Like giving birth out of your head. Can completely incapacitate. Does not care about your "plans" or "life"


Probably the best known and least favorite symptom of Chiari Malformation I is the wretched headache that radiates pain and at times just feels like being hit with a sledge hammer.  Over and over.  Sometimes for days.  Or weeks.  Or, God forbid, years!  My neurosurgeon told me many people take years to discover the true cause of their horrific pain and while I suffered for 18 months, once I was diagnosed, I had my surgery about two weeks later.

The thing is this, unlike many other surgeries, a Chiari Decompression is not so much for the purpose of treating pain although that is always a hopeful side effect, it is to prevent further damage from occurring to the brain stem and spinal column.  Usually, opening up the space provides relief, but this is not always the case.

For me, the headaches are not as bad most of the time.  It is a headache that is pretty steady and is able to keep me just able to live life but not in the exciting way.  I have grown accustomed to the daily ins and outs of pain, they come and go throughout the day.  There are days I wake up and I know a storm is coming, or worse, it is already here.  These are often bad days where I don’t do much and I have built up a guilt tolerance.  I have to rest on these days and that is life.

There is no medication that I have been prescribed that touches the headaches, all the meds that work come from the ER, but that is not where I like to be, so I try to calm my headaches when I feel them getting out of control.  I will stop reading or doing anything that involves using my eyes, often this leads to going to sleep which often helps.  I will ice my head and forehead and that works when the pain is too intense to sleep.  I will meditate, sing to myself, and just do self-soothing actions until I can sleep.  Sleep often helps make them better or even back to normal.

I will be honest with you; I would much rather prefer a cure than the normal headache, but I will take what I can get right now!

If you want to learn more about Chiari Malformation I urge you to visit Bobby Jones CSF and take some time looking around that site. (I do not work for them, but I do  volunteer fundraising to further their cause of education and research.)

Also, if you want to help support fundraising for education and awareness about Chiari Malformation I suggest you visit Chimera Pillow and check out the comfy pillow that my mom created to help me with my headaches.  (I am a spokesperson and blogger, both volunteer…for now.)

Tough Pills



Chiari A tough pill to swallow.

So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse.  However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues.  I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed.  Otherwise, I was active, healthy, and living my life.

After the initial diagnosis, I had a few restrictions.  Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again.  Here are a few of those things:

  • horseback riding
  • weight lifting
  • climbing
  • kickboxing
  • sing opera


However, once I began to heal, I began to hope.  I was getting stronger everyday, I got a gym membership.  My memory was failing but I had enough family and technology to keep things together.  Then I started getting weak on my left side and from there, much has gone wrong.

The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage.  at first the seizures were small enough to where I was beginning to doubt my doctor.  Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later.  Now I was not allowed to swim, drive, shower in the house alone, and a few other things.

Ended up in the ER with pulled muscles from my ribs to my hip on the left side.  The night seizures are violent.  They always end in pain, confusion, and long periods of dead sleep.

How do we come back to Chiari?  The headaches.  When the headaches are worse the seizures are worse.  The motion of the seizures can make the headache worse.  It is a cycle I really don’t wish to see play out.  We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them.  However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day.  My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats.  I did not realize that people lived in pain until I lived in pain.  It is quite different than any other pain.  I know other pains will go away, even if they are acute or last a few days or weeks.

The headache sits.  At times heavy and at times light.  It is difficult to accept that this might always be how it is.  I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out.  I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected.  I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).

I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes.  It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts.  In the end, the truth is what it is whether it is accepted or not.  It is harder to deal with a lie and heal and come to a new normal.

Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!

Lies I Tell Myself: VI



Lies I Tell Myself: I don’t need to write that down. I’ll remember!!

One of the biggest problems that me and my neurologist struggle with is that in the heat of the moment, I don’t really remember that I have lost the ability to remember much, so I think I will remember like I used to, but later I learn the errs of my ways…again!  The worst partis constantly feeling bamboozled by my brain?

I have a phone that takes notes in at least four different ways, I keep a memory log (which I often forget about!), and I always have paper with me.  No reason I should not have access to all of the information I receive, but that old part of me just swears that we got this, meanwhile, my whole brain is on fire as I think too hard about what it was I forgot!

This process has been repeating itself since as long as I can remember…which isn’t long,  so I can’t really give an answer.  I suspect that it has been at least since the surgery, possibly since a little before.  Memory was one of the first major symptoms behind the pain and nausea.

My phone calendar is full of therapies, appointments, naps, meds, and more therapies.  I am trying to get better at remembering, but am considering having a pin made that says “if I didn’t write it, you didn’t say it”.  Not sure how people would take it.  I realize my inability to remember their super important information is anathema in their eyes, but I am not the person everyone remembers and wants me to be from 2014.  Trust me, if I could go back I would, but, that isn’t how it works, so here I am.  Thinking I am in 2014 in my head (because time hasn’t really moved for me) in terms of cognition and 2016 in terms of time.  I feel like the world went on without me when I remember that I forget.  Every time I remember that I can’t drive it seems like I was driving yesterday (I was not!) but it seems like it.

These are the worst because they bring up three years worth of misplaced emotions and fractured memories.  I can’t drive because someone drove into the back of my car as I turned into church to use the restroom.  Such a simple act changed my whole life.  Ruined my dreams, stopped and reversed my vocal progress, and made into what I am today.

However, the blessing is really in the fact that I don’t have to carry the weight of my emotional burden everyday because I just think I am on a day off from work or it’s the weekend.  It still has not permanently seeped in yet that I don’t actually work, but that is ok!  Things take time and hopefully as my life shifts I will just find a new “work” that I do and maybe keep a note telling me to write things down!

Chiari Insomnia



Chiari Insomnia: The headache that never sleeps

My idea of a “real” headache has changed drastically since 2015 when I experienced the first of many unrealistic headaches.  The headaches I used to experience would be welcome friends today.  What pain meds am I on for it?  Glad you asked!  None!!

Right now, I deal with the pain through sheer determination.  The worst happens to be when I need to sleep.  I can be so tired, by whole body is ready for the sweet release of REM sleep and the feeling of a hot metal bit boring through my brain keeps me right on the edge of sleep.  Where any movement is greeted with a sledgehammer to the back of the head.  I feel like I am being held hostage and tortured by my kamikaze brain. It doesn’t care if we both go, as long as I hurt.

The morning after a night of this insanity is the freshest Hell on Earth.  People are annoying for no reason.  It’s hot.  The coffee tastes off.   My clothes don’t fit.  My thoughts are slurred.  Everything that comes out of someone’s mouth is oer stupid than the last thing I heard.  It devolves quickly into a mess that I care not to be involved with.

So, how do I cope with this kind of headache AND not kill every human?  Easy!  First, if I have been up all night, I cancel all of my appointments (if possible).  I can handle one appointment for a short period of time.  Otherwise, I limit my interactions to my family members (so no phone calls, texts, or responding on social media).  I can be honest with my family and tell them that I am not having a good day and I am irritated and annoyed and I am having trouble controlling it.  These folks will listen to what I am saying and give me the space I need to nap or watch cartoons, or just sit and be mad.

Unfortunately, we cannot always control our symptoms, even if we are doing everything right.  We still have the power (in many cases) to choose where we go and who we interact with.  I also understand that everyone doesn’t have a super-supportive family like I do, so it may be harder to find your voice or set your foot down.  This is my way but surely there are several other ways to handle post-insomnia irritation.

I ALWAYS recommend therapy because it can be a great way to get your feelings into the air so you can rationally think about how to deal with them with the guidance of a professional.  There are plenty of resources online to help deal with anger and non-medical means of pain control.

In the end, you may have episodes where you just get out of hand.  It is difficult, but grab a tall glass of milk while you eat crow.  Apologize and try to explain why you behaved in an unseemly manner.  Most people understand intolerable pain.  It may not qualify as “your level” of pain, but everyone knows their worst pain.  I am sure that someone out there will say there is no need to apologize.  I wholly agree, but there is nothing wrong with making the first step to reconciliation, especially when it is over something that can easily be forgiven and laughed at.

This life isn’t what we asked for and it probably isn’t what we want, but we all have a role to play in life and for some of us it is to be an example, a beacon, and an advocate.  Once you realize what you need, you will be able to help others obtain the same thing.

Also, can I sleep now?  Is this enough words?

7 Stages of Grief For Chronic Illness

The contents released in this series were inspired by this article: The 7 Psychological Stages Of Chronic Pain which I found last week while surfing the net (dig my lingo, guy) looking for how different types of losses cause different types of grieving.  When we lose a loved one, we are faced with the finality of death.  It is often a hard reality for most of us who have experienced the actual passage from this life.  Time usually helps these wounds close over and they become tender spots in our hearts.  Memories that can bring back tears and smiles.

When we lose our home or job or car we often feel violated, ashamed, or helpless.  I have lost all of these things and they can bring alone a grief that is very dark and scary in the beginning, but as life continues on and new opportunities arise we make it through the ending part of the grieving process and begin fresh again.

When you lose your memory the process becomes more challenging.  When you are in chronic pain the process becomes longer.  When you have a degenerating disease it just becomes a mess.

For me, the memory loss is awful because I am constantly being reminded that I forget things and it is like I am in a constant state of being shocked about something I already knew but forgot.  I don’t know how often I tell people the same things over and over.

The addition of chronic pain makes the anxiety in my life miserable.  See, I could be having a fairly painless day, but I know it’s coming.  Maybe a day, maybe a week. I am going to have an amazing headache.  I know in my heart that it is coming and it’s hard to tell myself to just enjoy today.  I feel like I need to prepare to feel the wrath of the Palm of God pressing the crown of my head onto my neck.  Then, like yesterday when a pre-headache symptom appears, I am just counting the hours until I am debilitated.

My body hasn’t died.  My body as I knew it and loved it are simply no longer present and I have been travelling a river of tears trying to get back to a dream.  I think my old body would want me to learn to love my new body and take the time to explore it’s bells and whistles.  It’s hard.  I just don’t know what I am or who to be.  That’s ok.  If this sounds kinda familiar to you, I encourage you to read and comment about your experiences over the next 7 posts.  It honestly is nice to know we are not alone.

Pick A Problem!


Who has it better?

There are times when we compare ourselves to other people, but we really only see what other’s allow us to see. Behind closed doors there are often tears, pain, misery, sadness, loneliness, dysfunction, and a host of other issues. My official list of symptoms is 27 complaints long and it has just embarrassing stuff on there. Things I don’t even share on The Life Of A Music Monkey and if you have been there you know I share some very intimate details of my life. Yet even I am guilty of looking at someone and wishing I “only” had their problem instead of “all” mine. Like I don’t know that we all have our battles to fight. As if I ONLY have one symptom. It is that piece of me that kinda hopes that other person isn’t doing as bad as I am…and so I want to be doing as well as I imagine they are. The mind is a crazy place to be sometimes, bit even I come back to the reality that we all have our low points and when my pain is at it’s worst, I wish the most to be someone, anyone else who isn’t in my pain. Still, I bet I would be surprised if I ended up in someone else’s skin and had to deal with their problems be it health, financial, emotional, or otherwise. I have enough problems to worry about. I think that I can just be myself and that is OK even if it sucks sometimes because of pain. I could be lonely or mistreated, so I am really blessed.

The Constant War

Because I tend to look “normal” it is difficult for some people to accept that I fight against my body everyday.  Most days I just take a little longer to complete a task, but at times, getting upright is a battle that I can’t win.  This past Wednesday I had to go to the Psychologist for my disability determination.  I woke up to a familiar stabbing pain that the base of my neck.  My brain was (again!) trying to carry out it’s escape plan.  The pain was enough to give me dark circles under my eyes, a poor outlook on the day, and I had to pee so much (a typical symptom for me).  I went with my sister and my mom and explained  to a complete stranger my illness, its unpleasant side effects, and how it has affected my life.  It was an overwhelming hour.  I think she got a good idea of how Chiari messes with your mind/memory/focus/concentration.  Everyday, I wake up on the battlefield of life, fighting myself to save myself.

This is the life!


“I wish I could stay home and not work.  You are so lucky!”                                                                                                                                                      “I know!  Having a constant headache and being broke.  THIS is the life!”

When we work a lot and are constantly on the go, we tend to see people who don’t work as either lazy (if they aren’t trying to work) or on a medical “vacation” (if they have ceased working due to illness or injury).  I did not realize how ignorant this view is until I was put on a medical vacation.  When they told me I could not work any more I was relieved because I was scared of hurting myself or someone else at work while I was having my symptoms.  After a while, I began to feel smothered by the nothingness that had become my life.  Waking up every morning knowing that I would not be productive made me feel useless. When my short term disability ran out I became 100% financially dependant on my family.  I have to ask someone to buy my deodorant.  That is the worst feeling for someone who has worked since age 14.  I worked and worked and worked, and still, Chiari has robbed me of even the most basic of dignities.  I have to find the blessing in it (which is that I have a family willing to sacrifice A LOT for me) and I hold on to that through everything.  There are people in my position who do not have a family that loves them like mine or that is able to contribute financially.  But please, don’t mistake you need for a vacation as an equal for my requirement of not working.  After all the doctor’s appointments, tests, labs, imaging, vomiting, crying, and begging God for mercy, I NEED a vacation.  I can’t afford one, though since I am not able to work.  Be grateful that you have a reason to get out of bed every morning that pays you.  I miss my job fiercely.  From the moment I wake up, I am a bill.  I use electricity, water, I have co-pays, I need toothpaste and food, clothes, AND I have a teenager who needs everything that I do.  Be as thankful for your ABILITY to work as I am for my family’s graciousness everyday.


“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.



Dreaming the dream!

Life is full of dreams.  They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies.  I felt this way last year when my doctor told me I would need brain surgery.  Everything that I had worked for was snatched from my hand and I was left with what felt like nothing.  I could no longer sing arias or even hold my guitar.  And when I could hold the guitar, my fingers wouldn’t always cooperate.  After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain.  It has been the most comforting item during this period of my life.  When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant.  I may never go back to school.  I may never perform a solo again.  I may never be what I thought I would be.  I will sing though, and I will imagine all the people whose hearts I could have touched.