Monthly Archives: February 2017

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.

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The Conquest for Contentment — My One Word 2017

2/23

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.  

Nope.

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?

Nope.

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

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

Crap.

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.

#myoneword

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

Finding Contentment, My One Word 2017

1/22/2017

When I started this journey, I was positive that my One Word would be happy. I hadn’t prayed about it yet; I knew that being unhappy was destroying my life. I dug in deeper through dictionaries and thesauruses. Then, I went to scripture.  I found several verses in the Bible that spoke to me.  Most profound to me was Paul speaking in Philippians 4: 11.  “I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through Him who gives me strength.”

More than once I have found strength within the pages of Philippians.  And those verses, God placed in front of me.  God has always given me what I need to be happy.  Always.  When I originally thought about #myoneword I knew unhappiness had overtaken my life.  But perhaps happy wasn’t the precise word for me. Perhaps, what I needed was to find a way to be content with the blessed life God has given me.

I do not have the relationship with God that I need to have.  I have known that for a long time too.  We attend church weekly and we pray throughout the day. My husband and I are working to raise our children to be God-centered Christians.  But God can easily become an afterthought for me.  I want to live a more God-centered life.  I need a more God-centered life. I need to learn to be content in whatever circumstances God has given me, just as Paul himself had done while in prison.  And, at the moment my circumstances are, well– good.  

So how do I find happiness and create a more God-centered life?  1Timothy 6:6 says, “Godliness with contentment is a great gain.”  Godliness is a God-centered life.  It grows, not through a series of actions, but through the presence of God in your life. For a devout Christian, contentment is a grace that grows over time.  It doesn’t come quickly and without work. As quoted above, Paul says: “I have learned to be content.”  How?  “I know what it is to be in need, and I know what it is to have plenty.”  (That, by the way, would be a check and double check for me too.)  “I have learned the secret of being content.” “I can do all this through Him who gives me strength.”

That’s worth repeating. “I can do all this through Him who gives me strength.”

My One Word for 2017: content.

My bible verse:  “Godliness with contentment is a great gain.” ~ 1Timothy 6:6  

I am going to find contentment in what God has given me.  I can do this.  

My Search For Happiness– Finding My One Word for 2017

1/12/2017

I’m not happy. I used to be, but I’m not right now. I don’t know at what point I became unhappy.  But the other day, like a slap in the head, the realization overtook me.  I have been unhappy for quite some time.

I can’t say that I have good reasons for being unhappy. People may think that living with chronic illnesses and a disease would impede my happiness.  They don’t. Those things have contributed to unhappiness in the past, but I am an old pro at dealing with those. I did the whole therapy thing, and I found my happiness within.

God has always given me everything I needed. I married my best friend. We love, we fight, we struggle, we thrive.  We lose each other in the fog at times, but we always find our way back.  We choose to love and commit ourselves to each other.  I am also blessed with two daughters.  They don’t like each other much right now, but we are doing our best to raise them to have a God-centered life.  I would be lying if I said their lack of empathy towards each other didn’t contribute to my unhappiness. But there is no way their turmoil lies at the center of my unhappiness.

I have a great job. I teach!  I’m in year 17 of doing the only thing I ever wanted to do.  I will say that this job has taken a mental toll on me.  The world of today is not the world I grew up in. There is a lot of pain and sadness that comes with teaching nowadays.  Is it enough to make me unhappy?  I don’t think so.

Last week, my principal turned me onto this idea of #myoneword. This is something that has crossed my path before but I always turned my head away.   But this year God placed it at my feet.  What a blessing.

My journey begins today. God is telling me (ugh, no surprise) to blog.  I have no idea who for?  Maybe just me.

I have an entire year to figure out how I have become the person I am. And I have one year to find the person I used to be.  I have one year to rediscover my HAPPY.

And everything about that terrifies me.

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