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I'm more familiar with teens mounting a rebellion. Infants to old people act out over life's inequities, we're more aware of it with age. At six, I'm challenged to imagine which inequities or just what is driving his behavior. At six, I am certain I still believed I could will anything a way...
“Only God Knows”, maybe for the moment very few people “know” but results are preliminary. I can attempt to explain some of the issues that influence what we know and what we don’t know about CF genetics.
To understand Cystic Fibrosis (CF) from soup to nuts, I suggest a couple of internet...
The concerns I would have deal more with the sedation. Any oral surgeon's office won't do, larger groups will have a qualified nurse/anesthetist. I had my wisdom teeth removed in my late twenties. They forgot to remove the tourniquet before injecting the IV sedative. With my vein bulging with...
KrakenKrunch,
Oh, woe is me. I can’t imagine a CFer or CF family that isn’t caught up in at least some self-pity. I also find it difficult to imagine how many CFers are trying to treat their own mental health when they would never consider self-treatment for physical issues. I think of a mental...
I believe that P.a., Steno and other mucoid an therefore highly resistant bacterial infections are on the way out. A contributor referenced a research paper that quantified several aspects of mucoid bacterial colonies, the work done on biofilm resistance to date and how much this research has...
Enzo,
I have posted quite a bit about Medical Marijuana (MM) in the past advocating for MM use with common sense cautions. I wouldn't recommend MM as a first line of treating CF pulmonary issues but CF takes its toll on our mental as well as physical health and there could be a positive trade...
I second the sweat bands. CF sweat is nothing to take lightly. Until I read a similar post topic a year or three back, I thought I was a freak of nature. I'd never make it in a life of crime, my hands are perpetually wet with an acid etching sweat that indelibly marks every finger print on most...
Tannin or tannic acid has been added to red wine for centuries. Tannin is in black tea and a few other foods and it is established in causing migraines. No doubt more people have a mild histamine response to the complex VOC's that fast track to the nose.
I'm not a wine expert but one might be...
I am at wit's end. I've dealt with wicked chronic pancreatic pain and equally wicked amounts of narcotics to control it for forty years. This latest round of the medical industry's latest narcotic knee jerk is closing off access and I just don't have any fight left. It's maybe time to rip this...
Hi Imogene,
I go to NJH and Dr. Nick is my CF specialist. I asked him about the procedure and got a shrug in response. Adult diagnosed CFers and incoming adults are in for a surprise if NJH is any example. The areas of specialties is uneven and at NJH they are lost below the diaphragm.
I have...
I am at wit's end. I've dealt with wicked chronic pancreatic pain and equally wicked amounts of narcotics to control it for forty years. This latest round of the medical industry's latest narcotic knee jerk is closing in and I just don't have any fight left. It's maybe time to rip this baby out...
We avoid sneezing or coughing on others and vice versa but allow blowing out a birthday cake. You're being extraordinarily thoughtful of others and if your little one is a juicy mouth, it probably would be appreciated by other parents. My concern is for DS, has he had a birthday party? Did he...
Enzo,
You need enzymes to digest food. Some food components are broken down by saliva and action of the stomach and the HCL it produces. Sugars and certain proteins and amino acids in food are absorbed without the need of pancreatic enzymes or Creon. Finally, the gut is full of probiotic...
Ooh! Do you mean that upper back pain that feels like somebody is driving a log splitting wedge into the vertebrae right between the scapulas? Lungs don't hurt, as most of us have been told. In fact most of the pain we suffer from, the pancreas, bile ducts, gallbladder, liver and lungs refer...
At age 18 I was 115 pounds hung on a 5'11' frame. I was swimming one mile a day before my first class. The pool was cool for racing and the idea was to gain some insulation in the form of fat. Wrong. I lost what little fat I had keeping warm. A mile swim is a calorie burner and you'll look like...
Pancreatitis, as CFers experience, is generally pancreatic auto-digestion. Water thin mucus loaded with digestive enzymes and sodium bicarbonate is normally produced in response to food and is squirted into the duodenum along with bile moved by a spasm of the gallbladder at the right time to...
To the family and friends of Rami,
I find the writing of John Dunne comforting when contemplating the death and life lived of a fellow traveler. To paraphrase his archaic English, 'the loss of just one diminishes us all'. He goes on to say 'no man is an island, we are all related in a common...
It is difficult for me to imagine the emptiness and sorrow you must feel. It isn't fair. Even knowing your brother is at peace seems to be thin consolation. If you can, when you think of your brother, celebrate his life by focusing on how he enriched your life. Don't forget how you enriched his...
I have discussed using a medical vaporizer like the digital temperature controlled Vapir No2. Sold as a dry chamber vaporizer, it heats materials from room temperature up to 400°F in one degree increments. Vaporizing essential oils which by definition are VOCs is far preferable to burning...
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