Good Reads

Tuesday, December 25, 2012

Merry Christmas!

As this year comes to an end, I hope that all of you had a very Merry Christmas, and will have a Happy New Year!  Any big plans?

My Christmas was low-keyed with just me and my boys.  My ex-husband got the boys for the second half of Christmas today, and they are spending the night with him.  I hated giving them up for any part of Christmas; however, I was so beat at the end of today, that a night to myself was kind of welcomed.  I just don't have the energy I used to.  My Chiari and especially my brain sagging, sap the energy out of me.  I feel as if I am running in 1st gear all of the time.  I can never get up enough speed to get me really going, and if I do get some energy, by small chance, it never lasts. Not long anyways.

But all-in-all, Christmas was nice.  It was low-keyed and it was spent with my boys and that's all that matters to me.  Did I feel real well today for Christmas?  The answer is no.  I was worried because this morning started off with me feeling pretty lousy.  My head hurt - it felt strange, and when my head feels the way it did this morning, it affects every part of my body.  I feel like every group of my body's organs is working on its own schedule, on its own time, and they all have a mind of their own.  I will feel strange and and not myself at all.  Well, not my old self, anyways.

These strange feelings I experience may subside, or they may stick around all day -- leaving me to struggle through my day, and struggle to get done, what I need to get done.  I worried about that this morning, with having so much to do to get ready for Christmas with the boys, and it wasn't until after noon, that some of the symptoms lessened.  But at least they did lessen and I was able to get Christmas presents opened, dinner completed, and we had a nice day; all-in-all.

So, for small miracles, I am thankful.  Every day I try to find one thing I am thankful for, and today, I was thankful that I made it through Christmas day.  I was able to give my boys a fairly good Christmas with no major incident.  But I am going to be honest here, as much as I love the season, I have to say.....I am glad it is over!  All the preparation it requires; shopping, cooking, decorating, etc.  So, another year down, and now -- I am looking forward to next year.  I think it will be a better year.  I am counting on it.  And for all of you -- my followers, I pray that you too, will have a wonderful year this coming year.  I pray it will be full of promising things and above all -- good health!

Monday, November 26, 2012

What's it Like to be me?

Life in general can be tough, but especially when you have any form of a disability.  Disabilities of any kind can make life a challenge; and for me, I live with multiple issues/debilitating issues, and face multiple challenges.  I suffer with multiple physical disabilities that affect my mind and my body.

It's hard enough to live with one or the other of the disabilities. But to have both, has been a mental and emotional challenge beyond any challenge I've ever faced in my lifetime.  There have been days where I have thought, " How do I go on?"  "If I were to happen to live into, say, my seventies, how would I be able to do that?"  "How would I get through, day-to-day for the next thirty years, living like this?"  So, because I have no real good answer for that....most times, I try to put that thought out of my mind.  But every now and then, because I'm hungry for answers, I will ponder it.  I think about it and try to imagine the next thirty-plus years of my life, living with the conditions that I do, and I get very nervous.  Scared even.

Of course there are physical symptoms and issues related to my cyst, my shunt, my brain sagging, and the Chiari.  But what I have found, over the years, is that there are days that the mental affects of my brain cyst and other brain issues are possibly even harder to live with than the physical disabilities.

Unless you have been there and lived with anything remotely close, then it's really difficult to fully explain and describe, what it is I live with, so that you can get a full picture, and truly understand.  But I am going to do my best.  I would like to describe what a day in the life of Maria is like, with "brain symptoms," and mental inadequacies:

- Disoriented - When I wake up in the morning, I feel disoriented.  My head aches, I feel dizzy, disoriented and out of sorts.  I cannot think clearly, see clearly, and am very off balance.  What is going on is that my brain has been in the lying down position, so once I'm up, it begins to sag and I can actually, physically feel it dropping - slipping downward.  It takes about an hour before I start to feel more connected with reality.  Some days I start to feel quite a bit better, while other days, even waiting the hour or so doesn't help.  I will continue to feel disoriented and "not good," after I've waited my hour or more.  When this happens, I can pretty much count on it not being a good day throughout, all day long.

- My balance - My balance is so bad that I spend the greater part of the day fighting to stay upright.  I bounce into walls, door frames, counters, you name it.  If my balance is really bad that day, I have to pick and choose what is important to do - such as, picking things up off the floor.  If it's something that can wait until my boys get home, I will choose to do that because I don't want to risk falling over or bumping into things, etc.  Going up or down stairs will be a major ordeal and something I have grown to dread with a passion.

- Dropping things - I drop things, a lot.  If my day isn't going well, then I will usually dread even the slightest task; such as putting dishes away.  I find I drop things more on some days than others, but every day I drop multiple things.  I hate days that I am so clumsy because even showering is a big task, not only with my balance, but dropping shampoo bottles, my razor, and of course....the soap.  On bad days, I will spend half the time trying to pick up the items from the shower floor, so showering can take me longer.  I will have to lean on the shower wall to wash and rinse my hair and hold onto everything extra tight.

- Pain - Pain is something I have most every day of my life in one way or another.  Some days are worse than others.  I feel fortunate that with all that I live with, my pain level is not that horrific, however it "is" pain nonetheless. So for pain, when I have it, I will take some Motrin or Tylenol.  Nothing strong.  Nothing powerful.  Usually either one of those will give me some relief, but usually the over-the-counter pain meds don't take the pain completely away.  But it will at least make it bearable.

- My vision - This is another very annoying symptom for me.  I have developed very blurry vision -especially in my left eye, over the past few years.  Driving has become a task I dread because if I forget my glasses, I will have a very hard time seeing, and some days are worse than others with how well I see.  And with driving comes reading street signs.  That is also very difficult for me.  The world around me, in general, is blurry.  I have to fight to see street lights and what color they are. The TV will look blurry to me, and more.  It is one of the biggest problems I deal with.  I find myself closing one eye a lot, just to see straight.  Yes, my vision definitely bothers me - a lot!  I may look into laser eye surgery in the near future.

- Tired - Sleepy - I get sleepy easily and especially in the middle of the day.  Suddenly I will feel like I need a nap and I have to take one.  I used to never be a nap person, but for the past year and a half or so, I have needed a nap or two during the day for a while and when it hits - it hits.  I will have no control over my sleepiness.

There are other issues, but these are the most prominent and most annoying.  Sometimes I hope and pray they get better, and other times, I just work on trying to accept everything, and accept who I am today.

Whenever I feel I've accepted myself and my shortcomings, I will have another bad day that makes me realize I haven't accepted my new self, because I feel myself and notice myself getting really upset at, "me."  Then I have days that I feel ok about who I am today.  I am ok with my disability, for the most part....but there are those days when it really hits me hard that I am no longer the person I used to be, and I will mourn the loss.

Monday, November 12, 2012

Get Pain Relief with a TENS Unit

Many people deal with pain on a regular basis. Pain on a regular basis is chronic pain. Pain that has s sudden onset and lasts a shorter time is acute pain. Chronic pain can be some of the toughest pain. It can be harder to deal with mentally, it can be toughest to live with, over acute pain, because it's pain on a regular basis. It can also be some of the toughest type of pain to treat.

If you have pain issues; whether it is from a medical condition, an accident, or another reason, your doctor may suggest you use a TENS Unit (Transcutneous Electrical Nerve Stimulator), to help treat and control your pain level.

TENS Units send electrical impulses to specific areas of the body to block pain signals. The electrical impulses are mild, but they have the ability to block pain messages from being transmitted to the brain. They also may play a role in raising the level of endorphins released by the brain.

Your doctor may also order a muscle stimulator, or a combination unit. At LGMEDSUPPLY, you can find multiple types of muscle pain reliever, known as a LG-TEC Dual Combo TENS Unit and Muscle Stimulator. You can also find TENS Units that are pocket sized, portable, and battery-operated - they go where you go.

From a TENS unit, the electrical impulses are mild, but they have the ability to block pain messages from being transmitted to the brain. They also may play a role in raising the level of endorphins released by the brain.

You can visit LGMedsupply online to learn about the different products and find the one that will best give you relief from muscle pain and soreness. You can also visit the online customer blog to learn more about the products and how they have helped other customers.

Wednesday, October 31, 2012

Happy Halloween! Moving again!

So, it's Halloween night.  I hope everyone is having a spooktacular Halloween!

My boys went trick-or-treating with a friend and are home now - getting ready for bed so they can get up and go to school tomorrow....on a sugar high!  Tomorrow I have to go look at this house that I am going to rent, to show my dad, who is here in town until Friday.  I am moving into this house December 1st  - and thank goodness!  I have been in this condo since the first of June and it has proven to be very tough for me to live here!  Just very tough with my physical circumstances. 

First of all, it is a condo on the second floor.  When you come in the door, you immediately go up a lot of steps to get to the living area.  With my health and my condition - steps are no longer my friend.  They are most definitely my enemy!  I have to go up.....and down them very slowly.  My balance is horrible these days, so I have fallen down them, and "up" them.

It's also difficult for me here with my dog, Murphy.  Murphy is a big standard poodle, and because I cannot walk him, due to his strength and my balance, I put him on an "in-the-ground" leash so that he can walk around the yard on his own.  But I have to be out there with him - and I trip on his leash easily, he doesn't listen 100% of the time, and it's just difficult.  Other issues here too, and am just weary.  The new house will have a fenced-in yard, and the boys will have their own rooms - they have to share here.  One of the biggest positives is that there will be no one living below me there, like there is here.  With 2 boys, you can imagine what that is like for the elderly lady living below me.  She calls time-to-time to tell me, "I don't know what the boys are doing, but it is soooo loud!"  : ))  Frustrating!

So, anyways, am very much looking forward to having a regular house again.  I don't know why I chose this place to begin with.  Not a smart move on my part.

Moving is difficult for me too, though.  All the packing, collecting of boxes, getting newspapers to wrap things in.  Just sooo much work and soooo little energy.  Especially because I just went through this move back at the beginning of June.  And.....moved 3 times in less than 2 years.  This will be my 4th move in less than 3 years.  Wow.  Ridiculous!  Not good for someone with all the medical problems I have.  I do all the packing and unpacking myself, and I am flat out of steam!!  And....the cost of moving!  That is huge for me!  I am not rich - just the opposite really.  So moving expenses are killing me!

But, all-in-all, I am just so thankful I found this house!  It is a blessing to have found it!  It is just so conducive to my health and my situation.  I hope it ends up being and staying that way for me and the boys.  I hope that I am finally satisfied and happy there.

Well, will update as the move happens.  Oh, and am still waiting to hear from disability.  I have been medically approved for disability.  Now, they are reviewing my financial situation to see what I qualify for......if anything.  I better get something.  That's all I know.  I need it and I have invested a lot of time and energy to get it.

Well, Happy Halloween.  I hope everyone had a safe and fun, Spook night!

Look for another posting real soon.

Saturday, October 6, 2012

Getting Comfort With the Foot Sleep Guard

Sleeping comfortably goes beyond having a comfortable mattress. Getting a comfortable night's sleep can be related to keeping your feet and legs comfortable, too. Many people suffer with conditions related to their feet and legs, but many times, they do not put any thought into keeping them comfortable when they sleep.

There are many medical conditions that can cause your legs to ache, even hurt at night while you try to get a good night's sleep. You can have something as simple as a muscle pull or strain, or you may have a much more involved condition, such as:

  • Varicose veins
  • Myalgia
  • Restless leg syndrome
  • Osteoporosis
  • Fracture or break
  • Arthritis
  • Vascular problems
  • Gout
  • Knee or hip replacement
  • Diabetic conditions
  • Parkinson's
Whatever your medical condition, you want comfort when you sleep. Although comfort is very important, so is keeping a healthy blood flow to your legs and feet. Depending on your condition, it may even be critical.

You can achieve healthy blood flow to your feet and legs as well as achieve a level of comfort to help you sleep, with the FootSleepGuard. The FootSleepGuard is a sturdy lift for your blanket and/or covers. It helps you to get good flow to your legs and feet, as well as keep them from becoming irritated, aching, and sore with covers that may constrict or obstruct blood flow.

Unlike many products that are fixated to the bed, the FootSleepGuard is not. FootSleepGuard sits on top of the mattress, and can be moved or removed easily. It is lightweight, yet sturdy. Made of PVC piping, it can hold up the heaviest of covers and Sized to roughly take up one-half the width of a queen size bed so that your feet and legs have ample room while you sleep. Other great benefits are:

  • Blanket lift
  • Sturdiest blanket support and foot cradle on the market
  • Quick and easy handling
  • Collapsible and removable from the bed for easy daytime storage, with the push of one button
  • Will not disturb your partner’s sleep
  • Great for pillow-top mattresses or any other type of mattress
  • The FootSleepGuard will fold flat and travel with you in an overnight bag
  • Reasonably priced
  • Easy to clean and sanitize
  • Works for all mattress types - including pillow top
There are many reasons why you should try the FootSleepGuard: It is easy to clean as well as it is easily folded up to store at home, or to take with you when you travel. In the set up position, it consumes about one-half the width of a queen-sized bed.

Give your feet and legs a good night's sleep, too, with FootSleepGuard. With FootSleepGuard, you can rest peacefully, and painlessly while your feet and legs are pampered. So why not give your feet and legs years of comfort while you sleep, with the FootSleepGuard?

Sunday, September 16, 2012

Brain Cysts Have Walls

My second MRI wound up being a regular, full-length MRI.  I had hoped it was going to be a shortened version but it was not.  I don't do well in MRI's - not so much because of the small space and claustrophobia, though that is bad enough.  But more because MRI's require you to lie on your back so long, which means on the back of your head.  For me, that is torture.  All that pressure on the brain stem really creates unnerving feelings - or in my case -non-feeling.  I go numb, get dizzy lying on my back and just feel all-in-all, sick.

In any case, what the doctor was seeing was enlarged trigeminal nerves.  He said, after reviewing my films, that for me that is to be expected.  Other than that, there was nothing major, or out of the norm for me, detected or seen.  The only thing is, is that my cyst has rebuilt its walls.  All the issues I've been dealing with the past couple of years may be due to my walls being re-built.  So, this means that there is a chance I will need to have a repeat of my first surgery I had back in '05, to knock down all the walls and get the cerebral spinal fluid communicatig or flowing with the rest of the cerebral spinal fluid.

I am going to go down to a pressure of 140 on my shunt to see if it will help with the symptoms I've been living with and mentioned in my last post.  That will happen Wednesday.  If in about two weeks there is no change, then we will talk about scheduling a Cisternogram.  A Cisternogram is a test to check the flow of my CSF.  He will be able to see the dye they inject into my spine, flow into the cyst and if it gets hung up in the cyst, then my doctor will know that the walls are trapping fluid again, which causes the pressure.  Cisternograms - just another test that I do not handle well and truth-be-told, I dread that almost as much or more, than the surgery.

If this is the case, another surgery will be warranted.  On one hand I am so thankful nothing major was discovered - no new cysts developing or other issues with the sagging of the brain or my Chiari.  On the other hand, it is disappointing.  No one wants to think about having brain surgery.  I draw a little comfort from the fact that I have been through it before, so I know what to expect.  On the other - I've been through it before, so I know what to expect, therefore I am hoping and praying that surgery is not in my immediate future. 

Wednesday, August 22, 2012

Latest MRI Reveals.....

I haven't had an MRI in about three years.  Due to lack of insurance because of my divorce, I couldn't get one.  I have known for a while that I really needed one, especially because I have been experiencing some strange symptoms over the past couple of years, and I finally just got one - just over a week ago.  Oh boy!  It was bitter-sweet.  I was glad to finally be able to have the screening I knew I needed.  It's the one test that tells my doctor what is going on in my head.  On the other hand, I was nervous, because I have been having and living with some strange symptoms over the past about 2 years and I was afraid to have the MRI - fearing it would reveal something tragic.  Well, I just found out that it did reveal something, but what it means....I don't know yet.  I have to have another (partial) MRI next week.

What I have been living with the past couple of years is a lot of dizziness - more dizziness than I have ever lived with since my problems with my cyst started.  I have also been unable to sleep on my left side or back, because something strange happens when I do.  I wake-up to a strange feeling - like a pair of cymbals crashing together in my head when I sleep on either of those sides.  Then there is a sudden burst of, spinning dizziness.  I also get extremely weak and have zero balance - unable to walk at all.  I have to sit there or lay there unil it passes, before attempting to walk.

My balance has grown extremely uncoordinated over the past couple of years.  Going up and down stairs is like walking the tight rope for me.  I cling to the handrail for dear life.  Another thing I've been living with is that I feel totally disconnected with the world.  I don't feel like I am in the moment.  I feel disoriented.  I feel disconnected and out of the loop.  For instance, driving around the town I've lived in for the past five years will look totally foreign to me.  I have to use my GPS everywhere I go....even areas where I go all the time.  I haven't been able to exercise in the past couple years....and I have always been into exercise and keeping fit.  Now, I cannot muster up the drive or energy, or the balance to even do a light walk on the treadmill.  It physically bothers me to exercise, as well as it seems too much like such a chore - I have zero desire to exercise at all.  Very unlike me. 

Something else that started when all these other symptoms started is that when I eat, I will suddenly feel extremely tired.  I cannot keep my eyes open.  It reminds me of when I was in the first trimester of my pregnancies, where I would get so tired out of the blue that I would have no choice but to close my eyes.  Now, same thing except for it's right after I eat.  I have to take a nap at least once a day, and sometimes twice - but especially after I eat.

It has been unnerving and frightening.  Many times I chalked all of this up to being under a great deal of stress due to my separation and divorce.  I tried to blow it off and tell myself that I am just under duress.  I've also had to move three times in two years due to my divorce, so just a lot going on in my life.  Well, turns out, that it could be that it isn't all due to the stress of the divorce. There could be  something else going on, just don't know exactly just "what" yet.

So, my MRI I had last week revealed something -  a new development.  The problem is....I don't know "what" it all means yet.  I was called by the nurse the other day and she explained that the doctor - my neurosurgeon, has spotted something.  She says my MRI showed that my trigeminal nerves are inflamed.  But "why," is the question.  I have a repeat of part of my MRI next week so he can get a better view, and I am very nervous.   I go Thursday the 23rd to get it repeated and to see what is going on. 

Boy!  When it rains it pours.  I really thought I was past all of this.....having things happen with my brain, new developments, and issues.  I thought after my last surgery and a few strange things happening a few years back, that I was home-free.  Apparently not.  I guess I was wrong and too quick to assume.

I am trying to remain optomistic and tell myself that whatever it is, it can be treated, taken care of, and resolved.  I know God is on my side.  I know that He knows that I want to keep working doing my writing and marketing my book.  I want to make a difference for others.  Especially because I do not feel even close to having my work here - done.  There is so much more I want to do.

Prayers are needed and positive thoughts are welcomed.  I don't always get nervous about things because I do trust in God.  But after all I've been through over the past few years, now, I am a bit tired from all of this.  I'm getting physically and emotionally worn out.  But....I am not ready to give up yet.  My boys need me, and I know there are countless others who need me.  They need my story and my support to get through what they are going through.  I am hopeful that this is just a small blip in the big picture of what is still yet to come for me.

I will update again, next week, once I get some cold, hard facts on what this is my doctor is seeing.  Once I hear what it is that is clogging up my brain and my life - again.  I am hoping it is an easy issue to resolve.

This brings it all home to me - again, how fragile life is.  One day you are living life, and the next, you can be fighting for it.  So take care, all of you who read and follow my story.  Don't let a day go by that you don't give thanks for your life. 

God Bless!

Saturday, August 11, 2012

Muscle Pain Relief with LG Med Supplies

If you live with muscle problems; whether it be pain or the need for muscle rehabilitation, you can find the product that suits your needs at At, you can find TENS Units, LG-Tec Dual Combo Tens Unit and muscle stimulators, combination units, whatever you need to aid your muscles to be healthy and pain free.

Injury to the muscle can be painful. Once an injury occurs, the muscle needs to heal and rebuild. One way to help it heal, and to reduce pain in the muscle as it heals is with a Tens Unit. A Tens Unit produces electrical currents that encourage healing. The electrical currents produced are mild, yet strong enough to prevent pain messages from being transmitted to the brain. This can raise the level of endorphins (natural pain killers produced by the brain). They can be used for both; chronic and acute pain.

Muscle Stimulators increase muscle tone, as well as re-train and rebuild muscle groups. LGMedSupply supplies all the muscle rehabilitation machines you need. You can visit LGMedsupply Online at They keep all of their items in stock and guarantee their products. If you need additional information, you can visit their blog at: online customer blog.

Tuesday, July 31, 2012

Where There's a Will, There's a Way!

When a long term or permanent medical problem butts its way into your life and takes over, it is easy to forget who you once were. Suddenly you are thrown into a world of doctors, running to doctors' offices, maybe medication, symptoms that have you baffled, medical bills, and much more.

Quickly, you can forget who you used to be before your medical condition took over your life. You forget what it's like to feel good, "normal" for lack of a better word. And you forget what it is like to live life without worry.

You just want your life back. But you soon realize that your wish may just be a pipe dream. You realize that you may be destined to always deal with these things and you start to think that you will never again, know what it's like to go to bed at night; carefree, with a worry-free mind. But that doesn't have to be the case. Even after being diagnosed with a chronic medical condition that has dumped its symptoms in your lap, you can take charge and still be in control of your life.

Neurological problems and symptoms are some of the worst their is. With the nervous system controlling everything about your body, your body can suffer greatly when you have neurological deficits. Especially when the brain is involved. Everyday, "normal" functions suddenly become difficult.

When my brain began to change under the weight and pressure of my very large brain cyst, one-by-one, normal, physical functions began to slip away - one after the other, and faster and faster. I was quickly becoming a shell-of-a-person. And as things progressed and my brain began to slump, and my brainstem sunk into my spine, I developed neurological problems and symptoms I never knew I could develop. I felt horrible. There were days I didn't feel like I could get out of bed. There were days I didn't.

I remember, during those days, looking at my boys' very young faces - then just five and seven, and I would worry that I might not be able to watch those little faces grow into the faces of mature, young men. There were days that I was just sure, five and seven were the last ages I would witness my boys getting to.

Then, one day, I vowed that that would not be the case. I would fight as long as there was a fight left in me. I would not curl up into a ball and let this brain cyst, and Chiari Malformation beat me. I vowed that I would find an ounce of energy, each day, to find my purpose here in this world, and that purpose was to be a mom. Soon, that ounce grew, and it became an even bigger purpose. It became my will.

Everyone has a purpose, and everyone has a will. Everyone can find an ounce of energy to donate toward themself. Believe me.....if I can do it - you can do it. Don't give up! Whether it be that you just have the energy to pray - PRAY! That is a very good place to start.

Monday, July 23, 2012

Medical Billing with UB-04 Software

In the field of medicine, there are many types of professions needed to keep the field operating smoothly and efficiently. One field that is needed, is the field of medical billing. Medical billers are people that bill insurance companies and patients to make sure the doctor gets paid, and patients only pay the portion they are responsible for.

Medical billing has become a popular field over recent years. There is plenty to learn with the field ever growing and becoming more complex. It is a field that has not only grown, but has diversified and changed over time.

Medical billers use software geared specifically for billing medical claims. One such software is the UB-04 Software. Depending on the type of billing you need to do, UB-04 Software has you covered. UB-04 bills for medical bills and dental bills.

With UB-04 Software, you will get multiple areas of the medical billing process right at your fingertips. You will get:

  • HCFA-1500 EDI Clearinghouse
  • UB-04/CMS 1450 EDI/Clearinghouse
  • HCFA-1500/CMS 1500 Fill and Print NPI
  • UB-04/CMS 1450 Fill and Print
  • Dental Association Fill and Print EDI
UB-04 Software makes medical billing easy with help boxes on medical billing forms that act like tutorials, pre-purchased forms, batch printing, automatic charge calculations, autofill for repetitive transactions in rows.

The ease of use with UB-04 claim forms for your billing needs will add to your precise accuracy and get greater, more accurate returns.


Visit:, to review what UB-04 software has to offer.

Friday, July 6, 2012

Recent Podcasts

Hi all,

I have recently done two Podcasts and want to share the links with you.

The first was:

And the most recent, just a couple of weeks ago is:

Both talk about my condition, my book, and where I am today.  Check them out.  Just log in and you can listen to them.  Then pass them along.



Friday, June 8, 2012

How Does Your Spouse Deal With Your Chronic Illness?

Living with an Arachnoid cyst is tough. It tests you emotionally, mentally, and maybe most of all, physically. When I started having symptoms from my cyst, although subtle at first, I knew something was wrong. I just couldn't think straight. Before long, not being able to think clearly, quickly spiraled into many other unnerving symptoms that left me feeling like a shell-of-a-person.

In the beginning, things stopped making sense to me - processing what people said to me became difficult. I found I was having to really concentrate hard on what people said to me and trying to figure out how to respond to them. Conversations no longer came natural to me. My responses were usually off-topic. I would give strange answers which were usually followed by strange looks. Like I was crazy. It was really embarrassing to my husband. But it was especially embarrassing to me. I could tell that what I had just said, wasn't right.

Soon after, normal, everyday tasks seemed more foreign than natural; like, driving, grocery shopping, and cooking. I would have to think really hard about what I was doing and what I needed to do next. Following directions, steps, or anything that required concentration was quickly fading.

My husband, who is no longer my husband as you may know or realize, grew to where he no longer knew how to support me. He got to where he wasn't sure what he should be doing, and he wasn't sure who he should be taking me to see. He was at a complete and utter loss. I tried to steer the boat as much as I could, but with little thought process left, I relied on him, as well as family members to help me figure it out.

By the time I found a neurosurgeon in Phoenix who was willing to review my MRI's, if I mailed him copies, my thought process was so poor that I hardly knew who I was. The world around me seemed more like a cartoon-world, as compared to the once, vibrant and lively world I had once lived in. I was scared and confused. And all I could do was pray that this new doctor would treat me - help me.

My husband stood by me the whole way through. He let me cry when I needed to. He listened to me continuously as I complained about my situation and how I felt. He reassured me when I was scared - scared about what was happening to me, and scared that I wouldn't get the treatment I needed to ever be able to think clearly again.

There were many nights that all I wanted was for him to wrap his arms around me and hold me so that I could feel his strength, because I felt so weak and vulnerable. And he would. He would hold me while I fell to pieces.

My husband at the time was there for me, 100%. He was at times, just as confused as I was; not sure what to do - what to do for me, or sure what the outcome would be. But still, he was there. He went to all my doctors appointments with me. He also tried to learn about the type of cyst I had. He asked a lot of questions to the doctor to learn exactly what it was I was dealing with, and what I would be dealing with when it came to treatment. To me, that was loyalty; dedication, and true love. These are the reasons I found it very disheartening when one day, a few years later, when my problems had surmounted and I developed a Chiari Malformation and brain sagging, that I began to see a change in him. I guess everyone has their breaking point and for him, the new and added problems were what broke him. He changed.

I was bedridden and things were looking very grim. I was getting worse and it didn't appear that I'd ever get back to my old, normal self. I believe that is what he thought would eventually happen - that I would get better and get back to my old self. When that didn't happen, he'd finally had enough. His personality changed, he grew more abrupt, showing signs of being fed up, and becoming more cruel towards me. Once it was clear that he was never going to get his "old wife" back - the girl he had married, he threw in the towel. He began to voice his feelings about me not being the same person and he didn't know how much more he could take.

His lack of compassion for "what I was left to live with," finally took its toll and we divorced. He couldn't take it anymore and began to become cruel with his words and actions. It was clear that he was "over it" and wanted out. He wanted a normal life - a life that I could not give him. And on that note, he filed for a divorce.

Today, I am a single mom of my two beautiful boys; now 14 and 11. As wonderful as they are, it has been tough. They too, forget that I have disabilities, and at times, will hold their expectations of me and what I can do - high. But all-in-all, they are understanding and are good with me. And I believe that as they get even older, they will understand more.

Being a single parent with a disability, especially with a disability of the nature I deal with, is beyond hard many days. There are days I wish I had a husband to help me - even if it's to cook dinner for the kids one night when I don't feel well, or take the garbage to the street when the boys forget, or drive them where they need to go because I am too ill to drive. It's hard.

There are days I wish I were still married so that I had someone to lean on for whatever it is I need to lean on him for. But then, there are days that I feel like this was the best decision, because to live with someone who no longer wanted to help me, or could help me, was proving to be worse for my health.

If I had to give advice to those who are living with someone with neurological problems, whether it be a brain cyst, Chiari malformation, or any other neurological problem, I would tell them that patience is key. I would tell them to always try to remember why they loved them to begin with, and try to focus on that; especially because neurological problems can change a person and their behaviors. I would remind them of their marriage vows to "love them, in sickness and in health." And I would ask them: "If it were you - if you were the one who had been diagnosed with a rare medical condition that no one seemed to be able to figure out, or know how to treat - would you want your spouse deserting you?"

Love is supposed to stand strong, in good times and in bad, as well as in hard times and easy times. But it is the hard, unpredictable, and unsure-of times that will test your relationship and prove the kind of person you really are. If you have real love - genuine love for your spouse, there is no illness or condition that should be able to destroy that. If anything, it should bring you closer because you have empathy for your spouse. You want them to get better, and you want to be a part of them getting better. That, is true and enduring love.

"It's all in Your Head," where you can follow my entire journey through my battles with what started out as a Posterior Fossa Arachnoid Cyst, and ended up much, much more, can be found at Tate Publishing: ,  Barnes and Noble, Amazon: and wherever books are sold.

May you be blessed by my story in the way so many others have already been blessed.

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. 


Thursday, April 26, 2012

Dealing With a Chronic Medical Condition, and Difficult People

After I was diagnosed with a rare brain cyst, I was just sure I would be getting the best treatment. I just knew that my case would be viewed as urgent and critical. Boy was I wrong! Instead, what I got was the big blow-off. I got the run around, condescending looks, and told to go home and stop worrying - my problem wasn't really a problem at all (so-to-speak).

I tried, Lord knows I tried to believe in the doctors that were "taking care" of me. I wanted to believe that the cyst wasn't "the" problem that was causing all the odd symptoms I was living with, but turns out it was. How wrong they were. Two brain surgeries later, including inserting a shunt into my cyst, and now, a whole new set of problems were developing. I had a boatload of new problems and was, in a sense, back to square one in trying to find a doctor to take care of me - to believe me and want to help me. But once again, that would prove to be a difficult task. What I got was more doctors to give me more sideways looks, and more of the brush-off that I had become accustomed to.

Turns out that my shunt had been over-draining for too long, and this over drainage caused my brain to sag and for me to develop what is known as a Chiari Malformation, where the brainstem herniates into the spine. I was in trouble. In the end, my shunt pressure had to be adjusted over and over again to get more fluid in my head, around the brain to help float the brain back up. In the end, it would help a little, but not enough. It never did float up, back to its normal position, and not all of my symptoms were resolved.

It was one thing that doctors didn't believe me and wouldn't listen to me. It was one thing to have them ignore me and my problems, and for them not take me seriously- that was all bad enough. But when certain family members, even close friends began to belittle my situation and try to make me feel as if I needed to just "get over it," and "move on," that was almost harder to take. That was almost too much to bear. You expect that the people closest to you in your life will be supportive. You expect that they will always be there for you. But for me, their denial of support and their disbelief, although it didn't affect me in the way the doctors' disbelief did, but it was almost as devastating. I needed those closest to me to be supportive, and I needed their care and support. When I didn't get it, I realized I had a decision to make - to keep them in my life? Or to cut them loose? So, I decided to cut them loose. I decided to "clean house" and only keep those that were supportive and those that were kind and understanding, in my life.

It was hard. It was a tough thing to do, but their negativity, their condescending remarks and even looks, were only making my health issues worse. I decided to surround myself with only positive, supportive people. I, nor my health, could afford the stress of worrying about whether people in my life were on my side. Whether they were going to support me, or doubt me. I found myself feeling sicker, both physically and mentally, with always worrying about whether or not certain people would listen, believe and support me. I couldn't stand the worry with what I should share with them about my condition, and the worry of not being able to talk to them about what I was going through and dealing with for fear that they would tell me I need to "Get over it," or "You've already had your surgery....move on." No, I couldn't do it anymore; not if I was going to heal; physically, emotionally, and mentally.

I have missed some of my old friends that I no longer have contact with, but it has also been a relief. I feel relieved that I don't have to make sure I say the right thing to them so that I don't get a sermon about "getting over things" or "why do I want to stay in the negative?"

I do understand that those who have never lived through what I have, cannot truly understand or appreciate what I've been through and what it is like. But I also don't think that they should try, or judge. To be preachy and bossy about a situation that they have no experience in, does no good. If anything, it is damaging and can make you feel worse - physically, mentally and emotionally. It can destroy relationships, and apparently so, because it destroyed several of my relationships.

One reason I wrote my story, "It's all in Your Head," was to help others better understand what all I went through and continue to go through. I want to help doctors and medical staff understand what patients go through, as well to help others who are living with a long term, chronic medical condition. I want them to see what a patient goes through, especially when they do not listen. I have heard that it is doing all that I have mentioned. It is out there and reaching all kinds of people. It is a human interest story that many people can identify with - whether it's a brain cyst they live with or some other medical condition. And I hope to reach many more as time goes on.

"It's all in Your Head" can be found on Amazon, through Barnes and Noble, on Tate Publishing's website and ordered through any bookstore.  It is under Maria McCutchen and will make a nice gift for someone you know who lives with a chroinc medical condition, or for yourself.

Wednesday, April 25, 2012

To Decompress, or Not to Decompress?

When you live with a Chiari Malformation, there isn't a whole lot, medically, that can be done for treatment. The most common form of treatment for a Chiari is, decompression surgery. It is an in-depth surgery that, like any other surgery, is not without risks. As a matter-of-fact, there are quite a few risks involved with a decompression surgery.

Because the tonsils of the brain are herniating into the spine, below the base of the skull, they must be made to be kept within the skull so that they no longer "dangle" below the skull. It is when they get too low, or fall beneath the skull line that you can have horrific symptoms. It does not matter whether they have herniated just a couple of millimeters, or several, each individual will experience different degrees of symptoms.

Symptoms that are common amongst those with a Chiari are:
  • Pain
  • Headaches
  • Numbness
  • Balance issues
  • Problems swallowing
  • Nausea/Vomiting
  • Muscle weakness/Tingling
I experience and/or, have experienced all of these symptoms at one time or another, and more. Some symptoms are regular, nearly daily symptoms, while others bother me sporadically.

Other problems I deal with are:

  • Vision disturbances
  • Audio disturbances
  • Sleep disturbances
  • Restless leg syndrome
  • Sleepiness at odd times
  • Muscle twitching
If I just had the Chiari to deal with, I think I would have already had my decompression surgery. But.....because I also have a significant sagging to my brain, this makes my Chiari different than many cases. It makes it "tricky" and with many more risks. It has been thought, and explained to me by my neurosurgeon who follows my case now, that although he does perform the Chiari surgery, he does not want to attempt to repair mine, for fear that he will make my sagging worse. He has recommended that I travel to New York, to the Chiari Institute, to see if they could help me. He says that they see and have seen just about every type of Chiari case, and if anyone could help me.....they could. But I've yet to go. After all I have been through with my past two brain surgeries, complications from my shunt, and the symptoms I currently live with, I am afraid to rock the boat. I'm afraid to go through a major surgery, only to come out at the other end with more problems and complications.

Maybe one day I will decide I've grown tired enough of living the way I do, to where I want to have the surgery. Maybe one day I won't have a choice, but to have the surgery. I do not know what my future holds, but whatever it holds, I just hope that I will at least be able to live life with some sort of quality. I hope that I live well enough that I am able to enjoy my two boys, watch them finish growing up, and am well enough to be able to be an active part of their lives.

So, until then, it is a question of, "To Decompress, or Not to Decompress?" Everyone has to make the best decision for themself at the time, and as of yet, I have no decision. I do not know what is best for me, and until there are substantial guarantees that I would walk away from such a major surgery feeling better and doing better than before I went in....I will probably stay just as I am.

Monday, February 27, 2012

Chiari Malformation - One of Several Medical Issues I Live With

It's been a while since I've posted here ...and I do plan on getting back to regular postings.  I want to help others who are going through similar situations as I have been through, and possibly similar problems that I still deal with today. 

I not only live with a very large brain cyst; I live with a significant Chiari Malformation as well.  And, to add insult to injury, I also have brain sagging - my brain literally fell away from the cortex and sags downward.  While many people are born with their Chiari Malformation, known as congenital Chiari, mine was acquired - meaning that it developed later in life and due to another reason. 

My Chiari developed from the shunt that I have, over-draining and causing my brain to sag.  When the brain sagged, my brain stem herniated into the spine.  Mine is a significant Chiari of approximately 8mm, and is very symptomatic for me.

I have lived for over 5 years with my Chiari.  I was 38 years old when I developed my Chiari and I was diagnosed with an MRI.  There was no mistake in the diagnosis.  It is a significant herniation of approximately 8mm, and is very symptomatic for me.  The doctors told me that just by my symptoms alone, they knew I had a Chiari.  They didn't even need the MRI - but the MRI confirmed it.

I was told that I may need to have the Chiari surgery one day.  If my symptoms continued to stay bad for me or get worse, then surgery may be the route I would have to take.  As of yet, I haven't had it, and mainly due to the fact that my brain is sagging.  Most neurosurgeons I've seen have told me they are afraid to touch my case because they are afraid they'll make the sagging worse.  They have all recommended I go to the Chiari Institute in New York, claiming they would be the ones to know if I can be helped.  But I just haven't been able to muster the nerve, the strength, or the financial resources to go and to look into it.  So as of now, I am not a "Zipperhead."  Only a "Zipperhead" from the two brain surgeries I've already had, but not the Chiari surgery.

As far as treatment for my symptoms, I mostly try relaxation treatments.  Sometimes I may have to lie down, or do deep breathing in order to help control the pain, but I have not sought outside treatments for my pain and symptoms.  I do not take strong painkillers - I can't, due to all my neurological problems.  Basically all I can take for pain is Tylenol or Motrin, and sometimes, an occasional portion of an Ativan.  I have to be very careful with medications like Ativan, because my neurological system does not handle medicines well today.  Regular exercise does tend to help my particular condition most days, but even with that, I have to be careful not to overdo it, because that can cause my problems and symptoms to be worse.

My most odd symptom, that I still have bouts with today, is that I cannot sleep on my left side or back....only my right side.  I can lay on my back or left side, but to fall asleep on those sides is horrible.  After I'm asleep, while on those sides, I will usually wake up to the feeling that my brain is being wrung out.  I get extremely dizzy, feel nauseous, and can hardly stand or walk - I am very weak.  It is frightening.  There is talk that I may be having nocturnal seizures now, and my doctor is looking into getting a sleep study done, and I'm due for another MRI.  So I have no idea what it could be.  I have plenty of symptoms related to my Chiari, but that is, to date, my most annoying, frightening, and bizarre.
Living with Chiari is hard to explain to others.  Even family members don't understand.  If I could get friends and family members to understand Chiari and just one thing even, it would be that Chiari is very unpredictable.  People tend to think that because you seemed normal or good one day, that if you have a bad day the next, you are either making it up, exaggerating, or being a baby.  I'd like people to understand that you have no control over how things will be for you; day-to-day, hour-to-hour, minute-to-minute.  If they think your up's and down's are frustrating for them because they cannot plan something with you, or they see you as "fine" one day and the next, you are a do they think you feel about it?

Attitude does play a big role in how I feel.  I have had a lot of ups and downs with my frame of mind and attitude.  One of the biggest things for me that helps keep me sane and in a pretty good frame of mind, is exercise, as I mentioned earlier.  The natural endorphins that flow with exercise can be like a drug.  They are a natural mood enhancer.  They not only help with keeping me in a good frame of mind, but help with pain as well....unless I overdo it.  When I feel better about my body physically, then I feel better all the way around.

There are days when I don't think the bad feelings will end.  Sure, I get discouraged and I will feel down.  On those days, something my mother always used to tell me when I was younger, comes to mind and today, I try to remember it and live by it....the quote is simple, but for me, powerful.  It is...."And this too will pass."  When I feel like the pain is awful, or I'm having a bad neurological symptom day, I say that quote over and over in my mind and remind myself, that tomorrow will be a better day...."And this too, will pass."

A couple of years ago I wrote my story.  I wanted to tell my story of what I went through and where I was today.  My book was published and just came out this past October - it is called, "It's all in Your Head."  It is now available through the publisher...Tate, on, through Barnes and Noble, and other places where books are sold.

If you or someone you know has ever dealt with a chronic medical condition, whether it be neurological, has had brain surgery, a Chiari Malformation, is a book that will inspire and help you to realize that you too, can get through what you are going through.  Even if you haven't lived with a chronic medical's a good read.  At least that is what I have been told, and keep hearing.
For anyone living with Chiari and you feel alone...know that you are not.  There are many others out there who totally understand what you live with, and are going through, and we will all band together and comfort each other.  If only through a blog.

Saturday, January 7, 2012

It's all in Your Head

If you haven't seen my book was released in October and is now available to purchase on Amazon and through Barnes and Noble.  My goal is to reach as many people as possible, in hopes that not only my story will help and inspire those going through any medical issue - but particularly brain cysts and brain issues.

So check it out....for you or for someone you know who think could benefit from someone else's experience in "dealing".....dealing with doctors, pain and suffering, and life.

I hope you will find it inspiring and find it in yourself to never give up!
It's All in Your Head

Friday, January 6, 2012

Don't Give Up!

Boy is it frustrating when you don't feel well, you have medical problems and no one seems to be able to figure it out!  You want to give up! 

It plays out as: you go to the doctor with a medical problem and they either cannot find the problem or they tell you that what they have found, "shouldn't be causing you problems."  They tell you that your problem isn't really a problem....essentially.  Boy that is frustrating.  Especially if you know that it is the cause of your symptoms.  You just know, in your heart of hearts, that the diagnosis you've been given is the root of all your symptoms.  But your doctor(s) keep telling you that your diagnosis shouldn't be causing your symptoms.  And in that case, good luck convincing your doctor.

That was exactly what I had to deal with when my cyst was diagnosed - my brain cyst.  Doctors just kept telling me that my symptoms shouldn't be, and weren't being caused by my cyst.  I was essentially being told to "get over it."  I was told that my type of cyst is normally asymptomatic and shouldn't be causing my problems.  Hmmmmm!  A gigantic water balloon on my brain and none of the neurological symptoms I was experiencing were being caused by the large water balloon.  It made no sense.

For months, as I continued to go downhill and developed one frightening symptom after another, I begged for help.  When help didn't come, I had to take matters, and my health, into my own hands.  I got second opinions, I read about brain cysts much information I could find about them anyways.  I read about the brain in general....what the different parts are responsible for.  And I began to put two-and-two together, and what I determined was that yes!  My brain cyst was the problem and now, I just had to get a doctor to believe me and one that understood these brain cysts better than other doctors.  Better than the doctors who had examined me so far.  So I put my investigative hat on and found a doctor in Arizona who was very well informed on brain cysts - very knowledgeable.

He operated, fenestrating my cyst first, then 4 months later inserting a shunt.  Everything was going well, until that fateful day when I met the doctor who would cause me more problems than what I started with.  Another disbelieving, non-trusting and finger-pointing doctor.  I will share that part of the story in my next post.....what this guy caused for me.  But I wasn't going to give up....I never did.  I almost did and there was a day when I seriously considered ending it all, but in the end, I fought to get the help and care I knew I needed.

Sunday, January 1, 2012

Journaling for Your Doctor

When we see our physician because we don't feel good, or we feel something is wrong, we have faith in our physician that he is not only going to listen to us, but believe us. Butting heads with your physician, or feeling that you have to convince him there is something wrong, can be stressful. It can add to your problems of not feeling well or possibly make your condition worse. You need your physician to be on your side and trust you. You want to trust him. And you want to feel that you and your doctor are a team when it comes to your health.

There is something you can do to help doctors understand you, and to show him that you do know what you are talking about. By following this step, you can go into your doctor with confidence to discuss your health. You will be organized and have your facts straight.

The most important thing you can do to help your doctor understand what is happening is to keep a journal. You should always journal your symptoms. By keeping careful note of everything to do with your symptoms, you will know what to tell him when you see him. He will have everything written down so that he can refer back to it and see if there is a pattern. You will be more organized and he is more likely to take you serious if you know the pattern of your symptoms and have a record.

Things you should journal are:

  • Date and time - Make sure to note the date, day of the week, and time of day the symptoms happened.
  • What you were doing when it happened - This can be important because it will show if there is a pattern; for instance, does it always happen at the same time of day? Does it always happen during certain activities? Does it seem to be sporadic in nature? Make sure to note everything about your activity at the time of the symptom or problem arising. Were you sleeping, jogging, doing dishes, driving, or sitting at the computer? Whatever it is, write it down.
Be detailed in description - Not only should you journal "what" you were doing, but how long the symptom lasted. If you can, notice the time of when it started and ended and write it down. If you had the symptom while standing washing dishes, write that. But if it happened while washing dishes, but you just happened to bend over to get something off the floor and that is when it actually happened, be detailed. It could be important that it happened while bending. Happening while you were doing the dishes may be true, but it actually happened at the moment you bent over, is important.

  • How long did it last? - Try to notice how long the symptom lasted. Get used to wearing a watch or notice the time when the symptom(s) started and when it stopped. Write it down right away so as not to forget it. If you are not always used to wearing a watch, try to start so that you always have a way to monitor the duration. It could be a big difference in saying that it lasted a long time, when in reality it was 60 seconds.
  • Diet - There are a few things you should journal about eating. First, note if you were eating at the time your symptoms happened, or how long before or after each meal. For instance, if it happened before you ate, how long before you ate? Or was it after you ate? If so, how long after? Did eating make you feel better or worse? Then, keep a separate record of your actual diet; such as, times you eat, and what you eat. Your diet may have an affect on your symptoms, so to note the details, may help your doctor. This should include all fluid intake during the day as well. Note all the fluid you drank during the day: what you drank, the time you drank, and how much you drank.
  • How much sleep are you getting? - Keep record of your sleep pattern. Maybe your sleep pattern is affecting your symptoms; whether it be that your sleep pattern is causing your symptoms, or the symptoms are changing your sleep pattern.
The more details you can offer your doctor, the better the chance that he will be able to help you figure out your problem, and diagnose you correctly. Also, the better your journal, the easier it will be for him too. To keep a sporadic journal; only writing things down every so often, or skipping making note of a symptom, the harder it will be for him to make sense of it too. If you're going to keep a journal, be diligent. You may be surprised at how much it helps your doctor, and you.