Good Reads

Thursday, May 31, 2012

Making My Story, "It's all in Your Head," Into a Movie

I have put a lot of thought into wanting a movie made about my story; especially because there is already a book written about it, "It's all in Your Head."  I think that a movie made after my book would be wonderful, and it would reach so many more people than my book probably ever would.  I think a movie is an excellent way to get my story out there in a real life version so that people could "see" what I went through, as compared to reading about it.  I am hoping one day, that will be a reality.

When I sit there and think about a movie, I do think of things like; who would play me, my ex-husband, and my doctors.  For me, I'd like either Michelle Pfeiffer or someone like her, to play me.  I sometimes envision Keanu Reeves playing my ex-husband, and I am not sure who I would want to play my doctors.  Probably William Hurt to play my surgeon, but the neurosurgeon who followed me after my shunt and who allowed it to overdrain, I am not sure.  It would have to be someone who could portray his mannerisms just so - his rudeness, cockiness, non-emotional and non-sympathetic personality traits.

If my story were a movie, it would follow me from being diagnosed with my rare brain cyst, through surgery and how everything turned downward for me and I developed my Chiari and brain sagging.  It would follow me in trying to get medical treatment and being turned down and having to beg for help and medical treatment.  There is so much to my story that a lot would have to be cut-out to make it a two hour movie....but it could definitely be done and I think, should be done.  Especially because a book has already been written about what I went through and is out now; "It's all in Your Head."  I would want to hit the important, key points that made my story, well....a story.

The message I would want to convey to people watching my movie is that these brain cysts are real.  Chiari - it is real, and all the symptoms that go along with these conditions, are very real.  I want to convey to people that Chiari is a serious brain issue and that people living with this condition are strong people to have to contend with all they contend with on a day-to-day basis.  I would want to convey to people and doctors alike that these brain conditions are serious and they deserve the utmost care.

I have never seen a movie on such a medical condition and it would be great to see a movie made about what people with such rare brain problems live with. That way, people and doctors alike, could see what people with these conditions go through, live with, and in the end, hopefully understand them better.

Movies are something people can relate to even more-so than books because they can see how the story plays out, which helps them really relate to the people.  I am working on having a movie made, and maybe one day, it will happen.  And...maybe more people will see and understand more of what Chiari Malformations are, as well as brain cysts.  That is my hope and my prayer.

Wednesday, May 23, 2012

Your Brain and Balance Problems

If I had to say which of my symptoms bothers me most, I would have to say it is my balance. It's really hard to choose, because all of the symtpoms I live with bother me a great deal, but my balance problems really, really get to me. I have days where I feel like I should just "sit" all day and not even try to walk. And actually, the strange thing is that although my balance is bad enough when walking, it happens to be when I'm standing still and not moving at all, that it's the worst.

The brain stem is the governor of balance. And although I had problems with balance when I just had the Arachnoid Cyst, it got much worse when I developed my Chiari Malformation. My cyst was putting pressure on my brain stem, so I was already having enough trouble with balance. But once my brain stem herniated into my spine, WOW! I noticed a huge difference! I found that suddenly I was walking like I was always on a boat, rocking in the waves. I would have to reach out and grab onto something, or someone sometimes when I was walking, or when standing still. Over time, I got to where I would hold my legs different....tight. My knees would get thrown back to keep my balance, or I would cock a leg out to gain my balance when just standing there.

Bending over has become a thing of dread! I get so frustrated some days when I feel like all I do is bend over to pick something up. Those days are usually because I'm having a bad day of dropping everything that gets in my hands, and I have to bend and pick them up. Or my kids have dropped things on the floor that I'm having to clean up after them. I will bend to retrieve the item, lose my balance, wobble, almost fall over, miss the object I'm trying to get, then have to regain my balance and try again. It's a process - and an ordeal.

Once I've gotten whatever it is I was aiming for, it usually always makes me stop to think how people who don't have this problem, just don't know how lucky they are to be able to just bend over and pick something up off the floor. It's just a normal function, that most people don't ever put any thought into. I mean, why would they? Their brains work properly and they just do whatever it is they need to do without any thought. I have to think about everything I do today - every move I make. I have to put thought into every action, and it can be exhausting!

What I have learned is to slow down. I try not to do things too fast, but to concentrate on the task I'm doing so that I am more apt to do it right and without incident, the first time. Like emptying the dishwasher, for instance. That is a prime time for me to lose my balance and drop things. Unloading the silverware seems to be a chore that is very difficult. Because my hands don't work as well either, today, I tend to drop things easily when unloading the dishwasher - especially the silverware. I don't grasp things like I used to, so getting too many pieces of silverware in my hand is prime, dropping time for me. Then there's just losing my balance in general when bending over the dishwasher to pull things out. That is cause too, for dropping whatever is in my hand because suddenly I'm needing my hand free to grab onto the counter or something to get my balance. So over time, I have learned to only get a few pieces of silverware or one or two glasses at a time. I don't overload myself with items. It may take me longer to get the chore done, but at least most times now, I'm not having to bend and pick up items off the floor. I mean, there are still days that it just doesn't matter what I do, how I do it, or the thought and care I put into the task to avoid dropping things, I'm just going to drop whatever is in my hands, regardless.

There are things like balance therapy that I have talked to my doctor, my neurosurgeon, about. He recommended I try it, but I have yet to seek any treatment or therapy sessions. For some reason, for me and my case, I am just not sure that it will really help. I look at it as....until my herniated brain stem is corrected and not dangling down into the spine anymore, there is no therapy that's going to work. I could be wrong about that, I don't know. And I may opt to get the therapy or try it, one day. But for now, I just keep trying my tricks of standing in a certain way when standing still, stopping before I bend over to consciously think about what I'm doing and concentrate on the task before I just dive into the bent-over position. I make sure that I have my balance as best as possible, before I just bend and pick. Even so, I can still topple, but it does help.

I do still fall sometimes, too, and believe me, at 43 years old, falling down isn't pretty. If something takes me off guard and off balance enough that I can't recover from quickly enough, I have been known to hit the ground. Let me tell you, it hurts more today, falling as a grown woman, than when I was a kid. I don't know if I'm falling harder or if it's that I'm not able to fall as gracefully, like you do when you're a child. What I remember is that you tend to know how to fall when you're a kid, and just fall easier, more gracefully, something. Today, it is ugly, and it hurts! For a while, I seemed to have these constant bruises on my knee like I did when I was a kid.

If you suffer from balance problems with your brain cyst or Chiari, maybe you would benefit from balance therapy - I don't know. I just know that everyone is different and responds to different treatments differently. What may not work for one, may work for someone else. I do know that it is something to think about and maybe look into. Just because I don't think it will work for me, doesn't mean it wouldn't work for someone else. Like I said, I may follow through with it down the road. I have actually been thinking more about it recently.

Here is a link to learn more about balance therapy.

And if you suffer from balance problems with your brain cyst, or have a Chiari Malformation or other brain issues that create balance problems, try to just slow down and concentrate a little harder on your task and what you are doing. That's what I can recommend. You can't just "do" anymore. You have to think about what you do - every step of the way, and prepare yourself.

Although I still have my days, like I said, where it seems like no matter what I do, I am just off balance, I can usually make it at least a little bit better by slowing down and using more concentration on what I'm doing, and on my every move.

Today I also try to be more forgiving of myself and my inadequacies. It used to really bother me that I always bump into things, or lean, or topple. Today, I try to laugh it off more. I also find myself explaining to others - people I know, or even don't know that see me lean, wobble, and almost fall. When I see them looking and staring at me like maybe I've been drinking, I just flash them a smile and say, "Brain surgery." And then they usually smile, and they seem to get it. Many times I get a sympathetic look or an, "awwww."

Below are a few links to some balance exercises you can try at home. I do, do them sometimes and plan on getting into a more regular routine with them to see if I can do any good for myself with some balance exercises. I will post down the road about my experience with them and let you know if they do help. And story may help you get through whatever it is you are dealing with - "It's all in Your Head," now available on Amazon, through Barnes and Noble, Tate Publishing and wherever you buy books.

Links to balance exercises:





Monday, May 21, 2012

Contact Me

Hi all,

I have received some comments and responses to some of my posts, and am having trouble responding to them. If you'd like to contact me with questions or comments, you can reach me at

I enjoy reading your comments and would love to address your questions, so if you'd still like me to respond, contact me at the above email address and I will!

Thanks for reading and following my blog.  My goal is to be as helpful and supportive as I can to others dealing with brain issues; particularly, Arachnoid Cysts and Chiari Malformation.  I look forward to hearing from you.

Best wishes to all!


Thursday, May 3, 2012

Sleeping With My Cyst

Oh sweet sleep! Something that I have had to fight to get for a long time. I remember when I used to love to sleep. I loved to sleep in, and I loved to lounge in bed. How many years ago was that? A lot of years ago...probably since 2004 when my symptoms first began. For me, it became a chore, rather than a natural process. 

Through the years I have tried multiple things to help me sleep. I consider myself master of sleep tricks, although they aren't really "tricks" but things that many people do to help themselves sleep. I just have gotten good at trying, choosing, rotating, and combining.

One of the first things I did when I first became symptomatic with my cyst and noticed that my head ached at night, was to change pillows. I couldn't figure out why my pillow suddenly felt like a rock rather than the soft, fluffy thing I used to love laying on.

After an MRI discovered the large Posterior Fossa Arachnoid Cyst on the back of my brain, it made sense. It was putting pressure on the back of my brain and pressing on the skull, so my head ached when I laid on it. Once the cyst was discovered, it all made sense and I knew I had to do something about the aching, so I began shopping for a different pillow. I went through about 4 pillows before I settled on the softest, down pillow I could find. It used to be that I didn't like down pillows, now, it is my best friend and the only pillow I can and will use. I have had the same down pillow since 2004, and it goes everywhere with me - on vacation, whenever I've moved, everywhere.

Today, not only does my cyst cause me to lose sleep, but also my Chiari Malformation and brain sagging. So more than the pillow, I have had to adopt tricks for sleeping. A few of the things that have helped me, and they may seem simple and no brainers, but they have helped many people get sleep, and for many - they do work. My remedies are all-natural remedies because I cannot take medication easily. With all my neurological issues, I have reactions to medications and simply cannot take sleep-aids. 

If you have trouble sleeping, maybe you'll find that one of my tricks works for you, and helps you too.

  • Warm Milk - Most of us have heard that a cup of warm milk before bed helps you sleep. Well, believe it or not, it does actually work. Milk contains the amino acid, L-Tryptophan, the same amino acid in turkey that makes many people sleepy after a big turkey dinner. L-Tryptophan triggers the feeling of being tired and sleepy and can get you relaxed, like a natural sleep aid. It works for me, and it is one of my favorite tricks to use.
  • Warm bath or shower - A nice warm or hot shower before bed can relax tense muscles, relax your body, and for me, relax those sore, tense muscles in my neck that flare up due to my cyst and Chiari. A good 20 minute hot shower before bed can be enough to relax me so that I get more hours of sleep, rather than not doing anything at all before bed. It is especially effective when done in combination with another one of my remedies.
  • Heating Pad - Sometimes a nice warm heating pad on my neck or the back of my head in bed, can help me relax enough to sleep. I own one that shuts off automatically so that I don't have to worry about it lying there all night, turned on. The warmth will help me relax, get sleepy, fall asleep, and many times - stay asleep.
  • Chamomile tea - Matricaria recutita, or Manzanilla, is the main herb in Chamomile tea. This herb has been brewed and drank for centuries, especially as a sleep-inducer. It has a good flavor, is smooth, and about half way through a cup, I am relaxed and sleepy.
  • Meditate - Some nights before bed, I will turn the TV off, put on some soft, relaxing music, and I will meditate. I sit on the floor in Indain style, close my eyes, and zone out. I try to think of nothing, but rather just get in touch with my inner self. I picture myself getting sleepy and before I know it, I am. I have even been known to doze off, right there in my spot on the floor.
Some nights I may have to do a combination of the remedies: a warm or hot shower and a cup of tea, or warm milk. Or I may have my tea and meditate. It just depends on how wound up I and my brain are. It also depends on the kind of pain level I have, or if I am already a little tired.

Try a couple of these home remedies the next time you can't sleep. See which ones work for you. You may have to try it a few times to let your body adjust, or a combination of two remedies. I now am so glad I don't need medication to help me sleep, since medications and I don't mix well. I can get some sleep and not have any side effects.