Some articles have appeared in print interpreting helpfulness by spouses as contributing to “exaggeration” by CP patients. Of course, to those of us with CP, this just shows that CP patients are willing to try to penetrate the vocabulary barrier if the spouse seems willing to listen. We may appear to be joking here as we assault the colossal humbug of the “helpful spouse” but we are actually very saddened by the false notions appearing in the literature.
Impotence at treating pain weighs in the millions of pounds per square inch on the minds of doctors in a pain clinic. They are sometimes driven to a type of defensiveness which leads to an accusation of weakness in the patient, which is most unfortunate.
Thanks to all who have taken time to fill out the survey. Please keep submitting your answers. What can we hope from it?
Not long ago, someone remarked that certain recountings of physical suffering often lacked introspection. It is true, of course, that physical suffering is more or less OUTSIDE the realm of introspection. Our reactions to it can also be difficult to plumb.
They think we owe them a happy ending. We think they owe us a blocker of the Nav1.3 sodium ion channel. This movie would play poorly at the box office. Our disease is blasphemous. Who are we to accuse Nature in this fashion! The information is as welcome as the news of a large Asteroid aimed directly at earth. They do not want to think we are at hazard in this big universe with inescapable evil upon us, and so they do not want to hear anything inconsistent with the platitudes. WE still believe in God (we see Him in the work of Hains and Coull) and feel our symptoms are no threat to anyone’s belief.
Peptides are chains of amino acids less than 200 units long. Above this we call such chains, proteins. Shellfish make complicated mixes of peptides to hunt prey. Humans bitten may die but feel no pain.
The odd behavior of cone shell toxin led some investigators to look for the active ingredient. Instead of one, they found as many as 200 peptides in toxin. The cone shell selects a mix in hunting prey. By stopping pain, the prey is less likely to move away from the phenomenally slow cone animal. This aspect. painless death, interested biochemists who sold the patent rights to an investigational drug company. The new drug Prialt is in phase III trials at the FDA.
What constitutes model CP behavior for rehab specialists? Astonishingly, for some, it is the Knight of the Holy Grail.
Wow, we thought the old notion of malingering in CP was dead and gone; but, apparently there are some doctors willing to resurrect this old, debunked, narrow minded view.
It seemed obvious with Carl Saab’s finding of MRI signal in the vermis, that CP patients were not like others. Their brains were misbehaving, specifically, the parts having to do with pain.
We are light years away from the CP work being done just ten years ago. The new scientists are dazzling in their insight. They are going to help us.
It isn’t fair to put pressure on the PhD’s. They are doing the best they can. However, when we see a group of young scientists, such as Haines and his colleagues at Yale, under the leadership of Waxman, we have to pay tribute.
We celebrate to see their articles like the people in Auschwitz celebrated when they heard the rocketry and bombs of the Russians drawing near the camp. Liberation was a possibility.
Since Paul was my namesake, at least my middle name, this latest finding provides a good chance to talk about neuropathic pain. It appears Paul may have had nerve injury pain. If so, maybe he is our patron saint.
Who are we? We didn’t even have that answered BEFORE Central Pain. And now, who are we?
Recently on public broadcasting, there was shown a touching documentary about Pola, who lived through Auschwitz by volunteering to move to a concentration camp in Sweden. She was imprisoned and then, released. Pola
Can CP ever be the mouse that roared? We think so.
Here it is, the admitted “most painful disorder of mankind”, in other words, Central Pain. Of course, this is one of those claims that can only be confirmed by those whose destiny it is to go there. And, for those who have, most of them are way too sick to say anything. That’s pretty sick.
Until finally, you get so sick, that you don’t care. Literally, DO NOT CARE. And that kind of person tends to do irrational things. We have all thought of them. Things like, Chain ourselves to a lightpole outside NIH until they come up with some pain relief. Sounds good, except we are just too sick to get on a plane to go there. And then, somehow, we don’t care any more about those who insist we make sense, in their vocabulary`, when we talk of a disease which has its own vocabulary. We vomit out the message we were too sick to speak.
When we have a sudden awareness, it has become fashionable to speak of it as an “epiphany”, which comes from the idea of speaking up, or clarification. CP doesn’t have any epiphanies because the wires are crossed. Read on.
There was my relative, speaking of some mundane thought he had once entertained, calling it an “epiphany”. He had just begun teaching at a local college, so I guessed academia had its privileges to speak in any trendy way it wants. The word “epiphany” is old, and in antiquity applied to something major, when the mind decided to really “speak up”. Now the term has been broadened considerably. An epiphany can be as trivial as realizing you like one brand of potato chips better than another.
Still, that is how we learn sometimes, as the result of little, crystallizing events. We suddenly notice something. On other occasions we simply climb up the plane of awareness and knowledge gradually, until we are educated in some area. Apparently, the more slowly you learn something, the less likely it is to qualify as an “epiphany”.
It is nighttime. The rest of the house is sleeping. Someone with Central Pain is struggling to find distraction from the pain. The burning from touch of the sheets has either kept her from falling asleep or has woken her up in an inferno. Who called night restful?
She would like someone to reassure her, to steady her from the shock of crawling out of the napalm spa CP has just treated her to. Everyone already puts up with quite a bit from her CP so she won’t wake them, even if she feels so very alone. But where is the distraction. How does she put aside the shock she has just experienced? She must be quiet and lay there while the monster devours her heart. And in the morning, she must blank out the memory and be human again.