Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.

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I Am No Hero!!

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I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.

Lies I Tell Myself: II

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Lies I tell myself: It is probably just a caffeine headache. I just need some coffee!!!

I really hate headaches.  They have become a normal part of my life and that is not the situation that anyone wants to be a regular part of life.  This is another lie I tell myself so that I can make it through a rough part of the morning.  Or afternoon…or night.  I tend to think that the focus on the warm drink is what allows me to get my thoughts off of the pain and lowers my anxiety.  Honestly, I could be making up my own science to help me get through this crazy situation.

This is the second (I think) in a series of lies that I tell myself so that I can at least feel like I am doing everything I can to help the headache.  I hold out the insane hope that one morning, I will drink the coffee and the headache will fade away like it used to before all of this ever began.  The thought of a bad caffeine headache is quite delightful.  A dreadful pain, but with a tasty cure.

I know that coffee will likely do nothing for my head except give me something to focus on an enjoy for a bit.  There is a certain freedom in enjoying something in spite of the pain.  I love the feeling of the warm coffee travelling to my tummy.  I live for that when I have any warm drink.

Even the tiniest pleasure should enjoy recognition.  I have always taken time to enjoy my coffee, but this idea extends beyond my favorite mug(s).  I am trying to learn to enjoy everything that isn’t painful or dangerous.  Trees are awesome.  I spend a lot of time enjoying them, usually while enjoying the rest of outside.  I enjoy the time when I am at the doctor and it’s just me and my mom in the room.  We don’t even have to talk.  I know one day it will be different.

If you happen to tell yourself lies, don’t beat yourself up over it.  Sometimes we have to have the hope that something, anything will get rid of the pain.  It it on gets us through the next fifteen minutes, we have made it a little further in the day and hopefully have gained enough relaxation to complete whatever task lies ahead.

If you don’t understand this, just be thankful.

Put That Coffee WHERE?!

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“I use Coffee Enemas to detox and relieve all types of pain…” Michellex2plus “While I relish the thought of coffee in every orifice, my brain sags out of my skull and I don’t think they use enough pressure to hose it back in there.” “No problem” (In Text Message) S “wow” M “I know”

I am by no means famous or well known on the internet.  I have focused most of my social media accounts on Chiari Malformation awareness and just preserving the essence of my experience since my memory is so poor.  The account that I probably use the most is my Instagram (FOLLOW ME: michellex2plus) and so it is where I tend to have the most interaction with people about Chiari.

I post about my headaches and without fail here come the Snake Oilers.  They tell me that their concoctions will not only rid me of my headache, but make my skin brighter, restore my soul, bury my skeletons, slim my waist, harvest my crops, improve digestion, restore circulation, align the planets and get mercury out of retrograde, thicken my hair, and make my nails grow.

I WANT TO BELIEVE ALL OF THIS!!!

The problem is that this is some person out there who saw a hashtag that somehow aligns with the product they have chosen to push and they don’t care that they might be derailing the actual healthcare of people.  They don’t care that there is no scientific proof that essential oils can fix Chiari Malformation.  They don’t care that being bombarded by false hope is disheartening and tiring after a while.  I have spent almost 3 years with awful headaches and there is no medication they have given me that stops them.  Yet, some person out there thinks that a coffee enema is going to get rid of my pain.  If that was really a thing, I would have done it already, as I am often desperate for pain relief.

To make matters worse, many of us with chronic pain are on a limited or fixed income and still there are people out there who are willing to take your little bit of extra cash in return for something that might help you feel good in some way but may not do what you were told it would.

I love essential oils.  I have one of those sonic vaporizers for the essential oil, and I often have something coming out of it.  Does it lighten my mood?  Sure!  Does it make me smile?  YES!  Does it take away any physical discomfort?  NO!  Have I had someone some to me touting the “healing powers” of essential oil?  Yes!  I tend to school these people on exactly why essential oil can not fix a brain herniation or intracranial pressure.  Then I let then know where they can learn more about Chiari Malformation and how they can actually help people.  Last, I block them.  I have done all I can and they need to get it together without me.

I have suffered.  I have cried out in agony.  I have plead for the pain to end however it has to.  I have sat as day after day ticks by and I lay in the same place drowning in the misery of a sea of hurt.  I WANT the easy answer.  I WANT the oil to take away my pain.  I WANT kale to make me whole.  I DEEPLY DESIRE the relief that spraying coffee up my hind-parts promises.

We live in reality folks!

Most people on the internet selling you promises aren’t properly schooled in herbal remedies and are not as familiar with plants and their healing properties as they claim.  Even if they are, you should be willing to do your own research, have a reasonable expectation (JUST LIKE WITH YOUR DOCTOR), and understand any risks associated with what you are taking into your body.

The road is long and there are not always answers for us.  I have to tell myself this multiple times a week.  Shortcuts won’t always lead to the finish line.  Sometimes we will just have to tough it out.

 

Splitting Headache

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It can be hard to accurately describe one of my headaches to someone who has never endured an injury that resulted in severe nerve pain.  In the spirit of spreading awareness, I would like to share some of the descriptors that I use when dealing with brain pain:

  • feels like my brain is being pulled out of the back of my head
  • feels like someone is shoving my brain into my skull
  • feels like a slow-motion explosion is happening (for hours) in my head
  • feels like a ball of magma at the base of my skull dripping electric magma onto my spine
  • feels like someone shoved rebar up my spine and impaled my head and is pouring concrete in my shoulders
  • feels like someone is blowing a balloon up in my head
  • feels like being hit by a baseball bat/2×4/pickaxe/sledgehammer/grenade/lead pipe at random intervals
  • feels like the hand of God pushing my head onto my shoulders
  • feels like my brain is leaking into my neck

I could go on and on.  There is not a pain that I can’t accurately describe using colorful language.  At times I use more color than at others.  I could never use just one set of words to describe the pain that graces my grey matter as it continually is morphing from one misery to another, afflicting different body systems as it crushes my faith in endorphins.

If you can’t imagine describing your pain in this kind of detail, count yourself among the blessed.  Hopefully that means you have never had to experience this pain.  If you have a list similar to mine, I offer my condolences.  There is no one who should have to deal with pain all or most of the time.  Unfortunately this is not how the world works and some people live with their pain as a constant companion.

So, if you run into someone or you know someone who has chronic pain, don’t even pretend to understand the level of hurt they endure.  As much pain as I endure, I don’t act like I understand the pain of others, I only know my own pain.  Just offer your support and comfort.  Chances are, any advice you have to offer is terrible or they have tried it and don’t go on a quest to fix them.  Just support and love.  Trust that you probably don’t know more than their doctors, so no medical advice!  Just support and love.  You would be amazed how encouraging friendship can be.

Pain Bomb

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I have been waiting for you to have a good day! (Pain Bomb)

Recently I have had the joyous occasion to have several days on little to no headache.  I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up.  I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain.  For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy.  It hasn’t even really mattered that other things hurt, the headache subsided.

Sure as the sun will rise, I will get another headache.  Probably sooner than later, but hopefully later because life is pretty nice without that burden.  Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me.  If course I believe He can.  Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.

I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments.  We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people.  Religion is not a baton to beat someone who is down.  The ultimate goal should be to love and encourage one another.  Most importantly, to listen to one another so we can now what they are feeling.

I know when I am feeling a headache coming on.  No one has the right to question that, or my faith, or anything.  I have spoken to so many people who have walked away from church or organizations because they were not heard.  People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself.  I hate it.  I know other people endure it and probably hate it too.  Just know, it is ok to educate people and to walk away if they choose not to learn.  It is ok to stop someone mid-sentence and let them know they are too far across a line already.  It is ok to stand up for yourself and straight out tell people exactly where they are messing up.  You are not inferior to anyone, so you are not required to stay and listen to nonsense.

You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people.  These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out.  It’s healthy and they can maybe learn about you with the added bonus of being quiet.

If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax.  The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do.  Be a friend, not a doctor.  We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.

I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later.  If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more.  We should grow in our relationships, and that can hurt, but it is worth it!!

All this being said, I feel the telltale heaviness inside of my head that precedes a headache.  I expect I will wake up with one but I hope that is not the case.  If it is though, I have had an awesome few days and I can live with that.

Not So Helpful After All

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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!