Last June, when the active phase of this "condition" stepped up exponentially, and I hit the internets again (had been researching all along, and had settled on "esophageal dysmotility" as a working definition), and realized that the long term outlook wasn't all that fine, I remember one night thinking: Well, maybe a feeding tube ISN'T all that bad. . . .
Aside from the fact that I smoke -- or maybe because of it -- I've otherwise always been a "health nut." My mother was a researcher/actor too: she learned how to cure my dad's migraines with grapefruit juice (vitamin C), so I come by it honorably. At any rate, since I too have migraines, and smoking about halves your Vitamin C, I've for long been a big fan of extra C. Many of the alternative meds I came across for achalasia (B complex, L-arginine) were things I've taken on and off for years, for other reasons. Being a low energy type, I've taken B-150 for years; and L-Arg for BP. In that context they both *helped*. Found one of the other achalasia self-help sites last year, and restarted the B-100. It helped. Restarted the L-Arg after the doctors kept trying to prescribe CCBs. It helps.
As do Hawthorne, magnesium, Co-Q10, Vitamin C. As do nicotine, caffeine, butter, tomatoes, lemonade, chocolate. . . I quit smoking for five days in the hospital (involuntary), and voluntarily for four days two weeks later -- in the hospital while being IV fed, it wasn't that hard. At home, in four days, the esophagus/LES just shut down, period: I lost seven of my hard-won pounds in those four days, and could feel the dehydration raising its ugly head again. I restarted. The effect was *immediate*. . . .
Never been an enemy of chocolate, nor that much of a fan. Last year, I suddenly started *longing* for it. . . . I watched that longing somewhat bemused, but there it was, and I indulged it. More interesting, and flummoxing to me was in June and the sudden HUGE desire for Mountain Dew. I've *never* been a pop person. And suddenly I was going through two 12 packs in a couple of days. About that time, I suddenly NEEDED bananas, which I hadn't bought for decades. And lemonade, which I was even making at home. Mountain Dew? Co2/caffeine: relaxes LES. Chocolate? Relaxes LES. Lemonade? Acid, relaxes LES. Bananas? Potassium which was low, and getting lower as I lived more and more dehydrated.
Mind you, NONE of this was being done because I was attempting to mitigate or ameliorate the achalasia, which I had in fact *discarded* as a diagnosis. (Imagine my surprise seeing that bird's beak on the barium swallow!) This was simple body-wisdom.
But the truth of it is, that as hard as my body was/is working, it is NOT enough on its own. Even IF it were to get no worse, I am unwilling to continue to live like this. Food is nice, but I am totally unwilling for it to become my only occupation for the rest of my life. And, too, I'm cheap: I HATE paying for and tossing most of what I've paid for. Makes me furious, lol!
But the fact is -- those cells are going to continue to die. Not one thing I can put into my mouth, nor medicine, standard or alternative, is going to change that. Reiki, acupuncture, massage, *nothing* is going to get those dead nerves to wake up and smell the NO.
THEREFORE, I very glad for the medical profession, and the state of the art as it is today. Sobering to consider that in my one little lifetime, I've had two auto-immune diseases, *both* of which would have killed me 100 years ago. (The other was Graves Disease.)
Guess I'm just trying to say, especially to the noobs who are pretty much in denial, that alternative medicine can *help*. . . . what it can't do is CURE. Nor, for all that, can the wonderful surgeons of our lives. . . . They can do a better job, make this damned condition at least livable. But that's all.
Part two of this rant is shorter. While searching for something/someway/somehow to eat enough to keep from starving (post hospitalization), and remembering my sense that maybe a tube wouldn't be so bad, I stumbled across a number of websites for people who have NO choice: Head/neck/mouth/tongue/pharyngeal cancer survivors, ALS, a guy in Australia who has scleroderma. The guy in Australia cooks for his feeding tube (and uses a top of the line blender). He says he's been doing much better after he got off of the canned formulas for his tube. And he at least can enjoy the process and smell of the cooking food.
And I just need to say: WE really don't have it all that bad. Really.
Poets are the hierophants of an unapprehended inspiration; the mirrors of the gigantic shadows which futurity casts upon the present; the words which express what they understand not; the trumpets which sing to battle, and feel not what they inspire; the influence which is moved not, but moves. Poets are the unacknowledged legislators of the world.
Percy Bysshe Shelley