Need to Vent

[joy240]

Here I sit...letting this thing overcome me...I ask why me? Unfortunately, for alot of politicians ...I am on the mission to send out tons of letters...I have too many questions....
Why the hell should I be worry about cervical cancer...which effects 7300 vs C-diff which affects over 300000 a year...we are in constant debate should we mandate this vaccine...who knows what the outcome of that will be when our daughters are 30 yrs old. Why is Lance Armstong still alive,Cheryl Crow, Sharon Ousbourne...is it that common "RICH" factor...I spend $750 a month on Capital Blue Cross and what does it get me....zip. I would die...but the rich don't die until their old and gray...Is this crazy or is it just me...I never heard of one celebrity with C-Diff???Does all the money they have make them less prone to it. Or is there a differnece in doctors and if so why am I stuck with the crappy doctors
I breath the same way they do....my hubby makes over 200K a year and the government craps on us...The doctors and CDC and government know that these superbugs are a huge issue...so lets dilly around on a cure...is this population control or what??????????????????

[Bobbie]

joy,
You are bitter -- with good reason. All of us with C. diff. have felt the same.

The rich & famous do die young, however, & I could list a whole "bunch"of them. How about Christopher Reeve? Is there a sadder case in this whole world than his death - & then the death of his young wife?

C. diff. doesn't discriminate between the rich & the poor & the famous & unfamous. If you were a celebrity would you announce to the world you have diarrhea? Someday, someone will have the nerve to do so, & it'll do us a ton of good.

Several docs. have posted on this site about their C.diff. -- also many nurses. It's strictly a "non discrimatory" disease.

Do contact your legislators in an attempt to make C. diff. a mandatory reported disease. Doing something positive in one way to fight it.

[joy240]

I worked as nurse...Ive done oooodles of research on different conditions like certain types of brain cancer that are incredibly rare...Doctors have found a way to reset ones immune system with certain rare brain cancer an make the cancer attack itself by doing so. But all of us are still stuck with no answers...Why is the focus on only the rare?????? My father had a rare disease...so rare that the docs had no idea what was going on at first...He spent months going to the U of P ...and no one knew nothing except his liver was shot....mmmmmmmmmm...he must of been a drinker, right? wrong!!!!!!
The docs insisted...drinker....but found combo of hemochromatosis and Wilsons disease...he had a liver transplant...did OK with the meds for about 2 years then the bomb dropped...VRE, leukemia, aspirgil, you name it...He dies on December 31st... 2 years ago. He was the 2nd oldest living man in the world to have both diseases at the same time. It disgust me that all these things happen and the focus is on the little stuff. I want to see my daughter grow up..get married...have children...etc,etc,... I have been C-Diff free for over 3 years and I wake up everymorning consumed by this thing....thinking hope I dont get sick today! I have been to counselors but they just say dont worry about....uhhhhhhhh...how can one not worry about this beast - CDIFF

[Bobbie]

Joy,
I agree -- C. diff. can affect the rest of your life --if you let it. All of us are terrified of getting it again. I had it twice (4 yrs. lst time) & then again 2 yrs. later. My son also had it twice many yrs. earlier (lst time in l979 when few knew anything about it). I cringe at the word "antibiotic." I've had pneumonia 4 or 5 X & also developed other problems, some definitely related to C. diff. & others maybe not.

My personal opinion is that "rare" = no money. When a disease becomes prevelant, there is more interest in researching & treating it for the end result: $$$, prestige, and often altruistic reasons. Also, the more common the disease, the more people that are affected and thus "the greater good."

C. diff. is no longer rare, however. We've tried lots of things on the site to make it better known -- even did a group Email to Oprah w/o any luck. Many of us have contacted our state legislators with little luck.

As this disease "snowballs," & it will, there will be more interest in curing/preventing it. For yrs. there was little research or interest in it, & now there is ,& there are several new treatments. When my son had it & when I had it the first time, there was little known about it. I had no one to talk to about it, and there weren't any support groups. Not a fun time! We have made some progress.

If you can think of some way to help publicize the disease, let us know. We've had some luck with the media (see Media Reports) but little follow up. In the UK, however, because of the NHS & socialized medicine, the C. diff. site there is very active & has made some progress. There appear to be many more cases there, however, & evidently hygiene in some of the hospitals is atrocious.

I wish I'd never heard of C. diff. It's affected my life in many adverse ways. But, we are stuck with it so need to something to combat it.

You should like an intelligent, energentic woman. Do you have any ideas, & would you be willing to work with on a proactive basis?

So sorry about your father. Sometimes, I think if I hear the word "rare," one more time (in regard to my own health problems), I will scream.

[joy240]

I would love to help in some way shape or form...but I have found through my many experience with my fathers situation that money is a factor...is there a way to raise money....like some type of foundation for c-diff? what about guest speakers at hospital talking about hygiene. When I was in the hospital the last time...I needed some bloodwork...the manager with her BSN came into the room with a butterfly sealed...she stuck me once...could not get any blood..threw the butterfly on the bed and then it fell on the floor and she was going to restick me with that needle...I freaked out on her....But where is a good start I can think of a zillion things that should be done...but where to start and how many are willing to help????? Please let me know I would be more than glad to start somewhere....FYI: my colorectal guy travels around the world and is the head of colorectal surgery in 3 different hospitals..one being in Mexico, one I believe in Israel(or there about), and in PA You name the price Bobbie
thanks
jo

[joy240]

BIBBIE
HERE IS ONE IDEA...I WOULD BE WILLING TO START A LETTER RING...I DISCUSSED THIS WITH MY HUSBAND AND AS SICK OF HEARING ABOUT CDIFF AS HE IS...HE ALSO THINKS IT IS AN EXCELLENT IDEA
FIRST, CONTACTING ALL OF THE MEMBERS ON THIS SITE AND HOPEFULLY GETTING A GOOD RESPONSE WOULD BE NECESSARY. EACH INDIVIDUAL WOULD HAVE TO MAIL ME A LETTER OF THEIR PERSONAL EXPERIENCES WITH CDIFF...
SECOND, I WOULD NEED A FEW (FOR STARTERS MAYBE 5)SELF ADDRESSED STAMPED ENVELOPE FROM EACH INDIVIDUAL.
AND THEN SEND MASS MAILINGS TO REPRESENTATIVE, INCLUDING THE PRESIDENT...WHAT WOULD ONE SAY IF THEY RECEIVE 500+ LETTERS ABOUT THE SAME ISSUE
I GUESS YOU DONT KNOW UNTIL YOU TRY
LET ME KNOW WHAT YOU THINK!!!OR PUT YOUR OWN TWIST INTO THIS IDEA

[Bobbie]

joy,
Thx. for the suggestion. I'll "run it" by the other mods. The main problem I can see with a letter chain is many people want to be remain anonymous. Some don't even give their "real" Emails, let alone their addresses. Emails ae often easier & faster.

Will let you know what others say.

[joy240]

Bobbie
I understand what your saying however...if one wishes to be heard they need to be LOUD and only in numbers would any of us be heard. Email would work but then the problem is postage? The only other way would be through paypal or something similar. I'm sure if you sent out a survey that you may be surprised at the overall response
let me know
jo

[Bobbie]

joy,
Will let you know what the other mods. say. (Two are traveling now.)

We've tried many things on the site -- without much response. Our "letter to Oprah" probably had the biggest turnout -- but not with Oprah.

You'd be amazed at how quickly many people (who pledge they will help on the site "forever") are "outta here" once they are "cured."

You might check the UK web site -- see General Discussion. They tried a petition to the PM. Don't know if they got enough signatures or not.

I checked with Dr. McDonald, the epi. in charge of tracking C. diff. in the US recently to see if he had any ideas. I'll copy part of his Email on the site soon.

[cindym]

Joy240- Just be thankful you are over it. The fear may still exsist but dealing with that is much easier than dealing with all the problems of cdiff. I have had the crap for 6 years this July and am sick to death of it. It sounds as though you need to take a BREAK FROM THE CYCLE.......I personally just had to do it because I was so about to lose it out of frustrations of ignorant doctors and lack of cooperation of media. Large numbers of people is exactly what it will take but letters I doubt would do the trick. My suggestion all along has been to have a rally somewhere close to Atlanta where the CDC is located and contacting the media which obviously would pay attention to that! I have written so many letters during my illness and called so many people during this time that I finally had to realize............FORGET IT. It will take some big shot somewhere getting the disease and the media taking notice to ever really get the thing publicized. However, this past week an article did come out in our local paper about cdiff which totally took me by surprise. Could it have been all the emails and letters I have sent and the reporters that I have talked to............FINALLY taking the time to do something? Or possibly one of them got it. Who knows. I had to learn to put cdiff on the second burner instead of the first and start living my life again as it was passing me by! Hang in there.........at some point something will happen!