I'm a Star???? (Or my colon is)

[Bobbie]

http://issuu.com/enhancemagazine/docs/e ... ayout=grey

Months ago, a free-lance writer in KC contacted the site, and Lauren referred her to me. She interviewed me by phone several times & Emailed me several times. She promised she would send me a copy of the article. She didn't. Today, I had an ENT appointment & the doc.'s nurse mentioned the article. I called the writer. She gave me the name of the magazine & promised she would send me a hard copy of the article.

Click on the Feb./March issue. It's view 32-35 & shows a pix. of a water faucet. It's difficult to read, but read the last paragraph. It "sums" it all up.

[trob25]

Way to go getting a big write up like that! I read the whole thing, it's well done and nice to see she interviewed you. I'm so glad the reporter placed your quote about the mental strain it causes and how only those who have had it can really understand it.

Nice press Bobbie and we certainly need it!

I worked as a reporter myself for two years, back then I only had the Lyme to deal with when I was there and did several stories about it as a result. If I had then had C-Diff, you bet I would have covered it in some fashion. But alas, I had already changed jobs when I was struck with the diff.

[Bobbie]

Thx., Trob.
The reporter misquoted some info. but, in general, she did a good job.

It's so nice to be famous -- even if for only a day -- altho. evidently that day was back in Feb./March. I'm not going to send the hyperlink to friends, however, or include it in my Xmas cards!

Basically, no one still cares about C. diff. although the reporter said she'd had some follow-up interest -- but none that was lasting.

We still won't get any real attention until someone famous "gets it."

Since you are a writer, why don't you write some articles about "our disease?" God knows we need all the PR we can get.

[sks001]

At'a girl Bobbie !!! You did all the sufferers proud. Your comments were very dignified and left out the yuck factor. I totally agree with Trob about your quote about the mental strain it causes and how only those who have had it can really understand it. That is soooo very true.

You're right, it was really hard to read using a Flash Player, compared to regular print (tried the pull down menu for print view, but didn't work). By the way, it starts on page 32 and goes through page 35. Can just type 32 and hit enter at top of page to get to article. At least you can print the article out in case she doesn't send you a hard copy. Are you going to frame it? So funny and ironic that you heard about it from ENT nurse - now that's being at the right place at the right time.

Bad news is that we now know your last name and age - lol - just kidding. Awhile back I made a post about it was good that we didn't use last names on site in case anyone Googled our name.

Congratulations on a job extremely well done.

[Hua Kul]

I agree that even reporters who write about cdiff often don't seem to have much sympathy for or understanding of the cruel effects of this disease, despite interviewing people who are suffering terribly. A while back there was a series of articles in the Hamilton (Ontario) Spectator about the serious outbreaks in that province. I wrote to the lead writer about the experiences of my wife, thinking that she might want to investigate what we had done to stop the cdiff in my wife. I included the link to our story on this forum. Her initial reply was quite derisive and indicated that she still had no concept of our suffering, despite writing about one man with toxic megacolon that wanted to die rather than continue to suffer in that way. I am reprinting some of our correspondence below just to give some idea of the general lack of understanding.

=======================================
From: George Parry [mailto:georgeparry@***********.com]
Sent: Thursday, September 25, 2008 3:40 PM
To: Walters, Joan; Powell, Naomi; Fragomeni, Carmela
Subject: I seem to have cured my wife of C. diff. using EDTA

Hello people. I'm not a doctor or scientist but through research in the literature and experimentation on my wife I believe I may have found a cure for C. difficile. I'm contacting you because you published a series of articles in the Hamilton Spectator and I thought you might be interested. I'll try to be brief...

I have been reporting her progress to an online forum for C. diff here, http://www.cdiffsupport.com/phpBB/viewtopic.php?t=5668 . The thread contains product and dose information...
==========================================

Here is Ms. Powell's sarcastic one line reply:

=========================================

From: Powell, Naomi
To: George Parry ; Walters, Joan ; Fragomeni, Carmela
Sent: Thursday, September 25, 2008 3:46 PM
Subject: RE: I seem to have cured my wife of C. diff. using EDTA

Experimentation on his WIFE???
=========================================

To which I responded:

=========================================
From: George Parry [mailto:georgeparry@**********.com]
Sent: Thursday, September 25, 2008 4:11 PM
To: Powell, Naomi; Walters, Joan; Fragomeni, Carmela
Subject: Re: I seem to have cured my wife of C. diff. using EDTA

Miss Powell,

I had been taking the EDTA myself for several months. It's sold in the US as a supplement to reduce arterial plaque. When I found a 1969 study from Yugoslavia showing that EDTA neutralized the gangrene toxin from Clostridium difficile I decided to try it against C. diff., since the bacteria are related. It seems to have worked.

That being said, I have taken great offense at the tone of your response. I would have thought that, after the research you did into the disease, you would understand the heartache it causes to the sufferers and their loved ones. The 79 year old man in one of your articles wanted to die rather than live with C. diff. My wife is in a wheelchair due to myotonic muscular dystrophy. Can you imagine someone who can barely walk a few feet trying to get to the toilet in time? Have you ever witnessed anyone passing the vile diarrhea? Ten times or more per day? Can you imagine me carrying her to the toilet because she can't make it in time, and she doesn't make it anyway, and as I'm carrying her she's leaving a trail of foul feces across the room? Can you imagine me trying to clean it up so her elderly father and her brother, who is also disabled with muscular dystrophy, don't get it? Can you imagine my heartbreak when her father gets it anyway? My wife is the dearest thing to my heart, I praise the day God brought us together. She doesn't have many years left and none will be easier than they are now. I don't know, maybe it's just a job to you, but you don't seem to have picked up any compassion for the subjects of your articles. If this response is the best you can do then don't bother to write back to me again.
=============================================

To be fair to Ms. Powell, she did respond apologetically and asked for more details, which I provided. However, I have not heard from her since then.

God Bless,
--Hua Kul

[Nancy1]

Good job, Bobbie! Informative article. As you say, we need all the publicity we can get.

Hua Kul, good for you for contacting the writer of the article you mention. And good for you for not letting her get away with her nasty comment.

As everyone here knows too well, no one knows (and most don't care) about how much we suffer with cdiff. When I've told a very few folks about having D every 20 minutes night and day, they just seem to say hohum and change the subject. No one wants to hear about it, or think about how it might happen to them or someone they love.

[cindym]

I have had two reporters come out and interview me and even call me back to ask additional questions. Did anything become of it? HELL NO
Until the time the President or some other high ranking official or someone in the spotlight contracts this horrible disease we are most of the time talking to deaf ears when discussing this illness.

Anyone I talk to about it really wants all the gory details and then makes the statement they will definitely think about it before taking antibiotics again but yet they are unwilling to go the extra mile and report about it. Of course my meetings were long before all the media attention of cdiff that we are now beginning to see. I hope that reporter (two of them) has the guts to call me and want to do an up to date interview--------I can not say on this board what my reply will be!-------Perhaps (When donkeys fly!) If I am contacted then I will go to rival station and offer interview!
Am I getting disgusted or just old and tired? Ha!

[Bobbie]

The reporter Emailed me today, apologized, sent me the hyperlink for the article (I'd already found it last night), and said she'd dropped some hard copies in the mail.

If I hadn't gone to the ENT, I would never have known about this. Life is strange!!!!!

[trob25]

Since you are a writer, why don't you write some articles about "our disease?" God knows we need all the PR we can get.

I could write them, but they only place I could probably get it published (if at all) might be the local paper where I used to work. Would only get play in the two towns it covers. Over half the staff has quit or been fired since I left (newspapers are dying as you probably know) so I also only have 2 or 3 contacts left there. There is a chance I could get an editorial published rather than a freelance article, but it would have to pass by the new ownership also, which is all about making a happy go lucky paper that pleases everyone and offends no one as to bring in the most ad revenue.

In other words, it will be mighty tricky now that I am no longer a paid reporter. I think I might give it a shot via an editorial as that probably has a better shot, god news if the new publisher will let it run though.

[Suezer]

Great article, glad to see C Diff getting at least some exposure!

I have tried advising co workers who talk about being on this antibiotic or another, and I tell them"Look you really should try to eat some yogurt while you take those, I got seriously ill from taking an antibiotic. They can harm you in some cases..so be careful" and its like they immediately change the subject. I have almost given up..the other day a young girl who looked absolutely healthy had a big bottle of antibiotics she tossed in her purse and told the girl next to her that the Dr. told her it would be very rough on her stomache. I just bit my lip.

I wish I could call a meeting with all my co workers and give an informative speech to help them understand that what they dont know and dont do now can hurt them. I think the point is getting people out of their "It wont happen to me" bubble. When I tell people about my experience they listen as If I am explaining a trip I took to some foreign island that they will never visit..

I also spoke with a friend who is a reporter for a magazine, he said he was going on a new assignment but thought a C Diff story would be great. He said I might hear from someone who may want to talk to me about it. That was back in January, so I doubt I will hear anything.

Bobbie I think its great you were part of that article.

Normally it seems people dont pay attention unless it is something on the news each day like Swine flu, or a mass epidemic . I mean "SWINE FLU" headlines..people are buying masks and freaking out.
Maybe if C Diff got that kind of press people would really start to think twice before resorting to antibiotics for every sniffle /ache..for starters.

There has got to be some way for us to achieve better awareness.
Articles like the one in this thread are a great start!

I think we should all get signed copies by the way ;)

[carrie]

I seem to get lots of questions at my work, especially because I was such an athletic and healthy food consumer. Now whenever someone at work has to take an antibiotic or their kids they always come to ask me what I think but the fact is millions of people take antibiotics every day without consequences what I suggest is to wait to find out if antibiotics even treat the problem also I suggest using really good hygenine and adding some probiotics. Last week we received a new resident who had just finished her cdiff meds the phyiotherapist even asked my opinion whether we should use a disposible sling to transfer her or a shared one. They agreed to use disposible slings for a month to see if there is any reoccurance. Also they just did a major clean with virorex(sp?)(kills cdiff) when a second patient contracted cdiff. I was amazed how many cleaning staff our housekeeping manager put in place for temporary cleaning. I guess they just realized if knocked me down this long it could happen to them also and that has really helped them take extra precautions which I'm very thankful for.

[Bobbie]

Suezer & Carrie,
Those of you who can make a difference at work, please do so. Sounds as though you've done a lot of education re. C. diff.

Trob, do "give it a shot." Any PR is worth none at all. What about one of the local health magazines. This is what the article that mentioned me is. Frankly, I was reluctant at first to give my name, but then thought, "Well, I might as well be famous for something."

When my son first had C. diff. in l979, no one (including most docs.) knew about it. We've come a long way - but not far enough.

About three years ago, I gave a report to a committee hearing of the KS legislature to have C diff. included as a reportable disease. I spent days writing the report -- even contacted the CDC. Basically, the committee "blew me off" -- told me I should talk to groups like the AMA. Right, like they would listen to a lay person.

Emphasize everything about C.diff. except the "yuck" factor. Maybe one day, the infection will get the continuing press that MRSA does.

[diane]

Nice job Bobbie!!! Glad to see you got someone to write something.

[jenkelly15]

That's such exciting news Bobbie. You deserve it after all the hard work you put into this website for c-diff support. Anytime I hear anything about c-diff being brought up publicly. I get so excited because the more publicity maybe they will figure something out that will be more effective the first time around. That way the mental stress won't be so horrible for c-diff victims. Congrats again Bobbie.

[Bobbie]

Thx. everyone. For years, many of us have tried to make C. diff. better known with little luck. The reporter was going to send me a hard copy of the article. I am still waiting. Perhaps it is coming by pony express. I'm going to contact the editor of the magazine.

I was at a party the other night. Everyone there was talking about cases of MRSA at the children's hospital. One woman did say she had a friend who might have C. diff. Everyone else looked a little blank, but when I mentioned I had it years ago, they "sort of" remembered although I didn't tell many much about it at the time.

Many stats. have indicated cases of C. diff. are now more numerous than MRSA, but still we are "the ugly step mother." As Allison said once, "We don't get no respect."

Even the article I was mentioned in says, "Healthy people rarely contract C. difficle." Not so, as many of us know. I was very healthy (except for allergies & sinus problems) when I first had C. diff. in l993. Now that I am "elderly," take Macrobid for one chronic problem and a PPI for another, I am at high risk for another episode of C. diff. I try not to think about it, my other health issues, and other personal problems. I exercise constantly & am in good shape for my age or those younger than I am. I'm very active but don't sleep well at night. Gee, could it be stress? Frankly, I wish I'd never heard of C. diff.