Tough Pills

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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!

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A Whole Life

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Chiari is not my whole life

However if you knew read my blogs or followed my social media it is easy to assume that all I do is sit around having Chiari all day and writing of my sufferings.  I hope that is not the way I come across, but a lot of my life has been medically related in the past few years, so it is a big part of my life.

I am sure that I have spent time talking about some of what I do at church, but I also have other things that I enjoy that I suppose I don’t always speak about.  Even I have to remember that pulling back the veil also means exposing how I spend time enjoying myself during difficult times and what I do between flareups.

At my laziest, I am watching Gumball on Hulu.  Just over and over.  At my best I take walks around my neighborhood and take pictures of people’s flowers.  I make videos, I play ukulele, I bake cookies.  I have a range of interests that is ever expanding as I crave information and knowledge.  One I am able to master something (which is almost impossible now, but it happens) I am ready to move forward and learn something new.

I just picked up a unicorn cross stitch project.  I have avoided cross stitch and needle point my whole life, and here I am, ready to learn.  I have been considering crocheting or knitting again.  I know that my fingers aren’t as nimble as they once were, but I will use them until they don’t move.  I am thankful for every bit of strength I have left.

Sketching, drawing, and painting have always been activities that I enjoy but I am not that great at.  The funny thing is that at this point I understand it is more for my enjoyment because I am not in the business of selling paintings.  I can enjoy my ugly paintings.

I have taken to watching Marvel Comic Universe movies and reading DC comic books.  Neither have ever been interesting to me, and they still aren’t really, but it gives me something to talk to other people about, so in that sense it is worth every minute I put into it.

Writing has become a necessary part of my life, so I have begun writing a book.  Still debating on publishing the one I wrote.  I just chaired our Chiari walk and I am plotting and planning, praying to get the right people in my path.  I am ready to start taking advocacy to another level and while I know I have a few obstacles to overcome, I know this is where I am supposed to be.

I suppose thinking about it, it is hard to see how all of these things are woven into my life along with the family, church, and so many doctors.  However, I encourage you to MAKE the time to do something that you enjoy for at least 30 minutes a day.  An hour if you have access to the time.  I usually can’t focus for more than an hour or so.  If I have a headache, maybe 15 minutes.  Always keep something with you that you can do to keep you mind functional during slumps in the day.  Some days I just play with my fidget dodecahedron (yes, I am THAT girl) because it requires zero thinking.  Other days I get on my 3Ds and play video games.  I can do it for about ten minutes before I tire of that!

There are so many options, even listening to audio books and just resting.  All of these things are great for helping to get through days that aren’t the best or the worst.  I look at what I go through just trying figure out what my brain is doing and I know that other people out there are going through the same or worse with less support or resources than I have.  My mission is to figure out how to change that so that people can get through these times with hope and purpose in their lives.

 

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.

Rock Steady!

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Rockin’ it!

The last few months I have been trying to build a habit of being habitual.  Each month it is about a different thing, but it seems like my mind has done fairly well at remembering it needs to do SOMETHING each day, even if it isn’t sure what it will accomplish.  I can say that in November I spent every day (except on when my daughter got stitches) writing and I wrote over sixty thousand words!  Who would have ever thought that I would do something like write a novel?  It is a collection of my days and events and memories.  I just started reading it from the beginning and it is already weird.

What I learned is that I am able to apply myself for a small period of time each day and slowly finish a project.  December is going to be a little tough because I will be making and uploading at least one video per day!  If I can do this, then I think I will have more than proven to myself that I am able to be productive.   I don’t feel productive, but I am doing things.

Still, in the end, I am very proud of myself and I feel like I have exceeded my own expectations and I haven’t had those feelings in a long time.  I know I put myself into a box because I don’t want to fail but at this point in life, I personally have nothing left to lose.  At this point it is solely about ego and how I would feel about myself as a person if I went out there and failed again.

At this point I finally understand that it really is about the journey.  I could still be so angry inside and depressed.  I have not tackled all of my issues, but I am glad to be able to smile again and I am stating to enjoy things again.  Like, I took my daughter shopping for her Christmas gifts.  I don’t have the stamina like I used to, but just being able to hang out with her and talk with her was fun.  I miss it.  I try not to think about it because I am content to hang out at home, but she enjoys going out (like teenagers do) and walking around and looking at things.

I am going to physical and occupational therapy now and doing it at home.  I was supposed to start speech therapy but the lady was sick.  That will start soon.  I am in dance and being active as much as possible.  I am like a professional superstar patient.  I have embraced that I am part of the solution and I must do my part.  In my head, I am on a mountaintop playing air guitar because I am awesome!  We are all awesome in our own ways.  We each have difficult obstacles to overcome in life.  My hope is that everyone finds their mountaintop and feels the rush!

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.

Summer Melting

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Las Vegas Summer!  I am melting

 

Living in the desert has some very distinct disadvantages for me right now.  I have lived out here (for the most part) since 1996 and coming from New Jersey, I love the winters here.  The summer was always awesome too, until I had the brain surgery.  I had the surgery in December and I remember going outside in the mornings and being warm while my sister was bundled up.  After a short walk around the courtyard pushing the walker, I would come back inside and have to take off all excess clothing.  She told me I kept it freezing in the room.

I don’t remember much of any of the previous summers, but TODAY was hot enough to melt my thoughts (around 115).  I rapidly lose energy and focus in the heat so I tend to plan my events so the I am not outside for a long time.  I have to have air conditioning in a vehicle or a building.  I can overheat from doing my hair.  Or getting dressed.  It feels like such a horrible weakness to have in the desert.

I try to remember that I am blessed to have refuge that not only has AC but also cable, food, and a pool.  It is easy to focus on what I have lost: I have the lost the ability to endure extreme heat.  As I learn my life lessons, the positive things that have remained or increased have begun to outweigh the negative things.  In reality not much has changed except my perspective.  Turns out that was the most important change that could be made.

Still, at times I find myself in the broiler that is outside and I am amazed that the human body can withstand such brutal temperatures.  People have lived in the desert for many years in all kinds of deserts.  I am so thankful that I had the opportunity to endure the heat and work in it, and hike in it, and all other manner or activities I did.  I enjoyed those times so much and I had an awesome tan!  Now, I am thankful that my life affords me so much air conditioning, cold water, and frozen treats.  I have what I need and in this world that is a miracle.

If you find yourself in a situation that is not awesome, take the time to consider the good things.  Now, this is not what you should do if the situation is dangerous or abusive, but if you are just in a funk about life or a thing, take time to consider the things that you have that seem inconsequential but make life so much more convenient and comfortable.  If this exercise doesn’t even come close to touching your issue, I recommend talking to someone (from a trusted friend to a therapist) who can help you get the assistance you need to live a happier life.

Should you see or talk to someone who is in a terrible funk about something, let them vent and blow off steam.  Many times people just need to direct their excess energy outward and then once they let everything out they can think a little more rationally.  Never undervalue someone’s feelings or their current reality.  Each of us has a unique life experience and each person has something that they struggle with.  Some people have multiple things.  Lending a caring ear and validating that the person has a complaint (even if you don’t agree) allows a person to feel heard.  I often spot my own flaws in thinking when I vent.  Hearing my thoughts out loud helps me to make sense of my feelings.

I wish more people could understand that my body does not tolerate heat well.  I don’t want to be the only person sitting inside at gatherings.  I don’t want to be the one who avoids get-togethers because they are outdoors and I can’t do over 75 degrees.  I hate that temperature is something that influences everything from household comfort to vacation destinations.  I am not trying to be the center of attention or bail out on my friends.  I know I LOOK fine, but I am not OK.  I have symptoms that control most of my life, from walking to the going to the restroom.  Life for me is a little crazy.  So, if I am going to take the time to get ready to go out with friends, it is because I have been guaranteed a nice cool place to rest.

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.