Category Archives: vestibular neuritis

Happy New Year!

Happy New Year! (Well, at least it was when I wrote this.  But like everything else in my life, it seems January has been a  tornado swirling past me as I continue to run and run.)

As 2016 comes to a close, I reflect. Oh, how my life has changed since my 2009 diagnosis of both vestibular neuritis and cervical dystonia!  To be honest, every single aspect of my life has changed.  Some things for better and some for worse.

2016 brought huge changes for me. The biggest being what I am doing right now, writing.  It’s still hard for me to wrap my mind around this writing thing.  Not only do I have a blog, but I have work featured in several publications.  I am a published writer. Starting a blog wasn’t even a whisper in the farthest corners of my mind as 2016 began.  

This year I  “officially” took ownership for my rare disease, cervical dystonia. I shared with my friends and family the true extent of my symptoms, and the struggles I have endured for years.    Many of you watched my progression in 2016 from a silent sufferer to (a still somewhat reluctant) advocate. Through writing, I was no longer silent.  And the choice I made to speak up, hurt people close to me. I lost friendships. When the severity of my condition was revealed, friends were hurt and thought I didn’t think they could handle it.  In reality, I am a quiet person who doesn’t like to draw attention to myself, and never wanted to be a burden.  Needless to say, I shocked many with my raw, honest writing.

I bought myself two Christmas presents this year. These necklaces are huge for me. They pull my ownership of living with a chronic diseases front and center for everyone who crosses my path to see.  Friends, neighbors, strangers. If I hadn’t started writing, I wouldn’t have found the courage to go for these necklaces.   And I love them!!!

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I don’t know what God has in store for me in 2017. But I am excited to continue my journey with all you. God bless!

A Picture is Worth 10,000 Words

For most people, the new year begins January 1st.  For me, my new year begins in early September. Why? Because I am a teacher. But not just any teacher.  A full-time elementary school, who also has two children, runs a busy family, and suffers with chronic pain due to cervical dystonia, teacher.

teampic2013

This is one of my favorite pictures! It is from 2013. (I’m the short redhead with the funky head tilt.) I love this picture for many reasons.  These are some of my favorite people, my teammates.  Fellow teachers who brave the trenches every day doing what we love.  Teachers who have been by my side for years. A new school year is ready to begin and we are all smiles! In this picture, I am happy and excited about the upcoming school year.  My smile is not faked. But what you don’t see:

I am in excruciating pain.

I am incredibly dizzy.  

I am scared to death.   

This picture was taken during a hard time in my life. I wouldn’t wish that pain on my worst enemy.  Nor would I the dizziness.  I loath dizziness.  And why am I so scared? Well, I have no idea what this new school year would bring for my dystonia. How bad would the pain be?  How long would the dizziness last?  Would this year be the year I break?

This picture also finds me at the end of the summer. The best time of year for my cervical dystonia. Summers are SO good for me. I can move at my own pace, the warm weather does wonders for my body, and my stress level is way down.

Now, here’s my picture from the beginning of this school year, 2016.

teampic2016

I’m still with  wonderful, amazing, supportive  people that I love!  I’m still the short redhead. But my head is not doing that funky tilt thing. I’m still in a lot of pain, but it’s not excruciating, and my dizziness is occasional now. I am still scared but I am no longer scared to death.  The fear will never leave me.  The unpredictable factors of cervical dystonia will always be with me.  Unless someone finds a cure.  

Now back to the first picture. Why is that picture one of my favorites with such a mix of emotions tied to it?  Well, it reminds me that even on my worst days; I am a fighter. I made it. I survived. And I will always fight, and I will continue to survive. Realistically, the way I am at this moment will change. Living with cervical dystonia has taught me to celebrate  daily victories.

As you enter your new year at the end of the month, I wish you health, happiness, and strength. Throughout my journey, I have come to realize that  everyone is fighting a battle of some sort. If you are, find your picture of your worst moment, celebrate that you survived, and keep it in your back pocket as you enter 2017.    

A big thanks to Patient Worthy for publishing this piece.

Amber’s Approach to the New Year with Cervical Dystonia

Finding the Silver Lining

Well, it’s official, I’m not in remission anymore. I wish I had something better to share tonight, but that’s it.

It will be a full week tomorrow since my dystonia came back in full force. Plowing through me with an electrical current that knocked me clear across the room. The pain, the dizziness, the drugged comma. I admit, I had gotten used to living a somewhat “normal” life and then BAM, brick wall to the face on a Monday morning. Usually, I call tell when a storm is coming. Most of the time I can even tell you the cause, but this one caught me off guard.

And it’s bad. It’s really bad. The worst storm I have had in at least 4 years. It stirs up old fears I felt confident tucking away in the farthest corners of my mind. Fears that begin upon waking:

Thought #1: What day is it?
Thought #2: How dizzy will I be today?

I loathe that feeling. No one should begin their day with dread and fear.
That’s my life.
Until there’s a cure.

But my husband. Oh, he is a wonderful man. And some days, like today, I can’t believe he is mine. He didn’t sign up for this but he remains committed. Every single day. Good days and bad ones. Helping me through the pain, the depression, the agony, the anger, the guilt. I will always love him more than I can adequately put into words.

SO, where to go from here?

  • I survive until the storm passes.
  • I pray.
  • I remain thankful.
  • I fight my body and I fight hard.
  • I stay heavily drugged.
  • I embrace the physical bruises when I fall down.
  • I accept that I cannot speak correctly.
  • I find the beautiful moments in my day.
  • I celebrate every second I feel good.
  • I love my girls.
  • I listen to the Beatles and I sing.
  • I read.
  • I cry.
  • I write.
  • I find ways to laugh.

And I wait.

Because this too shall pass.

The Ramblings of an Advocating Grumbler

(FYI–As I wrote and revised this, I was yelling in my mind the entire time. You may want to yell it out in your mind as you read it too.)

I am officially in a blogging funk. This is the reason I refused to start a blog in the first place. I am walking a fine line between advocate and grumbler. And I don’t want to be the grumbler. I have 7 partially finished pieces that are going nowhere because I feel like a whiner!!

Yes, I have celiac disease. Yes, I have vestibular neuritis. Yes, I have “the dreaded” cervical dystonia. Yes, I have battled chronic depression since I was a teenager. And let me tell you, none of the above conditions makes managing depression any easier. (Especially since my neurologist and I have an ongoing battle about why he says I can’t take any anti-depressants!!!!)

Crap.

I’m doing it again.

Look, here’s what I want people to know. During my worst times, I was positive I could not live my life for another day. And yet I did. Each and every flippin’ day I dragged myself out of bed. Do you want to know why? Because I am the most stubborn person I know! Very, very stubborn. So, stinkingly, unbelievably stubborn. Also a little combative. While those traits got me into mountains of trouble growing up, today they are the force that drives me forward.

Thinking back to when I was at my worst,  I remember the physical and mental war that raged within me every morning. I remember the doubt that taunted me. I remember thinking, “Can I do this again today?” The answer was always a “YES.” I always got out of bed.  No matter what, there wasn’t one day I stayed in bed.

Ever.

There was no way I would let any disease, disorder, or whatever define me! Especially not cervical dystonia. I became extremely proactive. My husband and I closely monitored the movements I made, every single day, day after day, month after month after month. And we discovered something amazing. We discovered that movements played a huge factor in triggering my dystonia episodes. We changed my life, my husband’s life, and our children’s lives to avoid these triggers as much as possible. And despite my neurologist shaking his head and saying it couldn’t be done, we did it.

Yep, we did it.

I am living proof that how your body is at this very second is NOT necessarily a life sentence. Do I still have rough days, absolutely! Do I have incredibly good days, yes! I AM IN SUCH AN AMAZING PLACE. Do I expect to always be in this place? Not a chance! (Ha, got ya there!) Look, I still have cervical dystonia and it’s not going anywhere. There’s no cure. And it’s starting to affect other areas beyond just my neck and shoulders. But I’m prepared. I’m still stubborn, and I know that I can take anything that is thrown at me.

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Tomorrow is one of my favorite days, Easter! We celebrate the Resurrection of Jesus and His glorious promise of eternal life.  As I celebrate this day with family, I am grateful for the warm weather.  It will make my body happy and way more agreeable.  

I want to share something that I have not told many.  Reason being, if you don’t live with, or love someone, in chronic pain this will be hard to understand.  As an adult, my darkest point was when I spent 7 months in an episode of dizziness that I never thought would end.  My neurologist wasn’t sure of the cause. I was dizzy all day, every day.  Every single day. I recall the day about 5 months in when I  understood why a person living in chronic pain would choose to take his life.  Now, please don’t misunderstand me. I don’t condone suicide. I do not believe that is a choice.   My life is a cherished gift from God. All life is a gift from God.  But during that 7 month period, and at occasional times since then, God’s eternal promise is the only thing that gets me through.  Knowing that one day through eternal life,  I will no longer be bound to this Earthly body.  One day there will be no pain. That’s just enough to get me through. I do hope that day is far from now, though.

As I fumble through this journey with chronic pain and dizziness, I have asked: “Why me?” on more than one occasion.  But I never remember a time when I asked: “Why me, God?”  I  don’t blame God for my chronic pain.  Quite the opposite actually.  I thank God every single day.  I thank God for my health.  I thank Him for the health of my family.  And when my days are not so good, I thank God for getting me through the day. Truth be told, my life is wonderful.  

I have found much hope and relief from reading the Bible.  I have verses placed throughout my home, in my purse, on my desk at work, and reading these are therapeutic for me.  I have a verse for every character trait that I struggle with. I have a verse for strength, a verse for healing, a verse for letting go,  a verse for anxiety.  When my husband quit his job to pursue a different career, he put a verse near our computer. Several years later, it is still there and I read it nearly every day.

When I am in need of a verse, one is instantly there for me.  The perfect one. Every single time. I will end with one today from the Book of Colossians:

And let the peace of Christ rule in your hearts, to which indeed you were called in one body.  And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of Lord Jesus, giving thanks to God the Father through him.  ~Colossians 3:15-17

Wishing all of you a safe and joyous Easter!

easter

 

© Amber Richilea and slapinthehead, 2016. Unauthorized use and/or duplication of this material without express and written permission from this site’s author is strictly prohibited.

 

 

What I Wish I Would Have Said to the Urgent Care Doctor

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I only asked you to test my urine. That’s it.

Was it positive for a UTI or negative? I didn’t ask you to diagnose me or offer me advice. As I explained upfront, I have issues with my bladder that makes it hard for me to tell whether I have a UTI or not. If I have an infection, it’s important for me to get antibiotics before it becomes a kidney infection. If it were a weekday, I would have headed to my urologist. But it was a Saturday.

So when you walked back into the exam room flipping through the questionnaire I had filled out in the waiting room, I only expected you to tell me my urine dip was positive or negative. Instead you said, “Do you think your husband is cheating on you?” I was so dumbfounded my jaw just dropped. My mind raced–what in the world made you think that? Then it made sense. I take Valtrex. The herpes drug.

I take several prescription medications and Valtrex is one of them. Yep, I have herpes. Except it’s not what you think. I have Vestibular Neuritis. It’s not that common. Maybe you haven’t heard of it? I listed it under medical conditions, right next to my current medication list. If you are not familiar with it, please allow me to explain. Vestibular Neuritis means I have the herpes virus in my inner ear. Most people will get it at some point in their life. You may have had it at some point when you were sick and felt dizzy. 95% of the population has it once in their lifetime with no recurrence. But lucky me, I’m part of that other 5%. There a few factual things I would like you to know about me:

*As a result of having Vestibular Neuritis I have dizzy spells that can last from seconds to hours to days to months. Imagine months and months of being dizzy all day, every day. My longest episode lasted 7 months. I wasn’t sure if I could continue with life at that point.
*I have hearing loss in my right ear from this viral infection. I can only pray that the hearing loss won’t become worse.
*I will take an antiviral, Valtrex currently, for the rest of my life.
*Genital herpes is NOT a cause of Vestibular Neuritis.

My husband and I have been together for over 10 years. He is the most wonderful, supportive, and faithful man. My husband has no sexually transmitted diseases nor do I. And, my husband has never cheated on me. I was so embarrassed, so humiliated by your question, I didn’t know what to say. I wish I would have just gotten up and left. Instead, I stood there, shaking, and had to specifically ask if my test result was positive or negative, although I already knew the answer. If it had come back positive, your question would never have been asked in the first place. You would have given me a prescription for antibiotics and I would have been on my way. But I guess in your mind a negative urine test + unexplained bladder issues + on Valtrex = an untreated sexually transmitted disease? That seems like a big leap.

I know you had a waiting room full of other patients but please, please, next time take a minute to talk to your patients. A patient should never feel ashamed when going to a doctor, regardless of his or her medical history. And please never assume to know what is wrong with them based on, a not so thorough questionnaire, they fill out in the waiting room. People say never judge a book by its cover. Perhaps you should never judge a patient by her paperwork. This entire situation could have been avoided if you had asked me one simple question, “Why do you take Valtrex?”

 

All of the factual information from this letter came from conversations between myself and my neurologist.  (Who was absolutely livid when I shared my story with him!) It can also all be found at:

http://my.clevelandclinic.org/services/head-neck/diseases-conditions/vestibular-neuritis