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6/28/2008

Deirdre's Brilliant Comment Has Resulted (Unknowingly) Into a Full-Blown Endometriosis Post!

Hi all!

An enlightened reader of our new endo blog wrote an inspired AND inspiring comment to my June 26 post "Endometriosis Patients Get Their Fair Share of Stress!"!!!

It was so inspiring to me that I was sure I'd run out of character space in the comments section. Soooo, my response to Deirdre's remarks is below. To read her short but very inspiring feedback/comment, see the the June 26th archive file for "Endometriosis Patients Get Their Fair Share of Stress!". Here is my response to Deirdre's post to the 6/26/08 article I posted. This is from 6/28/08 and is doubling as a fresh post by me for today:

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Hi Deirdre!

I’m glad you found us! Welcome to the new blog. :)

Thank you for mentioning the Center for Endometriosis Care located in Atlanta, Georgia. I do now remember seeing their website a few years back when I was very heavily into researching endometriosis on the Internet! I will have to pull up their site and refresh my memory! I do remember they had a helpful library section that I haven’t visited recently. I will definitely have to “take another look” at their site, now that you have reminded me about them! Maybe the library area I’m remembering and the educational articles you talked of are in the same part of the website? I can’t remember but I will definitely check it out. Thanks for the great idea for another helpful link! (If you page through my archives, you’ll find one of my earliest posts on this blog had a number of web links). This one wasn’t one of them; I had forgotten all about it. I’m glad you jogged my memory!

Yes, I have known about the OBGYN.com site for awhile.

See the link to it:

http://www.obgyn.net/.

You know some great resources)! :)

The 'http://forums.obgyn.net/endo/' section, in particular, focuses on ‘endometriosis in general’:

http://forums.obgyn.net/endo/.

As you mentioned, there is a cool forum available within that endo section. I remember posting back & forth on the OBGYN.net message boards years ago. I’m pretty sure that site is where I had gone through a phase of reading/posting tons of stuff on OBGYN.net (using the endometriosis message boards) over 10 years ago. (I remember the timeframe because I just celebrated my 10 year wedding anniversary and it was before that when I used to spend lots of Internet time searching for endo data).

Thanks for mentioning this too! I actually just pulled up the main starting page for www.obgyn.net and if you click on “select a topic” in the top right corner, a pull down menu appears.

In the http://www.obgyn.net/ pull down menu if you click on Endometriosis Zone, it will route you to ANOTHER cool website:

http://www.endometriosiszone.org/.

It's a neat site too.

Thank you for mentioning OBGYN.net!

I just stopped this mid-post to check my archives section… I wasn’t sure if I had listed OBGYN.net in early June (as intended) or not. I did not list www.obgyn.net in my June 2, 2008 article on endometriosis links: "Endometriosis and Endo-related Links You May Want to Check Out" but now our blog readers will know about it anyway thanks to you, Deirdre!

Thank you again for reminding me of how much awesome info is available over the Internet. When I was diagnosed in 1992, I didn’t even own a PC yet and if there was decent endo info available then by Internet (???) I’m sorry to say I sure wasn’t reading it!

I had gone to my local library in 1992 and they had NOTHING on endo. Not a word. The librarian even looked for me. No luck. (It was a very good library normally too). Times have changed.

It was in Barnes & Noble in the self-help book section that I found a listing in the very back of a women’s health book for the Endometriosis Association phone number: (1-414-355-2200). They now also have a website http at:

http://www.endometriosisassn.org/


This led me finding a local Endometriosis Association support group near me (the endo support group active in my area at that time). I was quite shy then (hard to believe, I know!!!) and quite nervous about calling a stranger to inquire about the endometriosis support group BUT I did it! (THANK GOODNESS)!!! My need and desire for support,help, and info overcame my fear of calling a stranger about my "endo story" and asking about the the endometriosis support group.

Through the local EA support group I was introduced to real live human beings besides me who had endo! IT WAS SO AWESOME TO TALK WITH PEOPLE WHO REALLY “GOT IT” !!!!!! It was absolutely refreshing and a huge relief to make that connection with others!!

IMAGINE: An entire room with women who had also been suffering in silence, like I did, UNTIL they reached out and found some of their fellow endo patients somehow! Our meetings didn’t have very many women but had PLENTY for effectively sharing engrossing “endo stories”!!!) I’ve learned that a support group of 2 can accomplish as much as one with 20. (I’ve been to meetings of both sizes). my friend Cathy taught me that "2 people makes a support group". She was right! I began my endo support group in August 2001 this is so very true!

As long as exchange of information is happening, it is ALWAYS worthwhile to network with fellow patients (of any illness) any way one can do so: in person is awesome if you can get it, phone works well too, email is outstanding, message boards & forums are super… Books are certainly a wonderful source too. No one loves books more than I do.

The thing is that when you interact with another patient BACK & FORTH and truly EXCHANGE ideas & info… it is a whole new level of support than simply reading a book without also having that more tangible connection. Comparing notes on doctors, treatments, success stories, losses, etc. really HELPS so many! I have learned SOOOOOOOOOO much about alternative medicine from my support group members that it's not even funny.

The beauty of blogging and giving feedback posts on endo blogs is that we can have an exchange while you are in the comfort of your own home even when you’d be too sick to find/make it to a support group meeting. I’m not saying anything can replace a support group meeting. However, blogging is increasingly becoming an important tool for reaching out to others for various reasons… including endo blogs.

It was in either 1992 or possibly 1993 (?) that I found my first endo support group. (I was diagnosed in 1992 after 10 years of not knowing WHAT I had)! For me… the rest is history! I started “surfing the Net” in 1995 and have been hooked since. I am really grateful to Endometriosis Association for the springboard of info I got from that organization in 1992.

So, again, thank you for reminding me about www.OBGYN.net because it is a well-known/reputable site in the endo community.

There are many endo patients who experience both endo and migraines. Many women in my current and past endo support groups have trouble with migraines. While I have no personal experience with migraines, I know from others that hormones can definitely be connected with migraines!

I have acupuncture treatments done regularly. While I personally have had acupuncture done for other medical reasons than migraines, I personally still do hand out “Traditional Chinese Medicine for Migraine” brochures (that I obtain from my acupuncturist’s waiting room area, with his permission, in short stacks at a time for giving to my endo support group). I’m not sure who the author/maker (?) of that brochure is and I can’t check now because I ran out of them. (I try not to completely ‘clean out’ my acupuncturists' waiting room brochures of ALL its brochures. So I do run out of brochures sometimes between our monthly endo meetings. Although it can be tempting at times to "hog them" because I take good care of my endo support group)! Ha ha.

Seriously, though, it may be a brochure affiliated with a product (Chinese herbs) or may not... I recall it being a brochure that was not specific to my acupuncturist’s office but was specific to migraines. I believe it was called “Traditional Chinese Medicine for Migraine”. If I remember to get more the next time I’m in I will try to remember to post the author/company that made the brochure but acupuncturists do treat migraines as a general rule of thumb. I distribute the brochures to my support group members at meetings since so many women have both endo and migraines!!

For women with endo (or anyone with migraines), acupuncture is certainly worth investigating! Please see my June 4, 2008 post Alternative Medicine Is Amazing! AND various YouTube acupuncture video clips (available right here on this blog!) if you (or anyone you know) is interested in learning about acupuncture. ACUPUNCTURE DOESN’T HURT! I CAN ATTEST TO THAT PERSONALLY! I even know of children who will attest to that. I delayed trying acupuncture for years over a fear of needles and now I wish I had tried it much sooner!

My licensed acupuncturist uses very thin Japanese-style needles. They DO NOT hurt and I am extremely sensitive (skin sensitivity and internally) compared to just about anyone I know. If I can do acupuncture with no problem whatsoever, I doubt if anyone out there would find it painful. I find it extremely relaxing. It even puts me to sleep sometimes!!! Acupuncture is MORE RELAXING THAN SLEEP to me. (I have sleep apnea and fibromyalgia and I really mean that quite literally!) I do not get restful sleep (except at acupuncture).

The YouTube clips cycle through on acupuncture, alternative medicine, endo, pelvic pain, infertility, laparoscopy, etc. The cycling of the clips is done by YouTube so you may have to be patient for the acupuncture clips to appear but when it is their turn to pop up, they will do so.

To view endometriosis-related YouTube video clips (including those on acupuncture) just see the “Pink Arrows to Open Slideshow. Random Videos will Cycle Through. Not responsible for content!” section in the right sidebar of my blog. If you look in the right (light pink background, medium pink text) sidebar, you’ll see what I mean. HINT: The videos occasionally collapse between cycles/groups of various topics. This is normal and when the videos are loaded they will re-appear on your monitor automatically. You don’t actually 'click' on the arrows as I originally thought to open the slideshow (I thought that clicking helped when I first created this blog but I’ve discovered that YouTube controls that part in their programming code for the slides).

Last but not least… I appreciate you sending the site of Dr. John R. Lee:

http://johnleemd.com/.

I had not heard of it before now and I did not yet have time to read through it BUT I did a quick peek at it -- just long enough to see that it looks interesting (and in line with the notion of alternative medicine options... i.e. things OTHER THAN just “drugs and surgery only" for treating endometriosis patients.

I am not a medical professional. I ask all readers of this blog to refer to the disclaimer at the very top of my homepage for this blog for more info on this.

Sorry about that interruption, Deirdre. Whenever I mention a site for a specific medical professional or treatment option I do my best to make it clear so my endo blog readers know that I don’t have personal experience with or knowledge of the person/treatment, etc. (in this case, I guess that would be Dr. Lee’s teachings, site, or any endorsed products)... I will look at his site about natural hormone balance, natural HRT, and bio-identical hormones. I will also ask my local endo group support group co-leader if she is familiar with Dr. Lee. (My endo group co-leader is a great resource for “natural hormone replacement therapy/HRT” vs. “traditional HRT” vs. “no HRT” at all and I’m sure she’ll find the site interesting too.

Finally, Deirdre… I would like to extend my sincere thanks to you… for stopping by and providing a number of interesting links and pieces of information! You gave me so much “fuel” with your brief comments that I am devoting this post to what we’ve discussed!!! Your references have inspired me to create this new post that will refer readers to that somewhat older related post on our 27-day-old blog. :)

Oops. I just realized this probably won’t fit into the comment board. I may very well make this the actual "Deirdre post" post itself!!!

THANK YOU SO MUCH for an outstanding comment/feedback post/actual post!! I most certainly hope that you re-visit our new blog SOON (and often!)… You are clearly very well-informed about resources (and on everything from websites & links… to hormones… to “migraines and how they are connected to endo patients”!)

You made my day with your posted comment! You have no idea how much I have enjoyed replying to your comment. Also, as I said… your comment has inspired me to make a (this?) brand new post and the posts will reference each other for even more to see/stumble upon in this vast world we call the Internet. We’ll catch more readers by posting in TWO spots on such important topics/links than just ONE!

THANKS, Deirdre!!! Enjoy the remainder of your weekend! :) (I need to learn how to program smiley faces the "right way" in these comment boxes. I use them a great deal)!

Deirdre's initial comments (before mine above) are also listed below in response to the article that I posted called "Endometriosis Patients Get Their Fair Share of Stress..."

Thanks again,

Jeanne

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From: deirdre [mailto:noreply-comment@blogger.com]
Sent: Saturday, June 28, 2008 4:47 PM
To: endendo@frontiernet.net
Subject: [Jeanne's Endo Blog] New comment on Endometriosis Patients Get Their Fair Share of Str....

deirdre has left a new comment on your post "Endometriosis Patients Get Their Fair Share of Str...":

For any women with endo who find your site, this is an amazing place - the Center for Endometriosis Care in Atlanta

centerforendo.com, also look under ''educational articles''

and a chat board

http://forums.obgyn.net/endo/ENDO.0806/date.html

also, the pill and other things can lead to low progesterone, which can cause migraines

check out johnleemd.com

Publish this comment.

Reject this comment.

Moderate comments for this blog.

Posted by deirdre to Jeanne's Endo Blog at June 28, 2008 4:46 PM
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

14 comments:

deirdre said...

Thank you sweetie, I haven't had a chance to read this whole post yet. It's so early in the AM! Endo broke my heart a long time ago. Endo is and has been a disease of loneliness, pain, sadness, so many questions, heartbreak, solitude, yet strenth, persistence, fortitude. I would have done anything to get away from the pain. When I was young, we had no strong drugs available to us to help. The worst part years ago is that I had been told so many times that there was no help for endo, and I didn't even know if I had it!!!! So while I used the computer for so many things, I just didn't search for endo help for years....I had surgery at the CEC recently and they are wonderful. They are the dream I never thought existed. I look forward to seeing how much pain relief I will have in the future (because we believe I have adeno), but just to have someone GET IT!!! So many doctors don't.

This is the educational library, the site changed a bit recently.

http://centerforendo.com/cecarticles.htm

I sometimes can't believe I am alive, because the endo pain made me want to die. LIKE EVERY MONTH.

I just got this book, below, and plan to read it this week. It's very short, and I encourage others to read it if they can.

God bless, I'll come back to read your post later.

http://search.barnesandnoble.com/Endometriosis/Angela-Hankins-Sachs/e/9781413731651/?itm=17

''Endometriosis: Lighting the Path
by Angela Hankins Sachs''

Even just having had surgery recently, I am sitting here searching for hair / body products that don't have certain chemicals in them. I am going to work so hard to relieve any adeno pain I might have.

deirdre said...

OK, I read your post, thank you so much for all the kind things you said :)

This is the chat board for the Endometriosis Research Center. You do have to register and provide a little info about yourself.

http://erc.activeboard.com/

Oh, I have a TON of helpful info!

You may know about this, but it helps fibromyalgia

http://endfatigue.com/

I take d-ribose for fibro, have you heard of it? it's a supplement, nothing scary.

http://www.fibromyalgiasupport.com/Fibromyalgia.cfm/id/7565

http://www.co-cure.org/Good-Doc.htm

http://www.corvalen.com/testimonials.php

I love acupuncture...

Something else to look into is yeast problems, many endo women have them

yeastconnection.com

drpodell.org

Oh, and have you heard of pycnogenel? Google that one and endometriosis, and you'll find many studies showing some relief of pain for women...

Thank you for your post, it made my day.

Anonymous said...

I misspelled the supplement, it's
pycnogenol

ALSO, some women get a little help with a PCOS-like diet


http://www.ovarian-cysts-pcos.com/

(it's deirdre, did this go through?)

Jeanne said...

Deirdre,

Welcome back! It was so nice to hear from you too “sweetie”… and so soon! :) Yes, it’s early in the am for me too. I have been having major disruption in my sleep schedule (lack of sleep)! Last night I got a whopping 3 hours and 20 minutes. It’s terrible.

Anyway, I am familiar with the “endometriosis heartbreak” you referred to. Endo broke my heart when I was 13. So I “get” what you’re saying.

The loneliness associated with being misunderstood (or even mocked) by “non-endo patients” is very common amongst my support group members (at least during some portion of their lives.

The pain sort of speaks for itself (for anyone who has ever experienced chronic and/or excruciating pain).

For example, for some endo patients, it doesn’t affect their career and perhaps has a minimal effect on their relationships (i.e. with a significant other).

For other endo patients, the pain is debilitating 365 days/year.

The rest of the endo patients fall somewhere in between on the spectrum.

All endo patients suffer to some degree (pain, infertility, sometimes both, and plenty of other symptom possibilities).

Since endo is diagnosed by surgery (laparoscopy), generally a woman is either having significant pain, infertility and/or other bad symptoms that initiate having a laparoscopic surgery to investigate (and remove the endo if it does exist).

Sadness is an emotion I’m sure every endo patient feels at some point. Some more than others. This is very common, though. Sadness can be over the loss of the ability to participate in social, work, or home activities due to the illness. Sadness can result from isolation and/or depression all too common with a chronic illness like endometriosis. Sadness can come from broken relationships, faltering careers, and inability to socialize like others one’s age.

Questions. Questions. Questions. YES!! My, yes... the questions. With endo, even MDs admit it is a “puzzling illness” to them. So where does that leave the endo patient who has not had the benefit of medical school? There are always lots of questions.

The good news is there ARE lots of answers. Not a cure. I’m talking about answers for managing the illness and improving or maintaining one’s health is at all possible.

For me, this is the beauty of alternative medicine. It fills some of the gaps that Traditional Western Medicine (TWM) can’t address.

Heartbreak and solitude are certainly common for endo patients too.

However, as you astutely pointed out... endometriosis has benefits too!

I totally agree that strength, fortitude, and persistence are just a few of the positive qualities that endo can “bring out” in a patient!

I know endo has made me MUCH stronger, more outspoken (in what I hope is a good way!), has built my fortitude, and has most certainly trained me in “persistence boot camp”.

I have made many friends through my support group who “get it”! :)

I would have done just about anything (literally) for the pain at many, many times over the years too. Through the beauty of alternative medicine, I have learned that combining acupuncture, homeopathy, and other remedies with what my Traditional Western Medicine (TWM) docs can offer really matters!

I can no longer tolerate the side effects of narcotic pain relievers (dizziness to the point of falling down and crashing into the shower door was one clue).

The nausea, dizziness, and "buzz” of narcotic pain relievers became intolerable and, aside from surgery, alternative medicine at certain points has seemed to be the only thing to help me.

Many women are told even nowadays “there’s no help for endo”, “there’s nothing we can do for you”, or the real biggie: “you ‘need’ a hysterectomy”.

While there is no cure for endo, there ARE other options besides just “drugs and surgery” offered by the TWM practitioners.

The fact that endo can only be diagnosed through laparoscopic surgery certainly adds to the trouble of delayed diagnosis, misdiagnosis, and some doctors sometimes making very insensitive or inaccurate remarks.

It’s hard to research endo if you haven’t been diagnosed with it properly, huh? It makes me so sad when I hear this. I remember my 10 years of suffering prior to even getting diagnosed w/endo.

I’d love to hear about your experience at the CEC (that is the Atlanta place you mentioned, right??)

I have heard of people traveling across states to access care at endo centers such as the CEC. I have never spoken to anyone who has actually done it, though.

I can’t “advertise for them”, obviously.

However, I’d be happy to post a brief article about your experiences there if you wish. If you are interested in writing up a summary of your CEC experience, just shoot me an email at endendo@frontiernet.net.

I think it would be interesting to hear a first-hand account of the whole process of getting endo treatment at an endo center.

How long ago did you go to the CEC? So you did have surgery there?? What do you mean by “the dream you never thought existed”? I’d love to hear more about the CEC experience you had!!

Like with you, my docs think I have adneomyosis. My understanding is that with adenomyosis the endometrial tissue is not in just the lining of the uterus (normal) and is not just outside the uterus (endo).

With adenomyosis, the endometrial tissue invades inside the uterine wall. It’s like there is endo inside the walls of the uterus.

Heavy bleeding and a “large, boggy uterus” are telltale signs... from what my one doc told me. I have both signs. I have found homeopathy very helpful with managing the hemorrhaging. The large uterus can stay large in my case! I do NOT desire to have a hysterectomy.

Having your docs “GET IT” is huge!!!

I’ve included a hyperlink (or tried to) for the site you mentioned for the CEC's educational library and its recent changes

http://centerforendo.com/cecarticles.htm

I totally KNOW what it feels like to be sure death must be imminent (!) and to be amazed at simply living through and surviving unbearable pain!!! I have had endo for 26 years now. I “get it”. I know it is VERY hard. Hang in there!!!!!!!!!

There is no cure for endo. I would suggest not being pressured into a hysterectomy by anyone. (I’m not “anti-hysterectomy-for-all” but I am all for seeking alternatives to it if at all possible).

My group co-leader had a hysterectomy in desperation in her 30s and she then got much sicker. Now she is in her 50s and is still very, very ill.

There is no cure for endo. There ARE many ways to manage it, though. Hang in there! In exchanging ideas, we may find something you haven’t yet tried like Chi Nei Tsang or homeopathy perhaps?? Hang in there! (My group co-leader SWEARS BY the Chi Nei Tsang)!!!

I have problems every month too. Period time is the worst but ovulation time is also a problem. With long periods (7-10 days) and short cycles/frequent periods, that leaves very few “good days”. Those “good days” endo-wise are almost always “bad days” with other illnesses (i.e. fibromyalgia). So I do “get it”!

Keep me posted on your new book find that you mentioned: ''Endometriosis: Lighting the Path by Angela Hankins Sachs'' found at website:

http://search.barnesandnoble.com/Endometriosis/Angela-Hankins-Sachs/e/9781413731651/?itm=17

If you finish it and like it, let me know. Perhaps you can even submit a book review on it for our endo blog?!?! (See the book reviews I have written so far by browsing through my archives).

As far as finding certain health and beauty care products is concerned, I very HIGHLY recommend this website for “Environmental Working Group’s SKIN DEEP: Cosmetic Safety Database":

http://www.cosmeticsdatabase.com/index.php?nothanks=1

You can search for safer alternatives than what non-endo patients use. It’s great!!! It’s not just for endo patients! It is for anyone seeking safer health and beauty care/personal care products.

Do you have MCSS (multiple chemical sensitivity syndrome)? I do and it is TOUGH to deal with. (I’ll have to do a whole MCSS post sometime). I ask if you have it based on your comments about searching for appropriate products. Obviously I am not diagnosing anyone with anything!! :)

Parabens are in many soaps. They have estrogenic effects (which could be a problem)! Also, many allergy-prone people are allergic (like me) to formaldehyde and formaldehyde-releasing agents. This is a common allergen. Some names I look for on labels (things to avoid) are Quaternium 15 (a preservative in many shampoos, conditioners, and soaps & considered to be a formaldehyde-releasing agent and DMDM Hydantoin (a formaldehyde-releasing agent).

You are going to just LOVE LOVE LOVE the SKIN DEEP website! Check it out. It’s a huge database and you can search by product and get ingredient lists online! I love it!

I’m not sure what your docs told you about adenomyosis. My understanding is that the only definitive way to diagnose adenomyosis is to examine the uterine wall after the uterus has been removed (i.e. that means hysterectomy and autopsy are the only methods that can prove adenomyosis).

Since I have no plans to have a hyst, I rely mainly on my homeopathic stuff to help with the hemorrhaging. As far as the pain, I can get more frequent acupuncture if needed. Everyone is different but that’s how I approach it because I do not want a hyst.

Deirdre, I love your comment posts!!

Take care,

Jeanne

Yaya said...

Great post. So much useful info that I'll check into on a day I have more energy! I'm so glad you started the support group as well, or I'd be lost right now!

Jeanne said...

Deirdre & yaya,

I'll respond as soon as I am able.

Jeanne

Jeanne said...

Deirdre,

Oh my... I have worked (on & off, of course) on a response to your detailed post since you sent it... literally.

Unfortunately, BlogSpot simply couldn't handle my post and I got an error message after clicking on publish for the reply to you.

I strongly suspect I had used too many characters or something. In any event, the program died and I lost the preview/publish screen option and had to restart.

Fortunately, I do have a copy of my reply saved in MS Word (where I wrote it). So I will have to either break the response into parts or something but right now I'm heading out the door in a bit.

So for now, just know I haven't forgotten you and I'm working on it!

Jeanne

Jeanne said...

Yaya,

THANK YOU!

I know that the amount of info available on endo (and some related subjects) can be overwhelming.

When I was diagnosed with endo in 1992 I could barely find ANY INFO (!) and now it's almost like there is too much --- to the point of being potentially overwhelming.

Now one has to literally summon up the energy to sift through the mountains of info! SO I know what you mean!

I'm so glad you have found the local support group helpful. Our 7th anniversary for the support group will be in August 2008! If I had not found my local support group (different city then) back in 1992, I don't know where I would be!!! I don't know how I would have managed without networking with fellow patients. I really don't.

Alicia, you are smart as a whip and you wouldn't be lost. I'm just glad you have found the support group useful. I only wish more cities had support groups.

I am very happy with our 7 years as a successful & active support group. Many endo groups close --- usually due to low turnout at meetings. We may not get a whole slew of people at meetings but we're still running 6+ years later!

Anyone too sick to attend a support group or who does not have one in their community is always welcome to online info here on my blog! :)

Thank you, Alicia. You always have something nice to say on each & every post you make on this blog. I appreciate it!

This is exactly the kind of uplifting tone I want to set as we begin our 2nd month on this endometriosis blog!!!

Jeanne

Jeanne said...

Deirdre,

(1) I apologize for the delay in responding.

(2) I have been kind of going wild about a possible tumor I'm awaiting results on. I am sorry I couldn't answer sooner.

(3) Yes, your 3 notes all posted (even though this one didn't show up with your name like the other two). This one just came up anonymous.

(4) I've inadvertently answered comments posted a bit out of order because lovely readers like you gor a little ahead of me.

(5) I'm not complaining! Bring the comments on. You started a GREAT thread of comments here!!! :)

(6) I just didn't want you to feel badly if I don't respond as quickly as I would like to!

(7) I took a very quick peek at the website you sent (below). While I can't run ads on these comment boards, I see they offer a free newsletter on PCOS (polycystic ovarian syndrome).

Since some of our readers may find the PCOS link interesting, I'm including the website here. (This does not imply any endorsement/addvertisement).

http://www.ovarian-cysts-pcos.com/

(8) Also, I am familar with pycnogenol. I used to take it myself (I had tried both pine bark and grape seed types) but it got to the point where I could not afford it.

It comes in different brands. I just looked it up on the online encyclopedia Wikipedia searching with "pycnogenol wikipedia" and it gave this link:

http://en.wikipedia.org/wiki/Proanthocyanidin

That link may provide readers with more info on the medicinal uses of pycnogenol. (Readers: Please see my disclaimer at the top of my blog homepage).

Pycnogenol comes in various brand names as a nurtritional supplement (over the counter).

(9) Deirdre, please let me know if I have answered all of your questions on all of your posts! I may have lost track of one of the three when I responded. Please tell me if I did lose one because it may be just sitting in my PC's word processing program unpublished.

I'm sorry for any confusion there might be but I get mixed up sometimes due to my illnesses.

Did I post back to you about ALL of the websites you had mentioned?

Thanks for all of the great input!!

Have a great day!!!

Jeanne

Jeanne said...

Deirdre,

I think I just answered my own question to # 9 above. I think I "owe you a response" for the post that died (from too many characters for the BlogSpot program to handle mt comment back to yours). I will search my MS Word for it.

Thanks for your patience!

Jeanne

Jeanne said...

Deirdre,

I just double checked and yesterday (7/1/08) I posted to you at 11:46 am that my comment back to you had resulted in a computer error. I'm pretty sure it was a length issue (words).
Here is part ONE. Hopefully, this will send OK:

"Deirdre,

Wow! You gave me serious homework!! :) Seriously, I do like to try to take a peek at what it is I’m posting and so I did pull up each of the links you sent before sending this reply. Some sites I viewed for maybe 30-60 seconds and others I got hooked on and stayed longer because curiosity got me on the stuff I hadn’t seen before! (Some sites I had seen before & some not).

(1) First I looked at: http://yeastconnection.com/

I’m honestly too tired to check the date that the book “The Yeast Connection” originally came out (by the early to mid 1990s I am guessing) and I’m pretty sure it got re-published after that --- but I read it long ago and it was amazing!!! In fact, I even previously posted about that book on June 4, 2008 in my “Alternative Medicine Is Amazing!” post! However, I had not seen the website associated with “The Yeast Connection” book. I had heard about the book via the “Endometriosis Association” and that was when I had read the book (sometime in the 1990s but I remember it all these years later because it was so good). So I am familiar with Dr. Crook’s theories on candidiasis (yeast) and it is fascinating stuff!!! I’m so glad you sent me the website that is associated with the book. I can’t wait to have time for looking through the website. (I was truly only on the site for seconds once I verified it was, in fact, connected with Dr. William Crook)."


Jeanne

Jeanne said...

Deirdre, (Part 2A): I looked at 2 sites you sent that mentioned ribose. Since I can’t do ads for specific products or supplements in my post (for liability and all sorts of reasons), I’m going to publish your comments intact & readers who choose to do so can browse through the testimonials on the one site you sent... that looked like basically testimonials/ads for a brand of ribose (?) from what I saw in my speed reading. Since you graciously provided a site for people to investigate for themselves, I will refer them to it - listed in your comment -(somewhere above mine) for info on supplement called ribose. (I can’t run ads in comment boards per my 6/29/08 post: Endo Blog: Ground Rules for Comments, Google, & Ad Sense PLUS My Anticipated Response Time for Comments. It’s really hard for me to do anything that could be construed as plugging a specific company/brand/treatment, as you can imagine, in my comments back in this area of the blog. See above posts for more details. I could be in trouble for not following Goggle’s AdSense regulations for advertising & I could lose my “BlogSpot” blog altogether. On the other hand, I’m not going to censor your post that listed numerous helpful sites... because most of them are not commercial in nature. So if someone wants to refer to your comments for more info on both brands of ribose, they are more than welcome to but I am not comfortable listing the one specific testimonial/ad link you gave in this reply. I’m OK with publishing your comment to this post with the testimonial link in it this time because I don’t want anyone missing out on the interesting links you’ve sent & my “ground rules” weren’t even posted until after your comment so you had no idea I couldn’t post it here. When you post future comments, can you please do something very helpful? For a case like this could you share your success with the item itself (i.e. ribose) that you have found helpful but WITHOUT including a link that is a form of ad (i.e. testimonials)? For example I had never heard if ribose & I’m always open to learning about the options available for something like that which is new to me & probably many of my blog’s readers. The thing is that I run Google ads on my blog & this blog is a BlogSpot site. So if I don’t follow their guidelines & mind my Ps and Qs by not running competing ads within comment fields that are posted as comment but amount to ads... they could shut down my blog! Thanks for telling me about ribose. I had never heard of it. You must do lots of research.

Jeanne

Jeanne said...

Deirdre, (Part 2B) The 2nd site you sent that mentioned ribose actually wasn’t a homepage. The one you sent me was another ribose link BUT I found the homepage and it was really a fairly distant branch off of and it was, in my opinion, totally kosher to post the homepage it came from. In fact the homepage that was quite distantly connected to the ribose ad you sent (from the page you sent which included the extensions on the end of the website name) was fantastic once I clicked back a few times/removed the ending of the naming convention to see what would come up. This ‘ribose link’ you sent me (which was loaded with ads and I didn’t think initially I’d be able to publish the comment because of that and still comply with the agreement I have with my advertisers) was actually connected (by a few clicks) to a homepage that is really fantastic with info on fibromyalgia and chronic fatigue syndrome (CFS):

http://www.fibromyalgiasupport.com/

I read on it that the above site is listed as the “World's Largest Fibromyalgia Site” with “2,500+ Fibromyalgia Articles & Abstracts”. (I took just a sneak peek at their site). I noticed it had a message board. I didn’t have time for creating a login for the msg board but I could pull it up get a peek at the subjects people posted on and it looked interesting. It also it had chat rooms on one of the tabs on the homepage for this fibro and CFS website. It also had a spot to plug in city and zip code to search for local support groups (cool!) The whole site looks quite loaded w/lots of info. If I had time I’d read it more myself but I don’t. After reviewing the site briefly, I can comfortably pass along the above-listed main homepage just fine.

Judging by the high volume of posts dated on their message board the day I looked alone, I can see it must be a busy message board for fibro/chronic fatigue syndrome.

Jeanne said...

Deirdre, (Part 3 - last part for now!!!) Moving on... Please see the DISCLAIMER at the top of my homepage as this upcoming site deals w/specific doctors.

I do remember seeing this site:

http://www.co-cure.org/Good-Doc.htm

...a few years ago. I browsed it after you sent it but don’t recall ever posting on board (I was not diagnosed with w/fibromyalgia officially yet when I had seen it). It looks like a link, though. From their site, here is a description of what they provide:
Web Co-Cure E-Mail List and Web site
Co-operate and Communicate for a Cure
The name "Co-Cure" stands for
"Co-operate and Communicate for a Cure." The mailing list has been established with the goal of furthering co-operative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).
(4) The Endometriosis Research Center (ERC) site is great. The message board you mentioned is:
http://erc.activeboard.com/
I believe for ERC that:
http://www.endocenter.org/
…is their main site or homepage. It’s a great site!
That main site/homepage was actually listed in my links post on June 2nd: Endometriosis and Endo-related Links You May Want to Check Out
Finally, I personally think it’s easy to get overwhelmed w/so much on net now on endo. So thanks for the great info, Deirdre!!!

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