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.)




Chiari Awareness

It feels like the years slip by now.  I don’t know if that is a symptom of getting older or forgetting what’s going on.  Once again, September is on its way and for me that means doing something to help spread the word about Chiari Malformation.

I always hope that the little bit I am able to do is somehow helping.  This year has been one of the most difficult and honestly I look forward to better years to come.  However, I didn’t come here to have a pity party, I came here because it is my birthday week and I still have blogs to write!!  I came here because I want to prepare anyone on me feed for some September madness.  I will be making a cartoon everyday about my experience with Chiari!

So enjoy the next 30 days (or so) and help spread the word about Chiari Malformation!

Pain Unthinkable


Chiari is pain unthinkable

When the headaches began they were small blips on the radar and as time went on they became longer, stronger, and more debilitating.  Three and a half years after decompression I still suffer from headaches that keep me laid out for days.  I still have nausea that may be one of Earth’s most powerful sensations.  Added onto the melody of Chiari head woes is the harmony of other dysfunctional systems of my body that cause discomfort or limit my life.

Everything in my body did it’s own thing after my surgery.  It has resulted in three years of painful tests/procedures that often are repeated or are peripheral but need to be looked at.  I have been poked, prodded, electrically stimulated muscles, the endometrial biopsy that almost made me rethink life, and most recently this colonoscopy and upper endoscopy.

I won’t ruin all the fun because this is going in the other blog 

Needless to say, they use the word “discomfort” in a VERY deceptive way!

There are times that my body is stewing in pain and at some point it doesn’t matter because everywhere hurts.  I prefer to stay home and experience this feeling where I can complain and fall asleep.  There are times when I am able to distract myself but I am often left alone with the pain.  Not that there aren’t people around me who care for me, but no one can really come inside my body and help me bear the burden of pain.

These are the times I talk to God and wonder how I am supposed to be of any use to the world if I am laid out in pain.  I am at the point of giving guardianship of my daughter to my sister because I need to be able to get through this time in my life without scarring my daughter.  She has had to deal with a lot, so we all agree that it is in her best interests to be away from the medical whirlwind that is my life.  Luckily, she will be staying in the state and so we can still hang out and have a close relationship.

Chiari and all of it’s baggage has hurt my body, my emotions, and my mental state.  It has taken two years of therapy (psychologist and psychiatrist) to realize that the past is gone.  I will never be the old me.  My body may always hurt, but that doesn’t mean that I can’t learn to cope and make the most of my better days of health.  I just chaired a walk and I am still recovering because I had this procedure three days later.  These days I have to remind myself that even in my pain, I can draw a picture of how I feel and write about it and that will help me to be distracted and to hopefully form some sort of memory.  At the very least, an accurate record of what I did and how I felt about it.

The pain of my Chiari has managed to infiltrate every part of my life and body, but I am not going to let any of what is happening to me stop me from talking about it, spreading awareness about it, and getting out to make things happen.  I realize that nobody knows who I am, but in the next year I hope to change all of that.    I encourage you to take an action to spread awareness or to educate.  Blogging is a great start and you can find many ways to advocate.  It’s time to change the face of patient care to something a little friendlier and more accepting and understanding.  I am not sure if I am a log, tinder, or a match, but the fire will be lit and I will be there fighting for better care.  It’s time to infiltrate Chiari, learn it’s secrets and destroy it’s secret lair.

The Pain Is Everywhere

This is a point in my journey I could not have predicted. I have never considerd myself a “happy” person, but I have always felt that I had some direction and motivation.  

The loss of my job, my memory, and some of my higher functioning has left me feeling robbed.  Chiari has stolen the things about myself that made me feel like my life had value to me or made me feel valuable.  

The hard part is staying transparent.  I began this journey so that those who came behind me would have a record of the trials I faced in case theit situation was similar to my own.  

I have a complicated history that involves some childhood horrors and now I have lost my coping mechanisms (work, work, work, work, work).  So, at my neuropsych evaluation it was recommended that I go into long-term therapy with a PhD level psychologist because now I have to work through my current life change and wade through my past so it can be fixed.  

That sounds reasonable.  Still, on the inside it drives me into an anxiety attack just thinking about it.  I don’t want to re-live that part of my life, but in a way I already am.  I feel just as trapped and hopeless as I did when I was a child, but with the added bonus of having my own child and remembering independence. 

Slowly, the enjoynents of my life are fading.  I am checking in less often.  The neuropsych eval stated that my intelligence surpasses 99% of people in my age range.  At times, I have the clarity to see that I am severly depressed and I am getting worse quickly.  I recognize the trail of red flags that my mind is desperately flinging all over, anywhere someone will look.  

That is why I have chosen to keep my battle as public as possible (without incriminating anyone or tarnishing anyone’s reputation) because it is time to stop being ashamed.  We are not ashamed of diabetes, heart disease, stroke, broken bones, or any other health problem.  We should not be ashamed if our brains aren’t functioning well either.  

So, this is why there have not been any updates.  I haven’t cared enough to do any.  I have barely cared enough to get up every day and pretend like I want to be here.  I hope that as I go through treatment, this cartoon with flourish and once again be what I created it to be.  A mockery of the crazy things people aay to me.