Isolation

I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.

Blog from March 4th

One of the things I’ve thought about is how I feel a little bad for kids/teens today.  I know most are over-indulged, and don’t lack for things.   But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot.  And, I find it completely unfulfilling.

Please don’t misunderstand, texting has its place.  At full voice, I use it often.  But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out.  I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills.  The constant texting leads to misunderstandings,  misinterpretations and a general feeling of loneliness that just doesn’t have to happen.  I know – because right now I am living it.

I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter.  I blog as often as I can.  I “meet” others around the world with Cowden’s Syndrome.  And I am so grateful.  Typically, the internet is a major source of secondary communication.  Except right now – it’s a lot of all I’ve got.

I am still at a point of severely restricted speech.  There were significant cuts made into both of my vocal cords.  I need to practice the exercises given to me in vocal therapy.  AND, I need to be quiet.  Often.

I can speak a few minutes each hour, in a gentle voice.  But, the rest of the time I carry my phone to text my family.  Conversation is brief, and sometimes frustrating by no one’s fault.  Tension can rise quickly.  You find yourself on edge.  It’s a wild form of isolation to be present, yet unable to communicate the way you want to.

I like a nice quiet day alone as much as the next person.  The thrill of being on my own to watch a few shows on Netflix was not lost on me.  I have appreciated the silence I so often wished for.

But, like everything, I’ve also learned too much of anything is not a good thing.

I retreat to avoid my natural posture, which is lips moving.  I am ALWAYS talking.  So even when my family is around, I’ve taken to “hiding.”  It’s necessary for the healing.  But, I’m over it.

There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.

In the mean time, I appreciate your texts.  I appreciate your Emails.  I appreciate your support.  I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.

“You can have it all, just not all at the same time,” a wise friend once told me.

I look around at adversity, illness, tragedy, and loss.  I am aware of my blessings.  I am grateful.

I am also honest.  I live my emotions so they don’t get the best of me.  I laugh hard, and cry hard (although both are frowned upon as the voice recovers.)  It’s all about balance.

So for now,

#beatingcowdens 

will have to be done quietly.

 

 

Speechless

speechless-2

Resting your voice is not like resting your knee, or your shoulder.  Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt.  And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April.  I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful.  The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did.  Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist.  We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous.  Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone.  I did, and the small 20 amp speaker with its wireless microphone have been an incredible help.  Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain.  I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

download

I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report.  I was told that the vocal therapy had decreased the inflammation.  (YAY!)  However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.)  AND, there was now a new, or newly visible “striking zone lesion” on the other side.  Both of the lesions were not “typical,” and would not resolve alone.  Both lesions appeared to have vascularity to them.  And, the “striking zone lesion” was irregular in shape.

unusual word write on paper

Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions.  I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour.  The next several weeks would entail a slow progression back to my full voice use.  The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring.  The very real possibilities of what excessive scarring would do were discussed in a casual conversation.  By this time I am comfortable, and confident in the therapist.  She is smart, witty, and honest.  She’s real without being painful.  She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve.  I charged my microphone, and I found the voice that exists out of my throat.  I have started to shorten my sentences.  I’m learning.

About 3 weeks ago it started to get worse.  Slowly and steadily worse.  Every day I would do my exercises, and I just couldn’t get the sounds.  My air was becoming a battle.  The inhaler became a part of many days.  I slept as much as I could.  I stayed hydrated and took extra vitamin C.  I ran no fever, but my chest felt full.  My head was pounding.

I stopped using the phone for anything but texting.  That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center.  I was told I had “a lot of fluid” in my head.  I changed the allergy medicine.  I took a nasal spray.  I got a short course of antibiotics because it was lingering, even though I had no fever.  I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

no-talk-md

Saturday I sat at therapy, so frustrated.  She was so patient.  So wonderful.  She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords.  We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything.  We can NOT scar the vocal cords.

She had looked at my exams from July and October.  Side by side.  Frame by frame.  And very clearly stating, “I’m not a doctor, but…” I hung on every word.  I processed them with respect.  Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest.  That’s where we’re at right now.  I am supposed to rest my voice when I am not teaching.

This is NOT an easy task.  I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

isolation

The lesions won’t heal themselves.  I can just get ready for when I need to heal.  I can prepare for a lifetime of speaking in a way that babies my voice.  I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me.  But I’ve got this.  I’ve got this.

If you don’t hear from me… try my email.  Or texting.  My typing skills will be improving greatly….

#beatingcowdens

fear1

I have nodules WHERE???

It took me over a week to actually wrap my head around this one.

The summer is not just time for Meghan to get checked and cleaned up, it’s time for me too.  And this summer I tracked down a new doctor.

Sometime around the end of April my voice started to bother me.  I was getting hoarse easily.  I explained it away as allergies, season change, dust, “I must be getting sick,” and everything else I could think of.  Except it bothered me.  And that creepy voice that sneaks in sometimes to remind me that my body has already betrayed itself once, started to take hold.

hoarse

After almost 20 years of teaching, and never ever struggling to use my “teacher voice,”  I couldn’t project.  Simultaneously with the pain in my right implant, and the nodule being watched on the remnants of my thyroid, it started to get in my head.

I went to my primary doctor, and wasted several hours to get nothing that resembled an answer.  They suggested a thyroid sonogram.  I never went back.

I started researching ENTs locally.  I found very few who took my insurance, and fewer who seemed to have any voice experience.

I turned to the internet and found a voice specialist at a facility I trust in NYC.

I don’t really know what I expected from the exam.  I filled out the preliminary papers, and gave the basic Cowden’s rundown.  They did a few tests externally with a microphone, and another with a camera in my nose.  Not pleasant, but incredibly informative.

And there on the screen was a “benign appearing” nodule on the side of my vocal cords, causing them to briefly lock together when I make certain sounds.  Fascinating.  But bothersome all the same.

Not mine, but they looked a lot loke this.

Not mine, but they looked a lot like this.

They reassured me several times that the nodules were “benign appearing.”  I appreciated that, but reminded them many of my scars are from “benign, and benign appearing” growths.  I asked about the prevalence, and if it was linked to my Cowden’s Syndrome.  I got a very definitive, “Maybe, or maybe not.”  These nodules occur in the general population, they can be caused by overuse, but what had me perplexed was the problem seemed to start when I did the LEAST amount of teaching for the year.  I was out of my program for quite an extended time between spring testing and other professional obligations.  So, why now?

And, what to do?  September is looming, and my life will be in the classroom many hours a day.  I need my silly voice, my sing-song voice, my stern voice, my loud voice, my quiet voice, and my serious voice.  Elementary school students expect, and deserve nothing less.

I was given a number for a “voice therapist.”  And as of now my voice is getting a workout leaving messages for her.  I asked the doctor what are the chances this “voice therapy” could control the nodules.  He told me it “couldn’t hurt.”  I asked if this was like giving me compression hose for my horrendous veins?  Is it going to be a situation where voice therapy delays an inevitable surgery?  Because any scar tissue on my vocal cords seems scarier than the painful legs I’ve contended with for years.

voice

The answer is, there is none.  I will persist and connect with this voice therapist.  I will hear her out and try my best.  And in 4 months or so I will follow-up with the doctor to evaluate.  That is assuming the fall semester goes off without incident, and all my new students can hear me loudly and clearly.

For now, I’m using mostly the quiet voice.  Often mumbling to myself.  Because whether this is Cowden’s related or not, the whole “growing things” in my body is incredibly old.

Watch.  Wait.  Check.  Recheck. Remove if necessary.  That’s how we roll.

#beatingcowdens