Pain Unthinkable

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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.

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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.

Laundry Mountain

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Exploring Laundry Mountain

I have done laundry since I was a child.  I did not grow up with my mother doing my chores for me.  It’s just one of those parts of life that takes a bit of time, but usually isn’t the worst thing.

Increasingly, I lack the energy to do the laundry.  I only do my own laundry, I expect my daughter to wash her own stuff (mom is not spelled m-a-i-d, as momma used to say) so it isn’t like I have an unreasonable amount of laundry.  I wash once a week, so it isn’t like I have a build up.  I just have laundry problems now.

Problem: Forgetting I washed clothes in the first place.

Solution: Only wash when staying home, leave the laundry room door open to hear the buzzer.

Problem: Leaving clothes in the dryer.

Solution: If I have the energy, I will just hang everything up to dry so it’s already on hangers and not wrinkled.  Otherwise, stay home, leave laundry room door open to hear buzzer.

Problem: Clean clothes pile up.

Solution: If I have made it past the first two problems, I am probably ready to take a nap.  If I can manage, I separate the clothes that need to be hung up and I fold everything else.  FOLDING IS TIRING!  I just deflate quickly from folding.  Then I lack the will to hang up anything.  Life starts to look like this:

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Put yourselves on hangers!

I took a nap beside this pile of clothes and hangers.  Imagine my dismay when I awoke and it was just as I had left it!  Betrayed by my own clothing.  It was sad.  It took 8 hours to FOLD two loads of laundry.  Then I slept all day the next day.

It seemed like such an insignificant task my whole life.  Now when laundry day comes, I am racked with anxiety about if I will be able to complete everything.  If I have a headache, I already know the answer is no.  If I don’t have a headache, I can probably do it, but I will likely get a headache.

In the end, the laundry has to be done.  Not just because I have to have clean clothes, but because I have a daughter that looks at me to see how I handle my struggle.  If she has to watch me struggle for hours, then I am teaching her that the struggle is real and we have to go through it, but we can get through if we persevere.  Sometimes the solution is to go slow and be methodical and cry if you have to because laundry is tedious and frustrating yet it can be done.

So, for all my people out there who feel like the smallest tasks are the biggest problems, take heart and know that you are not alone.  I know it is hard to not compare yourself to the before times or to other people who can do more, but we have to remember that we are individuals who have issues that can impact any or every part of our lives.  We don’t have to feel less-than because of it.  Of course it is easier for me to type that than to live that out, but it is something I have been working on daily.  I encourage you to do the same if you are able.

For the people reading this who don’t really understand what the big deal is, I as you to imagine only being able to complete 3 tasks a day before you need a nap.  So, after shower and breakfast, you can do one more thing.  Pray that it isn’t laundry!  It could be a doctor appointment, or two scheduled on the same day!  Now you are dead tired.  Le sigh.  Now imagine that every day you had to choose a certain number of things you could do.  Would you skip your shower to get something else done?  Now, imagine that 1/3 of the time, you aren’t even going to be able to get out of bed except to go to the restroom.  Those 3 things you normally do are now piling up.  It feels like this for some of us.  it’s not a great feeling because we really just want to lead “normal” lives, but we hold out hope that one day we will find answers…or at least that someone will feed us and hang up our clothes so we can do something fun too!

I want to do things…

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The things I wanted to do today!

After the gnarley headache, the nausea is the worst symptom I experience on the constant basis.  It is usually low level, but if the weather changes or the headache increases, nausea will shoot up and become THE ONLY THING THAT MATTERS!  My daughter is hungry? NAUSEA!  Front door unlocked? NAUSEA! House on fire? NAUSEA! LET ME LIVE!!!!

For most people it is a feeling they may have for a few hours or days, a couple weeks if you are pregnant (unless you are me, then 40 weeks) but for me it has been over two years and really, I am sick of it (no pun intended, but good for me).  It’s that feeling of sick RIGHT before you actually throw up but I just don’t always throw up.  I pray that I won’t as it makes for a terrible headache/vomit cycle that can get out of control quickly.

The worst is when I have a day planned and NAUSEA hits me.  It is paralyzing.  You don’t move unless it is to a more laying down position.  I lay there thinking about the things I was going to do.  Some things are only available for a time like dinner with friends or sales, some things I can do later, but the worst things are the ones I have planned with my daughter because she gets the short end of the stick.  She often ends up supplying my ginger ale and ice and ice packs.

I want to be able to do the things that I plan but I am at the mercy of a body that is kind of confused right now.  Most days I get through it, I ignore it, I get ginger or drink ginger ale, but some days, nothing but meds can cut through the nausea and the meds come with their own set of problems.

So, if you know me and I tell you I just don’t feel good, that is actually code for, I could throw up at any moment.  I am just being polite.

You’re Not A Doctor…

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You’re all not doctors!

One of the areas in my life where I am quickly gaining knowledge is compassion.  I was JUST beginning to think that I had a handle on it, but the further I get from surgery and the more normal (whatEVER that is) I “look”, the more I see where we fail each other.

Just because I look fine and I have not lost my intelligence or my moderate knowledge of things and stuff, people think I am doing great.  Of course I can have a conversation with you about how a combustion engine works and ways to make it most effective with the least waste of energy, but I open the spice cabinet almost every times I head my coffee up in the microwave.  Every single time I wonder where my coffee is.  Then I remember, I am not heating it up with spices, I am increasing the temperature.  Try the microwave.  There it is.  Or the day I was getting ready to go out and wondering why my boot felt so weird.  My daughter brought me my boot and removed the glove from my foot.  I laugh a lot at these events with my family because we are all scared of what they mean, and we don’t want to give up hope.

Yet people hear my witty banter and think I have no problems.  So if I don’t look well, they ask, and I’ll tell you if I feel like vomiting, or my stomach hurts, or my head feels like it is in the process of a slow motion explosion.  Then people advise me on what they think the best remedy is.  You know my favorite is Kale.  Apple cider vinegar mixed with water twice a day.  Just give it all up to the Lord because by his stripes you are healed. (I hope my fellow church-folk didn’t think they would get away.  Y’all the worst sometimes.)  All of these answers I get without just a listening ear.  Now, I just tell people I’m alive and go one about my business if I don’t avoid them altogether.

None of my doctors will see me right now, so maybe it’s a good thing that I am running into all of these people who know everything.  We are waiting for the Cleveland Clinic visit because no one can fathom what is happening to my brain.

I know this though, you probably aren’t a doctor.  More importantly, even if you are, people need comfort and validation during difficult periods in their lives.  Stop giving so much advice and give some compassions, concern, love, attention, and care.  It will help the people who need it so much more.

Also, check out The Life Of A Music Monkey to read about the highs and lows of my errday Chiari!