Tuesday, December 17, 2013

Jenny-Adventures with becoming mute...

I have a history of really rare heart condition called Inappropriate Sinus Tachycardia and this week I was diagnosed with a neurological condition called Spasmodic Dysphonia.  So I guess that makes me both a spaz and inappropriately tachy.  Ha Ha. I was pretty resistant to going to the hospital but by the time I made it to the Cardiologist I knew I had to be admitted. I was so tired I tried to sleep on Dr. Farmer's table which seems totally logical at the time.  I am super stubborn and I was convinced I could walk downstairs but I couldn't. I didn't have the energy and my heart was too fast.

I had a slight cold that I got from my kids.  I kept thinking that it was nothing but inside I knew it was so much more than just a cold.    I couldn't breathe, my airway was closing, and I lost the ability to speak, then my heart went nuts.  I had 10 surgeries so I would not be tachycardic and here I was back to being tachycardic and I was mute.  Great.  Jeremy had to pickup Ava from school so he had to drop me off mute at the hospital to check myself into the hospital.  It was not a good day! Mute, waiting to check in and my paperwork wasn't in the system yet.  But I couldn't discuss it with anyone because I was mute.  Jeremy felt awful about having to leave me there but I needed him to go get Ava.  I had to wait 2 hours for the direct admit paperwork but I eventually got a room.  It also happened to be the same exact room I was in 5 weeks before which was weird!

So this is vicious cycle and it seemed so cruel to steal my voice from me again.   I spent a week in the hospital.  The docs were content with letting me hang out for another week.  It was a very frustrating time because I couldn't speak when my airway was clamping down and you have to stay calm, while silently trying to communicate and it feels like you will stop breathing.  It feels like someone is choking me with their hands around my throat.  At the same time I have no ability to communicate.  It's the way I imagine people with strokes feel because they know what they want to say in their head but cannot communicate.  I've had a vocal cord problem for 5 years off and on.  I haven't spoken (irony) about it much.  I'm not sure why exactly.  I always hope it's gone for good then it comes back at the most inopportune moments.. But today I decided to share this part of my story too.

Many people don't know that I was completely mute when I started on Facebook 5 years ago.  I had just gotten off a breathing machine and had no way to communicate other than writing.  So I got on Facebook and starting communicating.  It was incredibly liberating to be able to "speak" to people and still feel like a useful person. But it was a long process to regain the ability to speak. I actually had to go through speech rehab to relearn how to talk because the muscles in my throat do the opposite thing they are supposed to do when I speak.  It's a complication from asthma and severe reflux.  I can only control it through controlling triggers. Of course, it's incredibly strange and just adds to my weirdness!

When I have a voice it sounds like this when the vocal cord is spasming so much I find it hard to breathe or eat.  I sound very robotic. I cannot speak at a different speed or volume and I cannot say anything faster than this.  It's extremely frustrating.  On top of it sounding very strange people often think I have some sort of brain injury or I'm mentally incapable of understanding them. So I often choose not to even try to speak. I just write a lot of notes. I couldn't even order my own lunch in the hospital because I didn't have a voice that anyone could hear.  I couldn't tell my kids goodnight!  But I facetimed the kids and waved a lot! Makes you appreciate your voice.

So last week each time my throat would clamp down I would make it out to the hallway to wave down my nurse and write what I needed on a piece of paper.  It's very lonely not being able to speak because I am such an extroverted person. But I find ways to still communicate.  I can still dance, and move, and write.  My cousin Steffanie came to visit me.  She heard my weirdo voice and very seriously said, "At least you aren't chain farting or something." I laughed so hard I couldn't move.  So there's always that.  I'm mute, but I'm not, in fact chain farting. Love you cousin!

I got admitted from my cardiologist's office.  He said I couldn't go home and that I was too sick.  So I spent an entire week staring at the four white walls of St. Luke's trying to figure out what to do next. I could have just sat there and watched TV.  But I wanted to go home.  No one would let me go home until I could control my heart rate. But no one seemed to know what to do.

I was unable to speak so I decided to figure out if I could find a pattern with my throat clamping down. I needed to be able to tell the ENT the series of what was happening. So I decided to conduct an experiment.  I walked in the hallway with my telemetry monitors on and found out I was walking with a heartrate of 119-127 before dinner.  Then I ate dinner.  Walked again.  Immediately I was out of breath and feeling my throat clamp down.  Alarms went off, nurses chased me down the hallway.  I turned around assuming they were chasing someone else but then I saw the light on my door blinking.  The odd moment when I realized yes, they were indeed chasing me and finding out my heart was over 144 just walking. Well, crap. What the hell is this now?  Is it my heart, Is it my lungs?

Everyone was quick to blame the pacemaker, including me.  But it wasn't the pacemaker.  It was my throat constricting.  Which made my pacemaker think I was running full speed when I wasn't! Eating was causing the problem.  So I took a muscle relaxer and went to sleep.  Then I walked again, my heart was slower and my throat was open.  I let the docs know my findings the next day.  They said my experiments proved the problem and that I needed to get to the ENT Center immediately to begin treatment. So just like that I got released.  Because I fought for myself. Because I figured out what the problem was.  Be your own advocate.

So I arrived at the ENT office basically unable to speak.  They wanted to know certain details, like my birthday. Normal things to ask but imposssible when you have a neurologic speech disorder.  Numbers are impossible for me to say.  You don't realized how much you depend on your voice until you don't have one anymore.   It's embarrassing when I go out and my voice is not my voice.  It sounds like a different person speaking, a robot.  Even if the speech office I was the lone weirdo unable to communicate.  It was humbling. I wonder sometimes if God just wanted to see how I'll respond so he just throws things at me.
I had written out what I needed to tell the doctor since I couldn't communicate.  He read my experiments and hooked up a camera to look at my vocal cords as I attempted to say numbers.  He said he knew exactly what this was, it is a vocal cord disorder called spasmodic dysphonia.  I also have severe largngpharyngeal reflux which is a complication from asthma.  It's destroying my vocal cords.  So I stopped eating. I went on a liquid diet.  

I'll be on a liquid diet through Christmas.  I feel like it's a scene in Vegas Vacation when I eat dinner,"Gimme some of the blue, and that other "stuff". Ha Ha. I made a ton of different soups and smoothies.  But it's working.  My throat is starting to calm down and beginning to heal.  Some days I sound kind of normal.  But I didn't realized how much voice inflections matter.  Without them everything sounds like a question.  So when you call me I sound like I'm saying "Hi?", like I'm not sure if I saying hi which is confusing for people!  
My voice is slightly improving but it's a long process.  So I sound like this most days (after I've taken all the medications.) I'm trying to remain positive and I hope to regain my normal voice soon. Until then I'm kinda trapped at home resting. I'm watching a lot of tv and trying to sit still which is very hard for me to do!! I've been cooking all sorts of things, then pureeing the hell of them. :)   

I'm trying to be a good sport but this has cancelled our Christmas plans. We cannot travel until I am well and this has been very disappointing to all of us.  I tried so hard to make it for Christmas.  I even shipped all our presents ahead of time this year. Only to have to ask Jeremy's family to ship them back for me. We'll have a nice Christmas at home.  We have everything we need.  It's just hard when life throws you a curveball. Of course, I remember that so many people suffer with one thing or another.  Whether it be medical problems or financial ones.  We all need to support each other on this journey we call life.  

So how do you handle crappy situations?  You remind yourself of all the things you have in life.  You be grateful for all the "small" things, like walking, talking, and kissing your kids goodnight.  So don't stress over not getting the "right" presents or if you haven't sent out Christmas cards yet.  In the end it doesn't really matter.  We have each other, we all more love than can be contained in this house, and we have skype to visit friends and family. 

Remember this year that not everyone has family around, or maybe they are going through a divorce or a death in their family.  Reach out to support others.  Even when they don't ask for it.  God Bless and Merry Christmas.  Sing some Christmas Carols for me.  I'll be singing them in my head for now.

I did in fact get our first Santa picture taken!!! Yeah for progress!