Category Archives: Some longwinded rambling…

We’re Moving!


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.



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.



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

“You realize you are living on borrowed time?”



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.

The Conquest for Contentment — My One Word 2017


Here we are approaching the end of February.  (I’m not sure how that happened.) Realizing this today, I took a moment to reflect on my One Word journey so far.

First off, I celebrate that I am finding contentment in my life daily. It is often little and easy to miss.  But it’s there.  The believe the love I have lost will find me.  Knowing this makes the journey a success so far.

That being said…

In my neat and tidy mind, where everything fits in symmetrical boxes, I mapped out areas of my life.  Areas where I wanted to find contentment.

I checked off “content with my health” because I felt this was achieved.  Then, after visiting my neurologist the second week of February I find myself back at square one.  Everything I was content with: my dystonia, my medication regimen, my daily life, blown out of the water and catapulted deep into the sand.  Several weeks later, I find myself still trying to dig my way back up to the surface of the sandy beach.  I will soon venture into a new and unknown world of dystonia.  I find this thought very, well,— uncontentful.  (My feelings clearly justify the creation of a new word!)  

Now, back to my boxes.  I had originally decided I would focus one area of my life, my family, where I concluded I was the closest to achieving contentment.  Become content with my family, check off the box, easy.  


Do you ever wonder if God gets so frustrated with mankind, he pulls out his hair?  I think I am making God bald.  God asked me if I actually thought finding contentment was going to be as simple as checking off boxes. Could my journey be successful without God?


Godliness with contentment causes great gain. ~ 1 Timothy 6:6

It’s the end of February and I’ve already tossed aside godliness.


It seems my year long journey quickly morphed into a conquest.  I’m not surprised.  If you know me, you’re probably not surprised either.  

Contentment.    Baby steps.


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

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!!!!)


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.


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.