Headache

Headache

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

Abysmal!

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!

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.

Neurologist And Neurological Mess

To the Neurologist!

I love my regular neurologist, but I FINALLY got an appointment to see my memory neurologist and I couldn’t be happier.  I called on February 4 and got the choice for an appointment on the 11th or in April.  Trust me, it was not a hard decision.  I had to reschedule another doctor appointment, but it is worth getting to see this man who I have prayed so hard for.  I and really excited to see what he has planned for my next steps.

Going to the doctor is usually not for a fun purpose, but I am just hoping for a productive outcome.  I know that we have a ways to go, but I hope that we have made clear progress in some direction that he can work with.  God willing, we will start on the road to Cleveland and see some super specialized doctors.

Be thankful if you have the opportunity to see doctors and get the care you need.  I know my visits to this particular doctor run about $600, so be thankful for every insurance and discount…I KNOW I am.  I would never be able to afford this care on my own.  Like I have done, use every option and benefit available to you to better your health.  As long as it is in your budget, go to physical therapy twice a week and do the exercises at home.  It helps with just daily mobility and the program is tailored to your body by someone who had to do some schooling.  See a dietitian or nutritionist to help make reasonable meal and food choices that will assist with specific health goals.

I am not saying to abuse the system, any system, for your gain, but if you need help doing your hair, physical therapy helps in a longer term way.  Using your body in a healthy way and eating well can help keep you off a lot of medications later, so take care of yourself and use the resources available to you.  This includes mental health.  It is OK to see a therapist.  They can be very helpful and they aren’t always long term.

Last, if you think something strange is going on in your body, talk to your doctor until they listen (that’s how I got brain surgery!!) because sometimes it takes some convincing, but eventually, you will get the right doctor and things will begin to fall into place for you.  I could have suffered serious damage to my spine had I let the pain continue.  I was lucky that it debilitated me and I was forced to go to the doctor.  Use your resources.  That $10 visit cost about $150K in hospital and surgeon fees, but my insurance at the time paid 100% for hospitalized, necessary surgery.

So, That’s my story.  Expect an update (outside of normal release days) about what happened!

Not So Helpful After All

Your chakras are blocked. You need to meditate and focus the energy of the universe on your blocked areas so you can open the path of energy flow. Once energy is no longer pinned in you head, the headaches will disappear. **Okay**

There is nothing like the unsolicited advice of someone you barely know.  You desperately want them to go away, but in kindness you listen to them.  They often tell you something that will make you question whatever type of relationship you have with them.  You hate to see yourself as mean, but you secretly wonder why they haven’t transcended this corporeal existence for the more ethereal experience of knowing it all somewhere else.

This is me having one of too many conversations about how I can help what ails me.  I know people are trying to be nice, but they forget that I have probably done more research on Chiari Malformation than they have since college.  I have a team of neurologists who likely know more about my condition than anyone who has recommended that I ferment and then drink something.

I know people are just trying to be helpful, but you really are no help when a subject is beyond your understanding.  So maybe research Chiari and ask me some questions instead of telling me what you think is best for me based on your aunt’s seasonal sinus headaches.  All headaches are not the same.  They hurt differently, are brought about by different circumstances, and are treated (or not) in various ways.  They are all valid sources of pain, but each deserves its own light.

If you have found yourself giving advice to people for a problem that you don’t have or don’t have a degree in, you might make sure you know what you are talking about.  You might instead have a relative with Chiari that you have cared for.  Then I can relate.  Just, be mindful that the person you are talking to likely knows WAY more about their condition and comorbidities than you do.

If you have found yourself on the listening side of someone who knows more words than facts, don’t be afraid to stand up for yourself.  Just stop them at the beginning and don’t even listen to them pontificate about subjects beyond their grasp.  Your time is better spent educating that person instead!  Give them a bit of knowledge and hopefully they will be curious enough to look it up later.

I spent maybe the first year after my surgery (and a bit before) listening to people tell me what they thought I should do.  Essential oils instead of brain surgery.  Someone told me this was a better idea but then refused to take care of my medical bills if the oils failed.  Someone asked if I had tried (you knew it was coming) KALE!  In fact, more than one person has asked about it and that is why it upsets me.  Just because it is healthy doesn’t mean it will keep my brain in my skull.

Eventually, I just stopped someone when they asked if I had tried kombucha.  I guess that is where I drew my line.  I told them that I allow my doctors to lay out my medical choices and I do my own research.  They seemed a bit put off, but I felt good for speaking my mind and not listening to a holistic rambler talking about nothing useful.

Now, that is not to say there aren’t people who know what they are doing or talking about.  These people tend to make sense understand how the human body works.  I am not talking about these people.

It’s the meddlers.  The ones who can’t pronounce your illness but can tell you how it was created in a lab and they know the secret cure.  The cure that cures everything.  Probably something that will drive you up the wall like “kale”.

Just know that you aren’t alone out there, suffering from the fantasy based words of a do-gooder.  I know that many people deal with this everyday, so lets start to use the opportunity to educate instead of rolling our eyes until they get stuck or sighing heavily until we hyperventilate.   Many conditions can be explained to the general public in the time it takes for someone to explain how misaligned chakras cause headache and indigestion.  It’s a better use of time and oxygen and you have now spread awareness!

My Happy Place!

My happy place.

I have had a  number of medical procedures done for testing or treatment that have been absolutely horrifying.  The first that stand out in my mind is when I had my knee debrided  and cleaned after and injury as a child.  I remember screaming, but in my head I was in a completely different place.  There was no pain, only the intense warmth of the sun.

The next time I really remember going to my happy place, I was having cortisone injected into my knee after a bad hyperextension and the pain could be described as “thrilling” or “amazing” and to my happy place I went as he filled my knee full of fluid and it hurt so bad.

The time that is most vivid however, is the time I went to pain management.  I wanted to deal with my headaches but he felt dealing with the bulging discs in my neck was more important.  He gave me 4 injections into the facets of C3 and C4 and for the first time, I cried at the doctor.  Silently, of course, as they had me strapped down and needles in my neck, but I went to my happy place and the sun was blazing.  Even my happy place couldn’t escape what my body was going through.  I made it through that procedure with an imaginary sunburn, but my happy place intact.  The experience made my happy place more impermeable to the bad times.  Because after that was the whole brain surgery thing and my happy place got a lot of usage there.

There were some dark days after the surgery.  I don’t remember a whole lot, but I have an overall understanding of how things went down and I have some nebulous emotions attached to this time.  I know some days were really hard on me and my sister and love is probably the only thing that held it together.  There were days, hours, minutes, and seconds of pain.  Enormous pain.  Epent in my happy place, where the sun shone bright and warm.

Even now, I will be struck with a headache and if I can’t bear the pain, I just zone out to my happy place.  Where I’m ok.  I am resting or running or picking apples.  I am definitely not dealing with excruciating pain.  We don’t have that here.  Just good, sunny, fun times!  It doesn’t cure the headache, or the nausea, or any accompanying symptoms, but it helps me get through the part of it that I take most personal which is the exorbitantly magnificent pain that soars through my neck and head like a flying ball of magma then comes to rest inside of my head, slowly melting my brain and burning down my spine into my limbs.  If I can think about the blue skies or the grass on my toes instead, then I choose that, thank you!

My Life Clock

My Life Clock

One of the scariest things to learn to deal with after surgery was that I was no longer on my “schedule” but I now lived according to my body’s needs and doctor appointments.  I tried desperately to cling to some type of schedule (I still do, like a fool) but it was in vain.  Remember having to go to a doctor appointment and then wanting to take my sister out for lunch.  By the time our drinks got there my body was slunched in the booth crying out in pain.  We had to get the food to go.  I felt so bad.  I wanted to take her to a nice restaurant and my body was not having it that day.

Now, there are certain things I to on schedule like take my meds.  I have alarms set so that I don’t forget.  I spend enough time each day drinking coffee because so far that is the only thing that stimulates peristalsis so I can get things moving in the morning. (poop, if you haven’t figured it out.)

Sometimes I will be having a lively conversation and then I need to take a nap now.  Not in a few minutes, not later, right this second I must get to my CPAP and sleep.  If I don’t, I become crabby, like a mix between an angry 2 year old and a crotchety 87 year old.  I am not pleasant at all.  God bless my family for putting up with this mess of a woman.

Often the clock changes as the needs of my body change.  I have been having a lot of headaches recently and no doctor appointments, so there are a lot more naps on the clock and reallys, a lot more blogs as I try to get ahead in preparation for my visit to the Cleveland Clinic.  I suppose that by the time this publishes, I will have already visited and will be drawing stories about that.

Love your body.  I mean take care of it.  Listen to it.  Follow it’s instructions (unless they are murderous, then see a therapist).  It will share it’s needs with you if you are willing to listen and give it a chance to tell you.  Remember that it’s needs will change and grow over time and that is normal.  That is life.

The BOSS

The Solution

One of my issues in life is not feeling like I am able to do enough stuff.  I enjoy filling my life up with things to accomplish.  So, I recently had a conversation with a friend that I know speaks from the brain.  I am not saying he doesn’t have a heart, but he does not let his emotions cloud his sound judgment.  I went to him with my feelings, knowing he would give me back factual information and cut through the ambiguity of my emotions.  while he said many encouraging things, the craziest one was to get a part-time job.  My medical team and my lawyers would kill me.  My body would give out.  I don’t expect him to know all of the details concerning my condition, however it got the wheels turning, and THAT is what I needed from him.  I am a woman of many talents and while many of my body parts are failing me right now, I have not given up the hope of going back to living a semi-normal life.

That takes money.  While I languish, waiting for disability, I feel very useless.  So, in his eyes, getting a job will fix some of those problems.  Still, I can’t work by someone else’s hours or by their expectations of my body.

Then it dawned on me.  I have been a business owner since 2010.  I ended up having to get surgery on my nose and throat shortly thereafter and then the accident and the brain surgery, but I don’t need to get a job. I’m a freaking BOSS!  Hahahaha.

He told me to figure out what I was still good at, I bet I can still do loom work and I would love to design a set of handbags.  So, sometimes, you have to go to someone who sounds like they are being harsh (he never used a harsh or condescending tone, he is always very matter-of-fact and pleasant in delivery) to force you to take that really hard look at yourself and say what have I been missing?  This person said this, this person said this, and how do I out it all back together?  Well, I put it back together and now I am getting ready to reopen the creative doors of Haus Of Simeon and I am going to not get a job, I am going to create the job.

Have faith in yourselves, my lovelies!!

Also, check out The Life Of A Music Monkey because I am up to some fun stuff over there talkin bout Chiari and right now anxiety and how I am working through some of my scariest moments of anxiety.

Smile: Adventure Ahead

Autonomy, worth, friends, self-esteem, treatment plan, life, love

There are plenty of questions that linger after Chiari Decompression, especially if your life doesn’t return to normal.  My friends often can’t understand that my brain can no longer do the things that it used to be able to, and no amount of believing in myself changes that.  Then I question my autonomy.  Will I be able to be a productive adult for the rest of my life?  Will someone have to keep an eye on my finances and everything else to make sure I don’t become destitute because I can’t remember to pay bills?  What kind of life does that make for me?  Is that a life worth living? What if there is no treatment plan that will take away my symptoms?  Will my friends tire of having a “sick-friend” after a few years?  How will this all affect my self-esteem?  Will I be able to live with myself and not resent this brain of mine?  Will anyone ever be able to love someone like me? What If I deteriorate?  Would it be fair to the other person in 20 years?

Unfortunately, it is easier to ask the difficult questions and languish in self-pity than it is to be bold and confront the new normal with a big smile and only the expectation of adventure.  I am a Christian.  I regularly attend my church.  I am in ministry inside and outside of the church.  I love Jesus, and I believe that all of this is happening for a reason, but that doesn’t mean I don’t think and process life like a human.  I particularly deal in grief and the grieving in ministry and it has given me a much wider perspective about what I am going through.

I have lost a lot of my life and I am sad about it.  Of course I have days where I am overcome by the magnitude of how different I have become.  And -this- is what people don’t understand: I am fundamentally different than I was before my head was opened.  I don’t even think like I used to, but I have memories of thinking and being a certain way.  My emotions are foreign invaders which have occupied my mind and now everything is filtered through them.  My drive to accomplish and accumulate had turned into a drive to love people and give away what little I have.  And this is just the beginning of the changes brought about by Chiari and the surgery.

So, when I feel sad, I try to find someone that I can help, so that I am not focusing on my own problems.  When I can’t remember my worth, I study the Bible and I am reminded that Jesus died for my sins.  When I wonder if I will be able to take care of myself, I remember that I have a loving family that always keeps my best interests at heart.  I may have to deal with pain and uncertainty, but I will try to do it with a smile and the expectation of adventure a little more.

What people think helps Chiari headaches

What actually helps…

When I tell people I have a headache, what I actually mean is that my head feels like there is a bomb constantly detonating.  Medication and even a surgey did not take the pain away.