Life with Chronic Neurological Issues – Always in ER Mode

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Growing up if you asked me where I thought I would be when I was 41 my answer would not have been living a life of daily torture.  I probably would have told you how I was going to be a veterinarian or possibly a doctor. I also would have told you of my great plans to save all the sick and homeless animals in the world and give them a special place to call home.  I wanted to create a sanctuary.  I might have even told you about my dreams to have a restaurant and delight people with my creative culinary gifts. Make no mistake I had grand plans to be able to help people and animals in my lifetime in various ways.  But as it turns out my path in life has turned out to be a medical mystery and a guinea pig.   Over the past 14 years I have been in a cycle that won’t stop.  My life has been a revolving circle jerk of scoliosis, back injuries, chronic back pain, chronic neck pain, and then the diagnosis of two brain tumors.  A neurosurgeon’s assistant once told me “basically your central nervous system is fucked up.”  She was trying to explain the logic behind why I have so many complex health issues that are hard to diagnose or treat.  She said it better than any doctor has so far.

 

As I’m writing this I’m fighting the urge to head to the ER due to some severe pain and stiffness in my neck combined with horrible head pain/pressure and headaches.  WebMD tells me I could have at least 99 issues some of which are meningitis, brain tumor, headache, migraine, muscle strain, cervical stenosis and so many more that are scary.   I am a brain tumor patient so everything is more complicated. We removed the Acoustic Neuroma but I still have the Meningioma and a slew of issues left over from the AN as well as brain surgery itself.  Shortly after my brain surgery I needed a Cervical Spinal Fusion to keep me from being paralyzed.  We discovered that my cervical spinal cord (neck) was being compressed.  I was starting to have major issues and early signs of being close to paralyzed.  Brain surgery alone was a nightmare and hard as hell. I’m 20 months post op and still not recovered. But to combine it with a major cervical spinal fusion well that’s just a CNS (central nervous system) cluster fuck!  Your CNS is your brain, spine, spinal cord and all the nerves combined.  It is the most important thing in your body because without it you die or all your organs and bodily functions don’t work.  Think of it as a highway that branches off to various parts of your body.  For a healthy person with no issues in their spine or brain they will have an efficient body that heals itself and functions properly.  For someone like me with a major traffic jam in my CNS well nothing works right.  Anywhere!

 

it never ends

Daily life is frustrating and painful for me.  Since I injured my lower back 14 years ago I have been in constant pain, agony and suffering.  I have had numerous major surgeries on my spine, neck and now brain. And those surgeries have created other symptoms or problems. Most days I am trying to figure out what the symptoms of the day mean or could be. I have decent days occasionally where I feel human.  But most days I have horrible chronic pain in my low back, neck and often my head due to chronic headaches of various kind. I am daily enduring so many symptoms it’s hard for my doctors to nail down a diagnosis.  So many of my conditions are made worse by other issues.  But basically, my entire brain and spine aren’t functioning properly so nothing in my body functions properly.  So today I am in what I call ER mode.  I am having symptoms that are very concerning that might be something deadly or could be nothing or they just can’t figure it out.  I must not only suffer through the horrible pain I’m having but to try to figure out if it’s worth wasting an entire day at the ER.  The place where they poke you with numerous needles, starve you to death and put you in a loud room with horribly bright lights and give you no answers.  I promise you this when you are in pain that is not what you want.  You want quiet, peace, and a comfy bed and maybe your favorite shows to binge on.  You don’t want to be poked and prodded and then wind up with no answers after its all over.  ER mode isn’t fun. It’s wasting my entire weekend because I can’t function.  I must wait and evaluate the necessity of going to the ER vs. waiting to see my doctor Monday.

 

When you have a brain tumor and are a post brain and spine surgery patient everything scares you.  If your toe hurts you worry something is happening in your brain or spinal cord that shouldn’t be.  It sparks a fear in you that no one understands except the people who battle neurological issues, the warriors.  When you combine the major brain issues I have with the spinal cord issues and back/neck pain issues every day can feel like an emergency.  Every little symptom can scare you.  You learn to know your body, listen to it and know what is normal.  You pretty much must become a doctor so you can keep up with the daily changes. Then you must communicate all these issues to all your doctors (I have many specialists) so they can process it and attempt to find answers.  But more times than not you are still left with no answers to all your problems.  Like I said before it’s a damn circle jerk! Living a life of constant pain, suffering and frustration is hard.  You don’t really worry about the little things in life anymore like what to wear, what your weekend plans are, who you are seeing, relationship drama, flat tires, traffic, work drama and stress. You are living a daily emergency.  You are in ER mode all the time. If you are lucky the planets will align properly, the weather won’t make your issues worse and you might have a few days where you can function enough to fully dress yourself and maybe run an errand.  But everything exhausts you.  Because living in constant ER mode is draining and taxing on your body and mind.  Then after the ER mode passes you just move on and try to keep functioning and being productive.  It’s a hard life and draining.  Most days I have no idea how I do it.  Friends and even strangers are always telling me how much they admire my strength.  I appreciate that so much. I don’t know if I would call this strength.  Some days I’m a total nutcase and a psychotic mess due to all this crap.  But it motivates me to hear it.  So thank you to all the people who see my struggle, my weaknesses, but also my courage to keep going knowing the suffering still awaits me.  Not knowing if it will ever get better.  People like that motivate me to fight because they see something in me that I often don’t.

 

suffering strong soul

 

“I don’t know why my path in life was chosen to be a circle jerk of daily suffering.  But I have learned to accept it was for some reason.  I must believe that reason is greater than just me.”

 

 

suffering quote

I don’t know why my path in life was chosen to be a circle jerk of daily suffering.  But I have learned to accept it was for some reason.  I must believe that reason is greater than just me.  The thing that keeps me going daily is that somehow all this suffering I endure will count.  That it will matter for someone else, if even one person.  Maybe my life as a medical mystery and guinea pig will one day be the thing that solves some neurological mystery.  So, for all of my fellow warriors who fight the daily battle of being in ER mode and constant worry.  Continue to be strong and brave.  Even when you want to give up, don’t!  Because in this great big universe that is easy to get lost in, you matter. You matter to someone and likely many.  Through our pain and suffering knowledge is gained by doctors and patients.  Through our strength and bravery, we motivate others.  Simply put you matter and I matter.  Even if that sole purpose is to help others feel not alone in their chronic health battles.  Maybe I won’t get to be a doctor or a veterinarian in my life or have that animal sanctuary.  The one thing I know I will do and am doing is help others. It may seem small most days. But even the smallest drop of water in an ocean creates a ripple.  And that is the one thing that gets me through all this suffering.

 

ripple quote mother teresa

 

 

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I’ll be back soon…”Gone surgerying”

So “Gone Surgerying” is kinda like gone fishing for those of us with chronic health issues. In sorry I’ve not been blogging lately. I have recently had another major surgery. A spinal fusion of my cervical spine/neck. Just recently home from hospital and highly medicated and exhausted. I will have more fun topics to discuss soon and get back at the blogging. I’m enjoying the meds for now and trying hard to stay awake long enough to watch one episode of Game of Thrones. That’s the bad part of the pain meds. They knock your ass out. Below is a diagram of the cervical spine fusion I had done. Not fun or pretty. And very painful. And also a picture of me in the hospital.  Hope you all are doing well and I will come up with some new posts very soon. Hugs to all my followers. 😄
This is an Anterior Cervical Discectomy and Fusion. Yeah my neck is quite sore. 

Surgery Drugs make you smile! 

 

 

Go Gray in May: Brain Tumor Awareness Month

gray in may me

As most of you know part of the reason I started Dizzy Deaf Warrior is because I was diagnosed with a brain tumor last year.  I have been on a long hard journey since last April with this tumor, the brain surgery and the outcome.  This month in May I will focus my blog on Brain Tumor Awareness all month long.  Dizzy Deaf Warrior is Going Gray in May to raise awareness for brain tumors.  I will have lots of interesting facts and stories about my journey I will be sharing this month.  Please join me this month in going Gray in May to help raise awareness!

To find out ways you can help raise awareness here are several links to my favorite brain tumor organizations and sites:

http://www.abta.org/

http://braintumor.org/ 

http://www.cafepress.com/braintumorssuck 

https://www.facebook.com/BrainTumorsSuck

 

 

The Battle Within Yourself: Being a Hostage in Your Own Body

This post isn’t some inspirational build you up false hope post. This is real emotion about what I am going through.  I don’t know if this is helpful to others.  But maybe it will help people understand what we chronically sick people deal with daily emotionally.  So read at your own discretion without judgement. This is what it’s like to be in the mind of someone who battles their health daily.

it never ends

I’ve been really down the last few weeks.  Hell let’s be honest I’ve been down the last year.  This past week was the anniversary of when my life came to a screeching halt.  In one day I became so sick that my life stopped.  I was hit with the stomach virus that left me with horrible vertigo and a world of hell.  This lead to the diagnosis of my Acoustic Neuroma brain tumor.  Needless to say it’s been very hard physically and emotionally.  I have moments of scraping myself off the floor and getting back up.  But ultimately it seems something else is always trying to knock me down.  At times I feel like the Universe is conjuring against me to see if it can break me again.  So much crap has hit me in this last year.   I was just put in the hospital again last week.  And it has worn me down.  It’s hard to explain what is going on with me to people who have not gone through it.  I feel like I have let so many people down because I cannot give what they expect of me.  I feel like my relationships are strained. I feel like I have lost so many people in my life because of my chronically ill body.  But on the inside of this chronically ill body lives a lively person with feelings, emotions, passion and desires.  There are so many things I want to do with my life, but my captor will not let me.  I have become a hostage in my own body.  Desperately fighting to get better so that I can live out my desires as normal human.  The only way I know how to explain to others what it’s like to be chronically ill, is being a hostage.

For many years I’ve suffered with horrible back pain. I have struggled with life trying to live it as much as I could while battling pain every second of every day.  I tried to do my best to maintain past jobs fighting through the pain. I tried to be a good friend and show up and be present in my friendships.  I tried to have relationships and give my all to them to prove that I cared.  I did these things while suffering every second of every day in horrible pain, while being a hostage I my own body.  It wasn’t easy. I gave all I could.  But for most people all I could give was never enough.  Eventually people start giving up on you because all you do is disappoint them.  And the reason you disappoint them is they have no idea what it’s like to live a life of pain where every little thing you do makes it harder.  They expect from you the same that they give or are able to give.  But the problem with that is someone with a chronic illness can’t always give what a healthy person can.  It takes twice much if not more to do simple things that they don’t even think about doing they just do them.  Like getting dressed, just for me to be presentable for public viewing takes so much effort and pain. By the time I am showered, hair done, make up done, wardrobe picked out and put on…well I’m utterly exhausted.  I have no energy left for getting out and having fun.  I can’t follow through on the plans I so desperately want to keep.  So friendships drift away. Relationships fizzle out.  And eventually you are sitting there all alone fighting by yourself.  You become scared.  Scared that you won’t be able to fight this battle alone.  At times you start to think you will be alone forever.  Because who is going to want to take on the huge challenge of being in the life of a person who is always sick or battling major health issues.  And in that moment you are reminded that you are a hostage.

run away

Who do you blame for this hostage situation?  You are angry and want to blame someone for the damage that was done to your life.  For all the things this pain and illness has taken from you. But there is no one to blame.  You didn’t ask for the health circumstances you have.  You didn’t do anything to get a brain tumor or a bad back.  And no one else did either.  There simply is no one to blame.  That doesn’t make it any easier.

My suffering has been long and hard.  Dealing with one chronic issue is bad enough, especially chronic pain.  As if battling debilitating chronic back pain for 13 years wasn’t enough, last year in May I got diagnosed with my brain tumor.  I have struggled so much with this tumor that has taken so much from me. It’s taken my hearing on one side, my balance and ability to function normally.  It’s taken my quiet and peace of mind leaving me with constant nonstop horrible ringing in my ear.  There is never a moment that doesn’t have horrible sounds that torment me inside that no one else can hear.  At times you think you are crazy when you hear these sounds, but Tinnitus is a reality for many Acoustic Neuroma patients.  This tumor has taken away my ability to drive and work.  It took my ability to get out of the house when I want and my freedom to see my friends or even date.  The tumor was taken out and that is what I am left with after surgery.  This recovery has been a living nightmare.  Its worn me out physically and emotionally on top of the chronic pain I was already in.  As if that wasn’t enough before surgery I had an eye virus from hell that put me in the hospital for a week. I battled it for months and then it led to the diagnosis of another brain tumor, my meningioma. Then that wasn’t enough, after my brain surgery I started having horrible new neck pain along with my existing back pain that caused my arms and legs to go numb.  I found out I have a compressed spinal cord and pinched nerves in my lower back.  Now it looks like I will need surgery to prevent further damage to my spinal cord and to prevent me from being paralyzed.  I live in fear daily now that any move I make will be my last.  It’s terrifying to think one day you could be walking and the next you could be trapped in a body that can’t even move.  And if all that wasn’t enough…the very medicines I used to control all my pain from those issues are what put me in the hospital.  Now I’m weak with no energy at all. Since last week after I got home from the hospital I have been pretty much in bed.  I simply can’t function.  My body is weak and dizzy and falling over almost every time I walk.  Again I am a hostage.

When I was a kid I remember looking forward to being an adult.  I had so many dreams for myself.  You plan so many things out for your life.  Like being a wife and a mom and having a family that loves you and you who love.  Having a successful career.  I wanted to travel and see the world and learn about different cultures, eat amazing food and enjoy the beauty of this world. I wanted to be the kind of mother that raised amazing little humans who would make the world better one day.   But then you grow up and find out life doesn’t go as you plan it.  I never would of thought at 40 I would be suffering with several chronic illnesses, divorced, and with no kids.  All alone.  I thought I had control over my life and the paths I took. And I do to some point. But once again reality has reminded me that I do not have full control because I am a hostage.  I am a hostage to these health issues that torment me daily.  I am trying so desperately to escape this prison my body has created and trapped my soul in.  But every time I fight and think I’m winning it challenges me again.  I keep having more issues thrown at me.  And it utterly wears me down.  You look back at your life and all you can see are things you didn’t get to do because of your crappy health.  Because of this when new opportunities or people enter your life you get scared.  Scared that you won’t be able to live up to their expectations of what you can do.  Because you simply aren’t in control of your life anymore.  At times you push people away because you don’t want to bring your misery into their life.  You realize it’s bad enough you are suffering but as much as you want to live your life freely you also do not want to ruin another person’s life with your problems.  So you retreat and again you are a hostage.

Living a life in chronic pain or illness is not easy. It’s not just the physical issues that wear you out. But the emotional side of it.  You fight every single day with all you have to get better and get your life back.  But something keeps happening to remind you that you are a hostage and not in control. It utterly wears you down.  But with any hostage situation you have two options.  You can either allow your captor to control you or you can fight for your life.  I have been fighting for my life for years. This captor of mine is mean and hard to battle.  So I have to look inside and see the things I want and fight hard to escape this prison I was put in against my will.  I have to wake up each day and set goals for myself.  They may not seem like much to most people.  But they are huge for me.  Because when you are a hostage and someone is constantly tying you down and beating you up even the little steps you take to get out are huge.  Eventually one day with enough of those little steps you will find your freedom again.  But the one thing you have to remember is do not give up because you can’t become free in one day or with one step.  It will be hard and it will test your every ounce of being.  And though you want everything all at once you have to appreciate the small hurdles you’ve crossed. You have to see that there is no time frame you can set on freedom or your recovery.  But stay focused on the light ahead of your darkness.  Just take one step at a time and slowly but surely you will arrive at a place that is good with peace.  Eventually you will look back and see all the chains that held you back that you broke free from.  In that moment you will see that you are no longer a hostage but a warrior that is strong and full of light.  Because you fought an impossible fight and you won.

warrior woman

 

The Hits Keep Coming…

Hello everyone I’ve been a little behind in posts the last week due to some overwhelming bad news that I will explain in a minute.  First I want to start this post by saying a huge thank you to my fellow blogger over at livingalunglife.com.  She has nomliebster-award-cleaninated me for The Liebster Award which recognizes new up and coming bloggers to watch.  I feel truly honored for the nomination and I will make another post about the award and follow the rules to keep paying it forward.  I hope that I can continue to inspire others with my story and struggles I face each day.  So don’t think I don’t appreciate the nomination I really do, I’ve just been overwhelmed with issues this week. I hope to follow through with my duties as a nominee within the next couple of days. 🙂

Now back to why the hits keep coming.  If you’ve been reading my blog, you are probably familiar with the fact that I’ve been through a lot with my health over the years and very recently.  It seems like the last 13 years of my life have been nothing but pain, suffering and major health issues.  For 13 years I’ve suffered chronic back pain, had numerous back surgeries, procedures, treatments, tests all of which have not helped the pain.  In addition to that for most of my life I’ve just had poor health. If the wind blows the wrong way I just get sick.  I’m not sure which parent to thank for my horrible immune system but thanks Mom and Dad!  You could say my life has become one similar to that of a Lab Rat.  I get poked and prodded and have new treatments, drugs, surgeries, tests, and everything under the sun done to me.  It seems like nothing ever helps and just leads to more unanswered questions and tests.  I am sick of being sick and of living in hospitals and doctor’s offices.

So as if all the crap I’ve been through for years with my health wasn’t enough. This past April is when my first brain tumor the acoustic neuroma decided to make its presence known with some horrible vertigo that hit me hard and fast stopping my life in its tracks.  Oh and also getting me fired from my new job.  Thanks brain tumor!  During the course of my journey with that tumor, finding my surgeon and getting ready for surgery I got hit with a horrible eye virus from hell.  I actually officially call it the eye virus from hell because that’s the best description.  I was supposed to have brain surgery to remove the acoustic neuroma in early August of 2015.  But the eye virus from hell appeared swelling my eyes so bad I could barely open them.  I was nearly legally blind for weeks and in severe eye pain and horrible headaches.  I was running a fever and it made me horribly sick.  My eyes were so red and the swelling was so bad I didn’t even look like me.  I was hideous looking for a while.  This virus put me in the hospital for 5 days.  The first hospital misdiagnosed me and sent me home after a few days of major IV antibiotic treatments and eye care.  I only had one eye infected at the first hospital and when they released me I seemed to be getting worse and the other eye started to show signs. So I questioned them. Also when I say they misdiagnosed me, they told me I had MRSA.  MRSA is a word that should scare you, it’s an antibiotic resistant bacterial infection that can kill you.  And it supposedly was in my eyes, near my brain…the brain with the brain tumor in it. You could say I was a tad scared.  They released me and I get home. By the next morning my other eye was just as bad as the first infected eye.  So we decided to head to the ER of one of the top hospitals in Dallas, UT Southwestern Medical Center.  I am so glad we did!  First of all, I show up to the ER looking like Quasimodo but worse! I was so sick by that point I could barely stand up and was horribly weak and running a high fever and nearly blind.  Long story short UTSWMC got me admitted quickly and started running tests.  They quickly ruled out that I did not have MRSA the deadly infection the previous hospital told me I had and terrified me about.  They had all sorts of specialists come to see me. Had about three IV lines in me since they had to run a constant flow of antibiotics in me around the clock and also have other lines to give me other meds and take blood.  They found out in less than 24 hours that what I had was a virus that was usually not that bad but mine somehow just was.  Lucky me!  You are wondering how I got this virus.  We retraced things to figure out how and discovered that it was me who gave it to myself in the weirdest of ways.  When I was doing my pre-op clearance appointments for brain surgery I had to do a PFT (pulmonary function test).  Basically this test is breathing exercises into this face mask that makes you look like Darth Vader.  When I did the test at my doctor’s office I had pretty much been home for months sick from the brain tumor and not exposed to any new germs. Well guess where germs like to live, at doctor’s offices.  So we think that I picked up a virus at the doctor’s office since I was going so much at the time. When I did my PFT test I had to blow really hard and I felt a sudden air bubble/force in my eyeball through the little tear duct.  That is when the virus got spread to my eye by infected snot being blown in my eyeball.  Normally it would have just caused a respiratory infection.  But when it gets in your eye…well it can cause PURE HELL!   That’s my kind of luck I’ve had in my life.  Before I left the doctor’s office that day my eye had already started turning red.  So we knew that was the source.  But seriously, who blow’s snot in their eye and winds up with a death eye virus from hell?  I’m patient zero on that one.  Once they diagnosed me properly and got me on the right medications within a day of treatment I was doing so much better. After a few days I was able to go home and continue treatment and working closely with my new ophthalmologist.  We did have to reschedule my brain surgery until the virus was all clear out of my system so that delayed things a bit.

So far last year was bad. Up till this point I had endured the hell of my brain tumor and the eye virus from hell.  Little did I know that we would find more… In August we did another MRI right before surgery after the eye virus to be sure all was good for surgery.  In this MRI we found another brain tumor, a meningioma.  This one is small but it’s in a tricky location. When my surgeon called me with the news my heart stopped for a minute and tears rolled down my face as he explained it to me on the phone. This second tumor is behind my left eye resting on my temporal lobe.  The biggest concern at the moment is if it grows towards my optic nerve I could go blind in my left eye.  Now you have to realize having one brain tumor is scary enough, but two in the same year well I was in panic mode.  This terrified me.  The only source of comfort I had was knowing it was small and this type of tumor typically grows slow.  So despite the horrible things this tumor could eventually create for now it’s small and we are going to keep an eye on it, pun intended.  J  The time came for my brain surgery in September to remove my acoustic neuroma.  It was a hard surgery but I made it out alive.  The last 6 months since surgery have been hell.  The surgery to remove the tumor forced them to sever my balance nerve in order to remove it all, and my hearing nerve was damaged.  I lost my hearing in my left ear as a result and now have nonstop tinnitus (ringing) in my left ear that drives me insane 24/7.   So I’m dizzy all the time, have horrible balance and fall over often and I’m half deaf.  I have to use a cane to walk most of the time, which is an upgrade from my fancy walker I had for months!  At least it’s a cool cane as the kids I often see out in public tell me since it’s got black and silver snake like scales on it.  This recovery has been hard.  I could make a list of all the daily issues I have but that might take me a while.  I’ve also gotten chronic migraines from the surgery that are horrible.  I have brain fog and major fatigue.  My memory is horrible and I feel like I repeat myself often and have just become an idiot since surgery.  But I was finally starting to get to a point where I’m becoming a little more active. They still won’t let me drive but I’ve been trying to get out of the house more.  I thought progress was being made.  I was being positive, so happy to have created this blog and trying to start helping others from my lessons learned. Till I got some bad news last week.

Since brain surgery my back pain has been bad likely from inactivity and I’ve been having some really bad neck pain that was new.  I had neck pain in the past but it was minimal and I figured it was usually from poor posture.  I went see a pain management specialist because I knew I didn’t want to do any more back surgeries to fix my messed up complex back.  But I was hoping he could at least help manage my pain with some injections or other minimally invasive treatments.  He was shocked at my x-rays from a few years ago and how bad my back was.  He even said this truly explains why you hurt so much.  We went over my long history of issues with my back and he did an exam. He was concerned about some of my results from the exam and with the pain in my neck and its severity he wanted a new MRI.  Monday I got a phone call from him.  Now in this past year I’ve learned when the doctor calls you after an MRI and not the nurse, it’s not good news.  Especially when they call you really quickly after your MRI.  He told me that they found some serious issues with my neck.  We talked for a long time and he threw out some medical terms that none of you will likely know because I didn’t. But to sum it up, I have 3 herniated disks in my neck, bone spurs, narrowing of the spinal cord canal and my spinal cord is being compressed and flattened.  Now if you know anything about human anatomy you’ll know the spinal cord is a major player in how your body functions.  When you have a problem with it, that’s not good.  I asked him what that all meant.  He told me that if we did not intervene and correct the issues with the compression of my spinal cord that I would face being paralyzed and possibly even some life threatening situations.  Fear hit me hard at that moment.  He said I know you don’t want to have another surgery but this is necessary.  So he’s referring me to a neurosurgeon. I asked him if this was something we could just do pain management with and put off major surgery for a while.  He told me no.  He could try to help with my pain but he doesn’t think he can and waiting only puts me at more risk.  So here I am 6 months post op from brain surgery and now I’m facing another major surgery of my neck and spinal cord.  You could say I have a bit of anxiety right now and I’m scared shitless.

So this is why the hits keep coming.  It seems like my life has become one huge medical issue after another.  I’m really sick of being sick.  I’m trying very hard to keep it together and not break down. I’m also trying to stay positive.  But I’m human and one person can only take so much.  This week I’ve gone from a crying mess to angry to scared back to a crying mess to screw this crap I’m gonna fight it!  Everyone tells me I’m strong and I will get through this.  I’m glad they think that!  But I know they are right.  I’ve been hit with more than my fair share of bullshit in my 40 years on this earth.  As hard as it may be I do bounce back eventually.  I don’t know that this post will motivate anyone cause it’s really more about me telling you all the shit storm that is my life.  But maybe on this journey I will find ways to inspire, I hope so.  I’ve had a pity party for myself the last few days. But today I finally said you need to stop this crap and try to do something. So here I am writing.  I am grateful so many people are starting to read my blog and that some of you have shared how my story has helped you.  That makes me cry tears of joy.  My life has been about suffering but I do hope somehow through my suffering I can help others cope with their suffering.  Maybe I’ll be the lab rat that helps find some cure for something so others don’t have to go through the pain I have.  But I hope somehow in my lifetime I will be able to look back and see that I helped others.  Then all this pain and suffering I’ve endured won’t be for nothing.  So to all my fellow warriors who fight each day with chronic illnesses I say to you keep on fighting.  Keep on sharing your story.  Keep on living despite the pain.  Because people like us do make a difference. We are the ones who smile even through the tears of pain.  So go forth and let your light shine bright and keep being the beacon of light that helps others see their way through the dark times.

beacon of light

What I Can Do

As someonecan do who’s suffered from chronic illness for over 13 years now it’s easy to focus on what you can’t do.  I haven’t only had to suffer from the issues with my brain tumor, but also with horrible chronic back pain.  There are times when all the health issues I’ve endured pile up at one time and I can’t get out of that rut of thinking about what I can’t do because of this illness or pain.

But yet there is something deeper in me that drives me. It’s a force that seems to pick me up each time I fall.  Its my inner spirit and will power to do more and to help others.  When I have a mission, a purpose I can do anything.  The other day I was pretty down.  I took a shower to see if it would help me feel better.

Now if you follow my blog you are going to learn one thing about me…I pray in the shower and I have my best thoughts and ideas in there too.  It’s something about being alone with my thoughts and the cleansing away of whatever troubled me before.  It provides clarity.  I was taking my shower and I was trying to figure out what my future holds.  If you’ve ever had brain surgery doing this during your recovery might not be the easiest thing to think about.  Before all I could do was focus on what I couldn’t do anymore because of this damn tumor and well the surgery and my slow hard recovery.  But I sit there and thought…I’m really good at motivating.  People tell me all the time how inspiring I am.  I wonder about them thinking that about me…but apparently I am to some.  I finally came to the conclusion that I could use my battle with the brain tumor as a way to raise awareness about Acoustic Neuromas.  I could use it as a way to tell my story and motivate others.  I could also use my story about my battle with chronic health issues as a way to help others and motivate them, while also raising awareness too.  And then my thoughts turned away from what I can’t do.  All of a sudden I had so many ideas of what I can do.  This was an ah ha moment for me.  It lit a fire in me. See I’ve known my purpose in life has always been to help others. I haven’t always figured out just how.  And right now during a time when I feel so powerless due to my health I thought I couldn’t do anything. That any help I could offer was way down the road once I am better.  Well I was wrong to think that. I see now I can help now. I can use my voice which is quite loud.  I can use it to help others not feel alone in these very hard journeys with chronic illness. I can use it to spread the word and raise awareness.  I could help this way NOW.  So this is why I created this blog.  Because though I have thought about 100 things I can’t do…I finally started thinking about what I CAN DO.

I hope my words inspire and motivate you all to look inside and see what you can do now.

My Acoustic Neuroma

tumorMy acoustic neuroma was only 1cm when we found it and did surgery. But man that thing changed my life in an instant.  It cause a sudden onset of vertigo that was debilitating. I was unable to work, socialize or live a normal life.  I named it Felicia so I could tell it “Bye Felicia” because it was that annoying having it in my head.  September 22, 2015 I had surgery to remove Felicia.  Though my recovery has been a huge challenge I’m still fighting each day to get better and back to life.  Here’s a picture of Felicia and also me just out of surgery in the ICU at USC Keck Medical Center in Los Angeles. I was lucky enough to find the two best surgeons in the country to remove my tumor, Dr. Rick Friedman and Dr. Steven Giannotta.  I still struggle but at least I am alive and have the chance to live again.  For that I am blessed!

Shelly Knowlton Dr Friedman

Me and Dr. Friedman

post op recovery
Me in the ICU

What is a Dizzy Deaf Warrior?

Hello mfight brain tumorsy name is Shelly Knowlton and I am a Warrior.  I am dizzy and also half deaf and fighting daily against the damage my illness has done to get my life back. Hence the name of my blog.  You’re probably wondering why I would choose such a name. Well the answer is Acoustic Neuroma.

If you’ve never heard of an Acoustic Neuroma and chances are you haven’t it’s a very rare brain tumor. It’s a benign brain tumor that grows on the vestibulocochlear nerve in your brain which is responsible for hearing and balance. Because branches of this nerve directly influence your balance and hearing, pressure from an acoustic neuroma can cause hearing loss, ringing in your ear and unsteadiness and other balance issues like vertigo. Also known as vestibular schwannoma, acoustic neuromas usually grow slowly or not at all. However, in a few cases, it may grow rapidly and become large enough to press against the brain and interfere with vital functions.  Treatments for acoustic neuroma include regular monitoring, radiation and surgical removal.  I of course being the aggressive kinda girl that I am chose surgical removal. I could not stand the idea of something growing in my brain that was not supposed to be there.  Unfortunately I lost my hearing in my left ear during the surgery and that hearing has sine been replaced by a constant ringing in my hear called Tinnitus.  My balance after surgery continues to be horrible and every day I fight to improve it.  These are just a couple of the issues I’ve had from this tumor and surgery.

My hope for this blog is to be a voice for those who suffer from Acoustic Neuromas as well as many other chronic illnesses that are battled daily by millions of people around the globe.  This blog is dedicated to the Warriors that fight each day to live. They fight despite the symptoms of their illness that make their life a daily hell.  They fight to live the life they deserve. They fight to help others.  I was once told by someone I was weak because of my health struggles and that just made me fight harder to prove them wrong.  See a person who suffers daily with chronic illness and still finds the will to keep going well they are a kind of strong you can’t find lifting weights in a gym.  They are made up of something deep inside that has a strong desire to survive no matter what…They are Warriors!