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| I really looked JUST like this, too. Bald. |
Saturday, June 1, 2013
Laryngeal Dystonia (spasmodic dysphonia)
I was diagnosed with Laryngeal Dystonia a month ago. At the time, all I thought was, "uh-huh, I'm sure there is something else to add to all this..." Out of boredom, and curiosity, I Googled it. Turns out it's actually a big deal. It's painful, and downright exhausting. Who knew? It's also common in those who have certain diseases. Diseases like, oh I don't know, Multiple Sclerosis. I did not know that. It's not all that common of a disease, the Laryngeal Dystonia. It's estimated only around 300,000 in the U.S. have it. My husband said I'm special. My response:
I just thought this was a condition that wouldn't be that big of a deal. So I can't talk on the phone anymore.... so it's super embarrassing to talk to people.... that's all I thought I was dealing with. Reading the symptoms, it turns out it's causing a lot of issues. I had no idea it was that big of a deal, really. Very, very big deal. One more thing to add to my list of "that sucks" health problems. Oy vey, leave me alone already. If you wanna know what Laryngeal Dystonia is in better detail, read about it here. Read about it HERE. :)
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Hi Rachelle,
ReplyDeleteI'm sorry to hear about you having LD. I too have it,its a real huge bummer. Im 46 yr old, married, mom of two girls, I've been diagnosed since my early 20's..anyways, its been a long struggle with my voice. Today I stunbled across your webpage as I googled laryngeal dystonia, once again,hoping to see something about new treatments/technology. I saw your page and saw the word "phone" and decided to write a note to you, just o say hi. I have the same awful hauntings with the phone too (and face-to-face)but the phone calls are much worse at times..like today! Im so embarrassed and feel like an idiot..people who really don't know me must think Im crazy just by the sound of my voice. It's so hard..especially trying to find a new job.
Do you get Botox injections for your vocal cords?
Julie in AZ
Oh, Julie, I am so sorry you have it, too. It's absolutely awful. I can't believe you've had it for that long. Have your symptoms become worse? Just within the two years I've had it it's become worse for me. :/
DeleteIsn't talking on the phone the worst?!? It's especially awful that they don't know you. I always get, "are you okay?" Yeah, if I can get the words out, I'll tell you it's just my dumb disease. I'm not about to cry, promise! There are times I wait to tell my husband something because it's just so bad. It's horribly embarrassing. I used to love public speaking, I could talk to anyone, and I had so much confidence. I can't believe what's in a voice. I lost all my confidence. I am terrified to speak.
I haven't had the Botox injections. I know it's in my future, though. It's getting really bad. The doctor who diagnosed me told me his friend has had it for around twenty years as well, and he is very close to having no voice at all. He got the injections and they seem to be working well for him. I am terrified of getting it, I will admit that. Botox is very harsh, and the thought of a needle in my throat is a little unsettling. Then on the other hand, it would be nice to have a voice again. It's exhausting, and yeah, did we mention it's embarrassing? :) Botox isn't something I'd rule out. Have you tied anything for it?