a wonderful discourse

hey there all,

firstly, i want to say that i think this current discussion has much value; having open dialogue, about sometimes sensitive matters, conducted with with respect, is immeasurable in terms of growth and knowledge. even when, or especially when, some of us may differ in our ideologies… i can still love and respect another when their ideas differ from mine. and let’s face it– all we are talking about here is that: ideas, ideology… what makes the topic interesting is the banter we can have, where it leads us, to which open doors, etc., not because i, or hopefully anyone else, holds an agenda, however consciously, to change the minds of others.

so, having said my disclaimer– let us continue, shall we?

certainly i haven’t even made it half way through this protocol yet and have no legitimacy to stand up on a podium and dictate how it was or even whether it “worked..” mostly i have wanted to share it along the way and enjoy your support throughout.

but i have to admit something i have felt for a longtime regarding the forum, our special place. as i explain, please know this– i do feel a fraternal kind of bond with you all as a collective– and some of you have even become special to me. so i say this not to antagonize, but to be honest about what i have felt.

resignation and complacency come to mind. now i am no fan of how neurology contends with cidp, this is clear. i rather like that i am getting treated by an immunologist instead… the concept alone, of approaching this illness from an immunological vantage seems so plainly logical to me. neurology has a bag of tricks for us– all designed to keep the disease at bay. that concept has never sat well with me. never. and any chance at medical creativity is thwarted by medical conservatism for a variety of self-serving reasons (another topic perhaps). but i will go forward with this as one of my premises. there is an impression among neurologists that, based on what they’ve learned, various courses of treatment are to commence with the hopes of getting the patient ‘the best they can be.’ so this person does ivig and x, and that person does prednisone and y, etc. NONE of the x, y and z’s are good for us, nor do they, in most cases, make us feel well. cidp reality check– remission is nearly non existent. everybody makes their own decisions and choices and that’s their prerogative, by all means–

but consider the case of pam h. she has been in a sustained remission for 7 odd years, no meds, no docs. had she had her chemo earlier on in her illness, perhaps she would no longer have any sign of the disease; instead she has lifelong disability from permanent axonal damage–shame. i say perhaps, but i really mean: likely. and then there is emily– also in remission from chemo. jan b got a double whammy when she had to deal with breast cancer along with her cidp. strange thing happened– the chemo took care of both problems. scientific evidence? no, not from these few wonderful examples. but if you delve into the statistics both here and abroad, chemotherapy, in high dosages, is curing cidp. some countries even use the word “cure.”

@homeagain, my friend… you are one of those special ones and i have enjoyed your continued support. thank you. you wrote, “As for trying chemo? Don’t you have to admit [even a teeny bit?] that it sounds drastic?” i do understand your question, and i’m glad you asked– since that is the 1st thing that comes out of neurologist’s mouths, which subsequently influences patients, as few professions can. “the doctor’s always right” concept along with “listen to your doctor,” is alive and well, despite patient advocacy efforts. having said that, keep in mind that every time a big new treatment comes along, it’s considered “drastic.” from heart transplants to bone marrow transplants for cancer, each time medicine introduces something new and seemingly “drastic,” there exists resistance in all parties. what concerns me the most, and is why i have used the word complacency and resignation, is that it’s usually NOT the patients themselves that make resistance– they, like me, scream from the roof tops for it. a classic example of this was during the beginning years of the AIDS crisis. pharmaceuticals, insurers and the FDA made new treatments unavailable to people who had very little time left. and they fought, they fought like hell– and they won!

which reminds me of a disappointment i felt during the many months of my campaigning for health care coverage. i was able to get the attention of the media, etc. this sore spot has healed, but i did feel let down that this forum, the one consolidated group of people that share my illness and had everything to gain from the publicity, independent of me, but did pretty much nothing to help– i refer to letter writing in particular. just one did. my feelings weren’t hurt– i was more in disbelief… and i place what happened in the complacency category described above.

@pam– you’re my hero. you are the real pioneer here. and in regards to being harshly shot down because the topic caused some an itch– no one should be shooting anyone down here. it’s just not the point. you have an excellent and worthwhile story to share and new comers, of which there are sadly many lately, can benefit from knowing that IVIG isn’t the miracle drug it’s made out to be, that there are other options, and that you have been cured 😉

pardon such a long post, but like i mentioned, chemo makes me feel good 😉

warmly,
alice

p.s. as always, i appreciate your support, thoughts and positive energy!