Sometimes it feels like a rollercoaster…that I can’t get off. It seems that as soon as I complete one form of physical therapy, another takes its place. The therapy du jour this time is speech therapy.
A family friend recently teased me about that because she remembered my mom’s tale of an absurdly satirical parent/teacher conference when we still lived in Birmingham Alabama. One of the litany of complaints my seventh grade teachers lodged was that I “talk funny and need a speech therapist”.
I didn’t then or now suffer from a speech impediment. You have to understand that — like many people with ADHD — I have a fast rate of speech. I think to southerners, with typically slow drawls, my rapid fire speech seemed like a speech defect.
That was far from the most risible criticism they lodged. I’ll get to those in a bit. (My mom and I soon moved to Southern California, where my teachers failed to notice this vocal impairment.)
I did have a speech therapist in the nursing home, though she was tasked with evaluating my readiness for a Passy-Muir valve, which allowed me to speak when I had my trach. She was also the one who gave me to go-ahead to eat pureed food and later solid food. (I like spinach…but I simply couldn’t stomach the pond scum that pureeing turned it into.)
Once I had the Passy-Muir, I needed to regulate my rate of speech to avoid running out of breath before my sentence was completed. I never did manage to master that.
My speech is so fast that if you listen closely you can hear a sonic boom.
This has also been a problem for Keith’s mom Joella. She’s hard of hearing and often uses lip reading to help her catch what she’s missed. I try to slow down my talking with her. Honest. But Keith often has to translate what I say to her, as if I were speaking a foreign tongue.
Yet now communicating with Joella has gotten ten times worse. And that leads us to why I actually do need a speech therapist. I’ve been suffering from extreme hoarseness for the last few months. I wrote it off as allergies due to our unusually wet rainy season last winter.
The resultant blooms have been wreaking havoc for everyone with seasonal allergies. Like me.
I was also engaging in serious denial because I secretly feared that my autoimmune might be coming out of dormancy. The last time I had such severe and long-lasting hoarseness, I also dismissed it as unusually bad allergies (which do tend to cause a rough throat in me).
It turned out it was actually caused by my dermatomyositis. Fortunately, I wasn’t experiencing the accompanying swallowing problems this time, not to mention the bilateral muscle weakness and skin rashes. But what if…?
I eventually got fed up with talking in a barely audible whisper and made an appointment with with my primary care physician. He referred me to an ENT.
Diagnosis: Gastroesophageal reflux disease (GERD). Kind of disappointingly prosaic after my run of rare diseases. Take dermatomyositis (please). The incidence is fewer than 200,000 cases a year. Legionnaires’ disease? Fewer than 20,000 per year. I caught that twice.
For GERD, on the other hand, more than 3 million are diagnosed every year. I’ll have to try harder next time.
The ironic consequence of suffering from so many conditions is that I tend to be a bit blase about the seemingly less serious symptoms. Lately, that’s anything less than multiple strokes on both sides of my brain.
I therefore let the hoarseness drag on for way too long before seeking help. Probably, if I had seen an ENT/speech therapist sooner, I would’ve recovered my voice fully by now, more than a month after my diagnosis. I have had some improvement, but it’s not just Joella who can’t understand everything I say.
No, I just want the sprouts (instead of the misheard, no sprouts).
So, here I am, just where the complaining junior high teachers wanted me to be: Doing speech exercises. And, yes, I am supposed to slow down my speaking. At least that’s the idea.
But then, one of the other problems the teachers kvetched about has hampered my therapist’s work with me, as well. I’m supposed to take a deep breath every time I do the throat-strengthening physical exercises and many of the speech ones, too. Yet those “funny breathing noises” get in the way.
For the record, those noises were caused by me gasping for breath after climbing the long flight of steps to that teacher’s class. (The parent/teacher conference took place in the midst of my recurrent “walking pneumonias,” which were either a manifestation of my lung damage or part of a continuing disease process.)The problem now is not so much my “funny” breathing noises, but it is related to the damaged lungs that caused it. I tend to feel light-headed after taking successive deep breaths and exhalations. Yet my therapist is nice, and she’s been working with me as best she can considering my physical limitations.
Gerding for New/Old Dietary Restrictions to Fix My Speech
I was diagnosed years ago with GERD by a different ENT, who prescribed twice daily Prilosec. But proton-pump inhibitors like omeprazole are notorious for contributing to osteoporosis and causes a host of other nasty, long-term side effects. I already have severe osteoporosis thanks to prednisone, so I went down to a single daily dose.
I also decided that I was neurotically restricting my diet too strenuously. Slowly, I began carefully adding foods back into my diet. I don’t think it was the small mandarin orange with lunch that did it. Not even the single cup of coffee — diluted by half with milk — in order to knock me awake in the morning. (I like to joke that every morning is like a new coma awakening for me.)
It wasn’t even that I reduced the quantity of Tums I was taking, both for its medicinal effects and as a calcium supplement. The nurse practitioner treating my osteoporosis said I was taking too much calcium and recently advised me to cut back on the Tums.
Instead, I think it was all of the above, with the reduced Tums being the straw that broke my digestive system’s back.
So, gone is the weak coffee. I’ve also sadly waved goodbye (for now) to the little, lower acid mandarins, which are again forbidden fruit. But I’ve continued to cling to my tea, which is also on the verboten list. Without tea to perform its daily revivification, I would risk being misdiagnosed as profoundly brain damaged again.
Hello, this is my brain on morning.
While my seventh grade teachers would be gratified to know that I’m in finally in speech therapy, I’m proud to say that I never became a “Georgia Peach.” This alleged deficiency of character confused me because we were in Alabama. (I wasn’t present, but my mom told me about it later.)
The other major criticism was that I had an artificially enlarged vocabulary. The teacher who lodged this complaint was the gifted program English teacher.
Yes, I admit it. I had my brain surgically enhanced. Okay, not surgically, but I read adult fiction. And if I didn’t understand a word, I would look it up. Shocking, I know.
That story, admittedly, is completely unrelated to my GERD. But then, I was never going to be the kind of student they could stomach.
Meanwhile, I will continue to read out loud, as I draw out the esses, “Congress passed the bill to save the southern sea seals.” This was either written years ago, or set in the same fantasy world as, “Monsters move in the moonbeams.”
What else is an preposterously persistent therapy frequent flyer to do?
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