I'm Still Offline To Rest But I Wanted To Send You A Great Link To A Fellow Blogger Who Wrote About The Exploitation Of Endometriosis Patients

As I mentioned in my previous blog post, Saturday, January 31, 2009 "Jeanne's Endo Blog" Is Offline Indefinitely (Starting Now)..., I need to slow down on blogging for awhile and get some rest!!

For now, I wanted to post a brief update about my health situation.

While I'm online, I also wanted to give readers a link to a great blog post written by Melissa Ralston regarding the topic of exploitation of patients. This is a hot topic because there are so very many scammers going after chronically ill patients and health bloggers. Melissa's post talks about this troubling situation regarding endometriosis scammers.

Sadly, while I have been trying to rest up, the scammers are as busy as ever. One of them posted anonymously to my blog with comments that I have no intention of publishing!! These comments mentioned fibromyalgia and endometriosis.

All chronically ill patients and all health bloggers are potentially vulnerable to scammers who exploit patients and bloggers.

The comments posted to my last blog post were regarding a "treatment center" that I will not name. I'll just call it "treatment center" in place of its name because I'm not going to promote it by even typing its name on my blog. In other words, I won't even type the name of it to complain about it.

This commenter started by telling me (the capital letters below were theirs):

"BE SURE TO RESEARCH AND GET THE FACTS STRAIGHT"

The tone of the comment posted to my blog was essentially that I need to do my research and not be one of the ones who is stealing people's hope from them by steering them away from this "treatment center" that they were raving about.

So the implication here is that if I don't publish their anonymous comment singing the praises of this "treatment center", then I'm going to join the rest of the people who they claim are stealing people's hope by discouraging them from seeking treatment at this "center" making such outrageous claims.

I would like to go on record as saying that I don't advise people on where to get treatment for any of their illnesses. I have never advised patients where they should or shouldn't go for treatment for any conditions.

This commenter's remarks were written as if I need to "do my research" and proceed to publish their comment raving about this "treatment center"... or risk being responsible for people losing hope and committing suicide! (Read on to see their troubling comment about suicide).

Again, these inflammatory comments were posted in reply to my previous blog post about being very sick!

Here is another snippet from the anonymous commenter to me:

"If you are too sick or too weak, (I hope and wish you well) Perhaps you can ask a close friend or family to help you with this."
-- Anonymous blog commenter

Did they read my last blog post that said my husband was helping me out by moderating comments while I was sick and think that maybe he'd just blindly post their comment? This commenter went on to advise me to follow his/her directions and check out this "center". Read what he/she said:

The doctor's at the ["center"] are saving lives. Don't let the others steal your hope. Many are truly well and this could be you too.

It saddens and angers me that there are companies and individuals out there exploiting patients and promising unrealistic treatment results for chronic illnesses such as fibromyalgia and endometriosis.

The person or center that posted to my blog on February 6th had the gall to try to turn people who have spoken out against these scammers into the "bad guys" by suggesting that these brave people (who have spoken out against those who exploit patients) are responsible for patients committing suicide!

Here are 2 more phrases from the anonymous comment I will not be posting:

The comment posted anonymously to my blog on February 6 that was in support of a "treatment center" went on to claim:

"people come in wheelchairs and leave walking and dancing"

This same anonymous comment stated:

"lies are being spread and people are committing suicide because of lost hope"

This last portion of the anonymous comment appalled me. This commenter basically insinuates that anyone who speaks out against this "center" is somehow responsible for people committing suicide! (To be clear... the "people are committing suicide" comment does not refer to any specfic people. This statement is just haphazardly thrown out there by this commenter to my blog).

I want to be clear that I know of no one committing suicide or thinking of committing suicide. This inflammatory remark by the commenter is part of the twisted effort to promote this "treatment center".

I've seen a lot of scams regarding chronic illnesses since I began blogging last June but this is especially upsetting. This anonymous commenter is using the word suicide in an effort to get people to seek treatment at this "center"??!!?? This is totally outrageous!

If you are confused, trust me, you would still be confused if you read the entire comment posted to my blog.

For those who did not have the benefit of reading the entire comment, let me just put things in context and say that I am aware that many patients have reported this "treatment center" to authorities and that the Attorney General of the state which hosts this "center" has apparently done some investigation into this place of business. I do not know the current status of the "center" legally. I just know that many patients have complained about it.

Having read the entire anonymous comment posted to my blog and having concluded that there is no way I will post it to my blog... even to rip it apart, let me just say that this commenter would have me and my readers believe that there are people who are keeping patients from obtaining treatment at this "center" and that these patients' lives are being put at risk (of suicide) by those who are speaking out against the center!!

I know this is confusing because I'm quoting snippets of the anonymous comment. I apologize for the confusion but there is no way I would feel comfortable publishing the comment. So bear with me.

The bottom line is that I do not know how some people sleep at night!

It is bad enough when scammers try to fleece people out of their money by scamming them with "treatments" that are talked about as virtual cures. That is shameful enough! But to go around posting comments on people's blogs about suicides? It is beyond the pale. For someone to try to use my blog to get people to seek treatment at this "center" by implying that suicides are happening due to people being stopped from seeking treatment at this "center" is just mind-boggling to me.

The bottom line is that this very inappropriate comment was posted to my blog, I will not publish it, and I am sharing this story with all of you so that you can be on the lookout. If any person or "treatment center" approaches you or your blog with wild claims about leaving your wheelchair to go dancing, please be aware that some people will say anything to make money.

I can't tell you how upset I was about this comment to my blog. In my experience, anytime a scammer like this approaches me, he/she usually approaches my fellow bloggers as well. So please be aware that there are some very unscrupulous people out there!

MY UPDATE:

I am not sure when I'll be able to get back into the swing of things but I am still very exhausted and I still need more time. I'm still not going to be communicating via the many methods I usually do.

As some of you are already aware, last Friday night I had an adverse (allergic) reaction to a medication that I was taking and the on call doctor last weekend told me to go to the emergency room. The drug reaction was potentially fatal and last weekend was scary... but I made it until Monday morning when I talked to my regular doctor and we figured out what I should take in place of the drug I reacted to. Thank goodness for Benedryl! My doctor called in a prescription to replace the one I had discontinued and my body is getting acclimated to that.

I have been overdoing things, to say the least, for some time now and this wakeup call has forced me to step back, slow down, and recognize the importance of rest. Too many insomnia-induced all-nighters culminated in a very unpleasant weekend last weekend. While a drug allergy is what finally forced me to slow down, my body is unhappy with me for other reasons. I have not been getting enough rest and my body told me so this past few days in ways that could not be ignored.

For example, my body let me know it was ticked when I slept until 2:00 pm one day this week. (The only reason I even woke up then was that I had asked my husband to call at 2:00 to make sure I had woken up. As it turns out, I had not)!

In any event, it's going to be a bit before I'm back to blogging very much. I still have comments from a couple of weeks ago that are not yet moderated or replied to. The only comments that have been posted were to my last post before this one.

MELISSA'S ARTICLE:

I would like to ask readers to check out a very important article on Melissa Ralston's blog... Endometriosis: Facing the Battle Head-On. The article is called "The Exploitation of Illness". It's a topic near & dear to my heart because I have seen many heartbreaking examples of patients being exploited by fake doctors, people promising "false cures", and any number of other scammers who try to make money off of patients (in this case endometriosis patients but all chronically ill patients are vulnerable to these attacks).

In fact, I was troubled to find an upsetting blog comment dated 2/6 from one of these "exploiters" posted right to my previous blog post about me being sick! (There are times I just adore being able to click on the reject button). Apparently me being sick enough to drop blogging for a bit made me look vulnerable/an easier target for them. Incredible!

I had already planned on blogging this post directing readers to Melissa's article (above) before I received email today from an exploiter who posted comments to my blog that really disturbed me. While I was hoping for a bit more resting time before writing this post, I felt compelled to get this posted in light of the fact that a scammer had the gall to post a scam comment in response to my last post. Since I was planning to direct readers to Melissa's article anyway and since I do not have the energy to write my own detailed post about the many scammers I have encountered (be they endo scammers, fibromyalgia scammers, or scammers about some other chronic illness), I decided the best way to respond to the ludicrous comment that I rejected in response to my last post would be to direct readers here to Melissa's great post which references a great article by Hans Evers of the World Endometriosis Society.

Again, endometriosis is just one chronic illness that can make patients vulnerable to scam artists. Anyone with a chronic illness should stay skeptical, ask questions, and generally be on guard against scammers who prey on the sick.

Finally, here is a quote from within one of the sources for the article Melissa Ralston included in her blog post. I will close with this quote because it highlights the point I am trying to make... and to give credit where credit is due to Hans Evers, who took the time and energy to write about the topic of people who prey on endometriosis patients. Whether it's endo, fibro, or some other chronic illness... it is important for patients to be educated about the risks out there for people preying on them because they are chronically ill which can make them "easy prey".

"Women with endometriosis belong to a very vulnerable group, they should not be exploited".

Professor Hans Evers, World Endometriosis Society President

I would like to thank everyone who has left me words of encouragement and comfort this past week. I appreciate your support more than you know. Please keep being patient with me because I'm still on the road to recovery and need to take my time getting back into the swing of things.

Thank you to everyone for your patience! I am going to try to catch up the best I can but it's going to take some time. I have been pushing things too hard and I really need to pace myself better. My body has been screaming at me this week. I'm listening to its message. So I'll do my best to catch up without making myself sicker in the process.

P.S. I recently won several blog giveaway prizes and have not yet posted my thanks for them. I'm behind on everything. Stay tuned in a future post to hear about the great prizes that I won. I apologize for getting behind on posting these. Also, I'm sorry to Amanda for not yet posting the award she kindly gave me awhile back. I am really behind on everything but I haven't forgotten!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

No More Abscess. Tooth Extraction Itself Went Well. Going To Go Rest Now. (UPDATED: My Nitrous Nightmares)...

I am very grateful my abscessed tooth was successfully extracted this morning.

The nitrous oxide had no effect on me whatsoever. Zero. The first batch of Novocaine didn't quite do the trick. The 2nd round of Novocaine helped. It went quickly and I'm glad it's behind me.

I'm going to go and lie down to read a book! I hope everyone is getting some rest with the holidays!

Take care! :)

P.S. If you are looking for something more to read, check out my holiday posts preceding this (including comment sections). We had an interesting power outage on Christmas Eve! :)

UPDATED at 5:46 pm:

I just woke up from about a 2.5 hour nap. When I tried to read, I got sleepy and decided to put the book down for a minute to rest my eyes. That is the last thing I remember. I woke up having had numerous, vivid, frightening nightmares.

Just some background... I have sleep apnea and fibromyalgia. I never get good quality sleep. When I had my sleep study to diagnose the obstructive sleep apnea, they said I got ZERO of the "restorative sleep" phase!

I haven't used the CPAP machine lately (used to treat sleep apnea) because it's impossible to use my machine when I have a bad runny nose (which I have had).

By the way, the oral surgeon confirmed my suspicion that the abscessed tooth and sinus problems/other symptoms I have been having could definitely be related.

I'm grateful my "regular dentist" put me on antibiotics a few days back for the tooth infection.

Anyway, I haven't had a "good night's sleep" in... well, in my whole life actually. Even as a kid, I never got proper sleep. I've spent my life needing people to wake me up. Sometimes a ringing phone works. Alarm clocks barely ever work (even the loudest ones they make).

When I lived alone after college, I had FIVE alarm clocks and still had a hard time getting awake on time to get ready for work.

I hardly ever, ever dream or have nightmares. Today I had several scary nightmares.

With my fibromyalgia, I don't get high-quality sleep either.

The fibro and sleep apnea were only diagnosed in the last few years but my trouble getting good sleep goes way back.

Anyway, nitrous oxide (aka laughing gas) was no laughing matter for me!!

It gave me zero effects during the dental appointment (see above). There was nothing positive or negative. The air entering my nostrils just seemed like when regular air gets pumped into them during CPAP at night to treat my sleep apnea. I would have sworn they accidentally gave me plain oxygen... before waking up from that awful nap.

They gave me nitrous oxide alright! I just searched the Internet. While it appears to be a less common side effect of nitrous oxide, I am not the only dental patient to have had nightmares after nitrous oxide. (I would include links about nitrous oxide but I didn't even finish reading the links myself yet... I just did some speed-reading, saw that others have had nightmares from it and started this post).

Anyway, the way nitrous oxide was described to me by multiple sources beforehand (including the dental assistants today) was that "people love the feeling", "it's relaxing", "it takes the edge off", etc.

With nitrous oxide (at least in my case) you do stay awake during the procedure but it is supposed to make it easier for certain patients than just having Novocaine alone.

I am NOT one of those certain patients!! These nightmares were really bad. I am so glad to be awake. I'm so glad they were just nightmares and not really happening. (One example of a nightmare I had was a scene that was similar to but far, far scarier than a very, very graphic Grey's Anatomy episode where everyone is standing around in scrubs and then bad things happen).

Let's just say I am not one to be phased too much by the sight of blood but this nightmare was more than I could take without getting really upset before waking up suddenly.

I never want to go through that again!

As I said, most people who have nitrous oxide (apparently) find it helpful and pleasant. I had no reaction at all when I needed it and the nightmares afterwards (just now) were just plain awful.

While my reaction may not be super-common, it does happen or I wouldn't have gotten the Google hits I did from pharmocology articles.

Let's just say that I couldn't leave this post as initially written and felt compelled to write this update. Many endo patients I have met are more sensitive than most to various chemicals. Many other chronically ill patients are extra-sensitive too. Clearly I am one of those sensitive individuals.

I'll take low-quality sleep with no dreams and no nightmares over what I just experienced any day.

Please pray that when I go to sleep tonight this will not happen again.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: Still Away From Endometriosis Blog But Hope To Be Back Soon!

I hope to be back very soon to write a proper post. I welcome your continued comments and will moderate the already-existing comments soon!!

Whether you are a regular reader of this blog or a first-time visitor, please feel free to look through previous postings and keep up the insightful comments!!

There is a fair amount of information in them and you are welcome to comment on any of the articles, regardless of when they were posted. I welcome your feedback!!!

The recent "listening to your body" post seems to have "struck a nerve" with many of you! I'm thrilled to see the number of responses that post has gotten because I truly believe it's a very important topic.

Readers have made some thought-provoking comments there and I would encourage readers to take a peek there if they haven't already.

Just look at the post: Wednesday, July 30, 2008 Endo Blog: Importance Of Listening To Your Body!!

Well... I'm afraid I need to run but have a great weekend! Here's wishing you a flare-free/pain-free day with your endometriosis or other chronic illness! :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: The Value Of A **REAL** DAY OFF!!

Endometriosis blog entry for 7/31/08:
"OUT OF OFFICE NOTICE"...

Yesterday I didn't "practice what I preached". I meant to rest but instead I didn't. What I saved in blog-writing time, I made up for in blog-related emails and long replies to yesterday's comments.

Therefore, I am going to take a true day off from blogging today: no posting entries, no replying to comments, no networking with fellow bloggers, no installing tools on the blog, no checking blog traffic.

This will be the first 100% ***REAL*** DAY OFF since I began blogging on June 1, 2008!

After that we have relatives coming into town and I will be pretty busy. So if you post any comments and don't get an immediate response, you'll know why. I'll do my best to catch up on answering comments when I return but they will remain in moderation until I resume blogging.

So we'll call this my "out of office" message for at least a day.

I hope you'll keep those comments coming in while I'm away and that you'll stay with me/check back soon on my endometriosis & chronic illness blog!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.