Category Archives: cervical dystonia

We’re Moving!

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It is with an excited, yet  heavy heart that Neil and I share with you that we are moving!

A few months ago we began looking for a new home. Specifically, a ranch with less square footage.  The reality of living with CD is steps are becoming increasingly difficult for me. Especially carrying things up and down them.   Maintaining and cleaning our current home is becoming more of a challenge too.

We quickly discovered that ranches right now are few and far between.  And if you are lucky enough to find one, it sells before you get to look at it!  We had a small window of time to buy— spring into this summer when I am not working. If we missed this window, we would need to wait until spring 2018 to start again.  But God is good, and the power of prayer is awesome, so we were lucky enough to get the second house we bid on!!!

When Neil and I purchased our current home 12 years ago, we expected it to be our “forever home.” It’s where we brought both girls home from the hospital and we expected to see them through college in this house.  I love our house.  We LOVE all our neighbors. But our home is no longer what is best for our family.

Our new home is a short walk to two parks and an even shorter walk to local businesses to get ice cream and coffee. I am beyond thrilled to be on a ½ acre where there is enough room for the large garden I have been forcing into a small yard.  (That’s the only reason Neil convinced my stubborn self to move.)  And by the grace of God, we ended up a few miles down the road, where both girls get to remain in their current schools.  Which is unexpected and AMAZING.

And me.  You all know me.  I’ve  spent most days over the past month riddled with guilt over this transition, shedding sad and happy tears. That shouldn’t come as a surprise.  But I am excited for our next chapter to begin.

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Denial

If you choose to read this, please understand it is hot a happy piece.  I am not going be light-hearted or make jokes.   I never blog to gain pity, although it will be given.   As an advocate for my disease, I share this so you understand the harsh reality of living with CD. In one of my recent pieces,  So Today Sucked, I blogged about my February  2017 appointment with my neurologist.  Here’s what I couldn’t say at the time. 

So, I have been living in denial.  And it has been blissful.  I was in such denial,  I was actually looking forward to visiting my neurologist. I eagerly anticipated telling him what a great year 2016 had been.  It really was.  This is by far the BEST my body has been since my diagnosis of cervical dystonia in my early thirties.  However, I am living on borrowed time.

The first question I was asked is a common one for anyone who suffers from chronic pain. “Have you had suicidal thoughts or thoughts of self-harm within the past year?”  Uh-oh.  I  forgot I was going to be asked that question. How could I forget that? I’ve  struggled with chronic depression since I was a teen.  My neurologist took me off my anti-depressant years ago and won’t let me take another. So, yeah.  I wasn’t going to lie.

In August,  I was in 100% remission and enjoying my stress-free, hot summer in the sun. No grading papers or planning lessons;  yet I had a complete and scary breakdown. It was bad.  Let’s just leave it there.  And so two minutes into my annual appointment, I  wanted to go back home. I wasn’t so eager anymore.

The second question, “Are you ready for Botox yet?”  I anticipated this one.

Nope.

Negative.

No way.  I came with my impenetrable brick wall built and quality tested for durability. 

“You realize you are living on borrowed time?”

Nope.

Negative

No…  My neurologist kicked a hole through my brick wall.  Damn.  DAMN. When I peeked through the hole, I saw the enormous piles of denial behind it. My current treatment plan:  several medications, physical therapy, and 4-5 daily massages made my symptoms manageable.  However, Valium, the drug that keeps me on my feet and allows me to continue working full time is destroying my body.  I knew that. I chose to ignore it. Valium will weaken my muscles over time, and unless I abandon it, the damage will be irreversible. And the damage will likely be severe.  Valium also messes with my speech and memory BIG TIME.  I mix words up and cannot grasp nouns.  What you don’t know, is how hard I work to form sentences every day.   But, I figured a tiny price to pay for feeling so good.  At least, that’s what I told myself.  Did I also mention I am a walking zombie?  It’s a sedative too.  The large amounts I take daily, cause me to live with never ending lethargy.

B-U-T, Valium allows me to work full time.  I maintain a steady stream of the medication in my body at all times.  When I move on to other treatments that won’t be the case.

Then on the back burner this visit,  I was also diagnosed with essential tremors. Which I also was aware of, but chose to ignore that one too.  Funny thing?  There is a good chance the Valium is currently suppressing my tremors. Go figure.  So, no Valium in my system could lead to big tremors.  And Botox won’t fix tremors.

After much crying and pity partying, I can’t deny my life is about to change big time.   It is all a question of when.  I am thinking this summer.  There are many negative questions floating in my head.  “What if this is the best thing that could happen to me?”  is not one of them. I am not trying to be pessimistic.  I understand the benefits and I know the shortcomings.   I also understand how adding in vestibular neuritis makes my condition unique. All my questions tend to head down a path ending with,  “Am I going to be a 40-year-old who ends up on disability for the rest of my life?”

I guess we will see what June brings.

Rare Disease Day 2017


Happy Tuesday!
More importantly for me and the rare ones like me, today we celebrate Rare Disease day for 2017.  I have spasmodic torticollis commonly referred to as cervical dystonia.  It is a rare, neurological movement disorder that causes involuntary muscle contractions and spasms to the neck, shoulders, and head. CD affects roughly 9 to 30 out of every 100,00 people in the US. Currently, there is no cure.  But dystonia is only one out of over 6,000 rare diseases.

What is rare disease day?

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. (taken from rarediseaseday.org)

For more information visit Rare Disease Day website

So today sucked

I work hard to remain positive and fight but today just plain sucked.  Today was my annual 2-hour visit with my otoneurologist.  In layman’s terms, that’s the doctor you see when an ordinary neurologist can’t figure you out.  And I’m a redhead so no one can figure me out. (If you don’t understand that, Google it.  You’ll be surprised by what you find.)

Anyway, the visit served as a slap in the head reminder that my body continues to deteriorate.  Bummer. And the long-term affects of my current medications to manage my symptoms are causing permanent damage to my body.  Yeah. Bummer. So, as my doctor put it, “We can continue to kick the can down the road for awhile longer…”  But eventually, I either deal with a collapsed bladder due to my steady stream of high doses of Valium long term, or I move to more invasive treatments for my cervical dystonia.  Neither option makes me feel warm and fuzzy.

Oh, and I’m tired of hearing that my dystonia is “bad.”  Yeah, duh.  I live with it every day.  Or that they can’t figure out what is wrong inside of my brain.  Or, (my absolute favorite) “When you’re dead please donate your brain to science, we could learn so much!” *Sigh*  My otoneurologist has a lousy bedside manner, but he is my miracle man.

I’m back to physical therapy, a psych consult,  paperwork explaining new drugs to consider, and a follow-up visit in 4 months!  I was counting on another visit in 12 months but they’re worried about my mental state.  Once again, yeah duh. Trying living with early onset of a degenerative, rare, chronic disease. I bet you would feel down at times too.

My husband came with me.  I don’t usually let him come.  But, I felt like he needed to be there today despite how well I have been doing this winter.  I was right.  I really needed him there today. Afterward, we went to a late lunch, and while waiting for our food, he began mapping out the rest of my life.  He’s a proactive solver; I’m an avoider. We are trying to figure out at what point I lose the Valium and move on to injections in my shoulders, neck, and head every 2-3 months.   He has my lifeline ending at 80 years (I didn’t ask about that magic number?) AND he so graciously reminded me that I will be 40 in less than a month.  That made me laugh.  It made me laugh hard. I guess he thinks I have about 40 years left?!?!  At least I made it through the day without crying.

I am finding contentment to be tough today.

#myoneword     #dystonia

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.