ve had this “thing”, this “malformation” all my life and never knew it! It’s so strange, but then it explains so much, and gives me answers to the symptoms, the problems, the minor disabilities, I’ve lived with all my life! I feel excited but scared at the same time, how can this be? I should be happy…oh, I am! I don’t have a terminal illness! I’m not going to die! Yes, I will live! I just have something “wrong” with my brain, it’s just a little...ummm…“different”! But how can I tell anyone else? How can I explain it? They wouldn’t know what it is, they’ve probably never even heard of it! They wouldn’t understand, it’s something that no one can see anyway… Ah, I don’t care, it’s my little secret! I tell myself as Dr. M’s words repeat over and over in my head. Wow, I’m still trying to get my head around this diagnosis, these answers I thought I would never find! But…sure, I have answers now. But…there is no cure for this “condition” or this “malformation”, as he called it! I have to live with it for the rest of my life….. {©2009 Jan Brooks}
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The Cyst There is something, Growing inside your head, You can feel it, And it fills you with dread. You describe it, But no one believes it to be, You’re not faking, You just wish they could see. It’s not just fear, That tells you something’s wrong, It’s the weakness, You’ve felt for far too long. The dizziness, It’s with you day and night, The constant pain, And fatigue you can’t fight. “Please believe me, What I’m feeling is real!” You need answers, Tests would surely reveal. You fought so hard, Until you made them see, You needed help, Something was wrong obviously. Then, finally, The scans did reveal all, Cysts on the brain, You had made the right call. Not cancerous, They said it was benign, Not to worry, With pills you would be fine. But it’s not right, Surgery should be done, You can’t bear this, The pain is not much fun. But the surgeon, Looked at you and said “No”, It’s too risky, Down that path, they won’t go. Didn’t make sense, Why would they leave it there? It’s causing pain, Why don’t they even care? It seemed too much, To cope with every day, But just maybe, In time they’d find a way. You had to hope, Someone would operate, Remove the cyst, Before it was too late! {©2010 Jan Brooks}
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A Discovery
It was over 10 years ago,
I became mysteriously ill,
Seems so long ago,
But the memory haunts me still.
First it was the headaches,
That gripped my head so tight,
Then the dizziness,
Affected my balance and my sight.
Unexplained symptoms,
Led to test after frustrating test,
So many doctors,
And specialists who thought they knew best.
Many months later,
A discovery was finally made,
After an MRI,
My neurosurgeon told me the price I paid.
A growth in my head,
They called it an arachnoid cyst,
It wasn’t cancerous,
But something the tests easily missed.
Only one solution,
An operation had to be done,
To remove the cyst,
But the waiting was certainly no fun.
But the horrible thought,
Of an operation on my brain,
Filled me with such fear,
That it almost overruled the pain.
It was so risky,
Brain surgery would always be,
I was in good hands,
My neurosurgeon reassured me.
After the surgery,
The pain felt so much worse,
Was it all worth it?
Time would be the usual curse.
It was successful,
At least that’s what he told me,
The cyst had been drained,
In the future I would be pain free.
But healing took time,
And my recovery was slow,
It seemed like forever,
But the pain did eventually go.
Only scars remained,
To remind me of the fear,
A moment in my life,
That I hope will never re-appear…
{©2007 Jan Brooks}
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My Story…the short version! lol (Revised Jan. ’10)
As a child I had poor vision, and my co-ordination and balance wasn’t all that good either, but 40+ years ago, no one knew what the problem was, (There were no scans back then.) and no one seemed worried about it. They said my co-ordination and balance would get better as I got older. (It did improve to some extent.) They were only worried about my vision! I had surgery on my eyes at around 3 years old, but it didn’t improve my sight at all, I am still very short-sighted, and the right eye has less vision than the left eye, and also the right eye is turned outward, but before the surgery, it was turned inward! .
It wasn't until late 1994, I developed horrible headaches and dizziness, and after taking nearly 2 years, seeing different Doctors, and trying to find answers, I was finally referred to a Neurosurgeon. He sent me to have an MRI in July '96. The MRI showed that I had an Arachnoid Cyst, and that I had Dandy-Walker Variant. But I wasn't told much about the D.W.V. until years later. It seems my neurosurgeon didn't think it was bad enough to worry about, so never really said anything! All he was worried about was the cyst, and its large size! I had surgery to fenestrate the cyst in Oct. '96. Recovery was slow, but thankfully, I didn’t need more than the one surgery.
Then, about 6 years ago, I started getting headaches and dizziness again, and I feared the cyst had grown again. But after more MRI's and other tests, all was fine there, I was told. I was eventually diagnosed with Occipital Neuralgia - nerve pain. (The left occipital nerves were possibly damaged during the surgery, it seems, when my neck was opened up!). After trying many different med treatments for the O.N., I finally found relieve with the nerve blocks…and I still do!
It was mentioned on my report at the time of the O.N. diagnosis, (I got a copy this time!), about the Dandy-Walker Variant. After I researched D.W. on the net, it all started to make sense...about the vision and balance problems I've had all my life!
I then had tests in Mar. ‘08, because my balance was getting worse, and I felt dizzy all the time, and it was confirmed that I have a "Central Balance Disorder, consistent with Dandy Walker, and with previous posterior fossa surgery", plus my O.N. contributed to the dizziness as well. My balance was reasonable for many years, but now I've been told, as I get older, it will slowly get worse!
It wasn't something I wanted to hear, as I’m only in my early 40’s! But I realize now I am lucky I don't have the more severe forms of D.W. I have read about in recent times…
{©2010 Jan Brooks}
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