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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Neurologist And Neurological Mess

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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!

It is Time Thirty ‘o’ Clock

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What is time anyway?

I am pretty sure I have talked about it.  Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time.  I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.

This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect.  I am not creating mile markers in time.  I can still tell what time of year it is by the sun, but what does that even mean in the context of real life?  I have to live by a schedule that I loved at some point but now I feel like it is a burden.  What if my body does not FEEL like getting up and going to another appointment.

Doesn’t matter because I have to go anyway.  I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh.  The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck.  Am I rambling?  Sorry!

In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are.  Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health.  We are working on it.  It is a little harder now that I can’t drive.  However, know that you are not the only person going through this.  If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND!  I feel you.  I too am tired.  I too had med-head.  I too need to take 2, sometimes 3 naps a day.

If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury,  Either by book or by force.  No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries.  (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).

That’s not true! You yell at me!?  I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist.  I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head.  Technically they were, just they were now starting to fall out!

Especially in out intelligence we must consider how to humbly deal with the unknown.  The last three years of my life have remained largely unknown to me.  My doctor says that it won’t come back.  It is lost forever.  The people I have met, the things I have done, washed away as I open my eyes from sleep.  waking up every day, checking my phone to see the day and month.  My life is like a mouse treadmill right now.  It isn’t really going anywhere and the scenery doesn’t change.  I hope that this part of my life gets more interesting, sooner.

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.

My Head Says, “Hello!”

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Hi Michelle!  How is your head?

It may be PETTY, but I am going here anyway.  Most people I know are aware that I have had brain surgery.  Many know I suffer headaches and other symptoms still.  Some actually understand the surgery and issues.  A golden few ‘get it’ and they are my favorite folks. (I want so badly to be sorry, but I am not.)

So, prior to my whole head thing, people would say things like, “Hey Michelle, how are you?” or “How are you doing, Michelle?” like normal folk do.  There has been a change in the greeting and I am going to be honest, it drives me to the point of unfathomable ire because it turns me into the very thing that I am struggling with.

“Hey Michelle!  How is your head?”

Uh, small and hurting, but what about the whole rest of my being?  You know, my emotions, my heart, my mental status, and every other part that effectively sums up “MICHELLE” is stripped away and all that is left is a head with a name.  I am more than just my head.  I know people WANT to hear that my head is doing fine, that allows them to infer that I am also fine.  The only answer I have left to give is that I am still alive; My head is still there and as far as we know, my brain is still in it.  THEN I AM THE BAD GUY!  When they were just trying to be nice and see how I was doing and you know, I shouldn’t pay that close attention to the words people use because sometimes they speak so carelessly…but THAT is the problem, isn’t it?

People speak carelessly.  Not choosing their words to comfort one another, but using words that betray their true desire; to get the skinny on someone so that they can either be thankful to God or whatever that person happens to believe in because there was a healing, or to question the validity of one’s faith or illness.

Then I told people I had balance issues, they thought nothing of it.  We’re getting old is what everyone likes to say.  When they see me with a cane because I fell or do not feel steady, then somehow my issue can be taken seriously.  Now that I have a medical aid, I am much more believable.  Now the focus is magically pulled back and a fuller picture can be seen.  Weird how that works.

If I come back without the cane, I am fine again.  Often, people do not take the time to consider the real situation of another person.  So, they will ask what is wrong, but they don’t really want to know if it isn’t good or gossip-worthy.

In closing, I want to say that if I am of concern to you, ask about ME.  If you are that concerned about my head, ask my neurologist.  Choose your words to interact honestly because I feel when there is callousness and fakery in your words, but I usually just allow them to hurt me because I am used to pain.

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.

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.