I am glad I didn’t think too hard about what my voice disorder appointment was going to be like. What an ordeal! I was gone 7 hours. I spent more than a couple of hours with the first doctor. I talked to his computer and had videos made of me. That wore me out. I don’t have enough air to both breathe and talk.
Then the awful part. I got a fiberoptic laryngoscopy. He stuck a scope into my nose and down my throat. I couldn’t get the numbing meds because they would make my MG worse. It didn’t really hurt that much….but it was very distressing. My nose instantly stuffed up and tears came out. My body wasn’t amused to have foreign objects torturing me. I had to make a series of noises and say scripted things. I sure was glad when he pulled out the scope!
Even worse than that…he started poking at my throat from the outside. Dang! That made me cry. He said my muscles were extremely tight. Then we did more fun tricks with my voice. It was very interesting to see what sorts of sounds I was able to make versus those I couldn’t. I was surprised that humming was the worst, but singing was easy. And, he tricked me into singing. I can’t sing in real life. If I make the mmmmmmmmmmmmmmmmmmm sound for a while, he could add vowels if I started with the mmmmmmm first. But I couldn’t properly say the words unless I did the mmmmmmmmm first. I would think cool! My voice is back! Then I would try to talk normal and it would be all broken up.
You know….it would be nice to go to a doctor and NOT hear that I am a very medically complex patient! When the big wig doc came in, that’s what he decided. I am complicated. Apparently I have a mix of spasmodic dysphonia and muscle tension dysphonia. The top doc looked at my YouTube videos. He seemed to know a lot about myasthenia gravis…..way more than the idiot neuro. He told me the idiot has partially retired. I started clapping my hands 🙂
So…..as I understand it so far, everything is made worse by the stupid MG. My hypoventilation is what caused the atelectasis. MG is what caused both….mostly because of weakness. I am basically too tired to breathe. The lack of air and weak neck muscles are making my voice worse. My body compensates for the weakness by tensing my neck muscles in order to breathe, talk and hold up my head. The muscle tension keeps my vocal chords from closing correctly. The spasmodic part is the tremoring and spasming in my vocal chords.
There was a lot said. A lot to absorb and process. I was impressed by how nice and how knowledgeable both docs were. They thought I could get somewhat better with voice therapy. But then….the office expert said my insurance won’t pay for it. They are going to apply for some sort of grant so I can get the voice therapy. I will believe it when I see it.
Another thing I don’t understand….how come every sort of unrelated doctor says I have MG, but the idiot neuro that caused me all this grief in Utah was such a jerk and decided I didn’t? Will I ever understand? I believe it’s the guy’s personality mixed with financial gain.
So……doctor after doctor is saying the MG is making everything else worse because it’s not being properly treated. Hopefully they can all gang up on my insurance and work towards getting my IVIg approved.
I had NO IDEA where I was when I left the voice disorder center. It was another one of those random buildings in the U’s research park. The bus driver left me off at his best guess for where I needed to be, but I had to go in circles before I found the right road and building. Once I left, I had no clue what direction to go. It was a fantastically gorgeous day, so I pointed my wheelchair in the most likely direction. I found myself on Sunnyside. The street name sounded familiar, but I had no idea where it went.
Not many people around. Finally there was a guy fooling with stuff near his pick-up truck. I asked him where the road went. He said it was really 800. That’s the street I live near. We started talking. He was very gregarious and curious. He wanted to know what was wrong with my voice. I told him I just came from the voice doc. We ended up talking a couple of hours! He had me drink some aloe vera juice. Mmmmmm…..like drinking snot. He ended up giving me a bottle of Herbal Aloe Force Skin Gel to put on my belly wound. It was the sort of seemingly random, but totally not, type of connection that I am always bumbling into.
It was about 4 miles home by wheelchair. When I was 2 blocks from home, he started beeping his truck and pulled over. He wanted me to say hi. I wasn’t sure if it was his fiance or his secretary. He kept talking about both of them. Nobody was more surprised than me when I started to talk and my voice worked! I think it was from being out in the cool air so long. It wasn’t all that cool, though. The official high was 64. Flowers were out everywhere 🙂 I went by a bazillion crocus flowers in purple, yellow and white. Some perennial plants were already maybe 8 inches high. I am glad not to be enduring the east coast snow and below zero weather!
I really, really, really miss having a smart phone. It was easy to take selfies, it was handy for taking flower pics, I was always using the GPS to find my way and I could look up things on the fly, like bus routes. Back to the Dark Ages for Wendy :-p Amazing how quickly technology can seem indispensable. I had both my chromebook and my camera in my messenger bag on the back of my chair, but it was just too much work to dig them out. Yup, lazy and spoiled!
I relearned a lesson today. The late winter sun is getting stronger. I have quite the butterfly rash on my face. Sigh….. But dang! It was a spectacularly beautiful day. Now I am wiped out, tired. People have come to my door twice since getting home. My voice no longer worked when I tried to talk. Booooooo Hisssssss. Hmmmm….I look better in the pic than in the mirror 🙂
This has been a day of miracles. Someone must be responsible for this last one. I have been out of Miralax for a few weeks now. I have arranged and rearranged the shelf I kept it on. Today I opened that closet door, and there, as plain as could be, was a brand new bottle of Miralax! I was getting pretty desperate for more, since the Metamucil seems to be making me worse. So……how did it get on my shelf???? There are two employees and one neighbor with keys to my place. Who bought it? How did it get there? A very nice mystery 🙂 Thank you universe!
I got pre-made falafels at FNB. It was nice to have food ready to scarf down. I made a sub-looking, meatball-looking grilled sandwich on a ciabatta roll with Swiss cheese and Sriracha bbq sauce. Not bad at all 🙂
Oh…..I got a knock on the door. It was a woman I like, but don’t see much. She brought me a cupcake with caramel apple frosting. Yummy 🙂 The miracles just keep coming!