Monthly Archives: September 2016

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.

Advertisements

A Dystonia Q and A

September is dystonia awareness month!  Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors, and uncontrollable movements.  Dystonia can set up camp in any part of your body.  My type, cervical dystonia, loves my neck and shoulders where it holds frequent parties.  And as much as I try, my dystonia is a shadow that follows me around everywhere.  It is a part of me, and fast as I try to hobble away, it’s something I can never escape because there is no cure for dystonia.

As a daily conqueror and advocate for dystonia,  I’m been busy blogging and writing.  I stumbled across a survey from last year asking people living with dystonia to reflect upon their disorder to help patients and family members who were recently diagnosed. I would like to share three of the questions.

What do you wish you were told about dystonia upon the diagnosis?

I am a control freak who enjoys a mundane life full of consistent routines. That’s the worst possible fit for someone with dystonia! What I wanted was my neurologist to hand me a binder which included: a complete personalized list of my every symptom, the exact moment of onset, the period of duration, and the severity of each symptom.  That’s not too much to ask, right?

Seriously, I wasn’t prepared for the pain and dizziness. I wasn’t prepared for the constant fatigue.  I wasn’t prepared for the permanent lifestyle change my entire family would undergo. Most of all, I wasn’t prepared for the battle my brain and my body would fight every day. Looking back, it wasn’t a binder I needed. What I needed was for someone else living with dystonia to slip me two notes. One that said:“You are stronger than you could ever imagine. You CAN do this.”And the other would have said, “You will have bad days but you will have plenty of good days too. Never let your bad days overshadow your good days.”

What helps you cope?

Three things:  a positive mindset, laughing at myself, and the occasional venting session. My mindset is most important. Sure, I do everything my neurologist tells me to do. I take all four of my meds, get 2-6 painful daily massages (thank you amazingly  well-trained husband), and try not to do too much. But no matter what, I live in pain.  And my body may continue to decline. So I’ve learned to take life one minute at a time. Not one week, not one day, not even one hour. Minute by minute. Right at this moment, the pain I am in, the dizziness I am experiencing, it may be my present, but it will pass. My pain right now does not dictate my day.

Laughter is  the best medicine. I know it’s cliché, but sometimes for my sanity, all I can do is laugh. I knock things over, drop things,  spill my drinks, walk into walls, and I say the wrong words all the time. And sometimes, it’s just plain funny. Laughing helps gets me through the day.

Finally, I cry.  And yell.  And sometimes I throw things too. (But only on my worst days.) On days when I am sure I can’t take it anymore, I allow myself to get mad and I allow myself to mourn my old life. Then I pray. God is always with me. I find my husband who holds me why I cry and reminds me we can do this. God put us together for a reason. And then I move forward.

What should someone understand about you?

I don’t want pity. I’m not looking for sympathy.  My life is what it is and I don’t regret it, or take it for granted.  My life is beautiful and I am the person I am today because of my dystonia.

 

A big thanks to Patient Worthy who also published this!

A Dystonia Q & A