Quantcast
Channel: beatingcowdens – beatingcowdens
Viewing all articles
Browse latest Browse all 222

Speechless

$
0
0

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



Viewing all articles
Browse latest Browse all 222

Trending Articles