Monthly Archives: February 2016

My Least Favorite Sentence

It is a common way of greeting people in America. “Hello, how are you?”

Is it okay to say I HATE that sentence? Because I really, really hate that sentence. I work in a school and cross paths with dozens of coworkers every day. They smile and they ask me how I am. I used to ask them the same question because it’s a normal part of daily conversations. It used to be easy for me to answer:

“I’m Wonderful.”

“I’m Good.”

“I’m Great.”

“I’m Awesome.” 

They all used to be true. But none of these things are true for me anymore.

In 2005, I was diagnosed with celiac disease. It was tough, but I was still “good”. In 2008, I was diagnosed with vestibular neuritis and I was still “fine”. In 2009, I was diagnosed with cervical dystonia. But then, I was not “good” or “fine”. The truth was I was in pain, I was dizzy, I had migraines, I was sick, I was frustrated, I was confused and I was completely and utterly depressed. In the span of 5 years, my life was turned upside down. Any one of these diagnoses could be devastating. Try three.

If you were me, what would you have done? What would you say? I am a relatively private person and I never wanted to be the center of attention. But mostly, I never wanted pity. So, I lived in silence for many years. While I told my friends and family about my diagnoses, I didn’t tell even my closest friends how I was actually doing. I hid it from them for nearly eight years. I thought living this lie was preferable to being “that person”. You know, the person who always complains about something? The person whose bleak attitude drives everyone away? That’s honestly how I viewed myself.

Now here I am sharing my story with the world, so what changed? Honestly, I got tired of being the victim. Now let me be clear, I was the one who saw myself as the victim. I was the one who saw myself as “that person” and I assumed that that was how everyone else would view me. When I finally shared the extent of my symptoms, my friends were shocked. I know some of them felt betrayed, especially because I went so many years without telling them the whole truth. And that’s all on me. If I could go back in time I would not have allowed myself to be the victim. I wouldn’t have played the “why me?” game or thrown myself a mega pity party. At least not for eight years.

The person I was then, is not the person I am now. Sure, I still struggle to find a balance between doing what I want and living inside a body that disagrees with my wants on a daily basis. But I no longer see myself as a victim. I am a fighter and I am so much stronger than I ever thought I could be. Eleven years after my first diagnosis you can ask me how I’m doing and I will tell you the truth, “I’m doing ok.” The truth is God has been good to me: I’m alive and healthy, have countless blessings in my life, a great support system, and I am still able to work full time. But I am always in pain. Every single day. That’s probably not going to change. While I can’t control my body, I can choose to fight and stay strong.

Through this journey, I have come to find out there are so many other people like me. People who live their life with varying degrees of pain every single day. I never realized that. I never realized how many others there were like me. My heart goes out to every one of them. And some of them, well, they will tell you they are doing “Great!” like I used to, even though they are not.

 

A big thank you to Patient Worthy who also published this piece.

My Least Favorite Sentence EVER

 

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My Top 20 Things I Want People to Know about my Crazy, Wonderful Dystonia Life

heartFebruary 29th, 2016 is Rare Disease Day.  I have cervical dystonia, which is considered a rare disease.

I was diagnosed with early onset cervical dystonia after my second daughter was born. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse as the years go on. There is no cure for dystonia.

So, for Rare Disease Day here are my top 20 things I would like people to know about my crazy, wonderful dystonia life.

First, why CD sucks:

1. For me, dystonia results in constant pain, chronic dizziness, and occasional migraines.

2. The nearest cervical dystonia physical therapist is a 45-minute drive each way. She puts me through the worst pain imaginable. When I get done I feel like I have been hit by a truck.  Actually, hit and then backed over. But the pain makes me feel infinitely better.

3. Valium. Oh, valium. I have a love/hate relationship with valium. Unfortunately, it has to be my very best friend. I wish I could get a new best friend.

4. My neurologist says I have 12 good years left. (Seriously?!?) I told him he is dead wrong, and he is. Period.

5. I hate cold. Cold for me = pain and dizziness.  I am counting down the years until I can move someplace warm.

6. I say the wrong words ALL the time. Probably over 50 times in any given day. My 4th-grade students find it hilarious. The people closest to me are used to it and correct me. It is one of the most infuriating parts of this disease. Strangers probably think I am drunk. My neurologist is sending me to a speech therapist in March.  I am skeptical.

7. My head tilts but not a lot. Stress makes it worse.  It drives my husband crazy and he is constantly moving it back to “normal”.  He doesn’t understand that  “normal”  feels so unnatural for me, my head might as well be touching my shoulder.   

8. My body is covered in bruises from head to toe. I spend a lot of time running into things.

9. I desperately wish my dystonia didn’t affect my children or my husband. I feel like a burden.    

10. The only course of treatment left for me at this point is Botox injections in my neck. I am stubborn enough to never allow that in my body.

11. At my neurologist appointment this month, my neurologist informed me that one day my bladder will give out. I tried to tell him it wouldn’t, but he said it’s not a matter of if, it’s a matter of when. He says by the time I am 60. The cause: a combination of the physiology of my urethra, having CD, and being on high doses of valium for years. He told me to “give him a call” when I have a prolapsed bladder. What. Ever.

12. I am paranoid that anything new happening to my body means my dystonia is worsening.  When my right eye started twitching, Google told me I had blepharospasm dystonia.  Or I was dying of cancer.  Either way, Google is not my friend.  

13. For whatever reason noise angers my dystonia. It makes my shoulders tighten.  I couldn’t go to the movies for over 2 years.  Then I discovered these things called earplugs. Genius. I never leave home without them.

14. I had a pity party for myself when my symptoms were at their worst and my neurologist couldn’t figure out what was wrong with me.  It kind of lasted for years.

BUT…

There are also good things that have happened since onset.

15. Through years of closely tracking my episodes and learning my triggers, I have completely changed how I do all of my day-to-day activities. This has allowed for my episodes to decrease drastically. I am currently the best I have been since my original onset of symptoms.

16. I have been in partial remission since summer 2015. I don’t know that it will last forever but I will ride it for as long as I can!

17. I wouldn’t be here without my husband. He is my cheerleader and my punching bag. He never minimizes the pain I am in.

18. I really don’t want pity.  People think they shouldn’t complain around me because of “everything I go through.”  I don’t want people to think that way. Throughout this journey, I have realized that there are many people I know and love who live with some sort of pain or suffering each and every day. Most of them are not nearly as verbal about it as I have become. My heart goes out to each one of them. Even if it’s a sinus infection, don’t play it down.  Sinus infections suck.

19.  Every day I thank God for my life. It wasn’t the journey I had planned, but I am so very richly blessed in ways too numerous to count.

20. For whatever reason I am being called to write about my experiences.  I’m not sure why and I most certainly don’t feel comfortable doing so.  I’m a pretty private person. I flat out told my husband last night that I did not want to write this. But, my mind refuses to rest until I write.  I am sure that God has a reason for this. I just don’t know what it is yet.  

 

And a big thank you to Patient Worthy who published an edited version of this.

15 Things I Want You to Know About My Crazy, Wonderful Dystonia Life

 

Perfectly Imperfect

I  love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow, what a rollercoaster of a ride our last 13 years together has been!

My husband has always had unlimited energy.   Our friends joke that his internal switch is always set to “on”.  But, after the birth of our first daughter, he spiraled out of control. He only slept a few hours at night, and never stopped running during the day.  My “honey do” list was untouched. Severe situations went unnoticed, yet he obsessed over little things,  like triple sterilizing baby bottles. Meanwhile, I was dealing with major health issues of my own.

There came a point when I told my husband I couldn’t live like this anymore. He scheduled an appointment with a psychiatrist. I expected a diagnosis of ADD. What I didn’t expect was a Bipolar diagnosis. My husband was diagnosed with Bipolar Disorder Not Otherwise Specified. For him, this means he is pretty much hypomanic all the time. He was put on mood stabilizers and started therapy.

A year later my neurologist dropped a bomb with a cervical dystonia diagnosis. Being the stubborn person I am, I knew one thing for sure: dystonia would NOT change my life. I had two small children. I was working full time as a teacher. My husband and I were rebuilding our marriage. Nothing would change.

Except that it did. Everything changed.

My symptoms overtook my life. My days were filled with pain and fatigue.  I dealt with bouts of dizziness that lasted for months on end.  My brain struggled to form words, and each month brought a new medication. Then another. Then another.  Weekly physical therapist appointments were scheduled while a  deep depression overtook me. We looked at the possibility of ending my teaching career.

But I am oh so stubborn.

I was not willing to quit my job, but I couldn’t continue my life like this.  Which meant one thing, I had to figure out how to live my life with dystonia. So, my husband and I became proactive. We began to track my episodes. Patterns emerged that made the dystonia worse: weather, stress, hormones, and most of all body movements. We tracked daily for over a year, and my husband was by my side every day. Then, we made changes. We changed everything about our day-to-day life. And, thank God for my husband!  My bipolar, hypomanic, always “on” husband,  took all his energy and put it to work for the both of us!

* He learned how to massage me. I have my own massage therapist daily!

*He gets the children up and ready for school every day.

*He does homework.

*He cooks meals.

*He continuously runs up and down the stairs to get the laundry list of items my dystonia brain has forgotten.

*He jumps to clean up my spills.

*He spends countless hours picking up everything that falls out of my hands.

*He always makes sure I have a heated tube around my neck.

*He holds my hand when I cry and convinces me WE can do this.

What’s the best thing he does for me? He stops me when I can’t stop myself. He takes knives out of my hands when I am chopping up vegetables because he knows looking down brings on pain. He pushes me out of the kitchen and pulls me over to the couch. And he takes over the chopping.

I still do way too much. That’s not going to change. But having a husband with limitless energy, who is always willing to step in and do what I can’t, that’s my saving grace. And I can never thank him enough.

 

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

pills

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